Handbook of Interdisciplinary Treatments for Autism Spectrum Disorder [1st ed.] 978-3-030-13026-8;978-3-030-13027-5

Table of contents :
Front Matter ....Pages i-xv
Interdisciplinary Teams and Autism Spectrum Disorder (Michelle S. LeMay, Robert D. Rieske, Samantha Johnston)....Pages 1-8
Evidenced-Based Practices (Costanza Colombi, Giacomo Vivanti, Sally Rogers)....Pages 9-28
Comorbidity and the Need for Interdisciplinary Treatments (Johnny L. Matson, Claire O. Burns)....Pages 29-47
Ethical Considerations in Interdisciplinary Treatments (David J. Cox)....Pages 49-61
Legal Considerations in Interdisciplinary Treatments (Maria C. McGinley)....Pages 63-87
Interdisciplinary Diagnostic Evaluations (Brett A. Enneking, Anna C. Merrill, Elesia N. Hines, Christine M. Raches, Kelly A. Rostin, Rebecca H. McNally Keehn)....Pages 89-110
Applied Behavior Analysis and Related Treatments (Heidi R. Fisher, Cynthia L. Pierre, Noha F. Minshawi, Jill C. Fodstad)....Pages 111-129
Interdisciplinary Treatment for Pediatric Feeding Disorders (Cy Nadler, Laura Slosky, Christina Low Kapalu, Brenda Sitzmann)....Pages 131-150
Interdisciplinary Treatment for Pediatric Elimination Disorders (Christina Low Kapalu, Cy Nadler, Natalie Brei, Laura Slosky)....Pages 151-172
Development of the Interdisciplinary Treatment Team (Christine M. Raches, Rebecca Mc Nally Keehn, Jill C. Fodstad, Noha F. Minshawi)....Pages 173-188
Psychology (Lindsey W. Williams, Hillary H. Bush, Lauren Fishbein)....Pages 189-206
Primary Care Physicians/Subspecialty Pediatricians (Julie N. Youssef, Dana C. Won, Heidi M. Feldman)....Pages 207-223
Speech-Language Pathology (Stacy S. Manwaring, Angela B. Barber)....Pages 225-257
Occupational and Physical Therapy (Bryan M. Gee, Amy Nwora)....Pages 259-277
Dietetics/Nutrition (Allisha M. Weeden)....Pages 279-296
Gastroenterology (Sylvia Y. Ofei, George J. Fuchs)....Pages 297-307
Oral Health (Leciel K. Bono, Ellen J. Rogo, Rachelle Williams)....Pages 309-333
School Psychology and Education Professionals (Aaron J. Fischer, Erica Lehman, Natalie Jensen, Heather S. Davis)....Pages 335-354
Vocational Interventions (Paul Wehman, Carol Schall, Josh Taylor, Laruen Avellone, Hannah Seward)....Pages 355-374
Neurologic Music Therapy (Michael H. Thaut, Thenille Braun Janzen)....Pages 375-395
Recreational Therapy (Kari Kensinger)....Pages 397-403
Social Work (Susan Elswick, Susan Neely-Barnes, Laura Casey, Loretta Rudd)....Pages 405-421
Family Therapy (Jake Johnson)....Pages 423-444
Family Inclusion (Ashley E. Bordelon, Rachel L. Bradley)....Pages 445-463
Back Matter ....Pages 465-479

Citation preview

Autism and Child Psychopathology Series Series Editor: Johnny L. Matson

Robert D. Rieske Editor

Handbook of Interdisciplinary Treatments for Autism Spectrum Disorder

Autism and Child Psychopathology Series Series Editor: Johnny L. Matson, Department of Psychology Louisiana State University Baton Rouge, LA, USA

More information about this series at http://www.springer.com/series/8665

Robert D. Rieske Editor

Handbook of Interdisciplinary Treatments for Autism Spectrum Disorder

Editor Robert D. Rieske Department of Psychology Idaho State University Pocatello, ID, USA

ISSN 2192-922X     ISSN 2192-9238 (electronic) Autism and Child Psychopathology Series ISBN 978-3-030-13026-8    ISBN 978-3-030-13027-5 (eBook) https://doi.org/10.1007/978-3-030-13027-5 © Springer Nature Switzerland AG 2019 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Acknowledgments

I would like to thank my students in the ISU Collaboration for Autism Research, Education, and Support for their hard work, dedication, and passion to serve this community. It is never easy work but it is always worthwhile. I would also like to thank my wife, Lisa, for her never ending support and dedication to me, our family, and the work. This handbook is dedicated to Brent. Without you, none of this would be possible.

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Contents

Interdisciplinary Teams and Autism Spectrum Disorder������������������    1 Michelle S. LeMay, Robert D. Rieske, and Samantha Johnston Evidenced-Based Practices��������������������������������������������������������������������    9 Costanza Colombi, Giacomo Vivanti, and Sally Rogers Comorbidity and the Need for Interdisciplinary Treatments������������   29 Johnny L. Matson and Claire O. Burns Ethical Considerations in Interdisciplinary Treatments��������������������   49 David J. Cox Legal Considerations in Interdisciplinary Treatments����������������������   63 Maria C. McGinley Interdisciplinary Diagnostic Evaluations��������������������������������������������   89 Brett A. Enneking, Anna C. Merrill, Elesia N. Hines, Christine M. Raches, Kelly A. Rostin, and Rebecca H. McNally Keehn Applied Behavior Analysis and Related Treatments��������������������������   111 Heidi R. Fisher, Cynthia L. Pierre, Noha F. Minshawi, and Jill C. Fodstad Interdisciplinary Treatment for Pediatric Feeding Disorders ����������   131 Cy Nadler, Laura Slosky, Christina Low Kapalu, and Brenda Sitzmann Interdisciplinary Treatment for Pediatric Elimination Disorders����������������������������������������������������������������������������   151 Christina Low Kapalu, Cy Nadler, Natalie Brei, and Laura Slosky Development of the Interdisciplinary Treatment Team����������������������   173 Christine M. Raches, Rebecca Mc Nally Keehn, Jill C. Fodstad, and Noha F. Minshawi Psychology����������������������������������������������������������������������������������������������   189 Lindsey W. Williams, Hillary H. Bush, and Lauren Fishbein Primary Care Physicians/Subspecialty Pediatricians������������������������   207 Julie N. Youssef, Dana C. Won, and Heidi M. Feldman vii

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Speech-Language Pathology ����������������������������������������������������������������   225 Stacy S. Manwaring and Angela B. Barber Occupational and Physical Therapy����������������������������������������������������   259 Bryan M. Gee and Amy Nwora Dietetics/Nutrition����������������������������������������������������������������������������������   279 Allisha M. Weeden Gastroenterology������������������������������������������������������������������������������������   297 Sylvia Y. Ofei and George J. Fuchs Oral Health ��������������������������������������������������������������������������������������������   309 Leciel K. Bono, Ellen J. Rogo, and Rachelle Williams School Psychology and Education Professionals��������������������������������   335 Aaron J. Fischer, Erica Lehman, Natalie Jensen, and Heather S. Davis Vocational Interventions������������������������������������������������������������������������   355 Paul Wehman, Carol Schall, Josh Taylor, Laruen Avellone, and Hannah Seward Neurologic Music Therapy��������������������������������������������������������������������   375 Michael H. Thaut and Thenille Braun Janzen Recreational Therapy����������������������������������������������������������������������������   397 Kari Kensinger Social Work��������������������������������������������������������������������������������������������   405 Susan Elswick, Susan Neely-Barnes, Laura Casey, and Loretta Rudd Family Therapy��������������������������������������������������������������������������������������   423 Jake Johnson Family Inclusion������������������������������������������������������������������������������������   445 Ashley E. Bordelon and Rachel L. Bradley Index��������������������������������������������������������������������������������������������������������  465

Contents

Contributors

Laruen  Avellone Rehabilitation Research and Training Center, Virginia Commonwealth University, Richmond, VA, USA Angela B. Barber  Department of Communicative Disorders, University of Alabama, Tuscaloosa, AL, USA Leciel  K.  Bono Department of Dental Hygiene, Idaho State University, Pocatello, ID, USA Ashley  E.  Bordelon Department of Behavioral Psychology, Kennedy Krieger Institute, Baltimore, MD, USA Rachel L. Bradley  Department of Psychology, Louisiana State University, Baton Rouge, LA, USA Natalie Brei  Catholic Social Services of Southern Nebraska, Lincoln, NE, USA Claire  O.  Burns Department of Psychology, Louisiana State University, Baton Rouge, LA, USA Hillary  H.  Bush Learning and Emotional Assessment Program (LEAP), Massachusetts General Hospital, Boston, MA, USA Harvard Medical School, Boston, MA, USA Laura  Casey Instruction and Curriculum Leadership, Applied Behavior Analysis, University of Memphis, Memphis, TN, USA Costanza Colombi  University of Michigan, Ann Arbor, MI, USA David  J.  Cox Behavioral Pharmacology Research Unit, Department of Psychiatry & Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA Heather S. Davis  Pingree Autism Center for Learning, Salt Lake City, UT, USA Susan  Elswick Department of Social Work, University of Memphis, Memphis, TN, USA Brett  A.  Enneking Riley Child Development Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA ix

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Heidi  M.  Feldman Division of Developmental-Behavioral Pediatrics, Department of Pediatrics, Stanford University School of Medicine, Stanford, CA, USA Aaron J. Fischer  University of Utah, Salt Lake City, UT, USA Lauren Fishbein  Nationwide Children’s Hospital, Columbus, OH, USA Heidi R. Fisher  Christian Sarkine Autism Treatment Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Psychiatry, Indiana University School of Medicine, Indianapolis, IN, USA Jill C. Fodstad  Christian Sarkine Autism Treatment Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Psychiatry, Indiana University School of Medicine, Indianapolis, IN, USA George  J.  Fuchs Department of Pediatrics, Division of Pediatrics Gastroenterology, Hepatology and Nutrition, University of Kentucky College of Medicine/Kentucky Children’s Hospital, Lexington, KY, USA Bryan M. Gee  Idaho State University, Pocatello, ID, USA Elesia  N.  Hines Riley Child Development Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA Thenille Braun Janzen  Music and Health Science Research Center, Faculty of Music, University of Toronto, Toronto, ON, Canada Natalie Jensen  University of Utah, Salt Lake City, UT, USA Jake  Johnson Psychology, Counseling, and Family Therapy, Wheaton College, Wheaton, IL, USA Samantha  Johnston Department of Psychology, Idaho State University, Pocatello, ID, USA Christina Low Kapalu  Division of Developmental and Behavioral Sciences, Children’s Mercy Kansas City, Kansas City, MO, USA Department of Pediatrics, University of Missouri  – Kansas City School of Medicine, Kansas City, MO, USA Division of Gastroenterology, Hepatology, and Nutrition, Children’s Mercy Kansas City, Kansas City, MO, USA Rebecca Mc Nally Keehn  Riley Child Development Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA

Contributors

Contributors

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Kari Kensinger  Therapeutic Recreation of Nebraska, Omaha, NE, USA Erica Lehman  University of Utah, Salt Lake City, UT, USA Michelle  S.  LeMay Department of Psychology, Idaho State University, Pocatello, ID, USA Stacy  S.  Manwaring Department of Communication Sciences and Disorders, University of Utah, Salt Lake City, UT, USA Johnny L. Matson  Department of Psychology, Louisiana State University, Baton Rouge, LA, USA Maria C. McGinley  Mayerson and Associates, New York, NY, USA Rebecca  H.  McNally  Keehn Riley Child Development Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA Anna  C.  Merrill Riley Child Development Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA Noha  F.  Minshawi Christian Sarkine Autism Treatment Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Psychiatry, Indiana University School of Medicine, Indianapolis, IN, USA Cy Nadler  Division of Developmental and Behavioral Sciences, Children’s Mercy Kansas City, Kansas City, MO, USA Department of Pediatrics, University of Missouri  – Kansas City School of Medicine, Kansas City, MO, USA Susan Neely-Barnes  Department of Social Work, University of Memphis, Memphis, TN, USA Amy Nwora  D’Youville College, Buffalo, NY, USA Sylvia  Y.  Ofei Department of Pediatrics, Division of Pediatrics Gastroenterology, Hepatology and Nutrition, University of Kentucky College of Medicine/Kentucky Children’s Hospital, Lexington, KY, USA Cynthia  L.  Pierre Christian Sarkine Autism Treatment Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Psychiatry, Indiana University School of Medicine, Indianapolis, IN, USA

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Christine M. Raches  Riley Child Development Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA Robert  D.  Rieske Department of Psychology, Idaho State University, Pocatello, ID, USA Sally Rogers  University of California, Davis, CA, USA Ellen  J.  Rogo Department of Dental Hygiene, Idaho State University, Pocatello, ID, USA Kelly  A.  Rostin Riley Child Development Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA Loretta Rudd  Child Development and Family Studies, University College, University of Memphis, Memphis, TN, USA Carol  Schall Rehabilitation Research and Training Center, Virginia Commonwealth University, Richmond, VA, USA School of Education, Autism Center for Excellence, Virginia Commonwealth University, Richmond, VA, USA Hannah  Seward Rehabilitation Research and Training Center, Virginia Commonwealth University, Richmond, VA, USA Brenda  Sitzmann  Department of Hearing and Speech, Children’s Mercy Kansas City, Kansas City, MO, USA Laura  Slosky Division of Developmental and Behavioral Sciences, Children’s Mercy Kansas City, Kansas City, MO, USA Department of Pediatrics, University of Missouri  – Kansas City School of Medicine, Kansas City, MO, USA Division of Gastroenterology, Hepatology, and Nutrition, Children’s Mercy Kansas City, Kansas City, MO, USA Josh  Taylor  School of Education, Autism Center for Excellence, Virginia Commonwealth University, Richmond, VA, USA Michael H. Thaut  Music and Health Science Research Center, Faculty of Music, University of Toronto, Toronto, ON, Canada Giacomo Vivanti  Drexel University, Philadelphia, PA, USA Allisha  M.  Weeden  Dietetic Programs, Idaho State University, Pocatello, ID, USA

Contributors

Contributors

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Paul  Wehman Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Richmond, VA, USA Rehabilitation Research and Training Center, Virginia Commonwealth University, Richmond, VA, USA Lindsey  W.  Williams TEACCH Autism Program, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA Rachelle Williams  Department of Dental Hygiene, Idaho State University, Pocatello, ID, USA Dana C. Won  Division of Developmental-Behavioral Pediatrics, Department of Pediatrics, Stanford University School of Medicine, Stanford, CA, USA Julie  N.  Youssef Division of Developmental-Behavioral Pediatrics, Department of Pediatrics, Stanford University School of Medicine, Stanford, CA, USA

About the Editor

Robert  D.  Rieske, Ph.D.  is an Assistant Professor in the Department of Psychology at Idaho State University in Pocatello, Idaho. His research focuses on the identification, assessment, and treatment of individuals with intellectual and developmental disabilities with a special emphasis in autism spectrum disorder and comorbid psychopathology. His research includes collaboration with several areas of study outside of psychology to provide a more interdisciplinary team approach to assessment and treatment and more effective services for this unique population. He currently serves as an associate editor for the Review Journal of Autism and Developmental Disorders (Springer) and founding member of the ISU Collaboration for Autism Research, Education, and Support.

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Interdisciplinary Teams and Autism Spectrum Disorder Michelle S. LeMay, Robert D. Rieske, and Samantha Johnston

A Brief History of ASD In 1911, Eugen Bleuler first used the term “autism” to describe an individual’s self-absorbed retreat into an idiosyncratic mental state of fantasy which was a component of the presentation of schizophrenia. Leo Kanner began to use the term in 1943 to describe a group of individuals who engaged in severe “autistic aloneness” which was believed to be an early onset of schizophrenic symptoms. Kanner and other researchers later began to differentiate the two disorders noting significant differences in outcomes and early developmental trajectories. As researchers began to understand “autism” as a unique condition that included a deviation from typical neurodevelopment, rather than a symptom of schizophrenia, they were able to begin to make clear distinctions between the two disorders (Goldstein & Ozonoff, 2009). Even from his initial observations, Kanner began to outline the disorder and described core symptoms that remain in the diagnostic criteria today. During the time of Kanner’s research, Hans Asperger, a German researcher, was also investigating behaviors associated with autism. Unfortunately, because his work was written in M. S. LeMay · R. D. Rieske (*) · S. Johnston Department of Psychology, Idaho State University, Pocatello, ID, USA e-mail: [email protected]

German, Asperger’s research went unnoticed for almost three decades until it was translated into English. The diagnostic criteria of autism were first noted in the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) which included Asperger’s disorder (DSM-III; APA, 1980). While there were several changes in the autism classifications between editions, in the current DSM (DSM-5; APA, 2013), the disorder is conceptualized and classified as a spectrum of symptom severity that encompassed both Asperger’s disorder and autism as autism spectrum disorder or ASD. With the changes in the DSM-5, clinicians now provide a severity rating that can describe the level of support needed. The DSM-5 brought along many other changes as well including a change in diagnostic criteria. Diagnostic criteria now emphasize deficits in social communication and restricted/repetitive behaviors/interests (DSM-5; American Psychiatric Association, 2013). Individuals must exhibit impairments in a total of three areas involving social communication which include social and emotional reciprocity, nonverbal social communication, and deficits in developing and maintaining social relationships. Individuals also must exhibit impairments in at least two restricted/repetitive behaviors or interests such as stereotyped/repetitive motor behaviors, over-adherence to rituals or routines, and restricted interest in objects or subject matter, as well as sensory abnormalities such as over- or

© Springer Nature Switzerland AG 2019 R. D. Rieske (ed.), Handbook of Interdisciplinary Treatments for Autism Spectrum Disorder, Autism and Child Psychopathology Series, https://doi.org/10.1007/978-3-030-13027-5_1

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under-reactivity to different sensory input. Additionally, individuals must also experience significant impairments in areas of adaptive functioning (DSM-5; American Psychiatric Association, 2013). Along with changes to diagnostic criteria, the DSM-5 also includes a series of specifiers to describe impairments that frequently develop alongside autism. Some of these impairments include intellectual disability, language impairments, or other neurodevelopmental, mental, or behavioral disorders as well as catatonia. The current edition also eliminated the age limitation allowing more individuals to meet diagnostic criteria as long as impairments can be tied to the developmental period. To determine if an individual meets diagnostic criteria for an ASD diagnosis, a variety of measures and assessments are often completed by the individual, family members, caretakers, and clinicians. A few of the measures that are often used include observational measures, caregiver or clinician measure of observed behaviors, cognitive measures of intellectual functioning, and adaptive behavior measures. In the treatment of ASD, there are often diverse and extensive options which include evidence-­ based treatments. Evidence-based treatments have been shown to improve deficits in various areas including adaptive, cognitive, and social functioning. These treatments gain information and evidence regarding their effectiveness through their testability and are designed for a specific population or disorder. For example, intensive behavioral interventions such as applied behavior analysis have been shown to improve performance on measures of intellectual abilities, language skills, and adaptive functioning with individuals diagnosed with ASD (Howard, Sparkman, Cohen, Green, & Stanislaw, 2005). These interventions break down complex behaviors into simple tasks for repeated trials. During each trial, the client is encouraged to complete the task through the use of positive reinforcement (Lovaas, 1987). These treatments can often require significant time commitment (e.g., 30–40  h per week) but bear beneficial outcomes for individuals with ASD. While beneficial outcomes can occur across a range of ages, an individual can derive the great-

M. S. LeMay et al.

est benefit from treatment when they are diagnosed early. Early diagnosis allows for early treatment, granting improved outcomes later in life. Evidence-based treatments for ASD are often geared toward infants and young children, giving these populations more opportunities to improve functioning. There are few treatments that are centered on adolescents and adults, putting these individuals at a disadvantage compared to younger populations (Bishop-Fitzpatrick, Minshew, & Eack, 2013). Early diagnosis and treatment can allow for greater improvements across the life span by targeting those periods of sensitive and critical development. There are often many different disciplines that are involved in early diagnosis and treatment of ASD. While psychologists play an important role, there are other types of clinicians that can also have an influence on the diagnosis of an individual with ASD. The best clinical practice recommends a multi-method, multi-informant approach to assessment which means administering assessments involving cognitive abilities, language skills, and adaptive behaviors. Informant report is included in the multi-informant approach and can oftentimes consist of reports from caregivers, teachers, speech-language pathologists, occupational therapists, and many other disciplines. While all of the disciplines represented in this book are not required to make a diagnosis of ASD, their various roles in the treatment of ASD are crucial, and information gathered during the evaluation process can help in the development and individualization of the treatment plan. The growth of interdisciplinary teams in the assessment and treatment of ASD has greatly improved the overall outcomes of individuals on the spectrum and their families. This focus on cross-­discipline teamwork with the child and family at the center of the team is at the heart of this handbook.

What Is an Interdisciplinary Team? Some professionals that work with individuals on the spectrum do so within their own practice and do not interact with other professionals outside of their field of work; this is referred to as

Interdisciplinary Teams and Autism Spectrum Disorder

single-­disciplinary, mono-disciplinary, or intradisciplinary work (Iordache, 2010; Jensenius, 2012; Nicolescu, 2005). On many occasions, intradisciplinary work can be the best form of treatment, such as treating a medical condition or providing psychotherapy for a psychological disorder. However, because the treatment of ASD often includes the individual receiving services from professionals such as psychologists, occupational therapists (OT), physical therapists (PT), speech/language pathologists (SLP), special education teachers, and physicians, there tends to be some level of overlap among the professions. The disciplines are separated based on the extent and type of interaction disciplines have with one another. The first level of interaction cited in the literature is referred to as multidisciplinary. Although there is no exact consensus as to the true definition, multidisciplinarity occurs when there are two or more professionals that provide their own service and do not interact with one another, such as a PT focusing on helping the child learn how to write letters appropriately and a special education teacher providing extra assignments for working on writing (Choi & Pak, 2006). It is important to note that the different professions may be focusing on the same area of concern, but the primary defining factor is that these professionals are only providing interventions within their area of training and do not interact with one another. In our experience in working with families, this tends to be the most common level of services that families are receiving. Each discipline is working within their own independent disciplines with little-to-no communication between disciplines. Cross-disciplinary is a type of team that is less cited in the literature. That being said, cross-­ disciplinarity is considered to be when one discipline takes the viewpoint of another discipline or profession (Jensenius, 2012). In the previous example with the PT and special education teacher, this would be similar to a teacher giving extra assignments to work on while also using PT principles or training to help the child improve their writing abilities. Again, no interaction exists between various disciplines.

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The last two team types cited within the literature are interdisciplinary and transdisciplinary. Interdisciplinary refers to teams consisting of two or more professions that work with one another for a common goal and provide their own expertise but maintain their own perspective relevant to their training (Jensenius, 2012). Again, using the previous example, the PT and special education teacher would identify a joint goal and help one another to reach these goals by having the teacher assist the child with their pencil grip, and the PT may include similar practice writing exercises. Transdisciplinary is similar to interdisciplinary with the exception of conceptualization (Choi & Pak, 2006). More specifically, the different disciplines aim to conceptualize the client and the problems from the same viewpoint and will create their interventions based on that singular perspective. Figure  1 details the different types of disciplinary teams (Jensenius, 2012). Interdisciplinarity first gained popularity shortly after World War II when fields of study such as biochemistry and psycholinguistics came about (Stember, 1991). Interdisciplinarity was most prominent in academic settings such as universities in which those receiving higher education were encouraged to work within other fields and share their knowledge. It wasn’t until the past few decades that interdisciplinary teams gained popularity in treating patients. These teams can be effective for any disorder, medical or otherwise, in which multiple professions will need to be used in order to create a common goal (Blackmore & Persaud, 2012). For example, individuals with an intellectual disability, cerebral palsy, or ASD can all benefit from being part of an integrated team. Interdisciplinary teams are one of the most effective types of teams in the treatment of ASD, with multiple publications explaining why (Cascio, Woynaroski, Baranek, & Wallace, 2016). By integrating disciplines and having them work toward a common goal, the individual will often see an overall improvement above and beyond what they would see were they not being treated on an interdisciplinary team and improvements are significantly more beneficial than multidisciplinary teams (Gerdts et al., 2018). Within

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Fig. 1  Visual depiction of the different types of disciplines from Jensenius (2012)

these teams, the treatment of individuals with ASD often works with disciplines including psychology, occupational therapy, physical therapy, speech therapy, applied behavior analysts, feeding specialists, nursing, general physicians, and special education to name a few. The purpose of the current handbook is to discuss those and other common disciplines that are often part of the interdisciplinary team, the unique role that they bring to the team, and how these teams can effectively work together in the treatment of ASD.

Interdisciplinary Teams in Action The ability for interdisciplinary teams to be effective often depends on the willingness of various disciplines to learn from one another and to focus on the family as being the primary “expert” on their individual child’s behavior and recognizing that caregivers are the agents of change. It is through them that the various disciplines work to promote learning and improvement in their child. Various models have been developed across the globe that have shown the effectiveness of these interdisciplinary teams and improved outcomes. As an example, Chapter “Legal Considerations in Interdisciplinary Treatments” of this handbook focuses on the importance of interdisciplinary work and communication in the assessment of ASD and the unique components that various disciplines bring to the table to aid in the development of an appropriate treatment plan. This interdisciplinary process should be the standard of care in the assessment of ASD; however, the lack of such teams (especially in rural areas) has led to evaluations missing important components necessary to develop appropriate treatment plans

or the complete lack of a valid evaluation. In the latter case, these individuals are often diagnosed by primary care physicians and bypass the comprehensive evaluation which leaves families to test various interventions through trial-and-error. The importance of a comprehensive interdisciplinary diagnostic evaluation cannot be understated. The goal of the evaluation should not be to make a diagnosis, but rather to develop an individualized treatment plan that takes into account the strengths and weaknesses, the available supports, and other pertinent factors of the individual and family in the context of the availability of resources. The effectiveness of interdisciplinary teams does not end with the diagnostic evaluation. The various disciplines that are represented on an interdisciplinary team might differ between evaluation and treatment depending on the individual needs of the family. It is also not uncommon for the team members to fluctuate throughout the treatment process to meet the changing needs of the individual and family. The importance of interdisciplinary teamwork is crucial to the effective treatment of ASD symptoms as highlighted in Chapters “Interdisciplinary Diagnostic Evaluations, Applied Behavior Analysis and Related Treatments, and Interdisciplinary Treatment for Pediatric Feeding Disorders” of this handbook. The differing roles and expertise of team members across disciplines vary depending on the needs of the client; however, the importance of effective interdisciplinary ­communication is paramount to ensure that the goals of one discipline do not compete or interfere with the goals of another discipline (which often is the case in other models of treatment). It is also important to recognize that the expertise

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of various disciplines may be the focus of treatment at some points and other disciplines at other points. For example, in feeding therapy (see Chapter “Applied Behavior Analysis and Related Treatments”), the “primary” discipline may change over time due to the needs of the client; the initial focus of therapy may be on developing the muscles involved in eating or overcoming oral sensory sensitivities related to eating, and treatment focus may vary between occupational therapists and speech-language pathologists. As therapy progresses and the needs of the individual change, the focus over time may shift toward behavioral methods provided by the psychologist. The ability of the interdisciplinary team to communicate these changes over time and adapt to the needs of the client greatly improve treatment efficacy and overall outcomes.

caregivers are often unsure or unaware of what steps they should be taking. Caregivers may have had their pediatrician complete an ASD screener at their 24-month checkup and identified a possible concern for autism symptoms. This physician may or may not refer them to a qualified psychologist for further testing, but there is an average wait period of 13 months for a diagnosis, with even longer wait periods in rural areas (Daniels, Schwartz, Albert, Du, & Wall, 2017). When receiving these results, the majority of families will receive a written report, but less than half of families receive further assistance from the psychologist as to what the next steps should be to assist their child (Crane, Chester, Goddard, Henry, & Hill, 2016). Most families are unaware of what services are available to help their child and are even less aware of how to go about receiving these services. Many caregivers will choose to identify resources through online at websites; however, several websites that are intended to provide health-related information for the treatment of ASD do not provide evidence-­based supported information or do not include research support for their claims. This can cause caregivers to feel confused or attempt to have their child engage in non-evidence-based treatment (Grant, Rodger, & Hoffmann, 2015) many of which are not helpful and some of which could be potentially harmful. Perception of the diagnosis also can have a direct effect on parent’s decision-making toward treatment, and those who deem it as a “serious” diagnosis are more likely to actively seek treatment. Following a diagnosis, caregivers will typically go through a series of stages in which they first begin to take all the advice from experts due to a lack of confidence or knowledge in the area. They then start making decisions on the type of treatment to provide their child with and start to discover what is available for their child based on their geographic location. In the final stage, many caregivers become the “expert” in what ­treatments are beneficial to their children and are more knowledgeable about the treatments available (Edwards, Brebner, McCormack, & MacDougall, 2018). It is often in this final stage that interdisci-

Struggles and Benefits of Interdisciplinary Teams ASD can first be effectively diagnosed as young as 12 months of age. With early identification and implementation of services, it is argued that many of the symptoms associated with the disorder can be prevented and those that are present can be effectively treated to reduce negative impact on functioning (Costanzo et  al., 2015; Zwaigenbaum, Bryson, & Garon, 2013). However, more often than not, there is a significant lag between the initial suspicion of symptoms to diagnosis and treatment; current estimates suggest an average of 3–5 years between the two (Gordon-Lipkin, Foster, & Peacock, 2016). This lag is often greater for ethnic minorities or families with lower socioeconomic status (Yingling, Hock, & Bell, 2018). Many barriers to diagnosis and treatment include caregivers denying symptoms, physicians not identifying or screening appropriately, and difficulty receiving a diagnosis due to limited availability of psychologists or cost of testing, and once the child receives a diagnosis, many families struggle with choosing appropriate treatments. One of the primary issues with seeking treatment for a child with symptoms of ASD is that

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plinary teams are created to treat a child with ASD. Unfortunately, as the burden for determining appropriate care is often placed solely on the caregiver, it is most common for caregivers to never actually make it to the final “expert” stage. Families often continue to struggle to receive services simply due to a lack of knowledge in the area of disability services, even more so regarding the existence of interdisciplinary teams. The process of forming an interdisciplinary team for the treatment of their child can be a difficult process that can be limited by geographic region (e.g., urban vs. rural) and access to resources. Furthermore, one of the greatest struggles families will experience when they begin attending these interdisciplinary teams is understanding all of the jargon among the various disciplines. Although this is something that caregivers struggle with most, other professionals will often experience difficulty with understanding the terminology of different professions as well. It has also been shown that most commonly, the professional who holds the highest degree on the interdisciplinary team is the one who holds the most power and authority. This leads to families feeling that their voice is not heard or that they are not provided the opportunity to meaningfully contribute (Graybill et al., 2016). Although there are some significant difficulties families experience in implementing interdisciplinary teams, they are greatly outweighed by the benefits. Within an interdisciplinary perspective of integrative care, the focus is on the client and therefore provides the child with a joint effort in assessing, evaluating, and planning client care, meaning that by completing assessments within an integrated team, the family is provided a synthesized description of their child’s functioning from several perspectives with many different forms of assessment (Xyrichis & Ream, 2008). By having a well-rounded evaluation which often includes several recommendations, the family has a greater understanding of what difficulties their child may be experiencing, but they are also provided with piece of mind in knowing that they have the most comprehensive assessment possi-

ble. Additionally, by having the interdisciplinary team work together, the results are synthesized such that the providers are able to determine what may be primary symptoms and what things are likely to be more secondary as a result of the primary symptoms, which may not have been identified otherwise. Within interdisciplinary teams, when the team successfully involves the family, it is mutually beneficial. By understanding and viewing the caregiver as the “expert” in their child, the interdisciplinary team benefits by learning more about the child’s behaviors, functioning, and symptoms in the home and in the community that they may not have otherwise known, which can become exceptionally helpful when considering barriers to treatment. The caregivers benefit by being able to actively participate in the treatment process and are better able to provide input about what they perceive to be the most problematic areas that should be targeted. Additionally, by exposing caregivers to the team, they are better equipped to learn the terminology and the process of treatment. Lastly, when caregivers are engaged in all phases of treatment, they have a better understanding of treatment goals and how to implement treatment and are more engaged in the process overall which leads to better outcomes for the child (Graybill et al., 2016).

Using This Handbook The development of an interdisciplinary team can be a challenging task. Unfortunately, the burden of development of these teams often falls on the caregiver (especially in rural areas) as the availability of active interdisciplinary teams often are centered in large metropolitan areas or universities. This handbook is meant to serve as a guide for both caregivers and clinicians alike in the development on interdisciplinary teams (see Chapters “Legal Considerations in Interdisciplinary Treatments and Interdisciplinary Treatment for Pediatric Elimination Disorders”) and the unique roles that each discipline plays in the interdisciplinary team. This includes the

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risk’ sibling studies. Neuroscience and Biobehavioral Reviews, 55, 627–635. https://doi.org/10.1016/j. neubiorev.2015.06.006 Crane, L., Chester, J.  W., Goddard, L., Henry, L.  A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 caregivers in the United Kingdom. Autism, 20(2), 153–162. https://doi. org/10.1177/1362361315573636 Daniels, J., Schwartz, J., Albert, N., Du, M., & Wall, D. P. (2017). The GapMap project: A mobile surveillance system to map diagnosed autism cases and gaps in autism services globally. Molecular Autism, 8(1), 55. https://doi.org/10.1186/s13229-017-0163-7 Edwards, A.  G., Brebner, C.  M., McCormack, P.  F., & MacDougall, C. J. (2018). From ‘Parent’ to ‘Expert’: How caregivers of children with autism spectrum disorder make decisions about which intervention approaches to access. Journal of Autism and Developmental Disorders, 48(6), 2122–2138. https:// doi.org/10.1007/s10803-018-3473-5 Gerdts, J., Mancini, J., Fox, E., Rhoads, C., Ward, T., Easley, E., & Bernier, R. A. (2018). Interdisciplinary team evaluation: An effective method for the diagnostic assessment of autism spectrum disorder. Journal of Developmental & Behavioral Pediatrics, 39(4), 271. References Goldstein, S., & Ozonoff, S. (2009). Historical perspective and overview. In S.  Goldstein, J.  A. Naglieri, & American Psychiatric Association. DSM-5 Task Force, & S. Ozonoff (Eds.), Assessment of autism spectrum disAmerican Psychiatric Association. (2013). Diagnostic orders. New York, NY: Guilford Press. and statistical manual of mental disorders: DSM-­ 5 (5th ed.). Washington, DC: American Psychiatric Gordon-Lipkin, E., Foster, J., & Peacock, G. (2016). Whittling down the wait time: Exploring models to Association. minimize the delay from initial concern to diagnosis American Psychiatric Association. Task Force on and treatment of autism spectrum disorder. Pediatric Nomenclature and Statistics, & American Psychiatric Clinics of North America, 63(5), 851. Association. Committee on Nomenclature and Statistics.  (1980). Diagnostic and statistical manual Grant, N., Rodger, S., & Hoffmann, T. (2015). Evaluation of autism-related health information on of mental disorders: DSM-III  (3rd ed.). Washington, the web. Journal of Applied Research in Intellectual DC: American Psychiatric Association. Disabilities, 28(4), 276–282. https://doi.org/10.1111/ Bishop-Fitzpatrick, L., Minshew, N.  J., & Eack, S.  M. jar.12127 (2013). A systematic review of psychosocial interventions for adults with autism spectrum disorders. Journal Graybill, E., Esch, R.  C., Vinoski, E., Truscott, S., Torres, A., Daniel, K., … Crimmins, D. (2016). of Autism and Developmental Disorders, 43, 687–694. Including the family member in interdisciplinBlackmore, G., & Persaud, D. D. (2012). Diagnosing and ary team meetings: Communication trend analyimproving functioning in interdisciplinary health care sis. Small Group Research, 47(1), 3–27. https://doi. teams. The Health Care Manager, 31(3), 195–207. org/10.1177/1046496415604028 https://doi.org/10.1097/HCM.0b013e3182619d48 Cascio, C. J., Woynaroski, T., Baranek, G. T., & Wallace, Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H. (2005). A comparison of intensive M. T. (2016). Toward an interdisciplinary approach to behavior analytic and eclectic treatments for young understanding sensory function in autism spectrum children with autism. Research in Developmental disorder. Autism Research, 9(9), 920–925. https://doi. Disabilities, 26(4), 359–383. org/10.1002/aur.1612 Choi, B. C. K., & Pak, A. W. P. (2006). Multidisciplinarity, Iordache, O. (2010). Polystochastic models for complexity. Berlin, Germany: Springer, 298pp, ISBN interdisciplinarity and transdisciplinarity in health 9783642106538. research, services, education and policy: 1. definitions, objectives, and evidence of effectiveness. Clinical Jensenius, A.  R. (2012). Disciplinarities: Intra, cross, multi, inter, Trans. Retrieved from http://www.arj. and Investigative Medicine. Medecine Clinique Et no/2012/03/12/disciplinarities-2/ Experimentale, 29(6), 351 Costanzo, V., Chericoni, N., Amendola, F. A., Casula, L., Lovaas, O.  I. (1987). Behavioral treatment and normal educational and intellectual functioning in young Muratori, F., Scattoni, M.  L., & Apicella, F. (2015). autistic children. Journal of Consulting and Clinical Early detection of autism spectrum disorders: From Psychology, 55, 3–9. retrospective home video studies to prospective ‘high

importance of family inclusion (see Chapter “Family Therapy”) as well as the inclusion of disciplines that are often neglected but can serve as crucial components for the interdisciplinary team. This handbook is also meant to be used as a guide by various disciplines to not only understand the crucial role that they play in an interdisciplinary team, but to also understand the roles of other disciplines. This better understanding of other disciplines often leads to enhancement of our treatments and interventions as disciplines learn to work alongside each other toward a shared goal. We hope that this handbook can be a tool that will be utilized to enhance the assessment and treatment of individuals with ASD and increase access to effective interdisciplinary teams across the globe.

8 Nicolescu, B. (2005). The transdisciplinary evolution of learning. Centre International de Recherches et d’Etudes Transdisciplinaires (CIRET), Paris. Retrieved from http://perso.club-internet.fr/nicol/ciret Stember, M. (1991). Advancing the social sciences through the interdisciplinary enterprise. The Social Science Journal, 28(1), 1–14. https://doi. org/10.1016/0362-3319(91)90040-B Xyrichis, A., & Ream, E. (2008). Teamwork: A concept analysis. Journal of Advanced Nursing, 61(2), 232–241. https://doi.org/10.1111/j.1365-2648.2007.04496.x

M. S. LeMay et al. Yingling, M. E., Hock, R. M., & Bell, B. A. (2018). Time-­ lag between diagnosis of autism spectrum disorder and onset of publicly-funded early intensive behavioral intervention: Do race–ethnicity and neighborhood matter? Journal of Autism and Developmental Disorders, 48(2), 561–571. https://doi.org/10.1007/ s10803-017-3354-3 Zwaigenbaum, L., Bryson, S., & Garon, N. (2013). Early identification of autism spectrum disorders. Behavioural Brain Research, 251, 133–146. https:// doi.org/10.1016/j.bbr.2013.04.004

Evidenced-Based Practices Costanza Colombi, Giacomo Vivanti, and Sally Rogers

Introduction Autism spectrum disorder (ASD) is a neurodevelopmental disorder that involves global impairments in social skills and in verbal and nonverbal communication, as well as the presence of stereotyped patterns of behaviors and interests (American Psychiatric Association, 2013). ASD affects approximately 1  in 68 children in the United States, according to the Center for Diseases Control (2009). ASD imposes an enormous burden on society including lifelong disability, high medical care, and increased mental health problems in caregivers. Evidence demonstrates that very early intervention delivered immediately after diagnosis during the first 3  years of life has higher impact on outcomes (Vivanti, 2015). Early intervention has been correlated with improvement in verbal and nonverbal skills, adaptive skills, and quality of life of caregivers (Koegel, Koegel, Ashbaugh, & Bradshaw, 2014). Since Lovaas’s pioneering work in the 1960s (Lovaas, 1981), many intervention models have C. Colombi (*) University of Michigan, Ann Arbor, MI, USA e-mail: [email protected] G. Vivanti Drexel University, Philadelphia, PA, USA S. Rogers University of California, Davis, CA, USA

been developed and empirically evaluated. Evidence-based early intervention models can be classified based on the principle of behavioral analysis (Koegel et al., 2014), developmental and relationship models (Wetherby et al., 2014), or a fusion of behavioral strategies and relationship-­ focused developmental models (Rogers et  al., 2012). Despite the implementation of a specific model, the National Research Council (2001) recommends intervention intensity of at least 25 h per week to be initiated as early as possible in life and immediately after diagnosis. It is crucial that children and families access evidence-based treatment. This chapter details the processes for developing evidence-based treatments and examines their current status in the field of ASD treatment. The chapter will describe the main interventions currently available and examine evidences supporting those interventions. The aim of the chapter is to provide a useful guide to the clinician and the consumer to help them choose an evidence-based intervention for children with ASD.

 heoretical Influences on ASD T Treatments Interventions for ASD are based on treatment theories. Treatment theories guide the development, implementation, and evaluation of interventions by specifying the hypothesized factors

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leading to the problem being targeted and the hypothesized mechanisms through which the intervention will change the targeted behaviors (Kazdin, 1999; Rapport, 2001). Such theories are then translated into testable hypotheses, which inform treatment design and evaluation (e.g., what variables should be targeted and measured) and generate knowledge relevant to practice while also feeding back to theory. Such an iterative process allows intervention principles and practices to be refined, with the ultimate goal of understanding whether the intervention achieves the outcomes that it is designed to achieve, and the processes through which it exerts its beneficial effects. In the field of ASD, treatments are derived from a variety of theoretical frameworks on human learning and development, rather than adhering to a unitary framework, possibly reflecting the limited knowledge about the specific mechanisms that lead to the ASD symptoms and associated features targeted by treatment. The main theoretical frameworks informing early intervention in ASD are summarized below. Psychodynamic theory was the first theoretical framework to inform intervention in ASD. Consistent with the notion that mother-child dynamics play a critical role in psychopathology (Freud, 1911), psychodynamic theories of ASD etiology posit that autistic symptoms are caused by inadequate parenting (Bettelheim, 1967; Green & Schecter, 1957; Kanner & Eisenberg, 1956). Treatment practices derived from this view ranged from psychodynamic psychotherapy to the child and the child’s mother to moving the child from home and into psychiatric residential institutions. The psychodynamic approach to ASD, after reaching its peak in the 1950s and 1960s, was discredited by overwhelming scientific evidence in the following decades. Nevertheless, various elaborations of the same theory continued to be proposed in English-­ speaking countries throughout the 1990s (e.g., Earnshaw, 1994; Tustin, 1991) and continued to influence intervention practices and policies in many countries (Feinstein, 2010). Behavioral theory and its applied program of applied behavior analysis (ABA) (Baer, Wolf, &

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Risley, 1968) became a reference point in ASD intervention when practices based on operant conditioning (Skinner, 1953) were introduced in the field by Ferster (1964), Lovaas (1968), and other pioneers of ABA.  Behavioral theory and practices are based on the notion that human behaviors obey universal laws of learning, whereby behaviors followed by a positive consequence (reinforcement) strengthen and are more likely to recur in the presence of the stimulus that triggered the behavior (antecedent), while those followed by a negative consequence result in the opposite effect. Consequently, antecedents and consequences can be manipulated to encourage and discourage specific behaviors. Key theoretical concepts introduced by early ABA work in ASD include the notion that atypical behaviors of children with ASD are a product of the same laws of learning that shape typical behavior (Ferster & DeMyer, 1961; Lovaas & Smith, 1989) through a careful manipulation of antecedents and consequences. This notion provided the foundation of the highly structured approach known as discrete trial teaching (Lovaas, 1981), as well as the later naturalistic applications of ABA (Schreibman et  al., 2015), and continued to be a centerpiece to most treatment practices in ASD. Developmental theory focuses on the articulation of changes and stages through which children pass in the process of cognitive development. While different theories of development exist, a key developmental concept that informed treatment in ASD (particularly early intervention) is constructivism (Bruner, 1978; Montessori, 1912; Piaget, 1929; Vygotsky, 1978). According to this perspective, skill acquisition in early development is built on the child’s active engagement with a stimulating physical and social environment, with knowledge acquired at each developmental stage providing the foundation for advancement to the next developmental stage, which will enable the acquisition of more sophisticated knowledge. In this context, adults facilitate skill acquisition through scaffolding (Bruner, 1978; see also Vygotsky’ concept of Zone of Proximal Development, 1978), i.e., helping, modeling,

Evidenced-Based Practices

and engaging the child in “­developmentally appropriate” joint activities and routines that build upon what the child already knows to generate new knowledge. For example, during shared storybook reading routines, adults engage children by establishing a joint focus (the illustrations in the book) and help them understand the meaning of the story by emphasizing the relationship between the words, pictures, and emotions associated with the events in story. They also elicit children reactions (including verbal and nonverbal communication) through pauses and questions and provide the child feedback, such as requesting clarification or recasting the child’s utterances (Ninio & Bruner, 1978). Pivotal skills that are learned during joint activities in the domains of communication, joint attention, and imitation allow the child to engage in more complex social exchanges, which, in turn, enable the acquisition of further knowledge. Developmental science became a major source of influence in ASD intervention since research documented that developmental sequences characterizing typical children are also observed in ASD. For example, joint attention predicts subsequent development of language both in typical children and in those with ASD, and intervention targeting joint attention does result in language improvements (Mundy, Sigman, & Kasari, 1990; Sigman et  al., 1999; Whalen, Schreibman, & Ingersoll, 2006), so that improvements in prerequisite skills facilitate acquisition of more advanced skills. Intervention approaches and practices informed by developmental theories emphasize the use of “developmentally appropriate” treatment targets and procedures (e.g., teaching developmental prerequisite to facilitate acquisition of more complex skills) and prioritize scaffolding over didactic teaching to promote skill acquisition in young children with ASD (Rogers, 1999). A more recent theoretical influence in ASD treatment is the young discipline of social neuroscience, which focuses on how the human brain processes social information and how social experiences in turn affect brain development

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(Lieberman, 2007). A key notion emerging from this field is the “experience-expectant” nature of the social brain (Brownell, 2013; Sullivan, Stone, & Dawson, 2014). According to this perspective, hardwired specialized neural circuits bias children to actively seek out opportunities for social engagement. Repeated engagement in species-­typical social experiences, in turn, provides the input needed for the brain to become specialized in social information processing, which then allows for more sophisticated forms of social interaction. Key components of this cyclical process include the subcortical and cortical that support the rapid processing of social cues (Frith & Frith, 2010), the social reward system, which underpins the experience of pleasure associated with social interaction (Dölen, Darvishzadeh, Huang, & Malenka, 2013), and the mirror neuron system (Rizzolatti & Sinigaglia, 2008). The latter respond similarly during action execution as well as during the observation of the same action, a process thought to enable the observer to understand others’ actions as if she/he would be doing a similar action and generate an embodied knowledge of the correspondence between own and others’ experiences. Treatment practices and approaches for ASD informed by social neuroscience perspectives emphasize the importance of engaging the child in typical social routines during early critical periods of brain plasticity, enhancing the reward value of social exchanges, and facilitating the appreciation of correspondences between own and others’ actions during joint routines (Rogers & Dawson, 2010). Theories from implementation science generate predictions on the factors that facilitate adoption and successful implementation of interventions in the “real world” (Eccles et  al., 2009; Green, 2012). In particular, implementation science theories focus on the features of the context in which interventions take place (e.g., early intervention centers) such as organizational systems, processes and cultures, and the “buy-in” of professionals involved in the intervention. While different theoretical models exist within implementation science, a key notion derived from this framework is that commitment to adopt

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a particular intervention and implement it as intended will depend on the perceived compatibility between features of the intervention and features of the contexts in which the intervention is employed. Factors such as interventionists’ and administrators’ attitudes (whether they think that using the intervention is the right thing to do), norms (the extent with which they feel they are expected to use the intervention or believe that their peers are using it), self-efficacy, and the perception of the cost-benefit of incorporating a new program in their standard practice all concur to determine the intervention’s initial uptake, maintenance over time, and the degree of fidelity to which it is delivered. This, in turn, will affect intervention outcomes. Recent early intervention practices for ASD informed by implementation science include the use of participatory research methods to take into account the administrators’ and practitioners’ resources and preferences from the early stages of designing and piloting new intervention programs (Dingfelder & Mandell, 2011; Locke et al., 2016; Smith et al., 2007). In conclusion, theories are necessary to guide hypothesis-driven development and examination of early intervention, including the utility and usability of the intervention and the mechanisms that promote change. Early interventions in ASD have been heavily influenced by theoretical views on human development and learning that were prominent in different historical periods and different cultural contexts, including several not discussed here for the sake of conciseness, e.g., attachment theory (Siller, Swanson, Gerber, Hutman, & Sigman, 2014). While historical divergences in theoretical orientations have been a source of animosity in the field, the critical role of theories is to generate empirically testable predictions on the utility of specific approaches and mechanisms of change, so that knowledge can be gained on the factors promoting positive change for children with ASD.  A theory-driven agenda of early intervention development and evaluation is therefore critical to the practical challenge of implementing and adapting the intervention to various individuals and contexts while preserving the “active ingredients” responsible for successful outcomes (Odom, 2016; Vivanti, 2017).

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Development of Evidence-Based Intervention Smith et  al. (2007) outlined four phases for the development of an evidence-based intervention: (a) formulation and systematic implementation of a new intervention, (b) development of a manual and a cross-site evaluation of the intervention, (c) randomized control trials (RCTs), and (d) effectiveness studies in communities. In the formulation and systematic implementation phase, the aim is to show that the new intervention is efficacious. In these designs, data related to a target behavior are collected during a baseline phase as well as during one or more intervention phases. If the target behavior improves during the treatment phase in comparison to baseline, it is possible to suggest that the intervention was efficacious. The main advantage of single-subject designs is the limited resources that are required. However, a small sample size prevents generalizability of results. Alternatively, between-group design, where one group is assigned to the treatment condition and one group is assigned to a control condition, can be used in this phase. Advantages of between-group designs include random assignment of participants to conditions, inclusion of a large number of participants, and increased generalizability of results in comparison to single-subject results. However, limited resources may prevent the enrollment of a number of participants sufficient to reach statistical power. In this case, a lack of differences between groups may be due to either inefficacy of the intervention or inappropriate statistical power. The next phase consists of the assembly of manuals and development of a research plan. The manuals must contain clear and specific explanations of procedures and fidelity measures to allow researchers and practitioners to implement the treatment. Feasibility should be tested with a small number of participants. Feasibility testing will allow researchers to understand whether the treatment is accepted by practitioners as well as by patients. This phase also includes planning a randomized clinical trial (RCT) to further evaluate the efficacy of the

Evidenced-Based Practices

t­reatment. Key components of planning a RCT include the identification of primary and secondary measures and consultation with a biostatistician to calculate a sample size adequate to reach statistical power. The multisite randomized clinical trials (RCTs) test the efficacy of the intervention by randomly assigning a large number of participants to experimental and control conditions. High-quality RCTs should include a representative sample, clear inclusion and exclusion criteria, and outcomes measures that evaluate core symptoms of ASD. Finally, effectiveness studies test whether an intervention is effective when administered in community settings without rigorous research oversight. Effectiveness studies also evaluate whether an intervention is helpful in clinical practice and whether it should be largely disseminated. The body of evidence supporting the positive impact of early intervention for children with ASD mainly comes from university-based efficacy studies involving high levels of staff training, supervision, and high-intensity services (Vivanti et al., 2014). Methodologically rigorous studies evaluating efficacy usually require randomization of participants into experimental and control conditions, as well as a blind evaluation of treatment outcomes (Bowen et  al., 2009). Randomization is often impossible to conduct in community-based interventions due to the policies regulating the delivery of services and ethical issues. Moreover, blind evaluations are not usually conducted in clinical practice outside randomized control trials (RCTs). Efficacy studies employing randomized control trials (RCTs) test whether a given intervention is efficacious under controlled conditions (Smith et al., 2007). Studies of generalizability to community practice are limited due to the difficulties involved in the selection of participants and clinicians. Community effectiveness studies test whether an intervention is effective when administered in community settings without rigorous research oversight (Smith et al., 2007). In effectiveness studies, it is not possible, nor desired, to maintain the level of experimental control that is characteristic of randomized clini-

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cal trials, such as randomization of participants and strict inclusion and exclusion criteria, since the goal is to determine whether an intervention would be effective as practiced by community clinicians. Due to the complexity involved in conducting good-quality effectiveness studies, very few ASD-specialized early interventions have been evaluated through community studies (Divan et al., 2015; Kaale, Smith, & Sponheim, 2012). A priority in the ASD field is to evaluate whether specialized interventions, proven efficacious in University RCTs, are effective when implemented in communities around the world. Many communities lack the resources needed for the implementation of rigorous efficacy studies. An additional challenge for many non-English-­ speaking communities is that most evidence-­ based early intervention models for young children with ASD have been developed in English-speaking countries. When using an intervention that has been developed in a different country, translation of the intervention manual as well as adapations of the procedures may be necessary due to differing languages and cultural contexts. Efficacious intervention need to be accessible and effective in the real world. Population with potential confounds are usually excluded in intervention studies. As a result we know very little about intervention efficacy and effectiveness in children with low income and/or migrant status or children living in developing countries. While all evidence-based early interventions have been developed and tested in high-income countries, the majority of children live in low-­ income countries (Divan, 2017). Most children living in low-income countries lack access to high-quality evidence-based intervention. Barriers include a lack of resources needed to provide high-intensity interventions as well as a scarcity of specialized professionals (Patel, Kieling, Maulik, & Divan, 2013). Interestingly, Divan et al. (2015) have recently published a randomized trial evaluating the adaption of a well-­ supported evidence-based intervention. A key aspect that allowed the implementation of the intervention in a low-resource region of India

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included the delivery of a parent-mediated intervention through non-specialist providers. In many underserved areas of the world, providing high-intensity therapist-led intervention may not be realistic, especially if we hope to deliver early intervention to the majority of children with ASD. On the other hand, all children deserve to receive high-quality evidence-based intervention adapted and evaluated in their communities. Hopefully, it will be possible to conduct further research in low-income countries to develop and evaluate interventions that could serve more children and lead to positive outcomes.

Inclusion/Exclusion Criteria Despite the overall documented positive impact of early intervention for preschoolers with ASD (12–72 months), response to an intervention program is variable. Outcomes for preschoolers who received early intervention range from loss of diagnosis to lack of improvement in the core ASD symptoms and from dramatic gains in language, cognitive, and adaptive skills to minimal treatment gains (Howlin, Magiati, & Charman, 2009). There are at least two possible reasons for the variability in the outcome of early intervention studies. First, most studies do not describe the sample characteristics in detail. Even less is mentioned about the social and demographic factors that might influence the outcome. Second is the clinical heterogeneity of autism (Vivanti et  al., 2014). Despite the current custom of conceptualizing autism as a spectrum disorder following the publication of DSM-5, it is almost certainly the case that subtypes exist within the autistic spectrum (Rutter, 2014). In addition to the possible subtypes of autism, several medical and behavioral conditions are known to coexist with it. It is estimated that 75% of individuals with ASD present associated medical conditions, genetic syndromes, or mental health disorders (Nazeer & Ghaziuddin, 2012). Due to the attempt to recruit homogeneous samples of individuals with “pure” ASD, children with associated conditions, such as epilepsy, severe intellectual disabilities, or

genetic abnormalities, are not included in many intervention studies (Dawson et al., 2010). Thus, by excluding children with ASD who have associated medical and behavioral disorders—who, in fact, constitute the majority of the general ASD population—these stringent inclusion and exclusion criteria significantly reduce the generalizability of results and their utility in the real world. On the other hand, in studies where all children with ASD are included, and comorbid conditions are not considered as moderators in the statistical analyses, it is not possible to evaluate whether associated medical conditions have an impact on outcomes.

 utcome Measures in ASD O Treatment Given the multiple and diverse needs of individuals with ASD, a plethora of treatment targets and measures have been employed as outcome measures in ASD treatment trials. Ideally, selection of outcome measures is based on a precise delineation of the change that the treatment is designed to produce and how this is reflected in measurable proximal outcomes (behaviors that are directly targeted by treatment) and distal outcomes (behaviors that are not directly targeted but are expected to change as a downstream consequence of the treatment). Additional considerations in the selection of outcome measures include (1) the availability of instruments that provide a reliable, valid, and change-sensitive measurement of the targeted skills and (2) individuation of treatment targets that are considered to be meaningful by professionals as well as families and individuals receiving treatment. In the measurement of ASD treatment outcomes, challenges exist in relation to each of these parameters. First, unlike treatments that target a specific and easily quantifiable dimension for which normative parameters are well established (e.g., changes in blood pressure following hypertension treatment), most autism treatments aspire to change multiple areas of functioning that are manifested heterogeneously and difficult to

Evidenced-Based Practices

c­apture. For example, while virtually all treatments for ASD aspire to address the core social symptoms of ASD, difficulties in quantifying social reciprocity (and how it changes following treatment) has been noted as a challenge since Kanner’s original description of ASD (1943). Social difficulties manifest differently among individuals with ASD (e.g., lack of spontaneous social initiations versus excessively frequent and inappropriate social approach) and across different ages (e.g., lack of eye contact in a toddler versus difficulties in establishing friendships in a teenager) and are affected by intellectual functioning, which is also highly variable in ASD. Similarly, repetitive behaviors in ASD range from motor mannerisms (e.g., hand flapping, body rocking) to excessive focus on one conversation topic, and they encompass behaviors that might be present in young typically developing children (Leekam, Prior, & Uljarevic, 2011). Compounding these challenges is the fact that changes in core symptoms of ASD following treatment are often subtle. Therefore, the use of diagnostic measures designed to detect the presence of ASD symptoms, such as the ADOS, has generally proven unsuccessful in capturing treatment-­ related progress. Quantification of changes across other dimensions, such as cognitive functioning and adaptive behavior, is somewhat less challenging due to the availability of normative data and standardized instruments with solid psychometric properties that are usable across the wide range of functioning of the ASD spectrum (Mullen, 1995; Sparrow, Balla, & Cicchetti, 2005); however, as discussed in detail below, challenges exist when instruments standardized on typically developing individuals are used for those with ASD, including the social and language demands inherent in the testing situations (e.g., understanding complex instructions, and interacting with unknown experimenters in new settings). The challenges inherent to the measurement of change in ASD are reflected in the vast heterogeneity of outcome measurement strategies in ASD treatment trials. Recent research by Bolte and Diehl (2013) documented that out of approximately 200 intervention trials for ASD, more

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than 200 unique measurement tools were used, 20% of which were investigator-designed. Of these, 60% were used only once, and only three tools were used in more than 2% of the studies. Additionally, recent work by Yoder, Bottema-­ Beutel, Woynaroski, Chandrasekhar, and Sandbank (2013) documented that the way researchers operationalize and measure treatment targets in social communication affects whether treatment effects are found. In particular, treatment changes are more likely to be detected when proximal measures are used, i.e., measures reflecting behaviors that are directly targeted by treatment (e.g., the number of joint attention episodes in a treatment targeting joint attention), as compared to distal outcome measures (e.g., verbal IQ changes using a standardized test). To address the many challenges related to ASD intervention outcome measurement, a series of expert panels and stakeholder groups have been recently engaged in the effort to set guidelines for appropriate outcome measurement in the ASD field (Anagnostou et al., 2015; Lecavalier et al., 2014; McConachie et al., 2015; Scahill et al., 2015). Tools identified as appropriate for use as social communication outcome measures (Anagnostou et  al., 2015) included the Communication and Symbolic Behavior Scales (CSBS; Wetherby & Prizant, 2002), the Early Social Communication Scales (ESCS; Mundy, Block, & Delgado, 2007), the Vineland Adaptive Behavior Scales-II Communication Domain (with Receptive, Expressive, and Written subdomains) and Socialization Domain (with Interpersonal Relationships, Play and Leisure Time, and Coping Skills subdomains) (Sparrow et  al., 2005), the Social Skills Improvement System (SSIS; Gresham & Elliott, 2008), the Aberrant Behavior Checklist Social Withdrawal subscale (Aman, Singh, & Stewart, 1985), and the Behavior Assessment System for Children– Second Edition (BASC-2) Functional Communication, Social Skills, and Withdrawal subscales (Reynolds & Kamphaus, 2006). Measures rated as potentially appropriate included the Social Responsiveness Scale (SRS; Constantino & Gruber, 2012) and the Pervasive

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Developmental Disorder–Behavior Inventory (PDD-BI; Cohen, Schmidt-Lackner, Romanczyk, & Sudhalter, 2003). Nevertheless, limitations were noted for each of these measures, including limited data on the use of such measures in individuals with intellectual disability. In the years following the Anagnostou et al. (2015) report, the Brief Observation of Social Communication Change (BOSCC) was developed by Grzadzinski et  al. (2016) to measure treatment response for social communication behaviors. Initial validation of the BOSCC suggests strong psychometric properties and strong responsivity to change when compared to the ADOS. With regard to restricted and repetitive behaviors, Scahill et al. (2015) identified the following measures as appropriate: Children’s Yale-Brown Obsessive Compulsive Scales for pervasive developmental disorder (CYBOCS-PDD; Scahill, Riddle, & McSwiggin-Hardin, 1997; Scahill, McDougle, & Williams, 2006), the Repetitive Behavior Scale–Revised (RBS-R; Bodfish, 2003), the Aberrant Behavior Checklist Social Stereotypic Behavior subscale (Aman et  al., 1985), the Stereotyped Behavior Scale (SBS; Rojahn, Matlock, & Tasse, 2000), and the Repetitive Behavior Questionnaire (RBQ; Honey, McConachie, & Turner, 2012). Again, limitations were noted for each of these measures, including an unclear capacity to capture the range and subtypes of repetitive behaviors observed in ASD. Finally, the expert panel led by McConachie et al. (2015) pointed to the potential utility of a wide range of standardized instruments to capture treatment change in nondiagnostic features of ASD, such as cognitive functioning and adaptive behavior. Nevertheless, concerns were noted about the validity of standardized cognitive tests when used to evaluate individuals with ASD. These tests require a set of skills that are often impaired in children with ASD, particularly in those who are minimally verbal, such as following verbal instructions and engaging with unfamiliar tasks and assessors. These limitations involve three significant risks: (1) treatment-­ related changes in this population might be underestimated; (2) the achievement of minimum test-taking skills in this population might result

in artificially inflated improvements in test scores; (3) test scores at post-treatment for those children who have poorer treatment outcomes and did not achieve sufficient test-taking skills might be unusable/invalid, thus biasing the data toward showing more positive outcomes than what actually occurred. Each panel report pointed to the need for further research to increase accuracy, flexibility, and usability in outcome measurements of ASD treatments. Current efforts to increase precision in the field include the use of new technologies based on eye-tracking and neuroimaging methodologies to complement traditional observational and parent-reported measures (Voos et al., 2013). Finally, McConachie et al. (2015) documented different views among stakeholder groups on the outcomes that should be measured to capture treatment success. In particular, outcomes considered relevant by professionals included changes in ASD core symptoms, language, adaptive behavior, and cognitive functioning; however, parents and individuals with ASD indicated that happiness, family well-being, anxiety, and sensory overload were most important. Addressing the discrepancy in the perception of “what matters” in ASD intervention outcomes is a challenging yet important endeavor.

Methods Analytic Approaches to Interdisciplinary Early Intervention Studies: ANOVAs and T-tests Are Not Enough Two main designs have been used in ASD behavioral treatment paradigms: single-subject designs, which have been the primary design used in the field of applied behavior analysis, and group designs. In the past, controlled group designs typically featured comparison groups and used multiple measures to assess treatment results, with treatment effects tested via ANOVA and multiple t-tests before and after treatment. However, in the past decade, research designs for group studies have changed considerably due to

Evidenced-Based Practices

the significate influence of the guidelines and practices laid out by the CONSORT group (Schultz, Altman, & Moher, 2010). Currently, an increasing emphasis is being placed on the following practices: (1) the use of randomized controlled trials with intent-to-treat analysis, (2) following CONSORT practices, (3) taking data at multiple points rather than at pre- and post-time points only, (4) the use of growth curve analyses to analyze data, and (5) the importance of conducting effectiveness studies in addition to efficacy studies to determine the effects of a treatment when delivered in typical community settings. These emphases are changing the way scientists design and carry out group studies of early intervention efficacy.

 ONSORT (Consolidated Standards C of Reporting Trials, 1996) During the 1990s, there was an increase in RCTS, and authors were failing to report complete, clear, and transparent reports of their trials and analyses. Because of inadequate reporting and designs, difficulties in assessing the results of health-­related RCTS and creating standards of care arose. To address these issues, the CONSORT standards were developed. The resulting standards of practice have had great support worldwide, and high-impact journals now explicitly require that any RCT submitted must have been registered as a clinical trial and must follow the CONSORT guidelines in the report. Some of the CONSORT requirements that have considerable impact on ASD treatment studies are as follows. Intent-to-Treat Analysis  Not only is the CONSORT group adamant about the importance of using randomized designs but also that studies use an intent-to-treat analysis. Intent-totreat analysis includes all subjects who have been randomized as part of the data analysis, regardless of noncompliance, protocol deviations, early withdrawal from treatment, or anything else that may happen once the subject has enrolled. Thus, data from subjects who do not

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abide by the protocol—e.g., those who dropped out, did not attend sessions, and did not implement the treatment as planned—must be included in the analysis of the trial. Additionally, the movement of each enrolled subject through the study must be tracked and reported in a specified format.

Pre-specification of Primary Analysis  Before a trial begins, researchers must specify, in the clinical trials registry (http://clinicaltrials.gov), how they will evaluate the effect of the experimental treatment based on “a completely defined pre-­ specified primary and secondary outcomes measures, including how and when they were assessed” (Schulz et al., 2010, p.  2). Requiring researchers to predefine specific outcomes expected from a trial protects against biased reporting, also referred to as “cherry picking,” that has been seen in the past research. Previously, many measures were administered, data were analyzed, and those variables showing significant differences were published as the evidence of the treatment’s success. In addition, the guidelines specify that results for each pre-specified primary and secondary measures for each treatment group are to be published, including estimated effect sizes. Researchers must report pre-specified analyses separately from the clearly labeled post hoc or exploratory analyses. The requirement to pre-specify the variable and the analysis that will define the success of a treatment is somewhat easier to conceptualize with a targeted treatment—one focused on a specific aspect or symptom of ASD—than it is for comprehensive treatments, those that are trying to make significant changes in the multiple ways that ASD affects development. Targeted treatments may reflect ASD as “fractionated” (Happé & Ronald, 2008), a disorder defined by several separable symptoms that can be treated independently. It may also reflect ASD as stemming from a primary deficit, where many other domains are dependent on the adequate functioning of the primary ability in order to develop normally, in a trickle-down or cascading effect model. For tar-

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geted treatments especially, initial data may come from single-subject studies, rigorous and difficult experiments to conduct, that provide answers to critical questions with very few subjects seen over a brief period of time and thus provide a very economical approach to initial testing of a new treatment. Comprehensive treatments, however, take a more global view of ASD as a neurodevelopmental disorder affecting many domains of development. The goal of a comprehensive treatment is to reduce the effects of ASD broadly, which, if successful, will be seen in multiple behaviors and domains. Interdisciplinary treatments are often comprehensive treatments. Improving language, learning rates (IQ), social skills, personal independence, and behavior problems are common targets of interdisciplinary comprehensive interventions. Single-subject designs are less helpful here. In order to assess the global impact of a comprehensive intervention on development and learning, generalized across contexts, researchers often use measures that summarize data over many domains, like IQ tests, measures of adaptive behavior, and comprehensive language measures. If the intervention is improving children’s learning or developmental rates, standard scores will increase over time for the group as a whole on domains that are being affected by the intervention. This is a pre-post design that uses the children as their own control group as a first step in assessing the possible effects of a new comprehensive treatment for the overall effects of ASD. In order to test efficacy, the next step is to test the treatment using a randomized controlled design. Thus, while pilot studies of different types of treatments may differ considerably, efficacy designs for both are laid out in the CONSORT guidelines. The rigor of the CONSORT guidelines assists both at the level of research design and research reporting, and the autism field is already seeing the benefit of these uniform and rigorous standards (Green et al., 2015). Thanks to these developments, the rigor of behavioral treatment studies now seems parallel to that which has been demonstrated in drug studies over the past decade.

 uthentic Assessment Practices A and Hierarchical Growth Curve Comparisons As both parents and interventionists know, young children’s development is not a linear process and young children’s learning is contextually based. Neisworth and Bagnato (2004) argue convincingly for the use of authentic assessment practices; assessments are conducted in everyday settings and routines with familiar material rather than in atypical environments such as a testing room. Their recommendations fit well with the CONSORT requirement to pre-specify a single primary outcome measure and require researchers to be extremely thoughtful about exactly what the treatment is supposed to be changing and to have valid, reliable measures that are sensitize to small changes in that behavior over time. Additionally, the stability of omnibus measures often works against their sensitivity to small changes in specific behaviors. (Note the difficulty that early intervention studies of ASD have had in changing ADOS scores in children who are clearly benefitting from the treatment (e.g., Dawson et  al., 2010; Wetherby et  al., 2014)). Using proximal measures of change gathered frequently over time allows for the use of powerful analytic procedures that can capture the dynamic aspects of young children’s development through growth curve modeling (Green et al., 2017; Visser et al., 2017).

SMART Designs One other interesting new and powerful addition to research designs being used in ASD intervention involves SMART designs—sequential multiple assignment randomized trial (Lei, Nahum-Shani, Lynch, Oslin, & Murphy, 2012). The beauty of the SMART design is that it allows one to test approaches to tailoring a treatment within an RCT design—that is, to adapt a treatment to an individual response in order to improve outcomes. A SMART design involves a randomized controlled trial with multiple RCTs embedded within, each test tailoring approaches

Evidenced-Based Practices

to an overall treatment based on child response. The ability to test alterations to a treatment protocol within the study itself opens up tremendous possibilities and fits well with an interdisciplinary approach to treatment, since differing comorbidities requiring interdisciplinary expertise may affect treatment responses in different ways and may require differing adaptations to maximize outcomes. Dr. Connie Kasari is leading the autism intervention field with the use of SMART designs to identify what treatment options to use with what children (Kasari et al., 2014). Note that these are very complex designs to use, requiring a very large number of subjects and specialized design and analytic experts. However, they cover far more ground in far less time than any other approach.

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need to seek out the treatment trials and carry out various activities, including assessments and activities at home, in order to receive the experimental intervention, which requires highly motivated parents with the personal and material resources to meet these expectations. All of the child and family treatment is reviewed weekly or biweekly. In our current community ESDM implementation study, the research staff members are working with staff from community agencies that volunteer for the study. The research staff does not select people to carry out the intervention. Instead, any staff person with any level of training who is currently employed by the agency and working with families carries out the intervention. Training is brief; it requires only hours, not months, of training and involves in-service training only. Supervision is much more limited than Community-Based Effectiveness in the university-based studies and involves little Trials 1:1 supervision. Any child within the agency who meets the criteria for ASD risk is included. There The final topic to be discussed involves the cur- are no requirements or expectations of parents rent emphasis on the importance of community-­ other than consenting to the study. The assessbased effectiveness trials in order to demonstrate ment battery is much more limited than that of a that a treatment will have positive effects when university-based study and is based on the capaccarried out by community service providers in ity of local professionals that administer the typical community settings. This expectation rec- measures. ognizes the many differences between trials Thus, the conditions under which the interavailable to researchers but not available in typi- vention is delivered are defined by the existing cal communities. An example of these differ- community practices of a particular agency. ences can be seen in the methods used in ESDM However, the research standards are rigorous, university-based studies compared to the meth- and a fully randomized controlled study is still ods currently being used in community ESDM expected, though the randomization may now trials. occur at an agency level rather than an individual In our university-based ESDM studies, per- level. Examples of recent rigorous community sonnel with specialized skills have been hired to implementation studies have been published by conduct the treatment and must also go through Mandell et al. (2013) and Stadnick, Stahmer, and a lengthy training (8–12  weeks) that requires a Brookman-Frazee (2015). Community implehigh level of skill attainment in delivering the mentation studies are a critical final step in the treatment—treatment fidelity of implementation long process of developing, testing, and improvmeasures—in order to conduct the treatment ing interdisciplinary interventions for young chilwith children. Fidelity is checked frequently and dren with ASD and their families. Given the randomly, and immediate retraining occurs if impact of high-quality intervention on young scores slip. Supervision is frequent and ongoing, children with ASD as a group, the efforts delivered by professionals with expertise in the described here to improve study designs, create treatment. Children are selected according to new analytic approaches, and move rapidly into specific criteria, so enrollment is limited. Parents community effectiveness trials demonstrate

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exciting new developments in interdisciplinary treatment research in ASD.

Evidence-Based Interventions for ASD and Their Evaluation Evidence-based interventions have been evaluated in a research study, with participants similar to the target individuals for age, diagnosis, intellectual abilities, and language (e.g., age, diagnosis, intellectual level, language level) (Odom et  al., 2010). Evidence-based interventions are treatments that have shown efficacy through evaluations of outcomes. Therefore, evidence-based intervention will probably be efficacious in changing target behaviors. Well-established evidence-­based intervention has been validated through clinical trials using randomly assigned comparison groups, blind assessments, clear inclusion and exclusion criteria, adequate diagnosis, adequate sample sizes, clearly described statistical methods, as well as inclusion of fidelity measures (measurement of adherence to the treatment model) (Rogers & Vismara, 2008). Behavioral models are interventions largely utilized for children with autism. They are informed by behavioral theories (see section “Theoretical Influences on ASD Treatments”). The most commonly used behavioral intervention is discrete trial training (DTT; Lovaas, 1981), a method of teaching specified skills in simplified and structured steps (Smith, 2001). The therapist uses adult-directed prompts, massed trial instruction, reinforcement contingent upon the production of the target behavior, and repetition to teach new skills. DTT is very successful at developing a new response to a stimulus; however, it does have some limitations. Its limitations include a lack of generalizability of skills, prompt dependency, and a lack of communicative spontaneity. Thus, once a skill is learned in the DTT format, a plan for teaching generalization across contexts and people is needed. Lovaas (1987) conducted a study in which DTT delivered at high intensity (40 h per week) was compared with DTT delivered at low inten-

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sity (10 h per week) and with eclectic interventions over 2  years. In the high-intensity DTT group, 47% of children reached average intellectual skills (IQ above 75) and participated in mainstream education. Several studies have been able to replicate the findings described in Lovaas’ seminal study (Bibby, Eikeseth, Martin, Mudford, & Reeves, 2002; Cohen, Amerine-Dickens, & Smith, 2006; Luiselli, O’Malley Cannon, Ellis, & Sisson, 2000). Moreover, effectiveness studies have shown positive support for ABA-based interventions (Cohen et  al., 2006; Sallows & Graupner, 2005). Both efficacy and effectiveness have been evaluated for DTT. The Early Start Denver Model (ESDM) is an empirically based early intervention that fuses a relationship-focused developmental model with principles and practices of applied behavior analysis. The ESDM is delivered by adults within the context of play and daily routines in which highly precise naturalistic behavioral teaching is imbedded, making this a Naturalistic Developmental Behavioral Intervention (NDBI; Schreibman et  al., 2015). Dawson et  al. (2010) conducted a RCT to investigate the effects of the ESDM in young children with ASD. Children who received the ESDM, as compared to children who received available treatment in the community, demonstrated greater gains in IQ, receptive and expressive language, social skills, and adaptive behavior and greater decreases in parent-reported symptoms of ASD (Dawson et al., 2012). The ESDM has been implemented in a variety of settings, including intensive autism-specialty delivery (Dawson et  al., 2010), daycare centers and preschools (Vivanti, Dissanayake, Zierhut, & Rogers, 2013), parent education programs (Rogers et  al., 2012; Vismara, Colombi, & Rogers, 2009), and telehealth (Vismara, McCormick, Young, Nadhan, & Monlux, 2013). Moreover, the ESDM has been implemented by a variety of professionals such as psychologists, occupational therapists, early childhood educators, behavioral analysts, and speech therapists (Rogers & Dawson, 2010). Because it can be implemented in a variety of contexts and by a variety of professionals, the flexibility of the ESDM may be successful in responding to the

Evidenced-Based Practices

challenges of translating an evidence-based intervention into a community-based intervention across different cultures, languages, intervention settings, and professionals. On the other hand, the rigor required in the implementation of the various components of the ESDM intervention, such as systematic assessment, writing objectives, and monitoring progress based on data, may pose obstacles in intervention contexts where professionals are not used to implementing manualized treatments. Colombi et al. (2016) evaluated the effectiveness of the Early Start Denver Model (ESDM) intervention in a group of young children with ASD living in an Italian community compared to a group of Italian children who received treatment as usual. Twenty-two young children diagnosed with ASD received the ESDM in a center-based context for 6 h per week over 6  months. The ESDM group was compared to a group of 70 young children diagnosed with ASD who received treatment as usual for an average of 5.2  h over 6  months. Children in both groups improved in cognitive, adaptive, and social skills after 3 months and 6 months of treatment. Children in the ESDM group made larger gains in cognitive and social skills after 3 months and 6 months of treatment. The ESDM group made larger gains in adaptive skills after 3 months of treatment. Our results are discussed in terms of implications for intervention research and clinical practice. This supports the positive impact of the ESDM in a non-English-speaking community. Moreover, Vivanti et al. (2014) evaluated the effectiveness and feasibility of the ESDM in the context of a long-day care community service, with a child-staff ratio of 1:3. Outcomes of 27 preschoolers with ASD undergoing 15–25 h per week of ESDM over 12 months were compared to those of 30 peers with ASD undergoing a different intervention program delivered in a similar community long-day care service. Children in both groups made gains in cognitive, adaptive, and social skills. Participants in the ESDM group showed significantly higher gains in developmental rate and receptive language. Both efficacy and effectiveness have been evaluated for ESDM.

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The Social Communication, Emotional Regulation, and Transactional Support model (SCERTS) is a comprehensive, multidisciplinary approach focused on increasing communication and socio-emotional skills of children with ASD.  The model focuses on Social Communication, Emotional Regulation, and Transactional Support as the primary developmental dimensions that need to be addressed to support children with ASD.  The authors of the SCERTS model state that their intervention is consistent with evidence-based practices (National Research Council, 2001; Prizant & Rubin, 1999). The SCERTS model is based on empirical research and clinical investigation in understanding conventional and unconventional communication in ASD, including communicative functions and intentions of behavior (Prizant & Duchan, 1981; Prizant & Rydell, 1984; Prizant & Wetherby, 1987; Rydell & Prizant, 1995; Schuler & Prizant, 1985; Wetherby, 1986; Wetherby & Prutting, 1984) and is consistent with other work on behavioral support (Fox, Dunlap, & Buschbacher, 2000; Koegel, Koegel, & Dunlap, 1996; Lucyshyn, Dunlap, & Albin, 2002). The model addresses the relationship among communication, social-emotional development, and emotion regulation (Prizant et al., 1990; Prizant & Meyer, 1993; Prizant & Rubin, 1999; Prizant & Wetherby, 1990). Wetherby et al. (2014) evaluated the effects of two 9-month parent-implemented interventions within the Early Social Interaction (ESI) Project using the principles of the SCERTS model. The two interventions, one being delivered individually (individual-ESI) while the other was delivered within a group setting (group-ESI), taught parents strategies to use throughout the day to develop social communication skills in children with ASD.  The trial included 82 children with ASD between the ages of 16–20  months. Children who participated in the individual-ESI showed significant change in communication, daily living, and social skills, while the children who participated in the group-ESI showed no significant change. Therefore, the SCERTS model, implemented with very young children,

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has been ­evaluated through efficacy studies that compared dosages of the same intervention. Currently, there is no efficacy studies that compare the SCERTS model with other kind of interventions. Pivotal Response Treatment (PRT) is a naturalistic intervention based on ABA principles (Ingersoll & Schreibman, 2006; Koegel, Koegel, Harrower, & Carter, 1999). PRT targets pivotal areas of behavior such as motivation, responsivity to multiple cues, self-management, and social initiations. By targeting these critical areas, PRT generates cascading effects resulting in improvements in other social, communicative, and behavioral areas not specifically targeted. The motivational strategies of PRT include child choice, task variation, interspersing maintenance tasks, rewarding attempts, and the use of direct and natural reinforcers. PRT is used to decrease disruptive/self-stimulatory behaviors and increase social, communication, and academic skills. Most of the studies evaluating PRT have used single-subject designs (Koegel, O’Dell, & Koegel, 1987). Mohammadzaheri, Koegel, Rezaee, and Rafiee (2014) conducted a randomized clinical trial design using two similar groups of children between 6 and 11 years old. Children were randomly assigned to either a PRT or structured ABA intervention. The results showed that after 3 months of intervention, the PRT approach was significantly more effective in producing improvements in social communication for children with ASD than the ABA intervention. Some effectiveness studies of PRT have been undertaken as well. For example, Smith et al. (2010) evaluated PRT in a community setting demonstrating gains in IQ in a group of 45 children with ASD (mean age at baseline = 50 months). While most evidences supporting PRT come from single-­ subject design studies, some attempts to evaluate efficacy and effectiveness with group designs are also present in the literature. The Developmental, Individual Difference, Relationship-Based (DIR) model focuses on three areas: relationship and interactions, functional emotional development, and individual differences in sensory modulation, processing, and

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motor planning (Greenspan, 1992; Greenspan & Wieder, 1998). The DIR aims to create affective and interactive engagement so that children can perceive themselves as intentional individuals and build out of this language, social, and cognitive skills. Evaluation of the DIR model includes a case review of 200 children who had started the intervention between 2 and 4  years old and had received between 2 and 8  years of intervention (Greenspan & Wieder, 1997). Each child received a full initial evaluation, frequent re-evaluations, and additional evaluations from other professionals (Greenspan & Wieder, 1999). Children were classified into three subtypes based on results from their evaluations, Type 1, Type 2, and Type 3. Children classified as Type 1 fell out of the autism spectrum based on the Childhood Autism Rating Scale (CARS; Schopler, Reichler, & Rocher-Renner, 1988) and made significant progress in language, social, cognitive, and motor skills. The second group, Type 2, made slower progress but still showed improvement in communication. The third group, Type 3, made very limited progress. The majority of children classified as Type 3 learned to communicate with simple gestures and single words but continued to have difficulties with self-stimulation and repetitive behaviors. Other studies have evaluated the effects of DIR by reviewing clinical cases (Greenspan & Lewis, 2005; Solomon, Necheles, Ferch, & Bruckman, 2007). However, efficacy and effectiveness studies have not been undertaken. The JASPER (Joint Attention, Symbolic Play, Engagement, and Regulation) is an intervention that fuses developmental and behavioral principles (Kasari, Freeman, & Paparella, 2005). Using naturalistic strategies, JASPER focuses on developing the foundations of social communication including joint attention, imitation, and play. JASPER aims to increase language and social communication by improving these foundational skills. Support for JASPER comes from randomized control trials carried out through both efficacy and effectiveness studies (Kasari et al., 2014) including the use of SMART designs as described in the previous

Evidenced-Based Practices

section. The rigorous evaluation of JASPER over the last 15  years documents efficacy and effectiveness of this i­ ntervention. While JASPER is efficacious in developing social communication, it is not a comprehensive intervention. The TEACCH® Autism Program was developed by Drs. Eric Schopler and Robert Reichler in the 1960s to serve individuals through the life-­ span and is based at the University of North Carolina—Chapel Hill. The TEACCH approach is based on the characteristics of individuals with autism including difficulties with executive function, attention, and strength in visual processing. The TEACCH framework includes physical organization, individualized schedules, work systems, and visual structure of materials in activities. By using the strengths of individuals with ASD and supporting their difficulties, the TEACCH program aims to promote independency and self-efficacy. Despite a long history of implementation, the TEACHH Program has only been tested through a few single-subject design studies and group design studies without randomized control (Mesibov & Shea, 2010). Therefore, evidence for this program is limited. The Preschool Autism Communication Trial (PACT) intervention targets social communication impairments in children with autism by adapting the parents’ communication style to the needs of the level of their child’s understanding. The intervention uses parent coaching that focuses on increasing parental sensitivity and responsiveness to the child’s communication as well as on developing the child’s communication. Green et al. (2010) evaluated the PACT through a randomized control trial. One hundred fifty-five children aged 2 years to 4 years and 11 months were randomly assigned to PACT intervention or treatment as usual. After 12 months of intervention, the groups did not significantly differ in autism symptoms as measured by the ADOS-G nor in language or adaptive function measures; however, parent-child dyadic social communication improved significantly in the PACT group in comparison to the control group. At this point, support for the implementation of the PACT is limited.

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 ow to Choose Appropriate H Interventions Immediately after diagnosis, families are faced with the challenge of locating appropriate interventions. Professionals must support families to access interventions available in their communities rather than programs undertaken in rigorous research settings. Several groups of experts, including the National Research Council (2001), have reviewed the literature to identify recommendations for individual practitioners helping families to choose or evaluate appropriate interventions. Below are the guidelines identified by Rogers and Vismara (2008) for selecting early intervention for children with autism: 1. Challenging behaviors should be treated by identifying the function of the behavior and teaching of appropriate behaviors as replacement for the unwanted behaviors. 2. Functional communication should always be present for children with ASD of all ages and level of abilities. Teaching communication skills should occur throughout the day. 3. Children with autism must be engaged in meaningful, age-appropriate learning activities. The use of naturalistic teaching strategies including child choice and the use of intrinsic reinforcers help develop child motivation and generalization (NRC, 2001). If adult-directed teaching is used, naturalistic teaching strategies should be included as well (Smith, 2001). 4. Peer interactions should be included in programs for children with autism. Children with ASD benefit from the interactions with peers. 5. Generalization is a crucial component of interventions for children with ASD. Generalization is fostered when objectives are taught throughout daily routines in natural settings. Therefore, family members should be included in the intervention components including defining goals, identifying support for the family, and receiving coaching in effective strategies of teaching their children to function in the community (NRC, 2001).

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Comorbidity and the Need for Interdisciplinary Treatments Johnny L. Matson and Claire O. Burns

Autism spectrum disorder (ASD) can impact functioning across multiple domains (e.g., social, cognitive, adaptive), and individuals with ASD are also at an increased risk for comorbid disorders (Leyfer et al., 2006; Simonoff et al., 2008). Comorbidity refers to the co-occurrence of two or more disorders in the same individual (Matson & Nebel-Schwalm, 2007). Disorders that tend to often present in individuals with ASD include neurodevelopmental, medical, psychiatric, and behavioral concerns (Joshi et  al., 2010, 2013; Mannion, Leader, & Healy, 2013). Some comorbidities are so common that they are now included as diagnostic impressions within an ASD diagnosis. Specifically, the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) includes specifiers for ASD that include “with or without accompanying intellectual impairment, with or without accompanying language impairment, associated with a known medical or genetic condition or environmental factor, associated with another neurodevelopmental, mental or behavioral disorder, [and] with catatonia” (APA, 2013). The co-occurrence of ASD and other disorders can further exacerbate impairments in functioning (Mazurek, 2016). While interventions for J. L. Matson (*) · C. O. Burns Department of Psychology, Louisiana State University, Baton Rouge, LA, USA

ASD are typically individualized to address specific concerns, the identification and consideration of concomitant concerns is essential for providing effective treatment aimed at optimizing outcomes. A great deal of evidence exists that indicates high rates of comorbidity, but more interesting still is research that investigates how additional diagnoses or concerns impact symptomology. The current chapter explores some of the most common comorbidities, how they present when they co-occur with ASD, and why they are important to consider in treatment planning and implementation.

Neurodevelopmental Disorders Intellectual Disability One of the most common comorbid conditions with ASD is intellectual disability (ID). ID involves deficits in intellectual functioning (e.g., problem-solving, abstract thinking, planning, judgment), impairments in adaptive functioning (e.g., communication, social participation, independent living) across multiple environments, and onset during the developmental period. Severity levels of ID include mild, moderate, severe, and profound and are typically determined by examining impairments across conceptual, social, and practical domains (APA, 2013).

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A type of intellectual disability that is often relevant for individuals with ASD is global developmental delay (GDD). GDD is a diagnosis given to children under 5 who demonstrate impairments in intellectual functioning, but due to the individual’s age, a comprehensive and accurate assessment of the level of impairment is not possible at that time (American Psychiatric Association, 2013). This disorder is characterized by delayed developmental milestones across several areas of functioning and is typically considered to be a placeholder diagnosis until the individual can be reliably diagnosed with intellectual disability. Rates of ID in ASD have been estimated to be approximately 70% (Mannion et  al., 2013; Newschaffer et  al., 2007), though some studies estimate a lower rate closer to 25–50% (Chakrabarti, 2001; Yeargin-Allsopp et  al., 2003). There is evidence that individuals with ASD and ID are at higher risk for additional comorbid internalizing and externalizing disorders (Cervantes & Matson, 2015) and both disorders are risk factors for medical problems (Schieve et al., 2012).

Attention-Deficit/Hyperactivity Disorder Attention-deficit/hyperactivity disorder (ADHD) involves a persistent pattern of inattention or hyperactivity and impulsivity. To meet criteria for ADHD, the individual must display six or more symptoms of inattention or hyperactivity and impulsivity that have endured for at least 6 months, are not appropriate for the individual’s developmental level, and cause impairment in social or academic occupational activities. Examples of inattention symptoms include failing to give close attention to details during schoolwork or other tasks, difficulty maintaining attention, not seeming to listen when spoken to, not following directions, difficulty organizing tasks and activities, avoiding tasks that involve prolonged mental effort, losing things needed for tasks or activities, and becoming easily distracted or forgetful. For the hyperactivity and impulsiv-

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ity domain, symptoms include fidgeting, leaving his or her seat when not appropriate, running or climbing in situations when it is inappropriate, talking excessively, always on the go, blurting out an answer before a question is completed, difficulty waiting his or her turn, and intruding on others. Further, the individual symptoms must be present prior to 12 years of age, symptoms must occur in two or more settings, and the symptoms must interfere with the individual’s social, academic, or occupational functioning. Types of ADHD include combined presentation of both inattentive and hyperactive/impulsive symptoms, predominantly inattentive presentation or predominantly hyperactive/impulsive presentation. Symptoms may also be classified as mild, moderate, or severe, and symptoms must not be better explained by different psychiatric condition or by oppositional defiant behavior (American Psychiatric Association, 2013). Children with ASD often exhibit increased levels of inattention and hyperactive or impulsive behavior. Although the DSM-5 precluded a diagnosis of ADHD comorbid with ASD (American Psychiatric Association, 2000), the DSM-5 represented a shift toward further acknowledgement of comorbid psychiatric disorders (American Psychiatric Association, 2013), and so ADHD is now often diagnosed concomitantly with ASD (Stevens, Peng, & Barnard-Brak, 2016). Leyfer et  al. (2006) found that 31% of children with ASD also met criteria for ADHD, which is consistent with the estimates provided by Simonoff et al. (2008) and Mattila et al. (2010) of 28% and 38%, respectively. However, other researchers have estimated higher prevalence rates closer to 50% (Sinzig, Walter, & Doepfner, 2009). In addition to high rates of comorbidity, the presence of ADHD symptoms may exacerbate impairments in individuals with ASD. Individuals with this comorbidity may have more impaired functioning in domains such as cognitive, social, and adaptive skills (Rao & Landa, 2014). For example, Matson, Worley, Neal, Mahan, and Fodstad (2010) found that children with higher levels of ASD symptoms and inattention and impulsivity displayed greater deficits in socialization, and Yerys et  al. (2009) suggested the

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ADHD symptoms may be related to more severe deficiencies in adaptive behavior, executive control, working memory, and behavior problems. The findings of Jang et  al. (2013) also indicate that children with comorbid ASD and ADHD demonstrated more problem behaviors (i.e., tantrum behaviors and conduct problems) than those with only one diagnosis. Hyperactivity has also been implicated in greater impairments in communication, while inattention has been found to be related to restricted, repetitive behavior (Sinzig et al., 2009). In general, researchers indicate that the co-occurrence of ADHD and ASD may have a negative impact on functioning beyond what can be accounted for by either individual disorder.

Other Neurodevelopmental Disorders Additional neurodevelopmental disorders include motor (e.g., developmental coordination, stereotypic movement, and tic disorders) and communication disorders (e.g., language disorder, speech sound disorder, social [pragmatic] communication disorder). Motor disorders sometimes co-occur with ASD, and although less is known about this relationship than for other neurodevelopmental disorders, many children with ASD experience delays in fine or gross motor skills (Lloyd, MacDonald, & Lord, 2013). Kopp, Beckung, and Gillberg (2010) found that developmental coordination disorder occurred in 25% of school-aged females with ASD and 80% of preschool-aged females with ASD.  Stereotypic movement disorder is also included in this category, but it is diagnosed in individuals with ASD only when there is self-injury or the movements become severe enough to be the main focus of treatment (American Psychiatric Association, 2013), so it is less commonly considered comorbid with ASD. Language disorder, speech sound disorder, childhood-onset fluency disorder, social pragmatic communication disorder, and unspecified communication disorder are also considered neurodevelopmental disorders according to

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DSM-5 (American Psychiatric Association, 2013). However, since ASD often includes verbal language impairments, individuals with an ASD diagnosis often do not qualify for communication disorders as these symptoms are usually sufficiently explained as symptoms of ASD. Nevertheless, it is still possible for these disorders to co-occur with ASD, and so they should be considered during assessment.

Treatment Considerations Consideration of comorbid neurodevelopmental disabilities is necessary when developing individualized interventions. The co-occurrence of significant intellectual impairment has implications for treatment, as this may help clinicians to target skills related to cognitive development as well as adaptive functioning. Additionally, the identification of ID can serve as an indication that clinicians should be attentive to the potential of additional disorders. The presence of ADHD may also influence what intervention approaches are most appropriate. Soorya and colleagues (Soorya & Halpern, 2009) suggested that further research should be done to adapt psychosocial interventions to address areas that show similar patterns of impairments in these two disorders, specifically motor functioning, executive functioning, behavioral regulation, and socialization. Regarding pharmacological treatment, although medications often prescribed for ASD fail to treat the core social communicative symptoms of the disorder (Leitner, 2014), medications developed for ADHD have the potential to effectively address behavioral concerns related to attention problems, hyperactivity, and impulsivity (Jensen et al., 2001). Overall, there is evidence that interventions for children with ASD and comorbid ADHD should be multidisciplinary and comprehensive (Leitner, 2014). Although separate diagnoses of language and motor disorders are less common in individuals with ASD than other neurodevelopmental disorders, these concerns are often conceptualized as part of the individual’s ASD

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symptom ­presentation. Therefore, even if the individual does not have a formal diagnosis of a language or motor disorder, these impairments should be considered in intervention planning. It is recommended that a multidisciplinary team that includes physical, occupational, and speech and language therapists be involved in treatment planning for individuals with ASD in order to best address concerns related to language or motor delays (Baranek, 2002).

Medical Concerns The results of the Centers for Disease Control and Prevention (CDC; Schieve et al., 2012) National Health Interview Survey indicated that children with developmental disabilities (DD) such as ASD, ID, and ADHD and learning disabilities have higher rates of medical conditions. Specifically, children with DD were at increased risk for asthma, respiratory allergy, ear infections, eczema or skin allergy, food allergy, gastrointestinal concerns (i.e., diarrhea, colitis), intestinal problems, headaches, and seizures (Schieve et al., 2012). Due to the high frequencies of medical issues in individuals with ASD, assessment of medical issues and consideration of these concerns in treatment planning are warranted.

Seizures A seizure is considered atypical neurological activity that is excessive or synchronous (Fisher et al., 2005), and epilepsy is broadly defined as a disorder of recurrent seizures (Reilly & Gillberg, 2016). Seizures and seizure disorders tend to occur at higher rates in individuals with ASD than in the general population, with estimated prevalence rates ranging from 5 to 40% (Danielsson, Gillberg, Billstedt, Gillberg, & Olsson, 2005; Gabis, Pomeroy, & Andriola, 2005; Hrdlicka et al., 2004; Jokiranta et al., 2014; Kielinen, Rantala, Timonen, Linna, & Moilanen, 2004; Mannion et al., 2013; Schieve et al., 2012; Viscidi et  al., 2014). Several factors associated with ASD have been implicated in higher risk for

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seizures and epilepsy. One of the most well-­ established considerations is intellectual functioning. Individuals with intellectual disability or lower cognitive functioning have been found to be more likely to experience seizures (Amiet et al., 2008; Bolton et al., 2011; Danielsson et al., 2005; Gabis et  al., 2005; Hrdlicka et  al., 2004; Viscidi et al., 2014). Similarly, ASD symptom severity has also been linked to seizures, as those with more severe symptoms have higher rates of abnormal EEG activity and epilepsy (Gabis et  al., 2005). Gender has also been posited as a consideration because females with ASD have been found to be more likely to experience seizures than males (Amiet et  al., 2008; Bolton et  al., 2011). However, researchers have suggested that the relation between both of these factors and seizures may be attributable to lower cognitive functioning, as more severe autism symptoms (Viscidi et al., 2014) and female sex (Danielsson et al., 2005; Gabis et al., 2005) are often associated with lower intellectual abilities. Some researchers have attempted to parse out the differences between these variables and intellectual functioning in relation to ASD (Bolton et  al., 2011), but there is currently little research that differentiates these factors. Although little is known about the underlying mechanism responsible for the relation between ASD and seizures, the correlation is well established. Seizures may be more difficult to identify in individuals with ASD, particularly in young children, as the behavioral signs of seizure activities may present similarly to ASD symptoms (e.g., unresponsiveness to auditory stimuli, staring into space, stereotyped movements; Reilly & Gillberg, 2016). Therefore, assessment of possible seizures is warranted in young children with ASD so that the presence of seizures can be identified and treated at as young an age as possible. Comorbid seizures or seizure disorders are important considerations in assessment and treatment, as individuals with ASD with abnormal neurological activity may demonstrate lower functioning in areas such as social skills, adaptive behavior, and communication (Mannion & Leader, 2014). Treatments for sei-

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zures typically involve anti-epileptic drugs (AEDs). The type of AED prescribed typically depends on the type of seizure and its associated EEG pattern, as well as individual characteristics. For example, certain AEDs (i.e., valproate, lamotrigine, and topiramate) are very effective in treating absence seizures, but others can cause deterioration (i.e., carbamazepine, tiagabine; Noachtar & Rémi, 2009). Therefore, accurate assessment and diagnosis of the type of seizure is crucial for treatment decisions. Additionally, other intervention options such as diet (i.e., ketogenic) and surgery are sometimes also considered (Gillberg, 1991). Professionals with a background in neurology should be consulted when determining treatment decisions for individuals with epilepsy, as seizures can impact functioning as well as response to interventions for autism-specific symptoms.

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GI issues have important implications for treatment, as some researchers have suggested that these issues may be related to behavioral problems (Buie et al., 2010; Chaidez, Hansen, & Hertz-Picciotto, 2013) as well as internalizing symptoms (Mannion & Leader, 2013a; Mazurek et al., 2012). This relationship may be explained by the physical discomfort associated with these symptoms, but currently there is little research that explores the reason for this association. Regardless, the presence of GI problems is an important consideration for treatment of children with ASD. Abnormal sensory responses in individuals with ASD should also be considered, as many individuals exhibit food selectivity and feeding problems (Emond, Emmett, Steer, & Golding, 2010; Ledford & Gast, 2006). For children with these concerns, the types of food that they accept may impact GI functioning, so incorporating behavioral and/or pharmacological treatGastrointestinal Issues ments may be appropriate for these individuals. Evaluation by a nutritionist may be warranted in Children with ASD frequently exhibit gastroin- some cases to inform a treatment to address any testinal (GI) issues. Symptoms often include nutritional deficiencies due to a restricted diet constipation, diarrhea, reflux, vomiting, and (Buie et al., 2010). abdominal pain (Beighley, Matson, Rieske, & Given that the etiology of the relationship Adams, 2013; Black, Kaye, & Jick, 2002; Hsiao, between GI issues and ASD is still not clear, 2014; Mannion et al., 2013; Molloy & Manning-­ interdisciplinary methods may be warranted to Courtney, 2003). The prevalence estimates of address these concerns. The inclusion of speGI problems in this population range from 9 to cialists such as gastroenterologists, dieticians, 61% (Black et al., 2002; Ibrahim, Voigt, Katusic, allergists, and professionals specializing in Weaver, & Barbaresi, 2009; Mazefsky, feeding treatments in assessment and treatment Schreiber, Olino, & Minshew, 2014; Mazurek planning may be advantageous (Buie et  al., et  al., 2012; Molloy & Manning-Courtney, 2010). Maenner et al. (2011) suggested that pro2003). These discrepant rates may be due to dif- fessions should consider medical, biological, fering definitions of GI problems or distinct and physiological concerns as well as diet and symptoms of interest in the research; however, nutrition in deciding on treatment plans for chilthe literature overall indicates that children with dren with ASD and co-­occurring GI problems. ASD may be more prone to GI issues than typi- Clinicians are also encouraged to ensure that cally developing children (McElhanon, parents are informed regarding empirically valiMcCracken, Karpen, & Sharp, 2014; Schieve dated methods for treatment, as several dietary et al., 2012). These symptoms may also be more trends have become popular in recent years for difficult to diagnose in this population, as many children with ASD but most of these diets lack individuals with ASD have expressive commu- much empirical evidence for the treatment of nication deficits and may not be able to effec- ASD symptoms (Mari-­ Bauset, Zazpe, Maritively convey feelings of discomfort (Mannion Sanchis, Llopis-Gonzalez, & Morales-Suarez& Leader, 2013b). Varela, 2014).

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Sleep Problems Sleep difficulties are common in children, but there is evidence that children with ASD are more likely to have sleep problems (Richdale & Schreck, 2009). These include primary sleep disorders (e.g., circadian rhythm disorder, obstructive sleep apnea) as well as behavioral sleep disorders (Carbone, 2013). Sensory processing abnormalities, specifically hypersensitivity and associated hyperarousal, have also been implicated in sleep problems in children with ASD (Liu, Hubbard, Fabes, & Adam, 2006; Mazurek & Petroski, 2015). Researchers have suggested that sleep problems, like many of the other concerns previously discussed, may be related to autism symptom severity (Adams, Matson, Cervantes, & Goldin, 2014; Kozlowski, Matson, Belva, & Rieske, 2012). For example, Schreck, Mulick, and Smith (2004) found that children who achieved fewer hours of sleep per night exhibited higher rates of autism symptoms and social skill impairments. Lower adaptive functioning (Carbone, 2013) and higher rates of internalizing and externalizing behaviors have also been found in children with ASD and poor sleep quality (Park et al., 2012). Additionally, a common finding is an association between sleep problems and feeding difficulties/ GI issues (Mannion et al., 2013). These findings indicate that sleep difficulties may be associated with a host of additional concerns. Sleep deprivation can impact mood, behavior, and the ability to learn (Accardo & Malow, 2015), which implies that severe sleep problems may interfere with an individual’s treatment progress. Behavioral, function-based interventions have been found to be effective in improving sleep problems in individuals with ASD (Jin, Hanley, & Beaulieu, 2013). Some professionals recommend behavioral interventions as the most suitable first choice for treatment, though in some situations additional treatments such as medication may be warranted (Richdale, 1999). Pharmacologic interventions have not been studied extensively, but there is evidence that the use of melatonin as a nutritional supplement may promote healthy sleep patterns (Bauman, 2010).

When medications are used, medical professionals should be involved in medication management to monitor potential side effects and dosage considerations (Bauman, 2010). The identification of etiology of sleep difficulties can help to inform treatment, particularly whether biomedical, behavioral, or a combination intervention is most appropriate.

Genetic Disorders Researchers have proposed that there is a genetic component to ASD, but few specific genes have been found to be associated with ASD, which suggests that there may be multiple susceptibility genes (Newschaffer et al., 2007). Although little is currently known about potential genetic mechanisms involved in ASD, researchers have found that several recognized genetic disorders are often associated with comorbid ASD.  Several such disorders include Angelman syndrome, Fragile X syndrome, tuberous sclerosis, and Down syndrome (Cohen et  al., 2005; Moss & Howlin, 2009). Angelman syndrome is a neurodevelopmental disorder that is caused by four specific molecular abnormalities that involve chromosomes or gene proteins. A small subset of children possesses all the clinical features of the disorder, but have no known molecular marker (Peters, Beaudet, Madduri, & Bacino, 2004). All individuals with Angelman syndrome have intellectual disability, speech and language delays, movement impairments, and an apparent positive or “happy” disposition or affect. Common symptoms also include seizures or abnormal EEG activity; delayed, disproportionate head growth or microcephaly; feeding problems; protruding tongue or wide mouth; strabismus; hyperactivity; and sleep problems (Williams et  al., 2006). Researchers have suggested that many children with Angelman syndrome present with symptoms related to autism. For example, Peters et  al. (2004) found that 42% of children with Angelman syndrome met criteria for ASD as well. The co-occurrence of these two disorders, or at least the co-­ occurrence of symptoms, indicates that children

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with Angelman syndrome should be evaluated for ASD and that it is possible that molecular pathways may explain some of the overlap between these disorders (Peters et al., 2004). Fragile X syndrome is associated with a mutation on a gene on the X chromosome. This gene, FMR1, regulates protein synthesis (Kaufmann and Reiss, 1999, cited from Kau, Meyer, & Kaufmann, 2002). Symptoms of Fragile X syndrome include developmental delays, learning disabilities, social impairments, and behavior problems (Center for Disease Control and Prevention, 2015). ASD also tends to occur at high rates in individuals with Fragile X syndrome (Brown et  al., 1989; Hagerman et al., 1986; Harris et al., 2008; Rogers, Wehner, & Hagerman, 2001), and researchers have estimated rates of comorbid ASD to be between 5 and 46% in males with Fragile X syndrome (Brown et  al., 1986). Relatedly, Kielinen et  al. (2004) found that Fragile X syndrome occurred in 2.1% of individuals with ASD. Some studies provide evidence that the symptoms found in individuals with Fragile X syndrome manifest a particular subtype of ASD (Reiss & Freund, 1992; Rogers et  al., 2001). Researchers have indicated that males with Fragile X syndrome demonstrated impairments in social play skills, verbal and nonverbal communication, repetitive motor movements, and abnormal sensory response (Reiss & Freund, 1992). Another genetic disorder commonly associated with ASD is tuberous sclerosis complex (TSC). TSC is characterized by atypical tissue growth that causes benign tumors in various parts of the body, including the brain, eyes, skin, heart, and kidneys (Smalley, 1998). Symptoms of TSC depend on the affected organ(s) but can include seizures, skin lesions, ID, behavior problems, respiratory issues, increased intracranial pressure, and hypertension, among others (Gomez, 1987). Researchers have found that children with TSC often have comorbid ASD and ADHD symptoms (Gillberg, Gillberg, & Ahlsén, 1994). The estimated prevalence of ASD in individuals with TSC is between 1 and 25% (Fombonne, Du Mazaubruin, Cans, & Grandjean, 1997; Hunt & Shepherd, 1993; Wiznitzer, 2004). Additionally,

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TSC is associated with high rates of epilepsy and cognitive impairment, which have been suggested as risk factors for ASD in individuals with TSC (Curatolo, Porfirio, Manzi, & Seri, 2004). Down syndrome (DS), or trisomy 21, is a chromosomal disorder caused by the duplication of chromosome 21, which results in 47 total chromosomes rather than 46 (Desai, 1997). Although most individuals with DS do not exhibit ASD symptoms, rates of DS in individuals with ASD are estimated to be as high as 16.7% (Zafeiriou, Ververi, & Vargiami, 2007), and estimates of rates of ASD in Down syndrome range from 1 to 18% (DiGuiseppi et al., 2010; Fombonne et al., 1997; Lowenthal, Paula, Schwartzman, Brunoni, & Mercadante, 2007). For example, Kielinen et al. (2004) estimated a prevalence rate of 3.7% for DS in a sample of children and adolescents with ASD, and Kent, Evans, Paul, and Sharp (1999) found that 7% of children with DS met criteria for ASD. ASD in Down syndrome has also been found to be related to great cognitive impairment (DiGuiseppi et al., 2010). The identification of comorbid ASD in individuals with DS is important for treatment, as many ASD symptoms differ from those characteristic DS and therefore warrant different treatment approaches. Carter, Capone, Gray, Cox, and Kaufmann (2007) found that children with DS and ASD had a distinct behavioral presentation that included stereotypic behavior, anxiety, and social withdrawal. Children with ASD often present with very different social impairments and behavioral problems than those with DS (Reilly, 2009), and so treatment typically employed for DS may be insufficient for treating symptoms characteristic of ASD. Although alterations to intervention plans may differ significantly based on the type of comorbid genetic disorder and the individual’s symptoms, the identification and diagnosis of any potential genetic disorders is essential. Specific differences seem to include level of intellectual functioning and motor impairments, as these symptoms are often considered to cause significant impairment in some individuals with genetic disorders (DiGuiseppi et  al., 2010; Williams

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et  al., 2006). Although there is currently little research that provides specific suggestions for intervention approaches, professionals should consider co-occurring genetic disorders when designing and monitoring treatment as these comorbidities may impact both the treatment targets and the individual’s response to treatment.

et al., 2015). Further research on this association is needed to understand the clinical implications of this potential association and to determine treatment considerations.

Allergies and Asthma

Hearing Impairments

There has been some investigation as to whether individuals with ASD have compromised immune function, which may result in an increase in inflammatory disorders, such as asthma and allergies (Becker, 2007; Chen et  al., 2013). The National Health Interview Survey from 2006 to 2010 (Schieve et al., 2012) indicated that parents reported that 21% of children with ASD had asthma, 15.6% had eczema or skin allergies, and 9.6% had food allergies and that these rates were higher than those found in children with DD.  Additionally, several researchers have proposed that rates of asthma may be higher in children with ASD than typically developing children (Kotey, Ertel, & Whitcomb, 2014; Miyazaki et al., 2015). The findings of a study by Tsai et al. (2014) indicated that asthma may be a risk factor for a later ASD diagnosis. Similarly, Miyazaki et al. (2015) found that children with ASD were 69% and 66% more likely to have asthma and seasonal allergies, respectively, than children without ASD.  However, children with ASD did not demonstrate higher rates of food allergies. Conversely, other researchers have found that rates of allergies and asthma are not significantly higher in children with ASD than typically developing children (Mrozek-Budzyn, Majewska, Kiełyka, & Augustyniak, 2012). For example, a recent meta-analysis conducted by Zheng et  al. (2016) found no significant association between asthma and ASD.  Overall, the research on whether there is a relationship between asthma, allergies, and autism is inconclusive. If there is a relationship between allergic diseases and ASD, it is possible that this may represent an increased immune sensitivity, which may be related to the way children with ASD process stress (Miyazaki

Children with ASD have been found to have higher rates of hearing impairments than the general population (Kancherla, Van Naarden Braun, & Yeargin-Allsopp, 2013; Rosenhall, Nordin, Sandström, Ahlsen, & Gillberg, 1999; Szymanski, Brice, Lam, & Hotto, 2012). The presence of deafness or hearing deficits are of particular concern for this group because children with comorbid hearing impairment infrequently received an ASD diagnosis later than children without hearing problems (Kancherla et al., 2013; Mandell, Novak, & Zubritsky, 2005; Roper, Arnold, & Monteiro, 2003). Delayed diagnosis has significant implications for children with ASD, as a diagnosis is typically a prerequisite for receiving services. Several researchers have proposed that the reason for the delay in ASD diagnosis may be at least partially explained by similarities in symptoms of hearing impairment and ASD (e.g.., communication deficits; Meinzen-Derr et  al., 2014; Roper et  al., 2003). However, while these symptoms may present in comparable ways, they have different underlying causes. Specifically, Szarkowski, Flynn, and Clark (2014) proposed that communication impairments in individuals who are deaf or have hearing impairments may be attributed to a delayed language development. Conversely, delays related to ASD may be explained by atypical language development. An example of the difference between these two types of development is that skills such as social communication that develop before language are typically impaired in children with ASD, but would most likely not be affected in those with hearing deficits. Therefore, despite the fact that the communication symptoms are similar, ­ treatments for these deficits

 ealth Concerns that May Obscure H an ASD Diagnosis

Comorbidities in ASD

should be tailored to address the underlying cause of the impairment. Although researchers have suggested that ASD symptoms may not differ between children with ASD and children with comorbid hearing deficits and ASD (Burns, Matson, Cervantes, Jiang, & Estabillo, 2016; Roper et  al., 2003), the suggestion that the cooccurrence may obscure the identification of ASD has significant implications for assessment and treatment.

Vision Impairments There is also some evidence that individuals with ASD may be at an increased risk for vision impairments. For example, Kancherla et  al. (2013) found that 7.2% of children with vision impairments had an ASD diagnosis. Similarly, the results of a study by Kielinen et  al. (2004) indicated that 23% of children with ASD had vision impairments and 3.7% were blind. Researchers have suggested that rates of strabismus in individuals with ASD may be as high as 18–51% (Kaplan, Rimland, & Edelson, 1999; Scharre & Creedon, 1992). A recommendation for treatment is that individuals with ASD receive routine vision tests as they may be at an increased risk for vision deficits. Due to potential sensory integration concerns, professions such as optometrists are encouraged to consider the implications of an ASD diagnosis in their assessment (Trachtman, 2008).

Challenging Behaviors Challenging behaviors are extremely prevalent within ASD, as approximately half of the individuals in this population exhibit these behaviors (Chung et  al., 2012). Typically, challenging behaviors are socially unacceptable, have a negative impact on education, and are physically dangerous (Jang, Dixon, Tarbox, & Granpeesh, 2011). Self-injurious behavior, stereotypies, and aggressive behaviors are among the most commonly reported (Fodstad, Rojahn, & Matson, 2012; Machalicek, O’Reilly, Beretvas, Sigafoos,

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& Lancioni, 2007; Matson & Nebel-Schwalm, 2007). The presence of comorbid challenging behaviors can lead to difficulties in developing social relationships and effective education and can place individuals in potentially harmful situations (Jang et al., 2011). Their presence can also disrupt skill acquisition and maintenance and increase the risk for injury to oneself and to others, use of physical restraint, use and abuse of psychotropic drugs, stigmatization, and institutionalization (Chung et al., 2012). Although challenging behaviors are also present in the general population, individuals with ASD may be at an increased risk for developing these behaviors. The majority of researchers report that at least half of individuals within this population exhibit one or more forms of challenging behavior, with general prevalence estimates ranging between 35.8 and 94.3% (Fodstad et  al., 2012). Further, many individuals exhibit multiple behaviors (Murphy, Healy, & Leader, 2009). Taken together, researchers suggest that individuals with ASD experience high levels of comorbid challenging behavior and often exhibit more than one form. There is evidence that the presence of comorbid psychopathology can exacerbate the presentation of challenging behavior in this population. According to Cervantes, Matson, Tureck, and Adams (2013), comorbid anxiety symptoms in toddlers with ASD are associated with increased expression of challenging behaviors. Researchers have also suggested that a strong relationship exists between anxiety and a specific form of challenging behavior: physical aggression (Ambler, Eidels, & Gregory, 2015). In several studies comparing rates of tantrum behaviors in children with ASD, ADHD, and comorbid ASD and ADHD, researchers found that children with comorbid ASD and ADHD demonstrated higher levels of tantrum behavior than children with ASD or ADHD alone (Goldin, Matson, Tureck, Cervantes, & Jang, 2013; Konst, Matson, & Turygin, 2013). According to Turygin, Matson, MacMillan, and Konst (2013), symptoms of depression are also associated with challenging behavior in individuals with ASD. However, this may not be the case for all forms of comorbid

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psychopathology. According to McCarthy et  al. (2010), comorbid psychopathology was not associated with challenging behavior in adults with comorbid ID and ASD. This suggests that comorbid psychopathology and challenging behaviors may be relatively independent conditions in this population. Other factors that may be associated with the presentation of challenging behavior include age, gender, and culture. Researchers have found that the severity of challenging behaviors in individuals with ASD may increase with age (Fodstad et al., 2012). Alternatively, other researchers have failed to find a relationship between age and challenging behavior (Murphy et  al., 2009), which suggests that the presence of these behaviors may be chronic and persistent and may develop early in life. The findings on gender and its association with challenging behavior have also been mixed. While some researchers have suggested that male gender may increase the risk for challenging behaviors (Mayes et al., 2012), other studies have indicated that there is no association between gender and challenging behavior (Kozlowski & Matson, 2012; Murphy et al., 2009). Challenging behaviors also appear to be somewhat universal as relatively few differences have been found across cultures. For example, according to Chung et al. (2012), rates of symptom endorsement and severity of challenging behavior between the United States, South Korea, and Israel were similar for children with ASD.

Treatment Considerations Comorbid challenging behaviors place individuals with ASD at increased risk for restrictive placements and social isolation, particularly when they disrupt the individual’s successful functioning across environments (e.g., educational, therapeutic, and community; Buschbacher & Fox, 2003). Of additional concern is the severity of challenging behavior. According to Emerson et  al. (2001), more assistance with activities of daily living (e.g., dressing, hygiene, feeding) may be necessary for individuals who present with more severe behaviors. Additionally,

J. L. Matson and C. O. Burns

these individuals may be more likely to have difficulties with incontinence and communication. These factors are important to consider when deciding on how to treat the comorbid challenging behaviors exhibited by individuals with ASD. While several treatments have been proposed, variants of applied behavior analysis appear to be among the most effective (Matson & LoVullo, 2008). In a review on the treatment of challenging behavior, Machalicek et al. (2007) identified four main types of treatment procedures used for students with ASD in school settings: manipulating antecedents, changes in the instructional environment, differential reinforcement of other behavior, and self-management. In general, the studies reviewed demonstrated that these four treatment procedures were effective. Further, the review suggested that beginning with a functional behavioral assessment (FBA) was not associated with a procedure’s effectiveness. This contradicts the recommendations of some researchers. For example, Horner, Carr, Strain, Todd, and Reed (2002) suggested that one of the key elements necessary for successful behavioral intervention is performing a FBA that defines and identifies the challenging behavior and antecedent events, as well as the contingencies that maintain that behavior. Taken together, these findings suggest that what may assist in reducing the challenging behavior in one individual may not be as effective for another. One treatment option that incorporates some of the elements described above as well as inclusion and person-centered values is that of positive behavioral support (PBS; Buschbacher & Fox, 2003). According to Buschbacher and Fox (2003), the goal of PBS is to help individuals exhibiting challenging behaviors prevent their occurrence and to achieve relevant educational goals, ultimately leading to an improved quality of life. The process of PBS incorporates strategies that are both systemic and individualized for the purpose of accomplishing these goals. This process also involves building a multidisciplinary team, as well as including the family and school personnel. The purpose of this team is to address the FBA and the intervention of challenging behavior of individuals with ASD. By ­successfully

Comorbidities in ASD

implementing PBS, positive outcomes can be achieved for several areas of the individual’s functioning, including their level of social comfort, learning engagement, and adaptability to a number of settings and situations. One important limitation of PBS is that it requires a high use of resources such as staff time; however, this increases the likelihood that the goals of PBS will be reached. The development of interventions such as PBS follow the general trend toward more positively oriented behavioral interventions. While more intrusive interventions that incorporate elements such as punishment and aversives are still being used to some extent, there has been a great push toward interventions that incorporate some of the elements described above (e.g., differential reinforcement), and as such, these more intrusive interventions should typically be considered after less invasive procedures have been tried (Matson & LoVullo, 2008). When selecting a course of treatment or intervention for an individual with ASD, it is important to consider the presence of challenging behaviors, the form and function of the behavior, and the factors that may influence their presentation.

Comorbid Psychopathology Comorbid psychopathology is very common in individuals with ASD. According to Buck et al. (2014), outcome studies of adults with ASD have found high rates of comorbid psychopathology including anxiety, depression, and ADHD, with up to 69% of individuals meeting lifetime criteria of a comorbid condition. Other researchers have estimated prevalence rated as high as 74% (Mattila et al., 2010). One of the more common comorbid conditions is anxiety. Prevalence estimates for anxiety disorders among individuals with ASD range from 11 to 84% (Cervantes et al., 2013; Leyfer et  al., 2006). This estimate is higher than that for typically developing individuals (e.g., 8.3 to 27.0%; Costello, Egger, & Angold, 2005). Other studies have similarly identified anxiety as having one of the highest prevalence

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rates of comorbid psychopathology within this population (Gotham et  al., 2015; Joshi et  al., 2013; Simonoff et  al., 2008). In individuals with ASD, there may be an association between specific symptoms of anxiety and the onset and course of comorbid anxiety. For example, symptoms of social phobia generally present earlier than other anxiety symptoms, with onset often reported early in life (Hepburn, Stern, Blakeley-Smith, Kimel, & Reaven, 2014). Symptoms of social phobia or social anxiety are also among the most common symptoms of anxiety reported in individuals with ASD (Spain et al., 2016). As to why anxiety is one of the most common comorbid conditions, researchers suggest that it may be due to difficulties with aversive emotional reactions and emotion identification and understanding (Maisel et  al., 2016). Therefore, interventions that specifically target these difficulties may be beneficial. Other common comorbid conditions include depression, ADHD, and oppositional defiant disorder (ODD). Researchers have suggested a similarly high rate of depression among this population as for anxiety (Buck et  al., 2014; Gotham et al., 2015; Joshi et al., 2013). Prevalence estimates for depression in this population range from 4 to 58%, while estimates for typically developing individuals are lower at 12% (Fung, Lunksy, & Weiss, 2015). Further, prevalence for combined anxiety and depression in this population has been estimated at 6% (Bitsika, Sharpley, Andronicos, & Agnew, 2016). Prevalence estimates for ADHD and ODD among this population range from 28.2 to 30.6% and 7.0 to 28.1%, respectively (Leyfer et al., 2006; Simonoff et al., 2008). Researchers have suggested that comorbid ADHD may be a risk factor for developing further psychopathology among this population. According to Simonoff et al. (2008), 84% of individuals with ASD and comorbid ADHD received an additional comorbid diagnosis. Some researchers suggest that there may be a causal relationship between ASD and comorbid psychopathology. According to van Elst, Pick, Biscaldi, Fanmeier, and Riedel (2013), symptoms of ASD may lead to difficulties in social relation-

40

ships, misunderstandings, and conflicts. These difficulties then may lead to the d­ evelopment of comorbid psychopathology such as anxiety or depression. Another factor associated with the presence of comorbid psychopathology is that of executive functioning. According to Hollocks et  al. (2014), there is a negative association between anxiety and executive functioning in individuals with ASD.  Other researchers have found a similar relationship between ASD and symptoms of depression (Andersen, Skogli, Hovik, Egeland, & Øie, 2015). Assessment of comorbid psychopathology should regularly follow a diagnosis of ASD. However, symptom overlap between ASD and other disorders can complicate the assessment process (Cervantes et  al., 2013). Identification of comorbid psychopathology is also made difficult by a lack of measures available to aid clinicians in assessing these conditions (Buck et al., 2014). Due to the potential for worsening of symptoms or deficits, it is important to assess for the presence of comorbid psychopathology as it would help identify targets for treatment.

Implications for Treatment According to the National Institute for Health and Clinical Excellence (NICE) guidelines, care for individuals with ASD should be multidisciplinary across a number of professions (NICE, 2012). When making decisions regarding treatment, several considerations need to be made including previous interventions used and their effects, supports needed for interventions, functions of challenging behaviors, presence of comorbid psychopathology, and characteristics of potential and current interventions and their possible side effects. Recommendations for the treatment of challenging behaviors and comorbid psychopathology are also provided by the NICE guidelines, and many are based on behavioral principles regularly used in this population. One particular treatment that has been shown to be effective in treating some of the comorbid

J. L. Matson and C. O. Burns

conditions in ASD has been that of cognitive behavioral therapy (CBT). For anxiety, CBT that incorporates characteristics of the individual with ASD has had some success. According to Shaker-­ Naeeni, Govender, and Chowdhury (2014), individuals with ASD and anxiety may benefit from modified CBT. However, it is unclear what modifications applied to CBT would be most effective. In a meta-analysis of the literature on CBT for anxiety in this population, a moderate effect size was found (Ung, Selles, Small, & Storch, 2015). In a randomized controlled trial using a CBT program designed for adolescents with ASD and anxiety, a positive treatment effect was again found (Wood et al., 2015). Somewhat in contrast, a review by Binnie and Blainey (2013) suggests that the evidence is mixed regarding the effectiveness of CBT for individuals in this population. CBT allows for the individual with ASD’s specific needs to be incorporated into the therapy which may improve its effectiveness. It is also important to consider characteristics of the individual and their family when implementing an intervention based on CBT (Ung et  al., 2015). Overall, the presence of ASD should not exclude the individual from receiving intervention like CBT for comorbid psychopathology. Additional treatment options for comorbid psychopathology include pharmacologic interventions. While no such interventions exist for treating the core symptoms of ASD, there is evidence that medication can be an effective treatment for anxiety and depression (Boyd, Woodbury-Smith, & Szatmari, 2011). Before choosing pharmacologic interventions to address comorbid psychopathology, it is important to assess the individual with ASD’s mental health and associated contextual factors. This allows for the possibility of using alternative interventions, such as those discussed above, before or alongside pharmacologic treatment. When these treatments are an option, it is important to discuss benefits, risks, and potential side effects. The ideal treatment approach for individuals with ASD is specific to the individual and their relevant difficulties and incorporates interventions across disciplines as needed (Boyd et al., 2011). It is recommended that regular evaluations for

Comorbidities in ASD

comorbid psychopathology be performed to ­better inform treatment decisions made for these individuals.

Conclusion Comorbid conditions are very common in individuals with ASD (Bauman, 2010; Matson, Hess, & Boisjoli, 2010) and can involve a wide variety of disorders that include medical, genetic, neurodevelopmental, psychopathological, and behavioral concerns. The presence of these conditions have the potential to intensify impairments in functioning beyond what can be accounted for by an ASD diagnosis alone (Buschbacher & Fox, 2003; Emerson et  al., 2001; Mannion & Leader, 2014; Mazurek, 2016). Given that ASD is a complex disorder that warrants comprehensive, individualized, and integrated intervention, addressing a comorbid condition may be more complex than simply adding a particular type of service (e.g., medication for ADHD or CBT for anxiety). Many intervention strategies designed to treat only one isolated disorder may not be as effective when there are multiple psychiatric or medical concerns. Therefore, additional research on differences in treatment response in relation to comorbid conditions is warranted. The term comorbidity typically refers to disorders that are considered secondary. The delegation of one disorder as the primary concern and other disorders as secondary serves a clinical purpose of informing both the prioritization of intervention goals and the recommendation of appropriate resources and services (Matson & Nebel-Schwalm, 2007). ASD is typically considered the primary disorder as it is neurodevelopmental and causes pervasive impairments. However, given the potential for comorbid disorders to exacerbate existing deficits or cause additional impairments, these concerns should not be overlooked or disregarded in treatment. To ensure the most effective care, all professionals who work with this population should have experience with and be knowledgeable

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about the development, course, and nature of ASD as well as the effects common comorbid conditions can have. Collaboration between professionals in specialized fields, such as speech and language pathologists, occupational and physical therapists, special education consultants, behavior analysts, and physicians, to develop integrated intervention plans is recommended (Cox, 2012). In order to provide effective and optimal treatment, the identification of comorbid conditions is of great importance, and professionals should consider the disorders discussed in this chapter as well as any additional concerns when determining and monitoring treatment plans for individuals with ASD.

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Comorbidities in ASD Health Interview Survey, 2006-2010. Research in Developmental Disabilities, 33(2), 467–476. https:// doi.org/10.1016/j.ridd.2011.10.008 Schreck, K.  A., Mulick, J.  A., & Smith, A.  F. (2004). Sleep problems as possible predictors of intensified symptoms of autism. Research in Developmental Disabilities, 25(1), 57–66. https://doi.org/10.1016/j. ridd.2003.04.007 Shaker-Naeeni, H., Govender, T., & Chowdhury, U. (2014). Cognitive behavioural therapy for anxiety in children and adolescents with autism spectrum disorder. British Journal of Medical Practitioners, 7, 7–15. Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism Spectrum disorders: Prevalence, comorbidity, and associated factors in a population-­ derived sample. Journal of the American Academy of Child & Adolescent Psychiatry, 47(8), 921–929. https://doi.org/10.1097/CHI.0b013e318179964f Sinzig, J., Walter, D., & Doepfner, M. (2009). Attention deficit/hyperactivity disorder in children and adolescents with autism Spectrum disorder: Symptom or syndrome? Journal of Attention Disorders., 13(2), 117–126. https://doi.org/10.1177/1087054708326261 Smalley, S.  L. (1998). Autism and tuberous sclerosis. Journal of Autism and Developmental Disorders, 28(5), 407–414. https://doi.org/10.1023/A:1026052421693 Soorya, L. V., & Halpern, D. (2009). Psychosocial interventions for motor coordination, executive functions, and socialization deficits in ADHD and ASD. Primary Psychiatry, 16(1), 48–54. Spain, D., Happé, F., Johnston, P., Campbell, M., Sin, J., Daly, E., … Murphy, D. G. (2016). Social anxiety in adult males with autism spectrum disorders. Research in Autism Spectrum Disorders, 32, 13–23. Stevens, T., Peng, L., & Barnard-Brak, L. (2016). The comorbidity of ADHD in children diagnosed with autism spectrum disorder. Research in Autism Spectrum Disorders, 31, 11–18. https://doi.org/10. 1016/j.rasd.2016.07.003 Szarkowski, A., Flynn, S., & Clark, T. (2014). Dually diagnosed: A retrospective study of the process of diagnosing autism Spectrum disorders in children who are deaf and hard of hearing. Seminars in Speech and Language, 35(04), 301–308. https://doi.org/10.10 55/s-0034-1389102 Szymanski, C., Brice, P., Lam, K., & Hotto, S. (2012). Deaf children with autism spectrum disorders. Journal of Autism & Developmental Disorders, 42(10), 2027– 2037. https://doi.org/10.1007/s10803-012-1452-9 Trachtman, J.  N. (2008). Background and history of autism in relation to vision care. Optometry - Journal of the American Optometric Association, 79(7), 391– 396. https://doi.org/10.1016/j.optm.2007.10.015 Tsai, P.-H., Chen, M.-H., Su, T.-P., Chen, Y.-S., Hsu, J.-W., Huang, K.-L., … Bai, Y.-M. (2014). Increased risk of autism spectrum disorder among early life asthma patients: An 8-year nationwide population-­ based prospective study. Research in Autism Spectrum

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Ethical Considerations in Interdisciplinary Treatments David J. Cox

Introduction The etiology of autism spectrum disorders (ASD) likely involves a complex interaction between genes and the environment (Engel & Daniels, 2011). The resulting complexity of ASD etiology leads to a wide range of variability in skill deficits and excesses. The wide range of behavioral excesses and deficits often leads individuals with ASD to receive treatment from varying combinations of people spanning a variety of professional disciplines (Brodhead, 2015; Cox, 2012). Collaboration between professionals spanning varied professional disciplines affects members of the helping professions and the individuals they serve (e.g., Fewster-Thuente & Velsor-­Friedrich, 2008). However, increased benefit to the client from interdisciplinary collaboration is far from automatic. Outcomes resulting from interdisciplinary collaboration may be considered beneficial when overall treatments are enhanced and the individual with ASD is better off than if they would have received the same treatments independent of professional collaboration. In these instances, members of the collaborating professional disciplines also are likely to benefit because they learn more about other disciplines and the D. J. Cox (*) Behavioral Pharmacology Research Unit, Department of Psychiatry & Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA e-mail: [email protected]

areas of knowledge those expert professionals bring to the treatment context. Outcomes resulting from interdisciplinary collaboration may be detrimental if treatment from one or more disciplines contradicts or undermines treatment implemented by one or more other disciplines. Effective interdisciplinary collaboration requires a variety of key competencies. These include communication, understanding one’s professional role, knowledge of the professional role of others, leadership, ability to function within a team, and conflict resolution (Drotar & Sturm, 1996; MacDonald et al., 2010). While much has been written on the practical and institutional barriers to interdisciplinary collaboration (e.g., Hinshaw & DeLeon, 1995; Mellin & Winton, 2003; Tovian, 2006), this chapter focuses on the ethical issues that are likely to arise from interdisciplinary collaboration in treatment for individuals with autism spectrum disorders. Specifically, this chapter focuses on general areas of practice that may lead to ethical disagreement and that can be mitigated through effective communication and conflict resolution. Developing an interdisciplinary environment that fosters respectful communication allows for proactive identification of potential ethical disagreements and the opportunity to collaborate on an ethical resolution. In turn, effective collaboration will likely result in improved outcomes for the individuals we serve (e.g., Rogers, Anthony, & Danley, 1989). This chapter includes three sections. The first section highlights areas of practice that may

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lead to ethical disagreement—especially when effective communication is minimum or absent. The second section discusses the importance of understanding codes of ethics from other disciplines. This section also provides a brief overview of the commonalities and differences spanning Western ethical codes for helping professionals. Finally, the third section discusses strategies that increase the probability of effective interdisciplinary collaboration and ethical care for each individual client. Although many examples are provided from the author’s area of clinical expertise (i.e., applied behavior analysis), examples abound from all disciplines and should be voiced through ongoing interdisciplinary dialogue.

 reas for Potential Ethical A Disagreement Members of helping professions likely chose and continue to work in their profession because of the positive impact they have on the lives of others. That is, to engage in actions intended to benefit and promote others’ welfare (i.e., beneficence; Beauchamp, 2016). However, benefit and welfare are broad terms that can encompass a variety of specific outcomes depending on one’s audience and the situation the term is used. Conflict about what constitutes beneficence is less likely when speaking and working with people that share a similar background and training in how to view health (e.g., members of one’s own health profession). However, interdisciplinary treatment teams can involve a variety of perspectives on what constitutes health as well as how specific health outcomes are prioritized to maximize beneficence. Treatment provided by one discipline is not isolated from the treatment provided by other disciplines. For example, a new drug regimen will likely have an effect across the individual’s entire day including academic and therapeutic environments (e.g., ABA therapy, speech and language therapy, occupational therapy). Similarly, a plan for reducing aggressive behavior developed and implemented by a behavior

analyst is only as good as the consistency with which it is implemented before and after aggression. In turn, behavior plans with generalized benefits necessitate involvement of people across the individual’s entire day. The co-dependence between professionals and interaction between treatments suggest interdisciplinary teams should regularly and proactively communicate information related to their view of beneficence. Developing interdisciplinary environments that regularly practice respectful communication and collaborative routes to conflict resolution will, in the long run, lead to effective and efficient collaboration between members of an interdisciplinary team. Regular communication and collaboration may also result in professionals viewing their work more as a member of a treatment team rather than as an independent and isolated practitioner. In turn, simply establishing an environment where everyone perceives their work as a member of an interdisciplinary team can mitigate many differences that may arise (Kobayashi & McAllister, 2014). Nevertheless, differences are still likely to arise in how different members view beneficence. These differences are likely to occur across three areas: what exactly a practitioner is targeting through a treatment; how they are planning to implement a treatment; and why a treatment has been chosen among available alternatives.

What Is Targeted for Treatment? The first area that conflict may arise is what should be targeted for treatment. For example, stereotypy includes responses that are repetitive, rigid, and invariant and includes simple body movements such as rocking and flapping arms, finger posturing, and sometimes complex patterns of movement (Joosten, Bundy, & Einfeld, 2009). Although a variety of interventions have been developed to successfully decrease stereotypy (see Lanovaz & Sladeczek, 2012—for review of behavioral interventions), whether stereotypy is something that should be reduced without question can be debated. Relatedly, others have argued that approaches seeking

Ethical Considerations in Interdisciplinary Treatments

normality as the end goal for individuals with ASD are not appropriate and may even be detrimental (e.g., Shyman, 2016). Given the interdependence of interventions and reliance on all caregivers to maintain treatment protocols, treatment fidelity is likely to be subpar unless everyone is on board with what the other professionals are targeting for change. How professionals prioritize treatment targets is also relevant to discussions of what different professionals target for treatment. For example, everyone may agree that a client needs to learn how to communicate their wants and needs, learn how to socialize with peers, and learn how to cope with events that make them frustrated or angry. However, time is a notoriously limited resource, and events may arise where practitioners must choose how they will prioritize the above skill targets. If each practitioner chooses a different target to prioritize, then overall progress may be slower than if all prioritized similar skill targets and generalization across settings and people. Disagreement about what to target may be of greater concern than mere differences in opinion. For example, the Behavior Analyst Certification Board (BACB) Professional and Ethical Compliance Code obligates behavior analysts to target only observable and measurable behavior (BACB, 2014). Philosophical positions aside, requests from other members of an interdisciplinary team for the behavior analyst to work on emotion regulation immediately place the behavior analyst in a precarious situation. Do they work on emotion regulation and risk the repercussions that may arise from violating one’s code of ethics and the scorn of their behavior analytic colleagues? Or do they refuse to work on emotion regulation or target it in a different way and impact the collaborative and cooperative relationships needed for interdisciplinary teams to maximize effectiveness? In sum, interdisciplinary team members should engage in ongoing and active communication with all members of the interdisciplinary team relative to what they are targeting with active and future interventions. Active and continuous interdisciplinary communication allows

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for discussion of prioritizing intervention targets and provides an opportunity for team members to voice any potential concerns they may have about what interventions they may be asked to support and work on directly.

How Is Treatment Implemented? The second area that conflict may arise is how treatment is implemented. For example, all parties may agree that high rates of aggressive behavior should decrease, the amount of engagement with academic tasks should increase, and a client should better communicate their wants and needs. However, different professionals may disagree about how best to reduce problematic responses and teach skills. For example, the use of extinction is an effective approach to reducing aggressive behavior (e.g., Lerman, Iwata, Shore, & Kahng, 1996). However, this may involve an extinction burst that not every interdisciplinary team member wants to, or physically can, withstand. By engaging in proactive and ongoing communication with other members of an interdisciplinary team, the behavior analyst can likely get a sense of what will or will not work with other team members, and they can subsequently tailor the prescribed intervention. Similar situations may arise for prescribed interventions from all members of the interdisciplinary team due to limitations in the abilities or time of other members on the interdisciplinary team. Disagreement about how to target skill deficits and excesses may be of greater concern than differences in opinion. Examples that may raise ethical objections within and across disciplines are the use of aversive control to reduce problematic behavior (e.g., time-out, response cost), pharmaceutical approaches to behavior change as opposed to skill acquisition programs (e.g., Newhouse-Oisten, Peck, Conway, & Frieder, 2017), sensory-integration therapy for reducing problematic behavior (e.g., Lang et  al., 2012), and providing contrived reinforcers for the completion of academic tasks (e.g., Goswami & Urminsky, 2017; Levy et al., 2017). In each of the above instances, the code of ethics for one or

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more interdisciplinary members would put them in a situation where tension exists between one’s professional code of ethics and cooperation within an interdisciplinary team. In sum, even if members of an interdisciplinary team agree on what skills to target for acquisition and reduction, disagreement may still exist relative to how those responses are targeted for acquisition or reduction. Some of these disagreements may be the result of the code of ethics meant to guide the behavior of each practitioner. Active and continuous interdisciplinary communication will allow all team members to voice concerns they may have about how treatment is implemented by another professional and what they may be asked to do themselves.

Why Is a Treatment Selected? The third area that conflict may arise is why a given treatment is selected among available alternatives. This area of conflict is likely where conflict negotiation skills are most needed. Every profession trains their members in basic philosophical assumptions regarding causes of behavior, epistemological assumptions regarding how we know something is true, and assumptions about the research methods sufficient to demonstrate a high likelihood that something is true (e.g., that an intervention is effective). Graduate and postgraduate training relative to these assumptions influences why interdisciplinary team members choose the intervention they do and what evidence they are likely to consider influential for interventions proposed by other professions. Two specific topics highlight this potential disagreement. Where does behavior originate? The answer to this question has been debated among thinkers for centuries (Hankinson, 1998). Two ends of the spectrum of answers include behavior originates within the organism via the mind, brain, or other internal cognitive structures (e.g., Churchland, 2002) and behavior originates in the environment surrounding the organism (e.g., Skinner, 1953). Each professional in an interdisciplinary setting likely received graduate training empha-

sizing the origin of behavior lies somewhere on this spectrum. Recognizing that other team members were trained in a different perspective is important because interventions chosen from the opposite perspective will likely appear limited and superficial compared to one’s own perspective (e.g., Baum, 2012; Ryan & Deci, 2000). In turn, ethically justified disagreement relative to maximizing benefit and minimizing harms is likely to be offered from both sides because the other side is failing to target the “cause” of behavior. These differences are likely to remain unresolved in the time needed to make treatment decisions for most clients. As such, open and honest communication and conflict resolution skills may be needed to get all team members on board for a treatment plan everyone feels ethically comfortable with.1 What counts as sufficient evidence for a recommended treatment? Disagreement in answering this question also is likely to remain unresolved in the practical time needed for treatment decisions. Although most helping professions increasingly espouse an evidence-based approach to clinical decision-making (e.g., Bennett & Bennett, 2000; Bernstein Ratner, 2006), what exactly constitutes strong evidence differs between professions. For example, behavior analysts have long placed significantly greater weight on research demonstrating behavior change using within-subject designs compared to results from group-design research (e.g., Johnston & Pennypacker, 2009; Roane, Ringdahl, Kelley, & Glover, 2011). In contrast, medical doctors have long placed significantly greater weight on research using group designs and randomized controlled trials in particular (e.g., Burns, Rohrich, & Chung, 2011). Recognizing this dif-

It is recognized many professionals practice and implement the findings of their respective science in the absence of any philosophical commitment to the originating cause of behavior (McDowell, 2012). Nevertheless, this is an area the author has observed as the root cause of much discomfort in agreeing to interventions recommended by other professionals from differing disciplines. As such, it seems important to note this area of potential disagreement even if practitioners do not openly espouse one position or recognize its influence on their daily practice. 1 

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ference is important because several codes of ethics for helping professionals require practitioners use evidence-based practices (e.g., American Psychological Association (APA), 2010; BACB, 2014). However, different professions may not agree with the evidence offered by another discipline. This may place a professional in the same position of tension between their profession and interdisciplinary collaboration.

Summary Graduate and continuing education influence the way helping professionals approach and think about why they choose the interventions they choose. Helping professionals each have unique and varied educational and training experiences. These experiences result in philosophical and epistemological assumptions that differ from one another and are unlikely to be resolved through brief discourse. Many of these assumptions are implicitly or explicitly expressed in the profession’s code of ethics. Conflict negotiation is likely the best (or perhaps only) route to resolution of disagreements regarding why. However, it can be helpful to remind ourselves that every interdisciplinary team member is there with the same shared goal of benefitting the client. We should work from that area of common ground and maintain client benefit as the focus of conflict negotiation.

Codes of Ethics2 The influence of ethical codes on behavior is likely to vary by individual and is still widely debated (e.g., Helin & Sandström, 2007; Kaptein NB: The author recognizes that a variety of disciplines and relevant professional associations may be involved in an interdisciplinary setting for individuals with Autism Spectrum Disorders. To make this chapter tractable, the author chose to include codes of ethics from the American Speech-Language-Hearing Association, the American Psychological Association, the American Occupational Therapy Association, the Association of American Educators, the Behavior Analyst Certification Board, and 2 

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& Schwartz, 2008). However, compliance with one’s code of ethics is emphasized in most graduate training programs. In addition, the ability to maintain the credentials required to practice within one’s discipline has been increasingly tied to ethical conduct for some professions (e.g., BACB, 2016). As highlighted above, this can make interdisciplinary collaboration particularly tricky as the treatment target, method, or theoretical assumptions underlying treatment by one professional may require a collaborating professional to violate or bend their own ethical code. Consequently, the conflicting contingencies likely place a strain on successful interdisciplinary collaboration. Most helping professionals on an interdisciplinary team are there because they want to help that client. However, beneficence is not the only common value underlying practitioner conduct or the supporting codes of ethics spanning members of an interdisciplinary team. Interdisciplinary communication and conflict resolution can be aided by understanding the common values all interdisciplinary team members bring to the treatment context. This can be accomplished by developing a working understanding of the fundamental ethical principles central to most Western helping professions’ codes of ethics and the specific language in ethical codes from other disciplines.

Four Principles of Western Bioethics Most codes of ethics for helping professionals in the United States make use of the four primary principles of Western bioethics (Beauchamp & Childress, 2012). These include respect for autonomy, nonmaleficence, beneficence, and justice. As many authors have noted, regardless of how one orders these principles in text, it is generally assumed that all four principles are ­

the American Medical Association. However, the offered analysis is not meant to be exhaustive. Rather, it is meant to demonstrate general considerations that should be made when working with members of different professions in an interdisciplinary setting.

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used in concert and with equal consideration when determining how to behave in a given situation (e.g., Beauchamp & Childress, 2012; Office of the Secretary, 1979). The first principle of Western bioethics is respect for autonomy. Respect for autonomy refers to behavior that is free from both controlling interference by others as well as the absence of limitations such as by providing inadequate information (Beauchamp & Childress, 2012). Relative to interdisciplinary intervention settings for individuals with autism spectrum disorders, this generally takes the form of obtaining informed consent from the legal guardians and/or the individual client before an intervention is implemented. Theories may differ between practitioners relative to what constitutes choice free from controlling interference as well as how much information should be provided so that the limitation criteria are met. However, most helping professionals agree that the client (and legal guardian where necessary) should be involved in the treatment decision process and must agree to participate before an intervention can be implemented. Remembering this principle may be helpful toward conflict resolution in situations where helping professionals disagree on what is targeted for intervention, how an intervention is implemented, or why an intervention is prescribed. In addition, respect for autonomy may provide a route toward ranking outcomes relative to nonmaleficence and beneficence for each specific client. Put succinctly, client preference may aide in resolving ethical disagreement about what, how, and why certain goals are targeted for intervention. The second principle of Western bioethics is nonmaleficence. Nonmaleficence is the obligation to avoid harming others or, if avoidance is impossible, to take a course of action that minimizes harm (Beauchamp & Childress, 2012). Relative to interdisciplinary intervention settings for individuals with autism spectrum disorders, this generally takes the form of prescribing interventions that reduce the likelihood of continuing current harmful behaviors (e.g., self-injurious behavior) or that increase the likelihood of avoiding harmful behaviors in the future (e.g., devel-

D. J. Cox

oping age appropriate social skills). Remembering this principle may be helpful toward conflict resolution in situations where helping professionals disagree because it may be the primary basis for objection to a prescribed intervention. That is, one professional may believe avoidable harm is being done to the client by targeting one goal or failing to target another. Labelling disagreement as founded on nonmaleficence can put the conversation into terms most are familiar with and support as valuable in the intervention setting. The third principle of Western bioethics is beneficence. Beneficence refers to a general obligation to engage in behaviors that result in helping others (Beauchamp & Childress, 2012). Relative to interdisciplinary settings for individuals with autism spectrum disorders, this generally takes the form of prescribed interventions that advance the skill set of the individual in a way that improves their well-being. What constitutes well-being and how it is measured may result in disagreement between helping professionals. Nevertheless, labelling disagreement as founded on differing views of beneficence can help remind all involved that they share the common goal of maximizing benefits gained through the interdisciplinary treatment setting. In turn, reframing the dialogue around this common value may help toward conflict resolution. Finally, the fourth principle of Western bioethics is justice. Justice in a healthcare context generally refers to fair allocation of resources and services to persons of a certain class to all members of that same class (Beauchamp & Childress, 2012). Stemming from the principle of equality (i.e., equals must be treated equally and unequals treated unequally—Beauchamp & Childress, 2012), this might take the form of providing the same amount of effort, care, and access to technology and resources for all clients of the same funding level. For example, all clients who have received funding for 1 h/week of speech and language therapy should receive the same amount of attention, treatment planning, access to technology, etc. However, these same clients should also receive more attention and resources than a client who has received funding for 15  min/week of therapy and less

Ethical Considerations in Interdisciplinary Treatments

than those who have received funding for 3  h/ week of therapy. As noted elsewhere (e.g., Beauchamp & Childress, 2012; Carter, Gordon, & Watt, 2016), determining fair allocation of resources and clinical attention is far from being a black-and-white decision, and using only the principle of equality can result in many seemingly unethical practices. Nevertheless, conflict resolution might be enhanced by remembering that just allocation of resources is an underlying ethical justification for what, how, and why an intervention may be prescribed by other members of an interdisciplinary team.

Other Code Commonalities In addition to the four principles of Western bioethics, many other ethical principles and obligations are common to codes of ethics for many helping professions present in an interdisciplinary setting for individuals with autism spectrum disorders (Cox, 2012). Generally, most codes of ethics for helping professionals in the United States include recommended behavior relative to four broad categories. These include conduct toward the client/student/patient, conduct relative to practice/therapy, conduct relative to one’s profession, and conduct relative to the larger community and public (see each code of ethics for more details—e.g., AAE, 2013; AMA, 2007; AOTA, 2015; APA, 2010; ASHA, 2016; BACB, 2014). Examples of conduct toward the client include maintaining client confidentiality, fiduciary responsibility, and using evidence-based approaches to intervention. Examples of conduct relative to one’s practice are engaging in profession recognized assessment and intervention practices. Examples of conduct toward one’s profession include maintaining professional competence and peer communication. Finally, examples of conduct toward the public and society include accurate communication with public and providing equal access to services. Recognizing these similarities is important for several reasons. First, these principles provide other avenues of common ground that may be useful in resolving potential conflict between

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members of differing helping professions. For example, while professional competence typically involves only one’s own profession, claiming to be an interdisciplinary setting (in contrast to a multidisciplinary or transdisciplinary setting; Cohen, 2014; Klein, 2010) increases the breadth of knowledge areas required to claim clinical competence (Cox, 2012). That is, interdisciplinary settings extend professional competence beyond the borders of one’s own professional activities to include the interaction of one’s professional activities with the other members of the interdisciplinary team. In turn, reduced disagreement and more efficient conflict resolution between team members may occur through establishing basic competency across other disciplines and interdisciplinary collaboration. Second, identifying and labelling these common principles and obligations continues to highlight and focus on common goals of the involved disciplines. Cooperative behavior has been shown to increase by focusing on common goals that identify each member as part of a single group compared to differences that identify each member as part of a separate group—especially when team members are interdependent as in interdisciplinary settings (e.g., Balliet, Wu, & De Dreu, 2014).

Some Notable Differences Despite the many similarities in the behavior promoted by codes of ethics for helping professionals, some differences exist. Interdisciplinary collaboration may be aided and improved through awareness of the differences in value claims made by members of other helping professions. Generally, these differences fall into categories of additional recommended clinical behaviors, the omission of recommended clinical behaviors, or the enforceability of the code of ethics. Additional recommended behaviors are behaviors outlined in codes of ethics that are not explicitly included in other codes. Interdisciplinary practitioners should be aware of these behaviors because other interdisciplinary team members may have obligations, r­esponsibilities, or behav-

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iors they must avoid that are not readily considered by members of disciplines without those obligations and responsibilities. For example, the Association of American Educators (AAE) explicitly recognizes the role and importance of educators in the “moral education” of students (AAE, 2013). In turn, skill acquisition targets involving moral development may be recommended by educators and seem inappropriate to members of other disciplines. However, the educator would be acting in accordance with their ethical code by recommending work on such behavior. Other examples of additional recommended behaviors include obligations regarding education and training of other psychologists (e.g., APA, 2010), appropriate supervision of others (e.g., AOTA, 2015; BACB, 2014), appropriate use of social media (e.g., AOTA, 2015; BACB, 2014), and disallowance of the use of testimonials (e.g., BACB, 2014). Omitted recommended behaviors are behaviors common to many other codes of ethics that are not explicitly included in a specific discipline’s code. Interdisciplinary practitioners should be aware of these omissions because members of a specific discipline may have not been required to think about those aspects of the interdisciplinary setting and may lack clear guidance from their respective profession. For example, the AAE, APA, and BACB codes of ethics do not make explicit statements or guidance regarding telemedicine/telepractice (AAE, 2013; APA, 2010; BACB, 2014). The expansion of the Internet and telecommunication technologies has led to increasing research on and use of telemedicine (Cartwright, 2000) including for individuals with autism spectrum disorders (e.g., Higgins, Luczynski, Carroll, Fisher, & Mudord, 2017; Lee et al., 2015). The use of telehealth practices may begin to be incorporated by some members of an interdisciplinary team leaving those without clear guidance from their discipline in a professional gray area. Other examples of omitted recommended behaviors include the absence of guidance for accepting gifts (e.g., AAE, 2013; APA, 2010), the absence of guidance about advertising and the use of social media (e.g., AAE, 2013), and the absence of guidance on interrupting or discontinuing services (e.g., AAE, 2013).

A final important difference between codes of ethics is the extent to which the members of a profession are held accountable for complying with a code of ethics. At one end of the spectrum are codes that are not enforceable (e.g., AAE, 2013; AMA, 2007). Social and professional contingencies may place pressure on members of these professions to adhere to their code of ethics. However, the ability to continue to practice as a member of these professions is not explicitly tied to compliance with the code of ethics unless specified by a separate local or regional entity. At the other end of the spectrum are codes that are enforceable (e.g., AOTA, 2015; ASHA, 2016; BACB, 2014). For members of these professions, compliance with the code has a direct bearing on their ability to continue practicing as a member of that profession. Recognizing the varying enforceability of codes of ethics is important because it will directly influence how flexible each interdisciplinary team member can be during conflict negotiation. Increased enforceability does not equate to increased justification for being uncooperative and inflexible during conflict negotiation. Nevertheless, recognizing the contingencies operating on everyone’s behavior in an interdisciplinary treatment context will likely aide interdisciplinary collaboration.

Summary Codes of ethics often form the foundation for value claims made by the members of helping professions. Although the influence of a profession’s code of ethics on helping behavior will vary, training relative to these codes often occurs during graduate education and continues over the course of a career. Interdisciplinary treatment teams for individuals with autism spectrum disorders include members from health professions that all share many of the same values and goals. Interdisciplinary collaboration and conflict negotiation can be improved and aided by remembering and reframing discussions relative to the values and goals shared by all while remaining cognizant of the differences between codes and the varying degrees of enforceability.

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Strategies for Ethical Interdisciplinary Collaboration

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2013) and systems analyses (e.g., Diener, McGee, & Miguel, 2009). Briefly, social network analyses monitor, track, and collect data on the interacProactive Strategies tions between individual people within a group. Systems analyses identify the components of an Proactive strategies can be implemented before organization in the context of how value-adding conflict arises in the interdisciplinary setting. The work is currently, or could be, accomplished purpose of these strategies is to establish consis- (Diener et  al., 2009). Within interdisciplinary tent patterns of effective communication between intervention settings, relatively simple social netinterdisciplinary team members. In turn, these work and behavioral systems analyses can be strategies may decrease the likelihood that dis- used to monitor, track, and improve interdisciagreement from misunderstanding and miscom- plinary collaboration over time. Most impormunication occurs. In addition, these strategies tantly, analyses of the formal relationships may establish patterns of respectful and effective between members of an interdisciplinary team communication that may prove helpful if conflict can examine how the quality and quantity of occurs. interdisciplinary collaboration influence client The first proactive strategy is to practice outcomes. jargon-­free communication. Each member of a A third proactive strategy is to develop agreed helping profession likely has received several upon institutional guidelines and joint codes of years of coursework and supervised training in ethics for collaboration (e.g., Cox, 2012). As outtheir area of expertise. With this academic and lined in the first two sections of this chapter, difclinical training comes field-specific language fering value claims or competing methods in (i.e., jargon). Although jargon is helpful for effi- support of values are likely to be the most chalcient communication between members with lenging aspect to interdisciplinary collaboration. similar training backgrounds, jargon can be off-­ Interdisciplinary organizations can proactively putting and confusing to clients as well as mem- determine what set of principles and guidelines bers of other disciplines (Becirevic, Critchfield, all team members are comfortable with relative & Reed, 2016; Critchfield, Becirivec, & Reed, to their own code of ethics. This may include 2017). In turn, miscommunication and misunder- developing a hierarchy of principles, outlining standing arising from the use of jargon can make general decision-making processes for times collaboration more difficult and perhaps conten- when values conflict, or establishing an ethics tious (e.g., Shyman, 2016). A first step toward committee/coordinator within the organization improving interdisciplinary collaboration and (e.g., Brodhead & Higbee, 2012). A related conflict resolution is practice effective jargon-­ important note is that research on the effectivefree communication with audiences other than ness of various guidelines for interdisciplinary one’s own profession. collaboration does not currently exist (e.g., Van A second proactive strategy is to develop con- Royen et al., 2013). Consequently, each interdissistent and formal relationships within the inter- ciplinary organization will likely have to develop disciplinary team network (Haines, Godley, & institutional guidelines that fit their setting, Hawe, 2011). Specifically, this involves specify- employees, and clientele. Social network and ing frequent and coordinated interactions systems analyses can, in turn, aide in modifying between members of an interdisciplinary team in and improving these guidelines over time. a way that is proactively structured and organized (e.g., weekly clinical meetings, documented case consultations). In turn, developing consistent and Reactive Strategies formal relationships between interdisciplinary team members allows the organization to take Reactive strategies can be implemented after advantage of social network analyses (e.g., Scott, conflict arises in the interdisciplinary setting. The

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purpose of these strategies is to structure interactions between interdisciplinary team members once disagreement has occurred. In turn, these strategies may increase the likelihood that the positive relationships developed between team members before the conflict remain intact.3 The first reactive strategy is to use values espoused from the codes of ethics for all team members to approach and frame the conflict. For example, the conversation can be reframed in terms of language familiar to all involved such as the short- and long-term benefits and harms resulting from various actions or inactions (i.e., beneficence and nonmaleficence). Team members could use client preference and choice to guide selection among treatment alternatives (i.e., respect for autonomy) and use science and single-subject empirical methods to determine what is most effective for an individual client (i.e., reliance on evidence-based practice). Shifting how the conflict is framed will focus communication on the outcomes most desired by the client (or their caregiver) and how progress toward those outcomes is measured (i.e., forging a shared mission—Brown, Deletic, & Wong, 2015). This contrasts with approaching the conflict with a focus on professional disagreements in methods and philosophical assumptions. A second reactive strategy is to use the conflict to develop “T-shaped” practitioners (Brown et  al., 2015). This involves each team member using the conflict as an opportunity to both cultivate their own discipline as well as expand the boundaries of their competency to other disciplines. For example, if modifications need to be made to an evidence-based intervention for successful collaboration, the member of that profession can use the opportunity to explore (and ideally research) how well the altered intervention continues to result in desired skill change (e.g., St. Peter Pipken, Vollmer, & Sloman, Conflict resolution is a relatively large area of active research with dedicated books and journals to the topic (e.g., Kelman & Fisher, 2016; Journal of Conflict Resolution). Readers particularly interested in conflict resolution within interdisciplinary settings are highly encouraged to review this literature as conflict resolution is given only a cursory glance in this chapter. 3 

2010). Such research is likely to advance the evidence-­based practice of the discipline as well as provide important data for future situations involving similar conflict. In addition, gaining knowledge from outside one’s discipline can lead to advances within one’s own discipline that may not have been considered otherwise (e.g., Mace et al., 1988). A third reactive strategy is to seek out and provide institutional support to promote and maintain the agreed upon resolution (Brown et  al., 2015). All behavior is maintained by prevailing contingencies. Any resolution will require organizational support to ensure all interdisciplinary team members can implement the agreed upon resolution. This may include training, feedback, goal setting, follow-up meetings, and/or the use of incentives to increase and maintain behavior consistent with the resolution (e.g., Jessup & Stahelski, 1999; Langeland, Johnson, & Mawhinney, 1997). All of which will likely require resources to sustain and, thus, institutional support. All members of the interdisciplinary treatment team should collectively reach out to the relevant decision-makers within an organization to ensure adequate institutional support.

Summary Ethical conflict is likely to occur in interdisciplinary treatment settings. Proactive and reactive strategies can increase the likelihood that positive interactions between members of interdisciplinary environments are established and maintained. Three proactive strategies that can aide interdisciplinary collaboration are (1) practicing jargon-­ free communication, (2) practicing formal and consistent interdisciplinary interactions, and (3) developing institutional guidelines for ethical collaboration and resolution. Three reactive strategies that aide continued collaboration are (1) reframing conflict to focus on agreed upon values, (2) using conflict to advance one’s own ­competency and the knowledge base of one’s discipline, and (3) ensuring institutional support for agreed upon resolutions.

Ethical Considerations in Interdisciplinary Treatments

Conclusion Each helping professional within interdisciplinary settings comes from a unique educational and training history. The first section of this chapter outlined where varied educational and training histories are likely to result in disagreement. Despite these differences, the motives behind the behavior of interdisciplinary team members working with individuals with autism spectrum disorders are similar. Although some philosophical positions regarding how and why interventions should be implemented may not be reconcilable, the fundamental goals and values of most Western helping professions are the same— to benefit the client. Learning how to respectfully and collaboratively discuss what, how, and why certain treatments are prescribed will provide an understanding of why a practitioner is doing what they are doing. In turn ethical considerations in interdisciplinary treatment settings can be identified before significant issues arise. Interdisciplinary collaboration can also be enhanced by learning about the ethical codes meant to guide behavior of other practitioners. The ethical codes of other disciplines provide information for why a given practitioner is doing what they are doing and why they may be unable or unwilling to do other things. The second section of this chapter outlined similarities and differences in the values and goals espoused by the ethical codes of interdisciplinary team members. Reframing conflict negotiations through shared values, while recognizing differences and limitations to flexibility for some members, may aide interdisciplinary collaboration and conflict resolution. Ethical conflict is likely to occur at some point within an interdisciplinary treatment settings for individuals with autism spectrum disorders. The final section of this chapter discussed six strategies for that may aide effective interdisciplinary collaboration. Previous authors have provided strategies that promote collaboration with people outside of one’s profession (e.g., Brodhead, 2015; Newhouse-Oisten et  al., 2017; Reed, 1984). The final section of this chapter focused on strategies that can be used by interdisciplinary

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teams as a team. The success of specific strategies will likely be dependent on the organizational setting and will require continuous monitoring, analysis, and revision. In the end, recognizing and addressing ethical considerations in interdisciplinary treatments will lead to greater outcomes for the practitioners, the organization, and—most importantly—the client.

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60 Bennett, S., & Bennett, J.  W. (2000). The process of evidence-based practice in occupational therapy: Informing clinical decisions. Australian Occupational Therapy Journal, 47, 171–180. https://doi.org/10.104 6/j.1440-1630.2000.00237 Bernstein Ratner, N. (2006). Evidence-based practice: An examination of its ramification for the practice of speech-language pathology. Language, Speech, and Hearing Services in Schools, 37, 257–267. https://doi. org/10.1044/0161-1461 Brodhead, M. (2015). Maintaining professional relationships in an interdisciplinary setting: Strategies for navigating nonbehavioral treatment recommendations for individuals with autism. Behavior Analysis in Practice, 8, 70–78. Brodhead, M.  T., & Higbee, T.  S. (2012). Teaching and maintaining ethical behavior in a professional organization. Behavior Analysis in Practice, 5, 82–88. Brown, R. R., Deletic, A., & Wong, T. H. F. (2015). How to catalyse collaboration. Nature, 525, 315–317. Burns, P. B., Rohrich, R. J., & Chung, K. C. (2011). The levels of evidence and their role in evidence-based medicine. Plastic and Reconstructive Surgery, 128, 305– 310. https://doi.org/10.1097/PRS.0b013e318219c171 Carter, D., Gordon, J., & Watt, A. M. (2016). Competing principles for allocating health care resources. Journal of Medicine and Philosophy, 41, 558–583. https://doi. org/10.1093/jmp/jhw017 Cartwright, L. (2000). Reach out and heal someone: Telemedicine and the globalization of health care. Health: An Interdisciplinary Journal for the Social Study of Health, Illness, and Medicine, 4, 347–377. https://doi.org/10.1177/136345930000400306 Churchland, P.  S. (2002). Brain-wise: Studies in Neurophilosophy. Cambridge, MA: MIT Press. Cohen, S. S. (2014). Interprofessional and interdisciplinary collaboration: Moving forward. Policy, Politics, & Nursing Practice, 14, 115–116. https://doi.org/10. 1177/1527154414533616 Cox, D.  J. (2012). From interdisciplinary to integrated care of the child with autism: The essential role for a code of ethics. Journal of Autism and Developmental Disorders, 42, 2729–2738. Critchfield, T.  S., Becirivec, A., & Reed, D.  D. (2017). On the social validity of behavior-analytic communication: A call for research and description of one method. The Analysis of Verbal Behavior, 33, 1–23. https://doi.org/10.1007/s40616-017-0077-7 Diener, L.  H., McGee, H.  M., & Miguel, C.  F. (2009). An integrated approach for conducting a behavioral systems analysis. Journal of Organizational Behavior Management, 29, 108–135. https://doi. org/10.1080/01608060902874534 Drotar, D.  D., & Sturm, L.  A. (1996). Interdisciplinary collaboration in the practice of mental retardation. In J.  W. Jacobson & J.  A. Mulick (Eds.), Manual of diagnosis and professional practice in mental retardation (pp.  393–401). Washington, DC: American Psychological Association. https://doi.org/10.1037/ 10203-057

D. J. Cox Engel, S.  M., & Daniels, J.  L. (2011). On the complex relationship between genes and environment in the etiology of autism. Epidemiology, 22, 486–488. https:// doi.org/10.1097/EDE.0b013e31821daf1c Fewster-Thuente, L., & Velsor-Friedrich, B. (2008). Interdisciplinary collaboration for healthcare professionals. Nursing Administration Quarterly, 32, 40–48. Goswami, I., & Urminsky, O. (2017). The dynamic effect of incentives on postreward task engagement. Journal of Experimental Psychology: General, 146, 1–19. https://doi.org/10.1037/xge0000206 Haines, V.  A., Godley, J., & Hawe, P. (2011). Understanding interdisciplinary collaborations as social networks. American Journal of Community Psychology, 47, 1–11. https://doi.org/10.1007/s10464010-9374-1 Hankinson, R. J. (1998). Cause and explanation in ancient Greek thought. Oxford, UK: Oxford University Press. https://doi.org/10.1093/0199246564.001.0001 Helin, S., & Sandström, J.  (2007). An inquiry into the study of corporate codes of ethics. Journal of Business Ethics, 75, 253–271. https://doi.org/10.1007/ s10551-006-9251-x Higgins, W. J., Luczynski, K. C., Carroll, R. A., Fisher, W.  W., & Mudord, O.  C. (2017). Evaluation of a telehealth training package to remotely train staff to conduct preference assessment. Journal of Applied Behavior Analysis, 50, 238–251. https://doi. org/10.1002/jaba.370 Hinshaw, A. S., & DeLeon, P. K. (1995). Toward achieving multidisciplinary professional collaboration. Professional Psychology: Research and Practice, 26, 115–116. https://doi.org/10.1037/0735-7028.26.2.115 Jessup, P.  A., & Stahelski, A.  J. (1999). The effects of a combined goal setting, feedback, and incentive intervention on job performance in a manufacturing environment. Journal of Organizational Behavior Management, 19, 5–26. https://doi.org/10.1300/ J075v19n03_02 Johnston, J. M., & Pennypacker, H. S. (2009). Strategies and tactics of Behavioral research (3rd ed.). New York, NY: Routledge. Joosten, A.  V., Bundy, A.  C., & Einfeld, S.  L. (2009). Intrinsic and extrinsic motivation for stereotypic and repetitive behavior. Journal of Autism and Developmental Disorders, 39, 521–531. Kaptein, M., & Schwartz, M. (2008). The effectiveness of business codes: A critical examination of existing studies and the development of an integrated research model. Journal of Business Ethics, 77, 111–127. https://doi.org/10.1007/s10551-006-9305-0 Kelman, H. C., & Fisher, R. J. (2016). From social psychology to the theory and practice of conflict resolution. Cham, Switzerland: Springer. Klein, J. T. (2010). A taxonomy of interdisciplinarity. In R. Frodeman, J. T. Klein, C. Mitcham (Eds.) The Oxford handbook of interdisciplinarity, 15, 15–30. Kobayashi, R., & McAllister, C.  A. (2014). Similarities and differences in perspectives on interdisciplinary collaboration among hospice team members. American

Ethical Considerations in Interdisciplinary Treatments Journal of Hospice & Palliative Medicine, 31, 825– 832. https://doi.org/10.1177/1049909113503706 Lang, R., O’Reilly, M., Healy, O., Rispoldi, M., Lydon, H., Streusand, W., … Giesbers, S. (2012). Sensory integration therapy for autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders, 6, 1004–1018. https://doi.org/10.1016/j. rasd.2012.01.006 Langeland, K.  L., Johnson, C.  M., & Mawhinney, T.  C. (1997). Improving staff performance in a community mental health setting. Journal of Organizational Behavior Management, 18, 21–43. https://doi. org/10.1300/J075v18n01_03 Lanovaz, M.  J., & Sladeczek, I.  E. (2012). Vocal stereotypy in individuals with autism spectrum disorders: A review of behavioral interventions. Behavior Modification, 36, 146–164. https://doi.org/10.1177/ 0145445511427192 Lee, J.  F., Schieltz, K.  M., Suess, A.  N., Wacker, D.  P., Romani, P.  W., Lindgren, S.  D., … Padilla Dalmau, Y.  C. (2015). Guidelines for developing telehealth services and troubleshooting problems with telehealth technology when coaching parents to conduct functional analyses and functional communication training in their homes. Behavior Analysis in Practice, 8, 190–200. https://doi.org/10.1007/s40617-014-0031-2 Lerman, D. C., Iwata, B. A., Shore, B. A., & Kahng, S. (1996). Responding maintained by intermittent reinforcement: Implications for the use of extinction with problem behavior in clinical settings. Journal of Applied Behavior Analysis, 28, 93–94. Levy, A., DeLeon, I. G., Martinez, C. K., Fernandez, N., Gage, N.  A., Sigurdsson, S.  O., & Frank-Crawford, M. A. (2017). A quantitative review of overjustification effects in persons with intellectual and developmental disabilities. Journal of Applied Behavior Analysis, 50, 206–221. https://doi.org/10.1002/jaba.359 MacDonald, M. B., Bally, J. M., Ferguson, L. M., Murray, B.  L., Fowler-Kerry, J., & Anonson, M.  S. (2010). Knowledge of the professional role of others: A key interprofessional competency. Nurse Education in Practice, 10, 238–242. https://doi.org/10.1016/j. nepr.2009.11.012 Mace, F. C., Hock, M. L., Lalli, J. S., West, B. J., Belfiore, P., Pinter, E., & Brown, D.  K. (1988). Behavioral momentum in the treatment of noncompliance. Journal of Applied Behavior Analysis, 21, 123–141. Mellin, A.  E., & Winton, P.  J. (2003). Interdisciplinary collaboration among early intervention faculty members. Journal of Early Intervention, 25, 173–188.

61 McDowell, J. J. (2012). Minding Rachlin’s eliminative materialism. The Behavior Analyst, 35, 17–27. http:// doi.org/10.1007/BF03392261 Newhouse-Oisten, M. K., Peck, K. M., Conway, A. A., & Frieder, J. E. (2017). Ethical considerations for interdisciplinary collaboration with prescribing professionals. Behavior Analysis in Practice, 10, 145–153. https://doi.org/10.1007/s40617-017-0184-x Office of the Secretary. (1979). The Belmont report. Retrieved from https://www.fda.gov/ohrms/dockets/ ac/05/briefing/2005-4178b_09_02_Belmont%20 Report.pdf Reed, S. M. (1984). Occupational therapists in the interdisciplinary team setting. Occupational Therapy in Health Care, 1, 59–66. Roane, H.  S., Ringdahl, J.  E., Kelley, M.  E., & Glover, A.  C. (2011). Single-case experimental designs. In W.  W. Fisher, C.  C. Piazza, & H.  S. Roane (Eds.), Handbook of applied behavior analysis (pp.  132– 147). New York, NY: The Guilford Press. Rogers, S.  E., Anthony, W.  A., & Danley, K.  S. (1989). The impact of interagency collaboration on system and client outcomes. Rehabilitation Counseling Bulletin, 33, 100–109. Ryan, R. M., & Deci, E. L. (2000). When rewards compete with nature: The undermining of intrinsic motivation and self-regulation. In C.  Sansone & J.  M. Harackiweicz (Eds.), Intrinsic and extrinsic motivation: The search for optimal motivation and performance (pp. 14–48). San Diego, CA: Academic. Scott, J.  (2013). Social network analysis: Third edition. Los Angeles, CA: Sage. Shyman, E. (2016). The reinforcement of ableism: Normality, the medical model of disability, and humanism in applied behavior analysis and ASD. Intellectual and Developmental Disabilities, 54, 366–376. Skinner, B.  F. (1953). Science and human behavior. New York, NY: The Free Press. St. Peter Pipken, C., Vollmer, T.  R., & Sloman, K.  N. (2010). Effects if treatment integrity failures during differential reinforcement of alternative behavior: A translational model. Journal of Applied Behavior Analysis, 43, 47–70. https://doi.org/10.1901/jaba.2010.43-47 Tovian, S.  M. (2006). Interdisciplinary collaboration in outpatient practice. Professional Psychology: Research and Practice, 37, 268–272. Van Royen, K., Remmen, R., Vanmeerbeek, M., Godderis, L., Mairiaux, P., & Peremans, L. (2013). A review of guidelines for collaboration in substance misuse management. Occupational Medicine, 63, 445–447.

Legal Considerations in Interdisciplinary Treatments Maria C. McGinley

Introduction The US Centers for Disease Control and Prevention (CDC) currently estimates that approximately 1 in 59 children born today will be identified with ASD.1 These statistics have risen sharply over the last two decades. In 2000, the incidence level was 1 in 150.2 In 2006, it increased to 1 in 110.3 In 2010, 1 in 68.4 Prevalence rates vary by geographic location, and in the 2012 surveys, boys were almost 5 times more likely to be diagnosed with autism.5 In 1943, Leo Kanner published his landmark paper, “Autistic Disturbances of Affective Contact,” describing eleven children (three girls, eight boys) who were “highly intelligent” but displayed a “powerful desire for aloneness” and “an obsessive insistence on persistent sameness.”6 Kanner would later refer to his observations as “autism.”7 This early research identifying autism

https://www.cdc.gov/ncbddd/autism/data.html. Id. 3  Id. 4  Id. 5  Christensen, Baio, Braun, et al. (2016); See also https:// www.nimh.nih.gov/health/statistics/prevalence/ autismspectrumdisorder-chart_148067.pdf. 6  Kanner (1943). 7  Kanner (1946). 1  2 

paved the way for the many researchers who would follow in Kanner’s footsteps. In 1987, Dr. Ivar Lovaas conducted a study documenting that 47% of children with autism achieved “normal levels of functioning” by first grade when those children had received 2 years of intensive 1:1 instruction (40 h per week).8 In contrast, only 2% of the children with autism in the control group had achieved “normal levels of functioning.”9 Dr. Lovaas’ research was supplemented in 1993 when he and his colleagues reported that the children from the 1987 study had maintained their acquired skills over time and would be able to succeed in life without the need for costly special education and/or lifelong residential services.10 In fact, a 1998 study found that when children aged 2–6 received intensive behavioral therapy for 3 years, anywhere between approximately $200,000 and $1,000,000.00 could be saved per individual child later in life.11 Of course, intensive early intervention will not yield the same results for each child, and the study’s estimates took into account the fact that some children will make meaningful gains during the Lovaas (1987). Id. 10  McCeachin, Smith, and Lovaas (1993). 11  Jacobson, Mulick, and Green (1998). 8  9 

M. C. McGinley (*) Mayerson and Associates, New York, NY, USA e-mail: [email protected] © Springer Nature Switzerland AG 2019 R. D. Rieske (ed.), Handbook of Interdisciplinary Treatments for Autism Spectrum Disorder, Autism and Child Psychopathology Series, https://doi.org/10.1007/978-3-030-13027-5_5

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3-year span, while the gains made by other children might be less.12 It goes without saying that the financial costs associated with autism intervention are substantial, but there are also lasting costs that are incurred when appropriate and effective autism interventions are not put into place. In Chester Upland School District v. Pennsylvania (2012), a federal district court observed “Education is expensive, until one considers the alternatives.” Some school districts may fear that financial floodgates will open if parental requests for increased services and/or supports are granted. Other districts may be concerned with allocating what may be a less than sufficient annual budget. However, many school districts have invested in providing the services and funding needed to develop quality autism programs, and the impact of those programs, for some students, may result in enormous financial savings years later. The real issue is not whether we can afford the costs of developing and maintaining quality autism programs, but whether—in the long run—we can afford not to.

 istory of Federal Statutory H Protections Many of the current autism cases involving disputes about educational programming and placements originate as matters under the Individuals with Disabilities Education Act (IDEA) which entitle students to a “free and appropriate public education” (FAPE) that is delivered in the student’s “least restrictive environment.”13 In IDEA’s predecessor statute, the Education for All Handicapped Children Act of 1975 (EHA), Congress mandated that all students with disabilities have access to a public education and established a process by which state and local educational agencies would be held accountable for the provision of such education and services.14 Prior to that time, public schools in the Id. 34 C.F.R. 300.101(a). 14  United States Code Congressional and Administrative 12  13 

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United States only accommodated approximately 1 out of 5 children with disabilities.15 In other words, roughly 80% of children with disabilities were being excluded from public education. Worse yet, many states had laws that expressly excluded children with certain types of d­ isabilities from attending public school.16 More than 1 million children in the United States did not have access to the public school system.17 Instead, many children with disabilities lived in state institutions, and another 3.5 million children attended school but were essentially “warehoused” in segregated programs with little to no meaningful education or instruction.18 The EHA changed that. It required school districts to evaluate children with disabilities and create an educational plan for each student. Seventeen years later, in 1990, when Congress replaced EHA with the IDEA, it placed an even stronger focus on the individual needs of a student. The IDEA was reauthorized in 1997 and again in 2004, and both reauthorizations resulted in additional substantive protections for students.19 Students with autism may find additional protections under Section 504 of the Rehabilitation Act (1973).20 Generally speaking, the Act requires federally funded organizations to make programs, services, and activities “accessible.”21 Section 504 prohibits school districts from discriminating against individuals with disabilities and ensures that a child with a disability has equal access to an education.22 Eligibility for a “Section 504 plan” depends on whether a student News (USCCAN) 1975 at page 1433. 15  Schiller, Ellen, Fran O’Reilly, Tom Fiore, Marking the Progress of IDEA Implementation, published by the Office of Special Education Programs. URL: http://nclid. unco.edu/Resources/IDEA_Progress.pdf. 16  IDEA Parent Guide, National Center for Learning Disabilities, April 2006. URL: http://www.ncld.org/ images/stories/downloads/parent_center/idea2004parentguide.pdf. 17  Id. 18  Id. 19  Pub.L. 108-446. 20  29 U.S.C. Section 701 et seq. 21  Id. 22  29 U.S.C. § 794; 34 C.F.R. Section 104.

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has a physical or mental impairment that “substantially” limits a “major life activity.” Section 504 plans typically include related supports and services that a student needs and the appropriate setting in which to receive those services.23 Section 504 also entitles students with disabilities to equal opportunities to participate in athletics and extracurricular activities and be free from bullying and harassment based on disability.24 The Americans with Disabilities Act (ADA) was passed in 1990 to prohibit discrimination based on disability.25 This federal civil rights statute offers protection for individuals with disabilities even after they graduate or “age out” and applies to “covered entities including certain employers, all state and local public entities, public transportation facilities, state and local public housing, recreation and most educational facilities.”26 The focus of the ADA is to protect equal access and provide “reasonable accommodations” that facilitate that access. The Family Educational Rights and Privacy Act (FERPA) protects the privacy interests of students with disabilities and also ensures that parents have the right to review all educational records related to their child.27 FERPA also lays out guidelines for how parents or students can request amendments to a student’s education records and amend or destroy records.28

IDEA Rights and Entitlements The primary purpose of the Individuals with Disabilities Education Act is to ensure that all children with disabilities receive a free appropriate public education (FAPE), including special education and related services that are “designed 34 C.F.R. § 104.33. 24  U.S. Department of Education Office for Civil Rights— Parent and Educator Resource Guide to Section 504  in Public Elementary and Secondary Schools, December 2016. https://www2.ed.gov/about/offices/list/ocr/ docs/504-resource-guide-201612.pdf. 25  Pub.L. 101-336, see also 42 U.S.C. 12101 et seq. 26  Id. 27  20 U.S.C. Section 1232. 28  Id. 23 

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to meet their unique needs and prepare them for further education, employment and independent living.”29 Part C of the IDEA mandates that children between birth and 3 years of age with disabilities must receive appropriate intervention services.30 Early intervention services are intended to assist young children with physical, cognitive, communication, social and/or emotional development. Early intervention services also can be provided to a child’s family. As discussed above, research supports the principle that early intervention is key. It is critical for families to act timely and continue to be proactive in securing early intervention services. The early intervention process can vary slightly from state to state, but generally speaking the process begins with an initial referral by parents or a professional (including a pediatrician). Parents must provide consent for evaluations and services, and the results of those evaluations and assessments will determine if the child is eligible for services. If a child is eligible for early intervention services, the Individualized Family Service Plan (IFSP) team will meet to discuss the child’s needs. An IFSP is the written plan for a child that outlines areas of need and the services that the child and the family will receive to address those needs. The focus of an IFSP is a family-based approach and services may be provided within the child’s home or surrounding community.

 ips for the Interdisciplinary Team to T Consider When Planning for an IFSP/ Early Intervention Meeting –– All evaluations and assessments should be timely shared with all team members including family members, reflect all of the child’s current needs, and make specific recommendations for the services that will address those

20 U.S.C. Section 1400(d). 20 U.S.C. Section 1432.

29  30 

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needs. The services should also ensure that the needs of the family are addressed. All team members should thoroughly review the child’s records. This may include additional documents from outside the initial evaluation process. The goal should be for every team member to have a well-rounded understanding of the child’s needs and how those needs may interplay with one another. The services that will be provided are not measured by a standard of what is best for the child, but rather what is appropriate. Accordingly, it is extremely important that specific recommendations are made during the evaluation process for what a child needs. If an increase in services is warranted, the team will need supporting documentation and recommendations to justify such an increase. For professionals, it is important to recognize that families are likely brand new to early intervention/special education services. Families may not be familiar with the many acronyms used in special education jargon. Information should be delivered in understandable terms, and families must be provided the opportunity to meaningfully engage in all discussions concerning IFSP development. It is possible that this is the beginning of a long journey for the family as it pertains to their child’s needs. Fostering an atmosphere of cooperation and collaboration is key to starting off on the right foot.

 ransition from Early Intervention T to Special Education The focus of special education shifts from the family-based focus at the early intervention level to a student-based focus aimed at addressing a student’s educational needs. When a child who has been receiving early intervention services turns 3, the child will then transition into their local school district for special education services. Even if a child who is aged 3 or older did not receive early intervention services, they can still be referred directly to the school district’s

special education office. The IDEA includes a “Child Find” mandate that requires all school districts to identify, locate, and evaluate all children with disabilities (including students who attend private schools).31 It is important to bear in mind that parents themselves have the right to refer their child directly to the school district for an evaluation to determine eligibility.

Eligibility and Initial Evaluations Evaluations are the first step to securing special education services and supports for students with disabilities. They will be used to help determine if the child has an educational disability and, if so, the educational needs of the child.32 Prior to making an eligibility determination, the school district will likely conduct a battery of evaluations often including a social history, an educational evaluation, and a psychological evaluation. Additional evaluations including speech and language, occupational therapy, physical therapy, and others may also be conducted. Parents must be provided with notice of the evaluations that the school district intends to conduct and the school district must obtain consent from the parent before conducting any evaluations.33 The evaluation process must be sure to assess the student in all areas of suspected disability.34 Because the results of initial evaluations will be one of the largest driving forces in developing the educational plan for the student, the need for intensive and comprehensive evaluations cannot be overstated. Many students with an autism diagnosis are found to be eligible for special education services. However, some cases have focused solely on this “eligibility” issue, where there are disputes regarding the student’s perceived need for special education supports and services, despite the student’s autism diagnosis. In conducting evaluations, the school district must use a variety of assessment tools and 34 C.F.R. 300.111, 20 U.S.C. 1412 (a)(3). 34 C.F.R. 300.301(c)(2); 20 U.S.C. 1401(3). 33  34 C.F.R. 300.304; 34 C.F.R. 300.300(a). 34  34 C.F.R. 300.304(c)(4). 31  32 

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strategies to gather developmental, academic, and other relevant information about the student that can assist with determining eligibility and/or what supports and services are needed in the student’s IEP.35 No one single assessment or measure should be used to determine whether a child has an educational disability or what the appropriate educational placement is for the child.36 The IEP team and other qualified professionals must also review alreadyexisting evaluations, information provided by the student’s parents, current assessments, classroom-based observations, and observations by the student’s teachers and related service providers.37 In addition to detecting a student’s strengths and areas of need, the most effective evaluations are those that make crystal clear recommendations for the educational programming, services, and supports a student needs in order to make progress. School districts and IEP teams often are more receptive to the findings and recommendations of qualified professionals than requests based solely on “what a parent wants.” These evaluations often form the basis of the eligibility meeting, where the team will determine if the child is a child with an educational disability, (i.e., a child with a disability who by reason thereof needs special education and related services).38 If parents disagree with the contents or recommendations in a school district’s evaluation, they have the right to request an independent educational evaluation, at school district expense. The parent must have initially permitted the school district to conduct its own evaluation before requesting an IEE.39 If parents have secured private evaluations, they should share those evaluations with the school district if they want the team to consider those recommendations in developing the student’s IEP.

34 C.F.R. 300.304(b)(1). 34 C.F.R. 300.304 (b)(2). 37  34 C.F.R. 300.305 (a)(1). 38  34 C.F.R. 300.306(a)(1); 20 U.S.C. Section 1400 (602). 39  34 C.F.R. Section 300.502(b). 35  36 

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Parents should also be aware that if there is ever a dispute with the school district that leads to litigation, parents will be required to show that they were fully cooperative in the development of an IEP for their child and that they provided consent to all reasonable requests from the district, including requests for evaluations and assessments. Some otherwise “winning” cases have been lost entirely because parents have refused to allow the school district to evaluate their child or because parents have otherwise refused to cooperate with the school district.40

The IEP Meeting After a child is found to be eligible for special education services, an IEP meeting must be convened within 30 days and thereafter at least annually.41 All IEP meeting participants, including the student’s parents, need to have notice of the meeting early enough to ensure they have an opportunity to participate, and IEP meetings must be scheduled at a time and a location convenient to the parents and the school district. School districts must ensure that the IEP team for each student includes the parents, at least one general education teacher if the student is or may be participating in the general education environment, a special education teacher, a school district representative, and an individual who can interpret the instructional implications of evaluation results (e.g., a psychologist).42 Parental participation is a critical component of IEP development, and IEP teams must timely notify parents about the purpose, time, and location

See, e.g., Bettinger v. New  York City Dep’t of Educ., 2007 U.S. Dist. LEXIS 86116 (“the parent’s lack of cooperation … and their refusal to visit a state-approved, nonpublic school frustrated the placement process”); See also M.C. ex. Rel. Mrs. C. v. Voluntown Bd. of Educ. 226 F.3d 60, 68 (2d Cir. 2000) (“courts have held uniformly that reimbursement is barred where parents have unilaterally arrange for private educational services without ever notifying the school board of their dissatisfaction with their child’s IEP”). 41  34 C.F.R. 300.320. 42  34 C.F.R. 300.321. 40 

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of the meeting as well as who will be attending.43 Because parents are key members of the IEP team, the failure to timely or properly provide “notice” to the parents of evaluations, meeting(s), and significant decisions and failure to appropriately communicate with the parents during the IEP process can violate the IDEA and result in a denial of FAPE. Notably, the Supreme Court has observed: “Congress placed every bit as much emphasis upon compliance with procedures giving parents and guardians a large measure of participation at every stage of the administrative process as it did upon the measurement of the resulting IEP against a substantive standard” (Rowley, 458 U.S. at 205–206). Where appropriate, other individuals who have knowledge or special expertise regarding the student may be invited to attend, and the student also has a right to attend.44 Parents should feel comfortable bringing someone who provides them with support—a relative, family friend, an evaluator, or one of the child’s providers. Take the case of Sean45, for example: Sean is 12 years old and diagnosed with autism and apraxia. Sean’s maternal grandparents are speech and hearing impaired, and as a result, Sean’s mother’s first language was sign language. Before Sean was diagnosed with autism and apraxia, his mother had begun teaching him sign language so that he could communicate with his grandparents as well as other people in the deaf community. Despite years of intensive speech and language therapy and significant PROMPT46 therapy, Sean’s ability to communicate verbally remains very limited due to his apraxia. Over the years, Sean has learned approximately 75 signs to communicate his wants and needs. Sean’s mother has always asked Sean’s grandmother to participate in his IEP meetings because, in addition to her firsthand knowledge of Sean and his needs, she brings a different but valuable perspective to the team and the discussions

34 C.F.R. 300.322. 34 C.F.R. 300.321 (a)(6); 34 C.F.R. 300.321 (a)(7). 45  In each italicized “case study,” students’ names and identifying information have been changed to protect the privacy of each student. 46  “PROMPT is an acronym for Prompts for Restructuring Oral Muscular Phonetic Targets. The technique is a tactile-kinesthetic approach that uses touch cues to a patient’s articulators (jaw, tongue, lips) to manually guide them through a targeted word, phrase or sentence.” See http:// www.promptinstitute.com. 43  44 

around what supports and services Sean continues to need as a part of his IEP.

Tips for the Interdisciplinary Team to Consider When Planning for an IEP Meeting –– Consider observing the student in their school, home, and/or community environments in advance of the meeting. –– If there is an IEP already in place for the student, review the current IEP and think ­critically about what is working well and what needs to be improved. –– Identify any significant changes that have taken place since the last IEP meeting to discuss with the team and to consider when developing the educational program. –– All team members should have copies of all documents, reports, and/or evaluations that will be discussed or relied upon before the meeting. Everyone should review all documents carefully, specifically if the evaluations/ assessments have specific recommendations for the student’s program or services. –– The team should consider inviting the specialists and professionals who conducted evaluations and assessments, as well as professionals currently providing direct services to the student, to participate in the meeting. –– It is critical that all team members, including parents, have an opportunity to speak and meaningfully contribute to the discussion during the IEP development process. –– All participants should remain open-minded; communicate their opinions, recommendations, and concerns; and use a collaborative approach to design an appropriate program that meets the unique needs of the student. –– Some parents find it useful to create and maintain a binder that contains all of their child’s evaluations, assessments, IEPs, and other pertinent information. –– Some professionals find it useful to create and maintain a binder that contains important information on policies and procedures, cur-

Legal Considerations in Interdisciplinary Treatments

riculum, etc. that can be accessed during the development of IEPs.

What Needs to Be Included in the IEP? Each student’s IEP must be developed, reviewed, and revised at least annually. IEPs must be individually tailored and include a comprehensive written statement of the child’s educational needs and the specially designed instruction, related service, supplementary aids and services, and program modifications or supports to meet the child’s needs.47 Specifically, an IEP must include: –– The student’s present levels of academic achievement and functional performance, including how the student’s disability affects the student’s progress –– Measurable annual goals (and in some instances short-term objectives)—both academic and functional—that are designed to meet the student’s individual needs –– Information on how the student’s progress against the annual goals will be measured –– A statement of the program, related services, and supplementary aids and services that will be provided to the student (and on behalf of the student) or modifications or supports for school personnel –– An explanation of the extent to which the student will not participate with nondisabled students in a general education classes or an explanation as to why it is not appropriate for the student to “mainstream” –– What accommodations are necessary to measure academic achievement and functional performance on state- and district-wide assessments or if a student must take an alternate assessment, a statement of why the child cannot participate in the standard assessment –– The projected date for beginning services and modifications and the anticipated frequency,

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location, and duration of those services and modifications –– Transition services for a student who is of “transition age” (which is 16  in some states and earlier in others) If a student presents with behaviors that interfere with that student’s availability for learning (or is likely to interfere with the learning of other students), a Functional Behavior Assessment (FBA) is needed to assess the frequency, duration, intensity, and likely function of the behaviors.48 It is important to bear in mind that behaviors may vary across different environments or with different people. Even if a student only exhibits one specific behavior in one specific environment or with only one specific person, it is imperative that everyone on the child’s interdisciplinary team be aware of the behavior, its function, what plan is in place to address the behavior, and how that plan is currently working. After the FBA is conducted, the IEP team must develop a Behavior Intervention Plan (BIP) to address those interfering behaviors.49 If a component of a student’s educational program utilizes ABA, or if the team is developing or reviewing a student’s BIP, a behavior specialist (e.g., a Board Certified Behavior Analyst “BCBA”) might also be able to contribute important feedback on the student’s programs, how the educational program is/should be supervised, how to properly track and graph data, and how to determine the appropriate next steps. Parents may request a re-evaluation meeting, and the IEP may be revised at a review meeting with team members. At least every 3  years, the student must be re-evaluated, which may be referred to as a “triennial.” The purpose is to determine if the child continues to be a “child with a disability,” as defined by the IDEA, and the student’s ongoing educational needs.

34 C.F.R. Section 300.530(f). 20 U.S.C. Section 1414(d)(3)(B)(i).

48 

20 U.S.C. Section 1414(d)(1).

47 

49 

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What Is a “FAPE?” States that receive federal funds must provide students with special needs a free appropriate public education (FAPE).50 A FAPE must include “special education and related services” that are tailored to meet the individual and unique needs of a student.51 A school district’s recommended program and placement must be “reasonably calculated” to enable the student to receive educational benefits.52 All treatments and services that are deemed necessary must be funded by the school district (or the State). School districts and States are not required to provide students with the “best” programs possible.53 The law only requires that states provide students with disabilities with services that are “reasonably calculated” to provide educational benefit.54 Both the 1997 and 2004 reauthorizations of the IDEA provided significant expansions and enhanced entitlements for children with disabilities. In its 2004 reauthorization, Congress stated: Since the enactment and implementation of the Education for All Handicapped Children Act of 1975, [IDEA] has been successful in ensuring children with disabilities and the families of such children access to a free appropriate public education and in improving educational results for children with disabilities. However, the implementation … has been impeded by low expectations, and an insufficient focus on applying replicable research on proven methods of teaching and learning for children with disabilities.55

Congress went on to highlight that “over 30 years of research and experience” demonstrated that the education of children with disabilities would be more effective by “having high expectations for such children and ensuring that they have access to the general education curriculum in [general education classrooms], to the maxi20 U.S.C.  Section 1412(a)(1)(A), Rowley 458 U.S. at 179. 51  20 U.S.C. Section 1401(9). 52  Rowley (1982) at 206-207. 53  Doe v. Tullahoma (1993). 54  Rowley (1982) at 207. 55  20 U.S.C. 1400(c)(4).

mum extent possible,” so that they can “be prepared to lead productive and independent adult lives to the maximum extent possible.”56 Given the fact that over the next decade more than 500,000 individuals with autism in the United States are set to “age out” of school-based services and enter adulthood, the need for fostering students to become as independent and productive as possible cannot be overstated.

The Rise of Autism in the Courtroom With each passing decade after 1965, the number of reported “autism” court decisions continued to grow rapidly. The following cases illustrate important concepts for members of a student’s interdisciplinary team to consider.

 rown v. Bd. of Education, 347 U.S. B 483 (1954) When considering the development of special education litigation in this country over time, particularly when focusing on building and nurturing inclusive educational environments, it is important to recognize the contributions that the US civil rights movement played in creating that foundation. In Brown v. Board of Education, the US Supreme Court held that racial segregation in public schools (i.e., “separate but equal”) deprived children of the equal protection of the Constitution. The High Court wrote: Today, education is perhaps the most important function of state and local governments … It is required in the performance of our most basic public responsibilities … It is the very foundation of good citizenship. Today, it is the principal instrument in awakening the child to cultural values, in preparing him for later professional training, and in helping him to adjust normally to his environment. In these days, it is doubtful that any child may reasonably be expected to succeed in life if he is denied the opportunity of an education. Such an opportunity, where the state has undertaken to provide it, is a right that must be made

50 

20 U.S.C. Section 1400(c)(3)-(5).

56 

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available to all on equal terms.57 (Emphasis added).

During the same year as P.A.R.C., another case, Mills v. Board of Education of District of Columbia, was brought on behalf of children who had been denied public education because of their disabilities.62 The school district argued that it was “impossible” to educate students with disabilities because the district lacked the necessary financial resources to do so.63 The Court held that no child could be denied a public education because of “mental, physical, or emotional ­ disability or impairment.”64 To address the district’s financial concerns, the Court stated:

A year later, the Supreme Court ordered the court system to enter orders and decrees consistent with the Brown decision “as are necessary and proper to admit the parties to these cases to public schools on a racially nondiscriminatory basis with all deliberate speed.”58 Unfortunately, the “deliberate speed” that was called upon was overshadowed by other events outside the courtroom, and while some schools desegregated in a peaceful manner, other attempts resulted in defiance, confrontations, and violence. President Eisenhower’s intervention, along with the military, were required in order to enforce the Court’s ruling.59 A ruling alone—even one from the Nation’s highest court—simply was not enough. In order for meaningful change to occur, society’s attitudes and expectations also needed to shift.

The P.A.R.C. and Mills Cases Only a few decades ago, children with disabilities did not have the right to a public education. In 1971, the Pennsylvania Association for Retarded Citizens (P.A.R.C.) sued the Commonwealth of Pennsylvania challenging a state law that allowed public schools to deny education to children who had not “attained a mental age of 5 years.”60 Unfortunately, Pennsylvania was not alone. The P.A.R.C. case ultimately settled, and the state agreed to provide a free public education for children with “mental retardation.”61 Even though the P.A.R.C. case quickly ended, it prompted others to challenge similarly oppressive laws in other states and school districts.

Id at 493. Brown v. Bd. of Educ., 349 U.S. 294, 301 (1955). 59  Smith (2012). 60  Pennsylvania Associate for Retarded Children (P.A.R.C.) v. Commonwealth of Pennsylvania, 334 F.  Supp 1257 (E. D. Pa. 1971) and 343 F. Supp. 279 (E. D. Pa. 1972). 61  Id at 284-285. 57 

If sufficient funds are not available to finance all of the services and programs that are needed and desirable in the system, then the available funds must be expended equally in such a manner that no child is entirely excluded from a publicly supported education consistent with his needs and ability to benefit therefrom.65

Following P.A.R.C. and Mills, many other lawsuits followed, and this growing trend contributed to the passage of the Education for all Handicapped Children (EHA) in 1975.

 oard of Education v. Rowley, 458 U.S. B 176 (1982) The Rowley case was the first Supreme Court decision that addressed the Education for All Handicapped Children (now IDEA). The case involved a young girl, Amy Rowley, who had minimal residual hearing. Amy’s IEP provided that she be educated in a general education classroom, with the use of an FM hearing device and instruction from a tutor for the deaf for 1 h each day and from a speech therapist for 3 h per week. Amy’s parents insisted that she be provided with a qualified sign language interpreter in all academic classes, but multiple school district staff reported that Amy did not need such an interpreter. The underlying courts agreed with the

58 

Mills v. Board of Education, 348 F.Supp. 866 (DC Dist. of Columbia 1972). 63  Id at 875. 64  Id at 878. 65  Id. at 876 (emphasis added). 62 

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school district, and Amy’s family appealed to the Supreme Court. The Rowley Court analyzed the “free appropriate public education” (FAPE) mandate and held that the EHA (now IDEA) requires that an IEP must be “reasonably calculated to enable [the student] to receive educational benefits.”66 Specifically the Supreme Court held:

The Burlington/Carter Doctrine

In a unanimous decision which is unusual in these partisan times, the Supreme Court further emphasized that the IDEA’s FAPE standard is not a one-size-fits-all substantive standard, but rather entails a highly individualized examination of the unique strengths and challenges of each student. The Court rejected a “merely more than de minimis” standard providing a student with “some benefit” and held that the “IDEA demands more.” “[IDEA] requires an educational program reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.” The High Court explained further:

In School Committee of Town of Burlington, Mass. V.  Department of Educ. of Mass.,68 the Supreme Court established—for the very first time—that parents have the right to be reimbursed for paying for private school education. The case involved a third grade student with learning disabilities. His family believed that the school district’s IEP was not appropriate to meet his needs. After ongoing debates with the district, the student’s parents removed him from public school and placed him in a private school that better addressed his specific needs. The parents then sought reimbursement from their school district. The Supreme Court explained that in an IDEA case, a court has “broad discretion” to fashion appropriate relief by considering equitable factors and that the IDEA provides “procedural safeguards to insure the full participation of the parents and proper resolution of substantive disagreements.”69 In Florence County School Dist. Four v. Carter,70 the Supreme Court held that if the evidence establishes that a school district has failed to provide a student with a “free appropriate public education” (FAPE), a parent can obtain reimbursement for a private school program and that reimbursement does not necessarily require the private school to meet the IDEA’s definition of a FAPE, nor does the private school program have to meet the state education standards. In addressing school district’s concerns that reimbursement cases would put an “unreasonable burden on financially strapped” school districts, the Court held:

[Students’] educational program[s] must be appropriately ambitious in light of [the] circumstances, just as advancement from grade to grade is appropriately ambitious for most children in the regular classroom. The goals may differ, but every child should have the chance to meet challenging objectives.

There is no doubt that Congress has imposed a significant financial burden on states and school districts that participate in IDEA.  Yet, public authorities who want to avoid reimbursing parents can do one of two things: Give the child a free appropriate education in a public setting, or place the child in an appropriate private setting of the

Implicit in the Congressional purpose of providing access to a “free appropriate public education” is the requirement that the education to which access is provided be sufficient to confer some educational benefit upon the handicapped child. It would do little good for Congress to spend millions of dollars in providing access to a public education only to have the handicapped child receive no benefit from the education.67

 he Supreme Court’s Landmark T Decision in Endrew F. 137 S. Ct. 988 (2017)

School Committee of Town of Burlington, Mass. V. Department of Educ. of Mass., 471 U.S. 359 (1985). 69  Burlington at 395, 368. 70  Florence County School Dist. Four v. Carter, 510 U.S. 7 (1993). 68 

Rowley at 211. Id at 200-201.

66  67 

Legal Considerations in Interdisciplinary Treatments State’s choice. This is IDEA’s mandate and school officials who conform to it need not worry about reimbursement claims.71

Accordingly, under the Burlington/Carter doctrine, a school district may be required to reimburse parents for tuition and other expenses related to a private school special education placement when (1) the IEP and placement offered by the school district was inadequate or inappropriate and deprived the student of a FAPE (“Prong I”), (2) the parents’ private unilateral placement is appropriate for the student’s needs (“Prong II”), and (3) the balance of the equities favors reimbursement (“Prong III”).

 Student’s “Stay-Put” or “Pendency” A Entitlements: Honig v. Doe, 484 U.S. 305 (1988) This case involved students with serious behaviors (related to their disability) who were indefinitely suspended from school. The Supreme Court addressed the IDEA’s “stay-put” provision, explaining that the language of the stay-put provision is “unequivocal:” [D]uring the pendency of any proceedings initiated under the [IDEA], unless the state or local educational agency and the parents or guardian … otherwise agree, ‘the child shall remain in the then current educational placement’ … We think it clear … that Congress very much meant to strip schools of the unilateral authority they had traditionally employed to exclude disabled students … from school.72

The Honig case is also well known for the Court’s establishment that the IEP is the “centerpiece of the [IDEA’s] education delivery system.”73 The Court explained that “Congress repeatedly emphasized throughout the Act the importance and indeed the necessity of parental participation in both the development of the IEP and any subsequent assessments of its effectiveness.”74 Carter at 15. Honig at 323 (emphasis added). 73  Id at 311. 74  Id at 311.

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 inkelman v. Parma City School Dist., W 550 U.S. 516 (2007) Parents claimed that their school district failed to offer their son a FAPE and ultimately placed their son in a private school at their own expense and sought reimbursement from the district. The Supreme Court held that parents are permitted to represent their child pro se (i.e., without an attorney) because “[p]arents enjoy rights under the IDEA; and they are, as a result, entitled to prosecute IDEA claims on their own behalf.” This case stands for the principle that IDEA confers specific rights and entitlements on parents/guardians, as well as their children. This case, and others, further highlight the important role that parents play as members of the interdisciplinary team, particularly given their unique perspective as to their child’s needs.

 orest Grove Sch. Dist. v. T.A., 557 U.S. F 230 (2009) This case involved a student with ADHD, severe depression, and substance abuse issues. Despite the fact that he had difficulties with his schoolwork and was failing his classes (in his local district’s school), the school district did not offer T.A. special education supports or services. His parents filed for due process seeking reimbursement for funding for a private school. The school district argued that reimbursement should be denied based on the belief that the IDEA barred reimbursement for students who did not previously receive special education services through the district. On appeal, the Supreme Court held that the IDEA permits reimbursement for the cost of private special education services when a school district fails to provide a FAPE, whether or not the child previously received special education or related services through the district.75

71  72 

See also Bd. of Educ. of City Sch. Dist. of N.Y. v. Tom F., 552 US 1 (2007) (holding that IDEA was not meant to deny reimbursement to students who have never been enrolled in public school).

75 

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 rlington Cent. Sch. Dist. Bd. of Educ. A v. Murphy, 548 U.S. 291 (2006) Sometimes prior to and/or during a due process proceeding, parents need to hire experts to support their case. The Arlington case involved a family who successfully sued their school district after it failed to provide their child with a FAPE. The district was ordered to pay for their child’s private school. The parents and their attorney then sued for the experts’ fees that they incurred during the course of the litigation. The case was appealed to the Supreme Court which ultimately held that, while IDEA allows a court to “award reasonable attorneys’ fees,” the IDEA does not authorize the payment of expert fees if the parent prevails.

 edar Rapids Cnty Sch. Dist. v. Garret C F. by Charlene F., 526 U.S. 66 (1999) When Garret F. was 4 years old, he was paralyzed from the neck down. He required the use of wheelchair, was dependent upon a ventilator, and needed assistance in attending to his physical needs throughout each school day. He attended general education classes in his public school program and was academically successful. Garret’s mother requested that the district fund the healthcare services that Garrett needed during the school day. The school district denied the request believing it was not legally required to provide 1:1 nursing. The Supreme Court held that if services are “related” to keeping a student with special needs in school and enabling the student to access educational opportunities available to others, school districts must provide such services. The Supreme Court rejected a cost-based standard as the sole test for determining whether services must be provided.

 obrest v. Catalina Foothills Sch. Dist., Z 509 U.S. 1 (1993) James Zobrest, a deaf student, had attended public school through the eighth grade with a sign lan-

guage interpreter. In high school, James’ parents placed him in a Roman Catholic school (at the family’s own expense) and sought the ongoing support of a sign language interpreter. The school district denied the request because James was attending a religious-based program. Among other findings, the Supreme Court ruled that such a service was “part of a general government program that distributes benefits neutrally to any child qualifying as ‘handicapped’ under the IDEA, without regard to the ‘sectarian-­nonsectarian, or publicnonpublic nature’ of the school the child attends”76 and ruled that the district was responsible for funding the support of the sign language interpreter.

J ohn Doe v. Board of Education of Tullahoma City Schools, 9 F.3d 455 (6th Cir. 1993) Parents placed their son in a private school claiming it was the “only appropriate placement for his needs” and sought funding for the school from the school district. After a hearing, an impartial hearing officer (IHO) held that the district’s IEP was appropriate. On appeal, the federal district court agreed. On further appeal, the Sixth Circuit Court of Appeals found that the district’s IEP offered a FAPE and held that the IDEA requires school districts to provide “the educational equivalent of a serviceable Chevrolet to every handicapped student” and that school districts are “not required to provide a Cadillac.” This case highlights a very important aspect of IDEA-­based litigation: school districts are only required to offer appropriate programs and services that provide students with a FAPE. School districts do not need to provide the very “best” educational program.

 eal v. Hamilton County Board D of Education, 392 F.3d 840 (6th Cir. 2004) Zachary Deal was a young child with autism who made very good progress in a 1:1 Applied Zobrest at 10.

76 

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Behavior Analysis (ABA) program. Zachary’s parents asked their school district to consider offering a 1:1 ABA program for Zachary. The school district refused to consider the ABA teaching methodology and offered Zachary a seat in its in-district autism program. The court held that the school district’s refusal to discuss Applied Behavior Analysis “deprived the [parents] of meaningful participation in the IEP process” by predetermining that it would not offer intensive 1:1 ABA regardless of Zachary’s needs and that this factor alone represented a FAPE denial.77 The Court noted that while school districts are not required to “maximize” a child’s potential, “there is a point at which the difference in outcomes between two methods can be so great that provision of the lesser program could amount to denial of a FAPE.”78

 .E. v. New York City Department R of Education, 694 F.3d 167 (2d Circ. 2012)

 raper v. Atlanta Independent School D System, 518 F.3d 1275 (11th Cir. 2008) After years of ongoing issues and conflict while attending public school for years, Jarron Draper was an 18-year-old student who was enrolled in 11th grade and reading at a 3rd grade level. His family filed for due process, alleging that the school district had failed to provide adequate educational programming. Relying on the IDEA provision that courts can award “appropriate relief,” the Court held that the school district had to pay Jarron’s tuition and expenses at a private special education school as prospective compensatory education for its failure to provide him with a FAPE over a period of many years. Citing an earlier case from Washington DC, the Court affirmed: “Although ordinary educational programs need only provide some benefit, compensatory awards must do more—they must compensate. Compensatory awards should place children in the position they would have been in but for the violation of the [IDEA].”79

Ehlena Fry has a severe type of cerebral palsy and has had a service dog prescribed by her pediatrician to live as independently as possible. The school district refused to permit Ehlena to attend school with her service dog. The parents filed a lawsuit based on ADA and Section 504 of the Rehabilitation Act, not under the IDEA. Ehlena’s parents did not believe that the school district failed to offer her a FAPE. Rather, Ehlena’s parents sought damages for the social and emotional hardship caused by the district’s refusal to permit her service dog to accompany her to school. The school district filed a motion to dismiss, claiming that Ehlena’s parents failed “to exhaust their administrative remedies under IDEA.” By way of an unusual unanimous decision, the Supreme Court held that “exhaustion is not necessary” when the “gravamen” of a plaintiff’s lawsuit is something other than the denial of the IDEA’s FAPE requirement. Because Hearing Officers (or Administrative Law Judges) are not permitted to award monetary damages in IDEA-based cases, filing a due process hearing would have been futile in this case.

Deal at 857. Id at 861-862. 79  Draper, citing Reid ex rel. Reid v. Dist. of Columbia, 401

F.3d 516 at 518, 525 (D.C. Cir. 2005).

The Second Circuit Court of Appeals held that when parents have to decide whether to accept or reject a school district’s IEP program and placement, they necessarily are relying upon the information they have received about that program and placement. Accordingly, if a due process hearing ensues, “retrospective evidence” and testimony about what a school district “would have provided,” but that is not delineated or offered in the IEP, cannot be used by the school district to rehabilitate an IEP or prove its adequacy.

 ry v. Napoleon Comm. Sch. Dist. 137 F S. Ct. 743 (2017)

77  78 

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“ Inclusion” and the Least Restrictive Environment Mandate The IDEA does not define “inclusion.” Rather, the IDEA requires school districts to educate students in their least restrictive environment (LRE), and thus, LRE is a vital consideration during the IEP development process.80 The fundamental concept behind the LRE mandate is to ensure that students with disabilities are being educated alongside their typically developing peers to the greatest extent that is appropriate. In some situations, an educational program that offers a student “mainstreaming” opportunities allows for neuro-typically developing students to serve as age-appropriate peer models across all areas of development. LRE considerations may also influence where a student is educated and/or how services are provided. Congress’ “least restrictive environment” mandate is one of only two “maximizing” provisions in the IDEA and provides: To the maximum extent appropriate, children with disabilities … [must be] educated with children who are not disabled, and … special classes, separate schooling, or other removal of children with disabilities from the regular education environment [shall] occur only when the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.81

Federal regulations also require that school districts ensure that a “continuum” of alternative placements be available to meet the needs of students with disabilities for special education and related services.82 The continuum of alternative placements includes instruction in general education classes, special classes, special schools, home instruction, and instruction in hospitals and “institutions.”83 The continuum also makes provision for supplementary services (e.g., resource room or itinerant instruction) to be provided in

20 U.S.C. § 1412(a)(5)(A). 20 U.S.C. 1412(a)(5)(A); 34 C.F.R. Section 300.114. 82  34 C.F.R. Section 300.115. 83  34 C.F.R. 300.115(b)(1). 80  81 

conjunction with placement in a general education class.84 When the IEP team convenes to discuss and consider appropriate placements and programs for students, the placement decision must be made at least annually, must be based off of the student’s IEP, and must be close as possible to the student’s home.85 Unless the student requires an alternate arrangement, the student must be educated in the school that he or she would attend if he or she did not have an IEP.86 When discussing the LRE for a student, the team must consider any potential harmful effects on the student or the quality of services that are needed.87 A school district is not permitted to remove a student with a disability from being educated in an age-­ appropriate general education classroom simply because that student requires modifications to be educated in the general education environment.88 Courts around the country have repeatedly analyzed and enforced the LRE mandate.89

One Example of LRE in the Courtroom In T.M. v. Cornwall Central School District, T.M. was diagnosed with autism and had attended a “mainstream” general education preschool with special education supports and services including 25 h per week of 1:1 Special Education Itinerant Teacher (SEIT) instruction, occupational therapy, physical therapy, speech and language therapy, and parent counseling and training. For the 2010–2011 school year, the school district offered a 12-month program, and for the extended school year (ESY) (i.e., summer) portion of the school year, the district offered T.M. placement in a 12:1+1 self-contained classroom with 3 h of

34 C.F.R. Section 300.115(b). 34 C.F.R. 300.116(b). 86  34 C.F.R. 300.116 (c). 87  34 C.F.R. 300.116 (d)-(e). 88  Id. 89  See, e.g., T.M. v. Cornwall Central School District, 752 F.3d 145 (2d Circ. 2014); P. v. Newington Bd. of Educ., 546 F.3d 111 (2d Cir. 2008); Oberti v. Clementon Bd. of Educ., 995 F.2d 1204 (3d Cir. 1993). 84  85 

Legal Considerations in Interdisciplinary Treatments

instruction per day, OT, PT, and speech and language therapy. The September through June portion of the district’s recommended program would have placed T.M. in a general education class with approximately 25 students, 1 teacher, 1 classroom teaching assistant, a 1:1 dedicated paraprofessional for T.M., and related services. T.M.’s parents disagreed with the proposed IEP, enrolled T.M. in a mainstream summer program for 6 weeks with SEIT instruction, and filed for due process. The case was litigated up to the Second Circuit Court of Appeals which held: We hold that the IDEA’s LRE requirement applies to ESY placements just as it does to school-year placements … [O]nce [the school district] determined that T.M. needed a twelve-month educational program … it was required to consider a continuum of alternative ESY placements and to offer T.M. the least restrictive placement from that continuum appropriate for his needs.90

Accordingly, the district’s self-contained ESY program was deemed too restrictive for T.M. and, thus, a violation of the IDEA’s LRE mandate.

Inclusion/LRE Tips for the Interdisciplinary Team to Consider –– Remember that IEP development requires individualized inquiries as to a student’s unique needs. –– Prior to the IEP meeting, make sure to read all newly developed reports, evaluations, and assessments and review what is being recommended for the student. Does the student currently have mainstreaming/inclusion components as a part of his/her educational program? How is the student performing in that environment and with what supports and services? –– If a student is in a self-contained environment, are there other less restrictive programs and

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placements on the continuum that might now be appropriate for the student? –– Will a general education teacher be participating in an IEP meeting to discuss general education options with the entire team? –– Sometimes we need to think “outside the box.” Be creative and willing to negotiate where appropriate.

Transition Planning As discussed above, the period following the passage of the EHA (now IDEA) was focused on providing access to what some courts referred to as a basic “floor of educational opportunity.”91 At that time, successful cases were rightly applauded as landmark victories in the overall civil rights movement, but providing access to the schoolhouse door was only the first step. It is estimated that more than 80% of individuals with autism are unemployed or underemployed.92 It is further estimated that, over the next decade, approximately 500,000 young adults with autism will “age out” of public school programs and services. Now, more than ever before, appropriate transition planning is critical to ensuring that students who are graduating or aging out of educational programs are graduating or aging out into something meaningful. Stemming from even before the Carter decision, through present day, one of the real concerns that school districts face, as noted earlier, is the cost of providing services and supports. On the one hand, there are a number of school districts that have figured out how to successfully provide their staff with the training, supervision, and supports (and funding!) needed to develop quality autism programs. On the other hand, with the incidence of autism on the rise, so too does the demand for effective programming and services. See, e.g., Rowley at 201 (1982). United Nations, Statement from the United Nations Secretary-General, Ban Ki-moon, on World Autism Awareness Day, Apr. 2, 2015 (available at http://www. un.org/en/events/autismday/2015/sgmessage.shtml).

91  92 

T.M. v. Cornwall, 752 F.3d 145 at 150 (2d Circ. 2014).

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 he IDEA Reauthorizations Are T Outcome Oriented As discussed above, 30 years after the IDEA was in full swing, Congress acknowledged that mere access to a basic floor of educational opportunity, without more, is not enough. The 1997 and 2004 reauthorizations of the IDEA shifted focus to higher expectations and a far more robust, outcome oriented approach that was calculated to promote greater levels of independence and self-­ sufficiency for students with disabilities. The House Committee Report supporting the 1997 amendments to the IDEA recognized the need for the nation to make the leap from access to outcome: The challenge today is not so much how to provide access to special education services but how to appropriately provide educational services to children with disabilities in order to improve educational results for such children.93

The House Committee Report further explained Congress’ intent and expectation that the 1997 amendments would “focus attention on how the child’s educational program can be planned to help the child make a successful transition to his or her goals for life after secondary school.”94 The 1997 amendments to the IDEA were thus designed and intended to promote better “educational results” as “an essential element of our national policy of ensuring equality of opportunity, full participation, independent living and economic self-sufficiency . . . .”95 The 2004 amendments to IDEA went even further in order to address Congress’ finding that, after 30 years, “the implementation [of the IDEA] has been impeded by low expectations.”96 Congress acknowledged that in order to promote more independent outcomes, higher expectations were required and a far more “robust” approach is needed so that children with disabilities can meet their developmental goals and “be prepared

H.R. Rep. 105-95 at 89 (1997). Id. at 102. 95  20 U.S.C. §1400 §601. 96  20 U.S.C. § 1400(c)(4).

to lead productive and independent adult lives, to the maximum extent possible”97

Developing Appropriate Transition Plans School districts are required to provide students with disabilities with vocational assessments, planning, and services to prepare students with disabilities for their lives after high school.98 Beginning not later than the first IEP to be in effect when a student turns 16 (and updated annually thereafter), the IEP must include appropriate and measurable postsecondary goals, the transition services needed to assist the student in achieving those goals, and, no later than 1  year before a student reaches the age of majority, a statement that the student was informed of their rights under the IDEA. Some states have regulations that require implementation of transition plans even earlier. The IDEA mandates that school districts prepare special needs students to become, to the extent of each student’s individual capabilities, independent and contributing members of society. Thus, Congress intended and planned for students with disabilities to have the tools, support, and training to be able to “graduate” to something meaningful after exiting the educational system. For students with disabilities and their parents, “transition services” are required to be an integrated and “coordinated” bundle of procedural and substantive rights that include (a) meaningful and comprehensive “age-­appropriate” evaluations of the student’s transition needs, capabilities, and interests; (b) appropriate postsecondary transition goals for the student; (c) determining and ascertaining a student’s strengths as well as the student’s transition interests and then creating the student’s transition goals; and (d) the provision of the programs and services that the student needs to develop achievable transition skills (whether

93  94 

Id. 20 U.S.C. §§ 1401(34), 1414(d)(1)(A)(i)(VIII).

97  98 

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academic skills, vocational skills, employment skills, and/or life skills).99 ––

Vocational Assessments Just as the assessment process is the central starting point to discussing and developing the provision of specialized instruction and other services, assessment is a critical component of the transition process. Because transition plans and transition goals must be based on age-appropriate transition assessments related to training, education, employment, and independent living skills where appropriate, assessment should include, where appropriate, direct assessment of the student, the student’s parent(s), and the student’s teacher.

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Tips for the Interdisciplinary Team to Consider When Considering Transition Services –– The degree of independence and self-sufficiency differs widely from student to student, depending up each student’s individual needs. In Rowley, the Supreme Court emphasized the “infinite variations” in the capabilities of individual students with disabilities and noted that “the benefits obtainable by children at one of the spectrum will differ dramatically from those obtainable by children at the other end.”100 As a result, a FAPE needs to turn on student-specific unique needs and capabilities.101 –– Make sure that vocational assessments have been timely conducted and shared with the IEP team before the IEP meeting. All team members must be able to identify a student’s strengths so that the team can effectively plan 20 U.S.C. §§ 1401(34), 1414(d)(1)(A)(i)(VIII), 1415(b) (3), 1415(c)(1); 34 C.F.R. §§ 300.320(b), 300.321(b). 100  458 U.S. at 202. 101  See 20 U.S.C. § 1414(a)–(d). 99 

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for how the student will build on these strengths during and after high school. Many areas that may be discussed during transition planning (e.g., postsecondary education, employment, housing/living options, travel training, daily living skills, money management, etc.) often require input from multiple disciplines. It is critical that all interdisciplinary team members share their observations and perspectives. When developing a transition plan, make sure it is clear who is responsible for what—if it is not easy for you to understand who is responsible for providing and/or implementing various transition services, it most likely will not be clear to the very people who are responsible for implementing the plan. If the students will attend the transition IEP meeting, encourage him/her to express his or her areas of interest, preferences and concerns. It may be helpful to have pre-IEP meeting discussions with the student about self-advocacy. Does the interdisciplinary team believe that the student will remain in school through the age of 21? If so, what experiences will be available to the student? What skills need to be developed or improved in order to help the student make progress toward his/her postsecondary goals? What transition services, supports, and accommodations does the student need for success in high school?

Additional Considerations for Certain Interdisciplinary Team Members Effective interdisciplinary teams are able to share their expertise, knowledge, and experience with other members of the team to facilitate an environment in which students are able to achieve their goals and objectives. This section addresses some legal considerations with respect to various interdisciplinary team members.

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Speech and Language Therapist Language and communication impact every aspect of a student’s life—both in school and out of school. Speech and language goals are often addressed by all members of a student’s team— not just the student’s speech and language therapist. Consistency across all individuals working with a student is key. This is particularly true if a student utilizes Augmentative and Alternative Communication (AAC) or other assistive technology devices or services. The law requires that school districts must ensure that assistive technology devices and/or services are made available to a child with a disability if required.102 On a case-by-case basis, the use of school-purchased assistive technology devices in a child’s home or in other settings is required if the IEP team determines that the child needs access to those devices in order to receive a FAPE.103 Because a student who uses AAC likely does so across environments and with different people, it is critical for the entire interdisciplinary team to be involved in discussions about a student’s speech, language, and communication needs.

Occupational Therapist Occupational therapists may play a critical role in the interdisciplinary team. Because many areas that are addressed by occupational therapists in relation to a student’s educational needs necessarily occur at all times throughout the day, and not just during a student’s OT sessions, it is critical that all team members be aware of a student’s needs and how to adequately address those needs. One example of this may include a student’s sensory diet—an individualized activity plan that provides students with sensory input throughout the day. Because the student’s OT will not be with the student all day every day, it is imperative that the student’s other team members be

34 C.F.R. 300.105. 34 C.F.R. 300.105(b).

102  103 

f­amiliarized with the student’s sensory diet and how it is implemented.

Medical Doctor Courts have recognized the importance that medical doctors can play during the IEP development process. For example, in Phyllene W. v. Huntsville City (AL) Bd. of Ed. (11th Cir. 2015), the Court explained: [The school district] violated … the IDEA by failing to evaluate M.W. when faced with evidence that she suffered from a suspected hearing impairment. As a result of its failure to obtain necessary medical information regarding M.W.’s hearing, the Board further failed to provide her with a FAPE.  The lack of medical information rendered the accomplishment of the IDEA’s goals impossible because no meaningful IEP was developed, and the IEPs put into place lacked necessary elements with respect to the services that M.W. should have been provided. In short, the Board’s failure to evaluate M.W. with respect to her hearing loss deprived M.W. of the opportunity to benefit educationally from an appropriate IEP.

Case Study: “Tanya’s Case” Tanya is diagnosed with an autism spectrum disorder as well as OCD and anxiety disorder. She presents with a variety of significant deficits and interfering behaviors (including intense self-­ injurious behaviors). She also has a diagnosis of diabetes, which requires very close and constant monitoring of her blood sugar levels, as well as frequent insulin injections. Tanya also has very severe allergies to a multitude of things including peanuts. She must be constantly monitored. She also suffers from acid reflux (resulting in projectile vomiting at times) and asthma. Tanya has been under multiple doctors’ care for years, but her pediatrician is in regular contact with all of the medical specialists on her team. In addition to sharing all required doctor’s reports with the entire IEP team before the IEP meeting, Tanya’s parents have requested to have Tanya’s pediatrician participate in the meeting. At the IEP meeting, Tanya’s teachers and therapists had the opportunity to ask questions about Tanya’s medical needs and the medical reports

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that had been shared. Tanya’s pediatrician was able to inform the team about Tanya’s needs, and together all participants of the interdisciplinary team were able to develop an IEP program and recommendations that met all of Tanya’s medical needs.

Encopresis and Enuresis Encopresis occurs when a child does not reliably use the toilet for a bowel movement. Some children may soil themselves by ignoring the signals from their body. Other children may have other reasons including rigidity about where and when to use the toilet, sensory issues with touching a toilet, constipation from diet, or other things. Some behavioral approaches may be employed including shaping existing behavior, creating programs, desensitizing a child to the toileting experience, and reinforcing desired behaviors. Case Study: “Ian’s” Case Ian is a 6-year-old child diagnosed with autism and ADHD. Multiple medical doctors including Ian’s pediatrician, a pediatric gastroenterologist, and a urologist all opined that, due to Ian’s autism and sensory processing difficulties, Ian presents with symptoms of enuresis and encopresis. The doctors reported that Ian needs to wear a diaper throughout the day to prevent accidents and he also requires a comprehensive toileting program that would address his need for physical assistance with his toileting routine. Additional recommendations were provided: 1. Toileting data collection to monitor if Ian independently requests to use the bathroom, how he responds to prompts for him to use the bathroom, and how many accidents he has each day; 2. Implementation of a Toileting Program including what steps school personnel should use; 3. The use of a visual schedule to show him how often he needs to use the bathroom; 4. The use of a separate visual schedule to break down each step that needs to be taken when using the bathroom; and

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5. A schedule to show how Ian will be positively reinforced for completing various steps of the toileting program. Topics such as bathroom use and personal hygiene are extremely important to be viewed with an interdisciplinary approach. Because Ian’s reports were shared with his entire team prior to the IEP meeting, all participants were aware of his diagnoses, recorded data available, and the recommended next steps. Thus, Ian’s entire team was able to work together to develop an appropriate plan that meets his needs.

Feeding Therapist A feeding therapist, where appropriate, can provide a student’s interdisciplinary team with critical information. Case Study: “Antonio’s” Case Antonio is diagnosed with autism and also presents with decreased oral motor weakness and control. He has difficulty with tongue lateralization, lip rounding and retraction, and jaw stabilization. Antonio also demonstrates oral sensory seeking behaviors at times such as mouthing, biting, and chewing objects. These difficulties affect Antonio’s speech and language needs as well as feeding. Antonio has difficulty feeding with varied textures and eats mostly soft, small foods. Sometimes he has been known to stuff his mouth full of food, and he needs modeling and verbal cueing to moderate his food intake. Antonio does not independently self-feed with utensils and still requires verbal and sometimes physical prompts. Antonio has received two feeding therapy sessions per week as a part of his IEP. Prior to the IEP meeting, his feeding therapist provided Antonio’s team with a Feeding and Oral Motor Progress Report and Recommendations. Among other things, Antonio’s feeding therapist noted the importance of PROMPT therapy to address his oral motor needs. Recommendations for Antonio included specific oral motor therapy goals, specific feeding goals with short-term objectives fading out prompts and supports, and

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a specific recommendation that Antonio continue to receive two weekly feeding therapy sessions to address his needs. Antonio’s parents shared the report with Antonio’s IEP team prior to the IEP meeting and also asked Antonio’s feeding therapist to participate in the meeting so that all of Antonio’s team would be “on the same page” with his feeding needs.

Lawyers/Advocates If parents intend on bringing an attorney or advocate to their child’s IEP meeting, they need to let the school district know in advance of the meeting. Otherwise, parents run the risk of the school district postponing the IEP meeting, so that the district can have its attorney attend as well.

 he Benefits of Attorney Participation T Just as other members of the interdisciplinary team are experts in their respective areas, seasoned IDEA/civil rights/disability attorneys are experts in the rights and entitlements of individuals with disabilities. They are also likely to be skilled in advocating to ensure that a student’s rights and entitlements are protected or otherwise preserved. Attorney participation in the IEP development process can put parents and families at ease. The pressures associated with having to know the “ins and outs” of applicable laws are alleviated and families can then turn their focus to their child’s specific needs. Because parents and families may be more at ease, it is also likely that they are more available for active listening and participation. In some instances, it may be very helpful for attorneys to participate in the IEP meeting. With areas in dispute, attorneys from both sides may be able to bring the parties closer together to try to work out areas of disagreement. Attorneys also may also be able to “side-bar” individually with their clients and explain how areas of continued disagreement may play out in the courtroom.

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 he Potential Downside to Attorney T Participation The presence of an attorney at an IEP meeting could, however, have a “chilling” effect on the discussions among the team. Some professionals, providers, and therapists may feel “on guard” or grow wary of speaking openly if they perceive that a due process case may be filed or that an attorney may challenge their input at the meeting. Moreover, because an attorney (or advocate) participating in an IEP meeting is assumed to have expertise in their field, the student’s parents can no longer credibly assert that they were unaware of their child’s rights because their attorney is participating. In fact, some attorneys make the affirmative decision to avoid direct participation in an IEP meeting because such participation technically could render that attorney a “witness” to what transpired at the meeting. Generally speaking, parents require assistance from an attorney (or a seasoned advocate) in order to effectively pursue a due process hearing. But what happens if (hopefully) litigation is not imminent? When should a family make a decision to bring an attorney onboard the interdisciplinary team? There are a few questions that should be considered when determining what role, if any, an attorney or advocate should play as a member of their child’s interdisciplinary team: –– Is there an area of disagreement among team members? Is this a “new” topic or concern, or has the team been in disagreement on this point for a while? –– What is the likelihood that an attorney’s participation in a meeting has the ability to persuade the parties to move together, close the disagreement gaps, and resolve outstanding issues? –– What is the purpose for an attorney participating  – can the conflicts be resolved, or is the possibility of litigation imminent if the recommendations of the team do not change? –– Has an attorney previously participated in interdisciplinary meetings before? How did that turn out?

Legal Considerations in Interdisciplinary Treatments

Legal Considerations If parents are not satisfied with their child’s school district’s recommendations, there are a number of ways in which they can challenge the recommendations.

Independent Educational Evaluations An independent educational evaluation (IEE) is defined as “an evaluation conducted by a qualified examiner who is not employed by the public agency responsible for the education of the child in question.”104 If parents dispute a school district’s evaluation, they have the express right to request an IEE at the school district’s expense. This can mean that the school district pays directly for the evaluation, or parents may pay for the evaluation and be reimbursed by the district. When a parent requests an IEE, one of two things must happen: either the school district must grant the request and pay for the IEE or the school district must file a due process complaint against the parents to establish that its own evaluation was proper. The latter is far less common, and many districts will fund reasonable requests for IEEs, where appropriate. IEEs can be valuable for both parents and school district staff to use when developing a student’s IEP, although school districts are not required to adhere to all of the specific recommendations contained in an IEE.

Mediation or Due Process There are a number of reasons why parents may disagree with the school district’s proposed IEP program and placement for their child. Perhaps the content of the IEP can be the basis for a FAPE failure claim. Some claims may target the nature and extent of the services an IEP provides. Other times, parents may allege that a program and placement are either too restrictive under LRE or not restrictive or supportive enough to meet their 34 C.F.R. 300.502(a)(3)(i), 20 U.S.C. 1415 (b)(1).

104 

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individual child’s intensive needs. Some claims also arise from a school district’s failure to timely implement the IEP services. A parent may file a due process complaint about any matter regarding the “identification, evaluation or educational placement of a child” or concerning the provision of FAPE.105 The IDEA provides for due process procedures to promptly resolve disputes that arise between parents and school districts.106 Each state must make voluntary mediation, conducted by a trained and impartial mediator, available to the parties.107 Mediation, if successful, may result in a written and enforceable agreement.108 If disputes between parents and school districts are not resolved through mediation, and if a parent believes that their child’s IEP does not comply with the IDEA, the parent may file a due process complaint.109 When that occurs, the IDEA mandates that states provide “impartial due process hearings” before impartial hearing officers.110 Before the hearing may commence, the school district must convene a resolution meeting with the parents and other relevant members of the IEP team to see if the issues can be resolved.111 If the school district has not resolved the complaint to the satisfaction of the parents within 30 days of filing a complaint, the due process hearing may occur.112 The IDEA offers a variety of procedural safeguards to families including the right to have attorney representation; the right to present evidence; the right to confront, cross-examine, and compel the attendance of witnesses; the right to a written transcript of all hearing dates; and the right to a written decision.113

20 U.S.C. Section 1415(b)(6). 20 U.S.C. Section 1415 (b)(6)-(b)(7), 1415(e). 107  20 U.S.C. Section 1415 (e). 108  Id. 109  20 U.S.C. Section 1415(f), 1415(b)(6). 110  20 U.S.C. 1415(o). 111  20 U.S.C. 1415 (f)(1)(B). 112  20 U.S.C. 1415 (f)(1)(B)(ii). 113  20 U.S.C. 1415 (h). 105  106 

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Pendency In the event that a dispute arises between parents and the school district and a parent files for due process, IDEA provides that a student may remain in his or her “last agreed-upon program” during the pendency of any proceedings, and it is the school district’s responsibility to maintain a student’s pendency placement.114 Pendency is an automatic and unconditional right until a final decision has been rendered or until the parties have otherwise agreed to a resolution. Pendency acts like an automatic injunction. In Drinker v. Colonial School District (1996), the Court aptly acknowledged that the pendency/stay-put provision of the IDEA “represents Congress’ policy choice that all handicapped children, regardless of whether their case is meritorious or not, are to remain in their current educational placement until the dispute with regard to their placement is ultimately resolved.” The purpose of the pendency provision is to provide stability and consistency in the educational programming of a student with a disability.115

Statute of Limitations Parents should be aware that the 2004 amendments to the IDEA provide a 2-year statute of limitations unless a state specifically provides for a different time period. 20 U.S.C. § 1415(b)(6) (B). The time period runs from the date that the parents knew or should have known about the alleged action (or inaction) that forms the basis of the complaint. Id.

Tuition Reimbursement Relief When a school district fails to offer a disabled child a FAPE in a public school setting, one recognized remedy available to families is Burlington/Carter tuition reimbursement 34 C.F.R. 300.518, Honig v. Doe, 1988; Zvi v. Ambach, 1982. 115  Honig v. Doe, 1988. 114 

relief.116 Notably, the Burlington Court acknowledged that even though IDEA has a preference for public school-based education, the Act also provides for private school placement at public expense where an appropriate public school setting was not possible.117 As noted earlier, the reimbursement remedy involves a three-pronged test, under which the hearing officer must consider (1) whether the student’s IEP was developed according to the procedural and substantive requirements of the IDEA, i.e., whether the school district provided the student with a FAPE (Prong I), (2) whether the student’s proposed program and placement is appropriate (Prong II), and (3) equitable considerations (Prong III).

Burden of Proof The IDEA is silent as to which party bears the burden of proof to establish whether or not the school district offered the student a FAPE in their least restrictive environment. In Schaffer v. Weast, 546 U.S. 49 (2005), the Supreme Court held that, in the absence of an express legislative provision, the “party seeking relief” in an administrative hearing under IDEA has the burden of persuasion. Some states have enacted legislation to place the burden of proof on the school district to establish that it offered the student a FAPE (Prong I). Regardless of which party bears the Prong I burden (i.e., FAPE), the parents must meet the Prong II burden of proving the appropriateness of the program they are seeking. By and large, this burden is somewhat less stringent than the Prong I standard and parents are not barred from reimbursement simply because their private school program does not perfectly meet the IDEA’s definition of a FAPE.118

See School Comm. of Burlington v. Dep’t of Educ., 471 U.S. 359, 369-370 (1985); Florence County School Dist. Four v. Carter, 510 U.S. 7 (1993). 117  Burlington at 373-374. 118  R.E. v. New York City Department of Education, 2012; Florence County School District IV v. Carter, 1993; Frank G. v. Board of Education (2006). 116 

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The Prong III equities inquiry analyzes whether either party engaged in unreasonable conduct that could warrant a reduction or complete denial of a reimbursement award. Some courts have found that bad faith, lack of cooperation in the evaluation or IEP development process, or predetermination can result in an adverse Prong III finding.119

 ttorneys’ Fees and the Buckhannon A Case Parents who hire an attorney to represent them in a due process proceeding can spend thousands of dollars trying to vindicate their child’s right to a FAPE. Under the IDEA, a court may award “reasonable attorneys’ fees” to a parent who is a “prevailing party” in a due process hearing or litigation.120 A party gains “prevailing party” status when they prevail on a “significant issue” that achieves some benefit that they sought when they filed the lawsuit.121 Before the Buckhannon case, parents could only recover attorneys’ fees if their case was the “catalyst” that caused the school district to change its conduct. In Buckhannon, however, the Supreme Court held that parents can recover attorneys’ fees only if they achieve a judicially approved change in relationship between the parties (i.e., they win some or all of the relief that they sought).122 In other words, if parties settled their case without litigation, or the school district 20 U.S.C. 1412 (a)(10)(C)(iii); See, e.g., Forest Grove Sch. Dist. v. T.A., 557 U.S. 230, 129, S.Ct. 2484, 2496, 174 L.Ed.2d 168 (2009) (finding that the Court “retain[s] discretion to reduce the amount of a reimbursement award if the equities so warrant”); Thies v. New York City Board of Education, 2008 WL 344728, at *4 (S.D.N.Y. Feb. 4, 2008) (the court denied reimbursement because the parents “demonstrated they did not seriously intend to enroll [their child] in public school” and instead selected a private school “without first fulfilling their obligation to work together with school officials to find a placement that was appropriate”). 120  20 U.S.C. Section 1415 (i)(3)(B)(i)(II). 121  Hensley v. Eckerhart, 461 U.S. 424 (1983). 122  Buckhannon v. West Virginia Dept. of Health and Human Resources, 532 U.S. 598, 121 S. Ct. 1835 (2001). 119 

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otherwise changed its conduct without a judge’s ruling, the parents in an IDEA lawsuit are not, under the law, entitled to attorneys’ fees.

 ullying Is a Recognized FAPE B Deprivation Children with disabilities are tormented by bullies far more often than their typically developing peers, and it goes without saying that bullying can have a material adverse impact on a disabled child’s education. The United States Department of Education (USDOE) has long recognized this serious national problem and has concluded that the IDEA protections are applicable to address the bullying of students with disabilities.123 In other words, bullying must be considered and adequately addressed during the IEP development for a student.

 ne Example of an IDEA-Based O Bullying Case in the Courtroom In what has been considered a landmark decision on bullying, the Second Circuit Court of Appeals ruled in T.K. v. New York City Dep’t of Educ. that the “severe bullying” of a student with a disability was a deprivation of FAPE.  The Court observed “L.K.’s teachers appear to have done little to stop the bullying [and] neither intervened nor punished the students who bullied her.” The Court also observed that the ongoing bullying made L.K. “unavailable to learn” and, thus, See US Department of Education (“USDOE”) Office of Civil Rights (“OCR”) 2014 Dear Colleague Letter on Bullying of Students with Disabilities, http://www2.ed.gov/ about/offices/list/ocr/letters/colleague-bullying-201410.pdf (“2014 Letter”); USDOE Office of Special Education and Rehabilitative Services (“OSERS”) 2013 Dear Colleague Letter on Bullying of Students with Disabilities, http://www. ed.gov/policy/speced/guid/idea/memosdcltrs/bullyingdcl-8-20-13.doc (“2013 Letter”); USDOE OCR 2010 Dear Colleague Letter on Harassment and Bullying, http://www. ed.gov/ocr/letters/colleague-201010.pdf (“2010 Letter”); USDOE OCR-OSERS 2000 Dear Colleague Letter: Prohibited Disability Harassment, http://www.ed.gov/ocr/ docs/disabharassltr.html (“2000 Letter”). 123 

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adversely affected her academic performance. Equally disturbing to the Court was the fact that L.K.’s parents made multiple attempts to discuss the bullying with L.K.’s school administrators, but they were “consistently rebuffed.”124 It is important for all members of an interdisciplinary team to be on the “lookout” for any instances of bullying and to ensure that any suspected bullying is discussed with the entire interdisciplinary team, considered, and adequately addressed both at the IEP meeting and otherwise.

Compensatory Education Compensatory education is a possible remedy owed to students with a disability who have been denied a FAPE.  Compensatory education services can be awarded as “appropriate” equitable relief.125 Some forms of compensatory education services may include remedial academic instruction, summer services, additional therapy hours, or other services that seek to make the student “whole” for the past FAPE violations. The theory behind a compensatory education award is to put a student in the position he or she would have been in had the school district not violated the IDEA.126 “Courts have discretion on how to craft the relief and there is no obligation to provide a day-for-day compensation for time missed.”127 There are a number of cases throughout the country that have addressed the issue of compensatory education. In a 2012 California-based case, a school district was found to have denied a student a FAPE because it failed to assess the student for autism despite the fact that the student displayed many characteristics that are consistent T.K. v. New York City Dep’t of Educ., 810 F.3d 869 (2d. Cir. 2016). 125  20 U.S.C. Section 1415(i)(2)(C)(iii). 126  Draper, 518 F3d. at 1289 (citing Reid ex rel. Reid v. Dist of Columbia, 401 F.3d 516, 525 (D.C.  Cir. 2005)); see also G. ex rel. RG v. Fort Bragg Dependent Schs., 343 F.3d 295, 309 (4th Cir.2003). 127  See Park v. Anaheim, 464 F.3d 1025 (9th Cir. 2006) at *1033.

with autism, and the district failed to provide appropriate behavioral support for the student. In addition to awarding reimbursement for placement in an appropriate private program with a 1:1 trained aide, the court also awarded additional behavioral and speech services as well as an “independent triennial assessment.” The court expressly found: “[I]t is perfectly reasonable, and highly probably, that Student requires compensatory education to (attempt to) reverse the one-­ and-­a-half years during which he was denied a FAPE prior to private placement.”128 In some cases, compensatory education services have been awarded to provide support and instruction to a student’s teacher to enable the appropriate implementation of the IEP.129 In other cases, courts have awarded compensatory education awards in the form of consultant services. For example, in P. v. Newington Bd. of Educ., the Court ordered that an “inclusion consultant be retained for a year” and ordered the completion of a Functional Behavior Assessment (FBA).130

 ppealing an Adverse Administrative A Decision Some states have a second-level administrative adjudicative tier. In those states, any aggrieved party may appeal the underlying administrative decision to a state review officer (“SRO”). Currently, however, many states have a one-tier system. In a one-tier system, any party aggrieved by an administrative decision has the right to seek review of the decision by bringing a civil action in federal court.131

124 

See Orange Unified Sch. Dist. v. C.K., 2012 U.S. Dist. LEXIS 92423 at *33. 129  See, e.g., Park v. Anaheim Union High Sch. Distr., 464 F.3d 1025 (9th Cir. 2005). 130  P. v. Newington Bd. of Educ., 546 F.3d 111 (2d Cir. 2008). 131  20 U.S.C. 1415(i)(2)(A). 128 

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Conclusion Students with autism have a wide array of protections under the IDEA and other laws. Litigation should only be considered as a matter of last resort, and the entire interdisciplinary team should commit to regular and open communications with all team members to ensure that each student has an appropriate educational program and placement in his/her least restrictive environment.

References Christensen, D.  L., Baio, J., Braun, K.  V., et  al. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and

87 developmental disabilities monitoring network, 11 Sites, United States, 2012. MMWR Surveillance Summaries, 65(SS-3), 1–23. https://doi.org/10.15585/ mmwr.ss6503a1 Jacobson, J.  W., Mulick, J.  A., & Green, G. (1998). Behavioral Interventions, 13, 201–226. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250. Kanner, L. (1946). Irrelevant and metaphorical language in early infantile autism. American Journal of Psychiatry, 103, 242–246. Lovaas, O.  I. (1987). Behavioral treatment and normal education and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3–9. McCeachin, J. J., Smith, T., & Lovaas, O. I. (1993). Long-­ term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97(4), 359–372. Smith, J. E. (2012). Eisenhower in war and peace (p. 723). New York, NY: Random House.

Interdisciplinary Diagnostic Evaluations Brett A. Enneking, Anna C. Merrill, Elesia N. Hines, Christine M. Raches, Kelly A. Rostin, and Rebecca H. McNally Keehn

Introduction Individuals with autism spectrum disorder (ASD) present with a myriad of core and associated behavioral features which benefit from the expertise of various disciplines, including medicine, psychology, speech-language pathology, occupational therapy, and physical therapy, among others. Current practice parameters highlight the critical importance of multiple disciplines in the evaluation and diagnosis of ASD (Johnson et  al., 2007; Volkmar, Siegel et  al., 2014). However, the literature regarding team-based evaluation is complicated by the use of a wide range of terms, including multidisciplinary, transdisciplinary, and interdisciplinary. These terms are often used interchangeably and are rarely clearly defined (Choi & Pak, 2006). Multidisciplinary teams refer to the involvement of multiple providers across disciplines; however, the team stays well within their disciplinary boundaries and does not collaborate on diagnostic decision-making or follow-up recommendations. Interdisciplinary teams have increased B. A. Enneking (*) · A. C. Merrill · E. N. Hines · C. M. Raches · K. A. Rostin · R. H. McNally Keehn Riley Child Development Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA e-mail: [email protected]

collaboration and jointly determine diagnosis and any appropriate next steps for the family. Lastly, transdisciplinary teams require role sharing and role release, as each discipline supports the others in acquiring skills related to their own area of expertise (Choi & Pak, 2006; King et al., 2009). For the purposes of this chapter, the term “interdisciplinary” will be used to describe those teams who integrate evaluation findings to determine the most appropriate diagnosis and treatment recommendations. While interdisciplinary team assessment is considered the ideal model for the diagnosis of ASD, these evaluations can be cost prohibitive or difficult to obtain due to limited numbers of qualified experts and lengthy wait times. Medical diagnoses of ASD are often made by individual providers, including primary care physicians, pediatricians, and psychologists, as allowed by individual state laws. Additionally, many children receive comprehensive evaluations through school psychologists as a part of their special education assessment and planning. These school-based evaluations can provide access to special education services under the eligibility category of ASD; however, families often still require a medical diagnosis from a qualified provider to access outpatient services and community resources. Ideally, interdisciplinary evaluation incorporates information from a variety of disciplines through a decision-making process that is both

© Springer Nature Switzerland AG 2019 R. D. Rieske (ed.), Handbook of Interdisciplinary Treatments for Autism Spectrum Disorder, Autism and Child Psychopathology Series, https://doi.org/10.1007/978-3-030-13027-5_6

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interactive and collaborative (Guaralnick, 2000; Rokusek, 1995). Within an interdisciplinary evaluation, there are several key goals. The main goal is to establish a diagnosis and/or provide a conceptualization for the family of the individual’s current strengths and weaknesses. This is critical as diagnosis links families to resources, determines eligibility for services, and offers caregivers a more comprehensive understanding of the individual. Second, it is key to contextualize the individual’s developmental strengths and challenges within their family and community. Lastly, and potentially the most valuable outcome, an interdisciplinary team should strive to provide recommendations and suggestions for intervention (Guaralnick, 2000). Recent research has suggested that interdisciplinary evaluation of ASD may be associated with more accurate diagnosis as compared to assessment by individual healthcare providers alone (Stewart, Vigil, Ryst, & Yang, 2014). Before a diagnosis of ASD can be made, a multitude of other diagnoses and challenges, including but not limited to specific language disorder, sensory impairment (particularly hearing impairment), intellectual disability, and anxiety disorder, must be considered (Volkmar, Siegel et al., 2014). In order to adequately rule out alternate diagnoses, it is critical to have experts in those areas as part of the diagnostic team. For example, a psychologist may be an expert in the assessment of behavior; however, without an audiologic evaluation, hearing impairment cannot be ruled out as a possible explanation for the individual’s symptoms and behavior. Further, while these evaluations may be obtained independently, communication between providers regarding the results of their independent evaluations does not always occur in a timely manner. Evidence suggests that the time between initial evaluation and diagnosis/treatment can be extensive, particularly when multiple appointments with individual providers are required (Wiggins, Baio, & Rice, 2006). Moreover, failure to gain access to information from other providers may result in incomplete information and, subsequently, additional diagnostic confusion. In addition to benefits for families, interdisciplinary

evaluation also provides benefits for providers. Gerdts et al. (2018) found that providers working with an interdisciplinary team reported increased confidence in diagnosis, increased satisfaction, and reduced perception of workload when compared to single-provider diagnosis. Best practice guidelines put forward by the American Academy of Pediatrics (AAP) and the American Academy of Child and Adolescent Psychiatry (AACAP) indicate that the clinical standard for evaluation of ASD includes developmental screening, followed by a comprehensive evaluation of the individual’s skills conducted by multiple disciplines (Johnson et  al., 2007; Volkmar, Siegel et al., 2014). In this chapter, we discuss the process of an interdisciplinary evaluation of ASD, beginning with parental concern and ending with formulation of diagnosis and feedback to families. Additionally, we review common disciplines and associated measures typically involved in an interdisciplinary evaluation.

 rom Developmental Concern F to Referral The process of ASD evaluation typically begins when family members, primary care providers, or other individuals that interact with the child express developmental concerns. Sometimes caregivers report these concerns first, or they are identified through developmental screening at a well-child visit with the child’s pediatrician. As soon as concerns are noted, families and healthcare providers should begin the referral process to seek out an evaluation.

Caregiver Concerns There is often variability with regard to when initial caregiver concerns arise. Symptoms of ASD may appear as early as 6 months of age. However, parents may not recognize these symptoms as cause for concern until their child is between 14 and 19 months of age (Chawarska et al., 2007; Di Giacamo & Fombonne, 1998), and

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c­ ommunication of these concerns with the child’s physician may occur even later (Herlihy, Knoch, Vibert, & Fein, 2015). In the United States, the average age of ASD diagnosis remains between 4 and 5 years (Christensen et al., 2016; Fountain, King, & Bearman, 2011). The most common symptom reported by parents in children who were later diagnosed with ASD is language or communication delay (Chawarska et  al., 2007; Di Giacamo & Fombonne, 1998) with social difficulties as the second most commonly reported symptom (Chawarska et  al., 2007; Werner, Dawson, Munson, & Osterling, 2005). Between 20 and 40% of children diagnosed with ASD have a reported regression in some skills (Matson, Wilkins, & Gonzalez, 2008; Volkmar, Chawarska, & Klin, 2005), which also may lead parents to have developmental concerns. Because many typically developing toddlers engage in repetitive play and actions, parent report of those symptoms often does not emerge until these behaviors are no longer considered developmentally appropriate (Werner et al., 2005). Parents and providers also report an increase in “atypical” behaviors by the age of 3, making a diagnosis around this time more apparent (Volkmar et al., 2005). Concerns may also be raised by early intervention or rehabilitation therapy providers (e.g., speech-language pathologists, occupational therapists, physical therapists) who provide treatment in a home-based or clinic setting. Once children have reached school age, they may be identified as a student with ASD by their educational program, which often spurs parents to seek a medical diagnosis.

Developmental Screening In general, the AAP recommends developmental surveillance at every pediatric preventative care visit. Surveillance is described as a flexible and longitudinal process in which healthcare professionals identify children who may have developmental problems (American Academy of Pediatrics, Committee on Children with Disabilities, 2001). If parents or the health pro-

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fessional indicate concern about the child’s development, a developmental screening specific to the concern should be completed. For ASD, screening should include questions regarding the core symptoms, including social communication and repetitive or stereotyped behaviors (Volkmar, Booth, McPartland, & Wiesner, 2014). Some screening instruments may be completed by providers, while others are completed by the child’s caregivers. In addition, to facilitate physician referral to early intervention services, the AAP has recommended that all children be screened using an evidenced-based, ASD-specific instrument during well-child visits at 18 and 24 months of age along with developmental surveillance and screening (Johnson et al., 2007). These ages were chosen based on evidence that symptoms of ASD are often present by 18  months of age and that effective early intervention strategies are available for young children with ASD (American Academy of Pediatrics, Committee on Children with Disabilities, 2001; National Research Council, 2001). Thus, ASD-specific screening in children between 18 and 24 months can assist in early detection and improve outcomes (Zwaigenbaum et al., 2015). Beyond ASD-specific screening, the AAP also recommends broadband developmental screening using a validated tool at 9-, 18-, and 24or 30-month well-child visits. Developmental screening involves a brief, standardized tool that helps identify children at risk of a developmental disorder. Multiple domains of development are assessed and can include gross/fine motor, language/communication, cognitive, academic, self-­ help, problem-solving, social-emotional, and behavioral skills. Screening tools are often completed by parents, and the healthcare provider interprets the screening results. The Ages & Stages Questionnaires, Third Edition (ASQ-3; Squires, Bricker, & Potter, 2009), is one of the most common and well-validated developmental screening tools. The ASQ-3 is completed by parents and identifies children from 1 to 66 months with developmental delays. Although it is not an autism-specific screener, the ASQ-3

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includes questions on behavior and communication that can be associated with ASD. The Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-­R/F; Robins et  al., 2014) is one of the most widely used and studied ASD screeners. The M-CHAT-R/F is a two-stage parent-report screening tool to assess risk for ASD in children between 16 and 30 months of age. The M-CHAT-­R/F can be downloaded at no cost for clinical, research, and educational purposes. The parent or caregiver completes the M-CHAT-R, which consists of 20 yes/no questions to assess the presence of behaviors that can be associated with ASD. The medical provider scores the instrument and, if the screen is positive, administers follow-up questions specific to the items that the child failed on the M-CHAT-R. Other broadband screeners are available that detect developmental delays that may be associated with ASD.  The Communication and Symbolic Behavior Scales-Developmental Profile Infant-Toddler Checklist (CSBS DP™ Infant-Toddler Checklist; Wetherby & Prizant, 2002) is a caregiver completed screening tool for children between 6 and 24  months of age. A study by Pierce et al. (2011) found that using the CSBS DP™ Infant-Toddler Checklist as a screening tool at children’s 1-year check-up showed promise in identifying those in need of further evaluation for ASD and other developmental delays. In addition, the Survey of Well-being of Young Children (SWYC)™ is a comprehensive screening instrument for children from birth to age 5 (Sheldrick & Perrin, n.d.). It is available for free download and can be completed during pediatric health visits. Each age-specific form includes sections on developmental milestones, behavioral and emotional development, and family risk factors. At certain ages, a section for autism-specific screening is also included. If screening or clinical impression indicates concern for ASD, the child should be referred for a formal diagnostic evaluation (Huerta & Lord, 2012; Volkmar, Booth, et  al., 2014). Physicians play an important role not only in developmental and autism-specific screening but also in sharing their initial impressions with families and dis-

cussing what to expect and how to prepare for the diagnostic evaluation (Huerta & Lord, 2012).

The ASD Diagnostic Evaluation The diagnostic assessment of individuals with ASD, including administration of standardized tools, may be carried out by various disciplines including physicians, psychologists, educators, and other allied health professionals. Interdisciplinary evaluation requires a family-­ centered approach, and parents and other caregivers should be included as active partners in the diagnostic process (Guaralnick, 2000; Huerta & Lord, 2012). The knowledge that parents have gained through their experiences as well as their plans for the present and the future are invaluable components of an evaluation (Geeter, Poppes, & Vlaskamp, 2002). Diagnostic evaluation typically includes activities such as taking a comprehensive developmental history and/or structured clinical interview, thorough physical exam and medical evaluation, standardized behavioral observations of the individual, and gathering information via standardized questionnaires from others involved in the individual’s care. Regardless of who participates in the diagnostic assessment process, it is critical that all professionals have expertise in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5; American Psychiatric Association, 2013), diagnostic criteria for autism spectrum and related neurodevelopmental disabilities as well as standardized assessment practices. It is important to note that even gold standard assessments should not be used alone to make a diagnosis as use of expert clinical judgment has been found to improve diagnostic reliability and hold important value in the diagnostic process (Charman & Baird, 2002).

Developmental History Diagnosis of ASD relies on a thorough examination, including self-report (when possible and indicated) and caregiver interviews, as well as a

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review of past medical/educational records and other historical information (Volkmar, Booth, et  al., 2014). This process is typically the first step of the evaluation process and often may even occur as a separate appointment. This allows the clinician to determine whether the type and amount of ASD-related symptoms are present to warrant further evaluation. In order to establish diagnostic criteria, information must be gathered regarding current symptomatology and developmental history consistent with ASD (Constantino & Charman, 2016). Clinicians should obtain information about the pregnancy and birth history, as well as the individual’s general health. A thorough review of development over time should be conducted, including developmental milestones and any abnormalities in the early years (e.g., regression) (Gotham, Bishop, & Lord, 2011). As symptoms of ASD emerge within the early childhood period, caregivers are asked to recall their child’s temperament, level of social relatedness, and communication skills when they were infants and toddlers. The history should also include documentation of the child’s participation in early intervention services as well as past or current educational programming, outpatient services, and behavioral interventions. A review of the family history of mental health diagnoses and neurodevelopmental and other disabilities is included. The family’s history, culture, and possible psychosocial issues should also be explored and addressed throughout the evaluation process. Medical Evaluation  A comprehensive physical examination completed by a qualified health professional with expertise in ASD is an important aspect of an interdisciplinary evaluation. Medical providers may include pediatricians (often a developmental-behavioral pediatrician), nurse practitioners, psychiatrists, or neurologists. A developmental-behavioral pediatrician is a subspecialist with particular training in understanding the medical and psychosocial aspects of a child’s developmental and behavioral challenges, including those with cerebral palsy, ASD, and other developmental disabilities. Best practice parameters recommend that medical providers

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complete a physical examination, a Wood’s lamp examination for signs of tuberous sclerosis, and possible genetic testing (Volkmar, Booth, et  al., 2014). The components of the physical exam may include examination of head circumference, cranial nerve function, cerebellar function, deep tendon reflexes, postural responses, and primitive reflexes. In addition, the physical exam may reveal skin stigmata or dysmorphic features that can lead to additional diagnostic considerations (Ellison-Wright & Boardman, 2015). Genetic testing for fragile X syndrome or a chromosomal microarray may be recommended due to the documented link between children with ASD and some genetic syndromes (Betancur, 2011; Hatton et al., 2006). In addition, many families may wish to discuss challenges with sleep, toileting, or feeding with a medical provider. They also may wish to consult with a physician around current medications and any possible side effects. Notably, there is an increased prevalence of seizures and other abnormal epileptogenic activity in children with ASD (Tuchman, 2000). Therefore, a neurology assessment may be warranted if there is concern for possible seizures. Seizures may be a concern if the family reports periods of unresponsiveness or staring spells. If there is a history of seizures, neurological abnormalities, or a regression in skills, further neurological testing may be warranted including a possible electroencephalogram (EEG), cranial magnetic resonance imaging (MRI), or computed tomography (CT) scan. Standardized Assessment of ASD  The field has seen tremendous growth in the development of standardized ASD assessment practices over the past several decades (see Charman & Gotham, 2013 for review). Diagnostic measures vary in terms of utility, convenience, and psychometric properties. However, a number of measures are now widely recognized as gold standard assessment measures for the diagnosis of ASD, including the Autism Diagnostic Interview-Revised (ADI-R; Lord, Rutter, & Le Couteur, 1994); the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2; Lord et al., 2012); the

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Social Communication Questionnaire (SCQ; Rutter, Bailey, & Lord, 2003); and the Social Responsiveness Scale, Second Edition (SRS-2; Constantino & Gruber, 2012) (see Table 1). These measures have strong psychometric properties, have been translated into many languages, and are widely used and studied in many countries. A full review of all diagnostic measures, including psychometric characteristics, is beyond the scope of this chapter but can be found elsewhere (see Charman & Gotham, 2013; Lord & Corsello, 2005 for review).

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autism, autism spectrum, non-spectrum). The ADI-R consists of 93 items and takes 1.5–3 h to administer in a face-to-face interview setting. The original instrument was designed to be used with individuals with a mental age above 24 months, though new algorithms have extended the use to children ages 12 months and up with a mental age of 10 months or above (Kim & Lord, 2012). The ADI-R was originally designed for research purposes and requires significant training and practice to become reliable in administration and scoring. One additional interview for the assessment of ASD-related behaviors is the Diagnostic Semi-structured Interviews  When the interdisci- Interview for Social and Communication plinary team requires additional information Disorders (DISCO: Wing, Leekam, Libby, above and beyond a developmental history, semi-­ Gould, & Larcombe, 2002), which was originally structured interviews may be completed to gather intended to measure the individual patterns of information about an individual’s historical and/ development and needs of those with ASD. The or current behavior. They typically consist of DISCO is an investigator-based, semi-structured structured questions asked by the examiner to interview during which information is elicited parents or caregivers who are familiar with the and scored by the examiner. Items assess behavindividual being evaluated and allow for inter- iors associated with ASD including social interviewer judgment (as opposed to only subjective action, communication, imagination, and reporting) in scoring and interpretation of the repetitive behaviors, as well as development behaviors reported. They can be time-intensive across a variety of domains and atypical behavand require face-to-face contact and thus are not iors not specific to ASD.  The measure was often feasible in clinical practice. designed to aid clinicians in identifying treatment targets and goals for individuals with ASD. Of the existing caregiver interviews available for the diagnostic assessment of ASD, the Autism Observational Measures  Observational meaDiagnostic Interview-Revised (ADI-R: Lord sures typically consist of brief, structured activiet al., 1994) is among the most studied and widely ties designed to elicit specific symptoms and accepted. The ADI-R is a semi-structured behaviors that can be observed and evaluated by investigator-­ based interview for caregivers of the examiner. The Autism Diagnostic Observation children and adults for whom a diagnosis of ASD Schedule, Second Edition (ADOS-2; Lord et al., is suspected. Items focus on behaviors related to 2012), is a semi-structured standardized assessthe diagnostic criteria for ASD, including early ment of ASD for use with toddlers through adultdevelopment, language/communication, recipro- hood. Four ADOS-2 modules are designed for cal social interaction, and restricted and repeti- individuals with varying language levels (i.e., tive behaviors and interests. Scores are assigned nonverbal through fluent language), and a toddler for current behavior and/or the period between module (Luyster et al., 2009) is now available for the individual’s fourth and fifth birthday, a time children ages 12–30 months of age. The measure when symptoms of ASD are thought to be most takes approximately 45–60  min to administer. pronounced. Scoring is based on interviewer Observed behaviors and ASD-related symptoms judgment of the caregiver-reported behaviors; are scored by the examiner, and scores translate scores are entered into a diagnostic algorithm to a diagnostic algorithm which results in a catewhich then translate into a categorical range (i.e., gorical outcome (i.e., autism, autism spectrum,

Table 1  Autism evaluation tools Evaluation tool Screening tools Modified Checklist for Autism in Toddlers Social Communication Questionnaire Diagnostic interviews Autism Diagnostic Interview-Revised

Age range M-CHAT SCQ

16–30 months 4 years and up

ADI-R

Developmental age ≥2.0 years All ages

Diagnostic Interview for Social and Communication Disorders Observational measures Autism Diagnostic Observation Schedule, Second Edition

DISCO

Autism Observation Scale for Infants Communication and Symbolic Behavior Scales

AOSI CSBS

Screening Tool for Autism in Toddlers Childhood Autism Rating Scale, Second Edition Questionnaires Social Responsiveness Scale, Second Edition Autism Spectrum Rating Scale Gilliam Autism Rating Scale, Third Edition Psychological assessment – Cognitive assessment Mullen Scales of Early Learning

STAT CARS-2

12 months and up 6–18 months Functional communication 6–24 months, up to 6 years old 24–36 months 2 years and up

SRS-2 ASRS GARS-3

2.5 years and up 2–18 years 3–22 years

Bayley Scales of Infant Development, Third Edition Wechsler Preschool and Primary Scales of Intelligence, Fourth Edition; Wechsler Intelligence Scale for Children, Fifth Edition; Wechsler Adult Intelligence Scales, Fourth Edition Stanford-Binet Intelligence Scales, Fifth Edition Differential Ability Scale, Second Edition Psychological assessment—Adaptive functioning Vineland Adaptive Behavior Scales, Third Edition Scales of Independent Behavior-Revised Adaptive Behavior Assessment System, Third Edition Psychological assessment – Behavior checklists Child Behavior Checklist Aberrant Behavior Checklist, Second Edition Developmental Behavior Checklist, Second Edition Behavior Assessment System for Children, Third Edition Speech and language assessments Receptive-Expressive Emergent Language Test, Third Edition The Rossetti Infant-Toddler Language Scale Receptive and Expressive One-­Word Picture Vocabulary Tests, Fourth Edition Test of Early Language Development, Fourth Edition Preschool Language Scales, Fifth Edition Oral and Written Language Scales, Second Edition Pragmatic language assessments Test of Pragmatic Language, Second Edition Clinical Evaluation of Language Fundamentals, Fifth Edition Occupational and physical therapy assessments Bruininks-Oseretsky Test of Motor Proficiency, Second Edition Peabody Developmental Motor Scales, Second Edition Sensory Integration and Praxis Test Sensory Profile, Second Edition Sensory Processing Measure

ADOS-2

Mullen

Birth to 5.5 years old Bayley-III 1–42 months WPPSI-IV; WISC-V; 2.5–90 years WAIS-IV SB-5 DAS-2

2–85+ years 2.5–18 years

VABS-3 SIB-R ABAS-3

Birth–90 years 3 months to 80+ years Birth–89 years

CBCL ABC-2 DBC-2 BASC-3

1.5–18 years 5 years–adult 4 years–adult 2–21.0 years

REEL-3 Rossetti ROWPVT-4; EOWPVT-4 TELD-4 PLS-5 OWLS-II

Birth–3 years Birth–3 years 2 years–adult 3–8 years Birth–8 years 3–22 years

TOPL-2 CELF-5

6–19 years 5–22 years

BOT-2

4–21 years

PDMS-2 SIPT SP-2 SPM

Birth–5 years 4–8 years Birth–14 years 5–12 years

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non-spectrum). Calibrated severity scores, relatively independent of age and intellectual ability, have been developed to allow clinicians and researchers a proxy for autism severity based on an individual’s ADOS-2 algorithm scores (Gotham, Pickles, & Lord, 2009). The ADOS-2 requires considerable training and experience to administer and score reliably but is widely used both in clinical practice and research. With the growing emphasis on early diagnosis of ASD has come several additional standardized observation measures for use in young children. The Autism Observation Scale for Infants (AOSI; Bryson, Zwaigenbaum, McDermott, Rombough, & Brian, 2008) was developed to monitor early signs of ASD as they emerge in infants (6–18 months) who have an older sibling with a diagnosis of ASD.  The Communication and Symbolic Behavior Scales (CSBS; Wetherby & Prizant, 2002) measures communication and symbolic play skills in children ages 8–24 months (and up to 72 months in children with developmental delays) and aids in identifying those who may require more comprehensive evaluation for ASD. The Screening Tool for Autism in Toddlers (STAT; Stone, Coonrod, & Ousley, 2000) is an interactive, play-based (level 2) screening measure which assesses key social communication behaviors important to ASD diagnosis. While the STAT has been validated in children 24–36 months of age, it has been shown to have utility for screening children 14–48 months. Questionnaires  While some behaviors can be readily observed during a diagnostic evaluation, other symptoms of ASD may not be demonstrated during the relatively brief context of clinical assessment (Constantino & Charman, 2016). Caregivers, teachers, and other providers may complete questionnaires to supplement information gathered via clinical interview and observational measures. Several potential advantages of these measures exist. They allow for collection of information across settings, informants, and time periods, which is critical as face-to-face observational assessments capture only a snapshot of behavior during a relatively short time period.

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Use of these measures can be an efficient way to gather information from other caregivers, educators, or providers about the individual. Many validated ASD questionnaires are available. Two of the most well known and studied include the Social Communication Questionnaire (SCQ; Rutter et al., 2003) and the Social Responsiveness Scale, Second Edition (SRS-2; Constantino & Gruber, 2012). The SCQ was developed as a parent or caregiver checklist and includes 40 yes/no items adapted from the ADI-R. The SCQ results in a total score which can be evaluated against a criterion score to determine risk for ASD diagnosis. The SRS-2 is a 65-item parent or teacher report questionnaire for use with individuals ages 2.5 through adulthood, which results in continuous scores across five treatment subscales, two DSM-5 compatible subscales, and a total score. Additional validated ASD questionnaires include the Childhood Autism Screening Test (CAST; Williams et al., 2005, 2008), Childhood Autism Rating Scale (CARS; Schopler, Reichler, & Renner, 1986), Autism Spectrum Rating Scale (ASRS; Goldstein & Naglieri, 2010), and the Gilliam Autism Rating Scale (GARS; Gilliam, 1995).

 dditional Domains of ASD A Evaluation Many disciplines may be involved in a comprehensive interdisciplinary evaluation of ASD depending on the unique characteristics and symptom presentation of the individual being evaluated and the questions and concerns expressed by the individual and/or their caregivers and referring providers. While many domains of evaluation are included in this chapter, this is not an exhaustive list. Within each evaluation domain reviewed below, commonly used assessment measures are discussed (see Table 1). Psychology  It is well known that there is significant variability in the expression of ASD, particularly with regard to ASD symptom severity as well as cognitive, language, and adaptive skills, and that these variables are related to response to

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intervention (Gabriels, Hill, Pierce, Rogers, & Wehner, 2001; Warren et al., 2011) and outcome (Anderson, Liang, & Lord, 2014; Fein et  al., 2013; Stevens et  al., 2000). Psychologists offer the important service of characterizing the strengths and weaknesses in an individual’s developmental, neurocognitive, and behavioral profile. They often assess developmental and/or intellectual and adaptive skills, as well as evaluate for co-occurring behavioral and mental health conditions in individuals referred for ASD evaluation. This information can assist the interdisciplinary team and family of the referred individual in understanding symptoms of ASD in the context of the broader neuropsychological profile of the individual, a critical step toward understanding the prognosis and developing an appropriate treatment plan.

Developmental and Cognitive Assessment  In addition to the evaluation of autism symptoms, psychologists may complete other standardized assessments to provide more information regarding the child’s level of functioning. For young children (i.e., those aged 5 and younger), developmental tests are often used to evaluate a broad range of abilities, including early cognitive skills. Developmental tests are often chosen as intellectual abilities do not typically become stable until children reach school age. Commonly used developmental assessments for the evaluation of very young children at risk for or diagnosed with ASD include the Mullen Scales of Early Learning (MSEL; Mullen, 1995) and the Bayley Scales of Infant Development, Third Edition (Bayley-III; Bayley, 2006).

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and level of social engagement, of each individual often influences test selection. For example, for those with more limited language abilities, it is often preferable to select a test that may have a lower language demand, such as the Differential Ability Scale, Second Edition (DAS-2; Elliott, 2007). Similarly, for those with significant cognitive limitations, it is often preferable to choose a test such as the Stanford-Binet Intelligence Scales (SB5; Roid, 2003), which provides norms for a wide range of ability levels. More traditional tests of intelligence that are widely known in the psychological and educational arenas include the Wechsler Intelligence Scale  for Children (WISC-5; Wechsler, 2014) and the Wechsler Preschool and Primary Scale of Intelligence (WPPSI-IV; Wechsler, 2012). Individuals often perform differently on various measures of intellectual ability; as such, it is critical for the evaluating psychologist to have experience both in cognitive assessment and in evaluation of individuals with ASD.  For some older children, adolescents, and adults, especially those with average (or above) intellectual abilities, it may be of interest to understand more thoroughly the subtle and varied strengths and weaknesses (e.g., with regard to cognitive, academic, and or attention/executive functioning skills) in an individual’s profile, and a comprehensive neuropsychological evaluation may be warranted.

Adaptive Skills Assessment  Adaptive functioning characterizes skills across a broad range of domains (e.g., language, communication, conceptual, social, motor, community functioning, personal care skills) which are necessary for independent functioning in day-to-day life. Tests of intelligence are used to characterize Though adaptive skills often correlate highly the cognitive profile of individuals. For those with intellectual ability, there can be discrepanwith ASD, it is of particular interest to under- cies in their relationship with other domains of stand relative strengths and weaknesses given functioning, highlighting the need for careful that there is often a significant discrepancy in the assessment in order to identify targets for interverbal and nonverbal skills of individuals with vention. The Vineland Adaptive Behavior Scales ASD and that these discrepancies may be related (VABS-3; Sparrow, Cicchetti, & Saulnier, 2016), to overall ASD symptom severity (Joseph, Tager-­ Adaptive Behavior Assessment System (ABAS-­ Flusberg, & Lord, 2002). The unique profile, 3; Harrison & Oakland, 2015), and Scales of Behavior-Revised (SIB-R; including developmental age, language ability, Independent

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Bruininks, 1996) are three widely recognized and used measures to assess adaptive functioning in individuals with ASD.

Assessment of Co-occurring Conditions  Psychologists also have an important role in both differential diagnosis of ASD and other behavioral and psychiatric disorders, as well as identifying co-occurring disorders in those with a diagnosis of ASD. Individuals with ASD are at increased risk for having one or more co-occurring psychiatric conditions, and the presence of these co-occurring conditions has been found to have a deleterious impact on overall functioning, underscoring the need for identification and focused intervention (see Rosen, Mazefsky, Vasa, & Lerner, 2018 for review). Complicating identification of these conditions is the influence of individual differences (e.g., age, sex, and intellectual and adaptive functioning levels), the heterogeneous nature of ASD symptom presentation, and diagnostic overshadowing. Nonetheless, assessment of behavioral and psychiatric symptoms is often carried out through structured clinical interview (see, for example, Leyfer et al., 2006), observation, and use of standardized measures of behavior and psychiatric symptoms. Common symptom inventories for assessment of psychopathology that have been tested in individuals with developmental disabilities include the Child Behavior Checklist (CBCL; Achenbach, 2001; Aman & Singh, 1994), Aberrant Behavior Checklist (ABC; Aman & Singh, 1994), and the Developmental Behavior Checklist (DBC; Einfeld & Tonge, 1992).

Speech-Language Pathology  Because ASD is characterized by impairments in social communication, speech and language assessments are an integral component of interdisciplinary team assessments. Speech and language features critical to the diagnosis of ASD include delayed language acquisition (Zwaigenbaum et  al., 2015), abnormalities in language development that may be observed as early as 14 months old (Chawarska et al., 2007), and decreased use of joint attention

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and nonverbal communication behaviors at 1 year old (Osterling & Dawson, 1994; Werner & Dawson, 2005). Some individuals may not experience a language delay but may have deficits in their use of social, or pragmatic, language. Because individuals with ASD present as a heterogeneous population with varying language abilities, it can be a challenge for speech-­language pathologists (SLP) to determine appropriate assessment measures (Broome, McCabe, Docking, & Doble, 2017). A thorough speech and language assessment starts with a parent/caregiver interview and a review of records. Because research has shown that expressive language delay could be an early feature of ASD, it is important to understand early communication development, including skills such as cooing, babbling, joint attention to objects, crying, and functional use of first words. It is also important to gather information about the use of language at the time of the evaluation. Some individuals with ASD may use nondirected language, jargon, or echolalia; others may use fluent, complex sentences but may not understand how to apply language in social situations (e.g., when they should apologize or why they are apologizing). Understanding how the individual uses language in their environment is important for both assessment and treatment planning. Areas of language to assess during an ASD-­ specific evaluation include receptive language, expressive language, and pragmatic language. Special considerations for choosing a specific assessment may include the individual’s chronological age, level of cognitive functioning, and ability to participate in formal testing given his or her level of joint attention. An informal observation of the individual’s communication skills and behavior during the family interview or review of results from an adaptive measure can also help the SLP determine which assessment to use. Observational/Checklist Measures  For very young children who have limited language and ability to participate in standardized testing, parent/caregiver questionnaires and checklists are useful to evaluate a child’s early functional

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c­ommunication skill level. For example, the Receptive-Expressive Emergent Language Test, Third Edition (REEL-3; Bzoch, League, & Brown, 2003), is a parent interview consisting of yes/no questions. The REEL-3 consists of two subtests: receptive language and expressive language. Testing begins with an entry point that corresponds to the child’s age, and the child receives an ability score based on parent responses. Another option for children ages birth to 3  years old is The Rossetti Infant-Toddler Language Scale (Rossetti, 2006). This assessment explores early language development with six subtests: interaction attachment, pragmatics, gesture, play, language comprehension, and language expression. Behaviors can be observed through elicitation, observation, and caregiver report. In addition to checklist measures, structured play activities are useful in providing additional behavioral observations. During these informal activities, the SLP can assess the child’s abilities such as making a request, meaningfully imitating words and play, and indicating choices.

Receptive/Expressive Language  If a child is observed to have limited language or difficulties participating in standardized testing, the Receptive and Expressive One-Word Picture Vocabulary Tests, Fourth Edition (ROWPVT-4, EOWPVT-4; Martin & Brownell, 2011), are useful measures to assess single-word vocabulary skills. The ROWPVT-4 assesses the child’s ability to match a verbally presented noun, verb, or concept given a multiple-choice format. The test is standardized for ages 2 years old through geriatric age and can be a helpful tool in determining early language delay. The EOWPVT-4 is similar to the ROWPVT-4 but differs in that the child is asked to name pictured nouns, verbs, and concepts. Each test takes 15–25 min and is appropriate for children with a short attention span or difficulties with joint attention. For children with higher language level but continued difficulty with attention, the Test of Early Language Development, Fourth Edition (TELD-4; Hresko, Reid, & Hammill, 2017), is an

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assessment which takes between 15 and 45 min to complete. The TELD-4 measures language delays in children ages 3–7  years, 11  months old. The TELD-4 assesses both receptive and expressive language skills including following directions, answering questions, and identifying parts of speech such as prepositions. For children who can sit and participate in longer testing, the Preschool Language Scales, Fifth Edition (PLS-5; Zimmerman, Steiner, & Pond, 2011), is a comprehensive tool to assess language development. This measure can be used from birth to 7  years, 11  months, and takes between 45 and 60 min to administer. The PLS-5 assesses receptive and expressive language skills through tasks that include preverbal, interaction-based skills, emerging language skills, and early literacy skills. Finally, older children who are observed to use higher-level language skills would benefit from assessments such as the Oral and Written Language Scales, Second Edition (OWLS-II; Carrow-Woolfolk, 2011). The OWLS-II has four scales: listening comprehension, oral expression, reading comprehension, and written expression. The listening comprehension and oral expression subtests are particularly useful when examining language skills during an ASD-specific assessment. A strength of this assessment is that it ranges in age from 3  years to 21  years, 11  months. The OWLS-II assesses higher-level language skills, including lexical/semantics, syntax, pragmatics, and supralinguistics. Nonverbal individuals can also benefit from a specialized assessment for augmentative and alternative communication (AAC). AAC strategies can range from use of gestures, objects, signs, and communication boards to speech-­ generating devices and are based on the individual’s needs and the family’s goals. AAC devices can be temporary and used as support for the individual as they gain functional receptive and expressive language skills over time. An AAC assessment is typically performed by a speech-­ language pathologist and is completed after an initial assessment of the individual’s overall ­language skills.

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Pragmatics  Individuals with ASD may not necessarily present with a language delay but may present with deficits in their use of social language. There are several assessments that are useful to assess pragmatic language. One example is the Test of Pragmatic Language, Second Edition (TOPL-2; Phelps Terasaki & Phelps-­ Gunn, 2007). This test, designed for use by speech-language pathologists, can be used from ages 6 years to 18 years, 11 months. The examiner reads short paragraphs with varying social situations. The individual is then asked to respond to a question about the social situation, and his or her response is recorded. The test examines the effectiveness and appropriateness of the individual’s social language skills, as well as his or her ability to understand what is being said and why it is being said. The pragmatic language skills are broken up into six core areas: physical setting, audience, topic, purpose (speech acts), visual-­ gestural cues, and abstraction. Other language tests may have subtests that examine pragmatic language skills. One example is the Clinical Evaluation of Language Fundamentals, Fifth Edition (CELF-5; Wiig, Semel, & Secord, 2013). The CELF-5 includes the Pragmatics Profile, which is a checklist of verbal and nonverbal pragmatic skills. The examiner completes the checklist with information from those who know the individual well, such as caregivers and teachers. The CELF-5 also has a supplemental Pragmatic Activities Checklist (PAC), which is a criterion-referenced measure. The examiner observes the individual’s functional communication skills while engaging them in conversation. Afterward, the examiner completes the checklist based on their observations. In addition to standardized measures, behavioral observations during pragmatic evaluation are critical to the overall language assessment. It is important to engage the individual in conversation while observing the use of eye contact, ability to expand on conversation topics and share information, and ability to participate in reciprocal conversation with appropriate turn-taking.

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Audiology  Symptoms of ASD, such as language delay, limited social interactions, and failure to respond to his or her name, can also be present in individuals with a hearing loss. An audiological assessment, performed by an audiologist, is another key component of a thorough ASD assessment. If a child cannot hear language, they will likely be delayed in acquisition of speech and language (Psarommatis, Douniadakis, Tsakanikos, Kontrogianni, & Apostolopoulos, 2001). Children with delayed language may lack the ability to interact effectively in social situations given their challenges with communication. Because of these similarities to symptoms of ASD, it is critical to either rule out or identify a hearing loss. In addition, some children with hearing impairment may also have comorbid ASD (Szymanski, Brice, Lam, & Hotto, 2012). A typical hearing test occurs in a sound booth. Sound is either presented through a speaker or headphones that the child wears. An audiologist will look for a child’s response (i.e., looking toward a sound) or ask the child to indicate that he or she heard a sound. The audiologist then plots the child’s responses on an audiogram. For children with symptoms of ASD, who may be hypersensitive to sounds, have difficulties following directions, have difficulties adapting to new environments, or who are hypersensitive to the touch of headphones, this can be a challenging assessment (Stiegler & Davis, 2010). Audiologists can prepare children by walking them through the sound booth, showing them the headphones, or giving the families social stories to prepare the children before their audiology visit. If a hearing test is not possible through behavioral observation, audiologists may still assess auditory function through a tympanogram. A tympanogram is a small probe placed into the ear canal. The probe presents sound and a computer measures the sound that is presented back. This procedure assesses the functioning of the middle ear. If a child absolutely cannot tolerate any headphones or probes in their ears, and if they do not have the joint attention or language skills to otherwise participate in behavioral hearing tests,

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another option is an auditory brainstem response (ABR). This requires sedation and involves sounds being presented through headphones. Surface electrodes, typically placed behind each ear and on the forehead, measure auditory nerve function by recording the inner ear and auditory nerve response on a computer. This test can estimate hearing levels through evaluating the functioning of the inner ear. An audiologist interprets the test results and will typically share test results on the same day of the appointment. Occupational and Physical Therapy  Children with ASD often exhibit differences in sensory processing (Tomchek, Huebner, & Dunn, 2014), fine motor delays, and gross motor delays (Lane, Harpster, & Heathcock, 2012) that necessitate participation in an occupational therapy and/or a physical therapy evaluation to ensure these needs are adequately considered and addressed. Occupational therapists typically emphasize the evaluation of current sensory processing differences, fine motor skills, self-regulation, adaptive skills, and self-advocacy skills (Crabtree & Demchick, 2018). Physical therapists typically evaluate the child’s gross motor skills, including functional mobility (e.g., gait), motor control, spatial awareness, functional strength, and visual-­ motor coordination (Academy of Pediatric Physical Therapy, School-Based Special Interest Group, 2014a, 2014b). Physical and occupational therapists often work closely together and may administer different components of the same standardized assessment.

Sensory Processing  Differences in sensory processing are one of the most commonly recognized core features of ASD. While many children without ASD may exhibit sensory differences, children with ASD tend to exhibit particular challenges, including sensitivity to auditory stimuli (Dahlgren & Gillberg, 1989). As such, careful evaluation of the child’s sensory differences and how they may be impacting everyday functioning is a critical part of an occupational therapy evaluation. Currently, there are 15 available measures to assess sensory processing; however, a review

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of the literature suggests that 3 are most commonly utilized (Jorquera-Cabrera, Romero-­ Ayuso, Rodriguez-Gil, & Trivino-Juarez, 2017). The Sensory Integration and Praxis Test (SIPT; Ayres, 1989) is considered the gold standard for assessing sensory integration processes. The SIPT is appropriate for children between the ages of 4  years and 8  years, 11  months. It measures visual, tactile, and kinesthetic perception, as well as motor performance, and takes approximately 2 h to administer; any individual subtests can be administered separately in approximately 10 min. Other commonly used measures include the Sensory Profile (SP; Dunn, 2014) and the Sensory Processing Measure (SPM; Parham, Ecker, Miller, Henry, & Glennon, 2007). Both of these measures are questionnaires that can be completed by both parents and teachers.

Activities of Daily Living  Occupational therapists will evaluate a child’s ability to complete daily living skills and self-help tasks, including feeding, dressing, and grooming. An occupational therapist may gather much of this information through a thorough parent interview; however, they may also utilize a standardized measure of adaptive functioning, like the Vineland Adaptive Behavior Scales, Third Edition (see Psychology section for additional information). Gathering information related to the child’s functional performance across these daily living skills helps the occupational therapist determine the most appropriate intervention to improve the child’s ability to thrive within their environment (American Occupational Therapy Association, 2014).

Fine/Gross Motor Skills  Many measures designed to assess motor skill development are used jointly by occupational and physical therapists. One such measure is the Bruininks-­ Oseretsky Test of Motor Proficiency, Second Edition (BOT-2; Bruininks & Bruininks, 2005). The BOT-2 is separated into two kits with accompanying forms: a gross motor kit and a fine motor kit. Together, these two kits cover

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eight subtest areas, including fine motor precision, fine motor integration, manual dexterity, bilateral coordination, balance, running speed and agility, upper-­ limb coordination, and strength. The tasks are typically fun and interactive for children and include activities such as connecting the dots, cutting out a circle, copying a star, jumping jacks, and throwing a ball at a target. Best practice recommendations suggest that the BOT-2 is more appropriate for higher functioning children with ASD, given task complexity (Academy of Pediatric Physical Therapy, School-Based Special Interest Group, 2014a). An additional test is the Peabody Developmental Motor Scales, Second Edition (PDMS-2; Folio & Fewell, 2000), which measures reflexes (for infants), ability to sustain bodily control, ability to move, ability to manipulate objects, hand grasp, and visualmotor integration. For both the BOT-2 and the PDMS-2, administration elicits separate scores for fine motor and gross motor domains. The Bayley-III, which was mentioned previously, is a comprehensive measure that covers both fine and gross motor skills in addition to early cognitive and language skills (Bayley, 2006). While fine/gross motor delays are not core features of the diagnosis of ASD, it is critical to understand the child’s strengths and weaknesses in these areas in order to make appropriate recommendations for intervention.

Nutrition  Children with ASD are frequently described as selective or picky eaters (Cermak, Curtin, & Bandini, 2010). For this reason, consultation with a nutritionist may be included as part of an interdisciplinary evaluation. Restrictive food intake can lead to nutritional insufficiency for children with ASD and is often a significant stressor for caregivers (Groden, Diller, Bausman, Velicer, Norman, & Cautela, 2001). A nutritional assessment typically includes an evaluation of height and weight compared to other age-matched children and elicitation of information about typical eating habits, sometimes through the use of food records. The results of the assessment may lead to recommendations for vitamin and mineral

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supplementation or additional ways to enrich the child’s diet. If the nutritionist is concerned about the severity of the child’s restricted food intake, they may recommend ongoing feeding treatment. Feeding problems in children with ASD are multifactorial and complex (Cermak, Curtin, & Bandini, 2010) and may be related to sensory sensitivities or aversion to food textures, smells, tastes, and temperatures. They may also be related to fine motor delays or restricted and repetitive behaviors (e.g., restrictions around food presentation, brands, etc.). Social Work  Social workers often play an important role in gathering information about the many systems impacting the family participating in the evaluation. Social workers participate in the evaluation process by gathering information about the current needs of the child, family, school, day care facility, or community that will need to be considered by the interdisciplinary team (Casey & Elswick, 2011). As such, social workers often provide additional information regarding family dynamics that may assist the team in contextualizing the child’s behavior. Social workers may also address issues of safety such as car seat safety, elopement, or proper storage of weapons in the home. Social workers play an important role after the individual receives an ASD diagnosis in linking the family to intervention services, educational services, family support groups, or financial supports for which the individual may now qualify. Social workers may be trained to provide counseling and emotional support for families that are experiencing grief or distress in the wake of a diagnosis of ASD.

Collaboration with School For school-aged children, the evaluation team may also wish to collaborate with the child’s educational team. This may include gathering information from the child’s teacher or other professionals working with the child at school

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(e.g., speech and language pathologist, resource teacher, administrator, etc.). After a release of information has been signed by the parent or guardian, the evaluation team may contact the school to gather information or send checklists for school personnel to completely assess the child’s functioning in the classroom. In some cases, children may already receive special education supports under the eligibility category of autism spectrum disorder or based on other developmental delays or behavioral challenges. It is important for families and providers to understand that a child who is receiving school-based supports under the school eligibility of “autism spectrum disorder” may not meet the requirements for a medical diagnosis of autism spectrum disorder. Rather, parents are encouraged to bring all previous testing to their medical appointment so that the qualified medical professional can review that information to assist with the decision-­making process. In addition, academic functioning may be an additional concern for many parents and caregivers. Many children with ASD show a discrepancy between their intellectual abilities and their academic achievement (Estes, Rivera, Bryan, Cali, & Dawson, 2011). Parents may be looking for guidance on how to better support their child’s learning and how his or her ASD symptoms may have an impact on classroom performance. Additional academic achievement testing may be warranted as part of the evaluation. Providing resources and recommendations around navigating special education including requesting an Individualized Education Program (IEP) or Functional Behavior Assessment (FBA) may be an important consideration for school-age children with ASD.

Delivering Feedback and Next Steps The Feedback Session Once a diagnosis of ASD has been confirmed through evaluation, including interview, behavioral observations, and assessment, the clinician must then talk with the family about the diagno-

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sis. How to discuss diagnoses with the family is complicated, and the process used depends on both the clinician/team making the diagnosis and the family’s individual needs and preferences. Some providers prefer to talk with the family about the diagnosis first and then discuss supporting evidence, assessments, and recommendations. Other providers discuss the assessments and evaluation procedures first and then culminate the discussion with the diagnosis. While there is no right or wrong way to share a diagnosis, it is important to consider all the participants (e.g., parents, grandparents, individual being diagnosed) and how they might respond to and react to information when it is given. How a parent experiences the diagnostic process can negatively or positively impact their future involvement and willingness to participate in treatment. It is known that when parents have positive experiences with the diagnostic process, they are more likely to engage in clinical recommendations and participate in the child’s intervention plan. When the experience is negative, they may be more reluctant to be active participants in interactions with future providers (Osborne, McHugh, Saunders, & Reed, 2007). Clinicians utilize a variety of models to provide feedback to families at the conclusion of an evaluation. Many providers will choose to prepare visuals or assemble packets of information, brochures, and preliminary recommendations to share with the family (Nissenbaum, Tollefson, & Reese, 2002). Many feedback sessions may begin with the clinician providing an overview of what will happen during the informing (Sloper & Turner, 1993). During this conversation, it is important for the clinician to emphasize how the family’s observations were incorporated into the diagnostic conclusion (Brogan & Knussen, 2003). This should be accompanied by a description of the evaluation tools used to determine the diagnosis. While a large amount of information is often shared, providers should attempt to minimize the possibility of overwhelming families. It is also important for the clinician to be sure to discuss the child’s strengths and ascertain the caregivers’ understanding and acceptance of the diagnosis prior to ending the informing

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a­ ppointment (Graungaard Nissenbaum et al., 2002).

&

Skov,

2006;

schools and other agencies, they are rarely asked to consult or provide input on the child’s treatment plan or care plan (Carbone et  al., 2010). Therefore, it is common for parents to become Care Coordination the care coordinators for their children, which increases family and parent burden (Carbone Following a diagnosis of ASD, parents often et al., 2010). The utilization of care coordination express a need to find a medical home in order to within a medical home can help alleviate the burimprove access to resources and decrease the den and stress to both family and providers. If overall family stress. A medical home is defined providers want to provide adequate and compreby the American Academy of Pediatrics (2002) hensive care to children with ASD, then care as a way of delivering medical care that is family-­ coordination should no longer be considered an centered, accessible, continuous, includes care optional service and should be integrated within a coordination, and is culturally effective primary care office (Antonelli et al., 2008). (American Academy of Pediatrics, 2002). Care When pediatricians are unable to provide adecoordination is defined as a collaborative process quate assistance with identification and access to that allows families and children to access ser- necessary treatments, supports, and resources, vices and supports in an organized manner, which ongoing care through a developmental-­behavioral optimizes the healthcare experience (Carbone, pediatrician may be appropriate. In particular, if Behl, Azor, & Murphy, 2010). A medical home is concerns about co-occurring psychiatric disoressential as children diagnosed with ASD often ders exist, the family and child should be referred require more health and educational services than on to a psychiatrist or developmental-behavioral other children with complex medical needs pediatrician who can consider both psychiatric (Cheak-Zamora & Farmer, 2015). This is due not and developmental history when making treatonly to the difficulties associated with ASD but ment recommendations (Committee on Children also the comorbid conditions that often co-occur with Disabilities, 2001). with the diagnosis (Cheak-Zamora & Farmer, 2015; Golnick, Ireland, & Borowsky, 2009). Typically, pediatricians are expected to pro- Models of Interdisciplinary vide the comprehensive medical home and help Evaluation guide families through a complex medical journey to gain access to services, therapies, and sup- While interdisciplinary evaluation of ASD is a ports needed (Golnick et  al., 2009). However, service many academic medical centers provide, pediatricians often do not have the specialized minimal literature exists to clarify and delineate training needed to advocate for and support indi- the features of models currently utilized. viduals with ASD and their families. Parents are Historically, a type of transdisciplinary assessaware of this deficit and consistently report that ment called the “arena model” was commonly their child’s primary care physician is unable to used for infants with developmental delays adequately advocate for special services and (Reed, 1993). This type of assessment involved lacks the expertise needed to provide assistance one primary “facilitator” who completed the for their child (Carbone et al., 2010). Moreover, majority of the assessment, with additional team pediatricians have reported significant barriers to members who sat in the room to observe the providing dedicated care coordination within child’s behavior. Reed (1993) discusses a modifitheir offices. These barriers include, but are not cation to the Arena approach, known as the limited to, reimbursement concerns and lack of Revised Arena Format, which was used for the staff and time availability (Antonelli, Stille, & evaluation of preschool children. In this modalAntonelli, 2008; Carbone et  al., 2010). ity, only two disciplines are involved at any given Pediatricians reported that while they refer to time. Typically one discipline will administer

Interdisciplinary Diagnostic Evaluations

their assessments and then allow the second discipline to follow. This team approach allows for behavioral support to maintain the child’s engagement while the primary assessor takes notes and changes testing manipulatives. Tests that encompass a wide range of developmental skills, like the Bayley-III, work well within the Arena Format as many disciplines can be observing skills simultaneously. Gerdts et al. (2018) describe an interdisciplinary model implemented at Seattle Children’s Hospital called the “inter-team” approach. In their model, two providers from different disciplines independently conduct their own evaluations and then meet together to discuss observations, testing results, and diagnostic decision-­making. In this model, the disciplines included psychology, speech-language pathology, advanced practice nursing, and medicine. This approach led to increased provider-reported satisfaction and increased rates of family participation in follow-up care (Gerdts et al., 2018). Although many interdisciplinary evaluations occur at academic medical centers, they are also utilized within the school setting. Prelock, Beatson, Bitner, Broder, and Ducker (2003) describe a model used in Vermont that was specifically designed to be family-centered and strengths-based. The model involves several meetings of the interdisciplinary team on multiple days, including intake, pre-assessment planning, assessment, post-assessment planning, and community follow-up. A critical piece of this approach is that the family is involved in every step and meeting along the way. The authors of this chapter participate in interdisciplinary team evaluations at the Riley Hospital for Children, which is affiliated with the Indiana University School of Medicine. The Riley Child Development Center has provided family-centered, interdisciplinary assessment for families for over 40 years. Indiana’s population is predominantly rural; as such, many of the families seen in our clinic travel more than 2  h to attend full-day interdisciplinary appointments. Our model of interdisciplinary evaluation involves up to eight disciplines, depending on the individual child’s needs. Prior to the appoint-

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ment, a case coordinator is assigned who orients the family to the evaluation day, facilitate transitions throughout the evaluation, and serve as the primary contact person for the family. At minimum, the child and family will meet with psychology, speech-language pathology, social work, and developmental-behavioral pediatrics. Other disciplines that may be involved include audiology, nutrition, occupational therapy, physical therapy, and dentistry. Some families are also able to access social workers trained in care coordination. After each discipline meets with the child, the team comes together to share findings and determine recommended next steps for the family. Finally, the case coordinator communicates the team’s findings, diagnosis, and next steps with the family. We continue to use our interdisciplinary model because families report satisfaction and benefits from seeing multiple providers during one appointment. Moreover, the team approach provides increased confidence in diagnostic decision-making and next steps for the family.

Conclusion Individuals with ASD present with a variety of strengths and weaknesses which impact social, behavioral, and developmental functioning. As such, interdisciplinary evaluation is critical to obtain a comprehensive diagnostic picture of each individual and develop family-centered recommendations and intervention plan. Evidence suggests that interdisciplinary evaluation can result in increased diagnostic accuracy (Stewart et al., 2014), as well as increased provider confidence and satisfaction (Gerdts et  al., 2018). Additionally, interdisciplinary evaluations ideally improve communication among providers and decrease the burden on families to attend multiple evaluation appointments. While these evaluations have become more common at academic medical centers across the country, additional work is needed to identify the best practice model of interdisciplinary evaluation that will utilize community resources efficiently while keeping the family at the center of care.

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Applied Behavior Analysis and Related Treatments Heidi R. Fisher, Cynthia L. Pierre, Noha F. Minshawi, and Jill C. Fodstad

 pplied Behavior Analysis A and Related Treatments

Pediatrics (Maglione, Gans, Das, Timbie, & Kasari, 2012), the American Psychological Association (Autism Treatment Options, 2017; A strong body of evidence demonstrates that the Kazdin, 2000), and the National Institute of most effective interventions for individuals with Mental Health (NIMH, 2007). Furthermore, autism spectrum disorder (ASD) are those early interventions for children with ASD that derived from applied behavior analysis (ABA), have a primary emphasis in alternative an empirically validated and effective treatment approaches, such as facilitated communication rooted in well-established behavioral principles and auditory integration training, have been (Foxx, 2008). In an initial review of 775 peer-­ found to be ineffective among this population reviewed research studies, the National Autism (Foxx, 2008). Center’s National Standards Project (NSP) As the evidence supporting ABA-based therfound that, of the treatments found to be effec- apy has mounted over the last decades, the tive for individuals with ASD, “the overwhelm- demand for ABA-based therapy by parents has ing majority” were behavioral approaches, resulted in systemic changes. Access to ABA-­ including ABA (National Autism Center, 2009). based therapy for individuals with ASD varies by The NSP review established that “treatments location but is now accessible to individuals and from the behavioral literature have the strongest families privately at home, in public and private research support at this time” (p.  52). ABA- schools, at ABA centers, and through community based therapy was endorsed as the treatment of mental health facilities. Many states now require choice by the United States Surgeon General insurance providers to cover behavior therapy (General, U.S., 1999) and has been recognized (including ABA) for individuals with ASD by many professional and research organiza- (Autism and Insurance Coverage, 2015), and tions, including the American Academy of some states have provisions to make Medicaid funds available for behavioral therapy (L & M Policy Research, 2014). Given a strong body of H. R. Fisher · C. L. Pierre · N. F. Minshawi J. C. Fodstad (*) evidence and growing support across numerous Christian Sarkine Autism Treatment Center, Riley professional health institutions and organizaHospital for Children at Indiana University Health, tions, ABA should be considered the first-line Indianapolis, IN, USA intervention for developing a broad array of skills Department of Psychiatry, Indiana University School and reducing aberrant behaviors among children of Medicine, Indianapolis, IN, USA with ASD. e-mail: [email protected] © Springer Nature Switzerland AG 2019 R. D. Rieske (ed.), Handbook of Interdisciplinary Treatments for Autism Spectrum Disorder, Autism and Child Psychopathology Series, https://doi.org/10.1007/978-3-030-13027-5_7

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This chapter will briefly describe ABA-based interventions for children with ASD. ABA does not refer to a single treatment program but rather an empirically based behavioral technology. There are many ABA-based stand-alone interventions in addition to treatment packages or programs that incorporate multiple stand-alone interventions. This chapter serves as an introduction to both key stand-alone strategies and broader treatment packages. This chapter is not meant to serve as a primer or manual to begin implementing ABA or ABA-based interventions but rather as a reference for parents, teachers, and other providers to identify appropriate services for individuals with ASD.

 pplied Behavior Analysis (ABA) A Defined Broadly, ABA refers to the use of basic behavior change principles to change behavior that is important and socially relevant (Miltenberger, 2012). Whereas basic behavioral research examines the environmental variables that impact the behavior of animals and humans in laboratory settings, ABA represents the direct application of those basic laboratory discoveries to change the behavior of people in important and meaningful ways. Components or strategies of ABA are used in everyday life to teach, improve, or increase socially desirable behavior and to decrease undesirable behavior. B. F. Skinner, one of the first scientists credited with the identification of the principles of behavior change, pioneered basic behavior research (Moore, 2008). The field of behavioral sciences has, in turn, informed the direct application of ABA across the realms of mental illness; education and special education; rehabilitation; community psychology; clinical psychology; business, industry, and human services; self-management; child behavior management; prevention; sports performance; health-related behaviors; and gerontology (Miltenberger, 2012). The core principles of behavior analysis and ABA state that by examining and changing ele-

ments of an environment, behavior changes correspondingly. Events and variables surrounding a behavior are examined to identify what is causing behavior or, conversely, keeping a behavior from occurring. The behavior (B), its antecedents (A), and consequences (C), are collectively referred to as a three-term or ABC contingency (Pence, Roscoe, Bourret, & Ahearn, 2009). For example, when the consequence or outcome of a behavior is good or pleasurable, that behavior is likely to be repeated. When the consequence increases the likelihood of a behavior occurring again, the behavior has been reinforced. Conversely, when the consequence decreases the likelihood of a behavior occurring again, the behavior has been punished. This paradigm can be applied to a wide range of target goals and/or problem behaviors and is in turn a compelling treatment approach among children with ASD, a disorder with high levels of heterogeneity (Hu & Steinberg, 2009).

Stand-Alone ABA-Based Interventions There are many specific intervention strategies derived from principles of ABA.  These techniques harness the basic components of behavior modification and can be categorized into three groups depending on where they fall in the ABC model: antecedent, behavioral/instructional, and consequence strategies (Boutout & Hume, 2012). These strategies are supported by research demonstrating a wide range of positive outcomes. Although the strategies can help change the behavior of any person, the strategies described below have been found to be particularly useful for children with ASD.

Antecedent Strategies Antecedent strategies include interventions that take place before any behavior occurs. Specifically, these strategies target changes to the environment that help decrease or increase the likelihood that a behavior will occur.

Applied Behavior Analysis and Related Treatments

Behavioral Momentum  Behavioral momentum (Nevin, Mandell, & Atak, 1983) is an antecedent intervention that increases the likelihood of a behavior. When behavioral momentum is applied, the child is first told to do several low-­ effort tasks (e.g., “touch your nose”; “close your eyes”) before he is told to do something that he is less likely to do (e.g., “stand up”). It is key that those initial requests are high-probability requests, as behavioral momentum depends on compliance with these commands in the sequence. It is also important that a compliant response to each command be followed by a reinforcer. Research has demonstrated that behavioral momentum can help increase compliance to a variety of directions (e.g., come here, stand up, put your book away, get your shoes, etc.) as well as the time it takes to start and complete a task (e.g., Belfiore, Basile, & Lee, 2008; Mace et al., 1988; Romano & Roll, 2000). Behavioral momentum is supported by research in both home and school settings.

Choice  Incorporating choice into routines and behavioral and academic interventions has been demonstrated to have positive effects for children with disabilities, including ASD. Choosing which activity to complete has been shown to increase academic engagement and reduce disruptive behaviors, such as noncompliance and property destruction (e.g., Dunlap et  al., 1994) and other severe problem behaviors such as aggression, elopement, and self-injurious behavior in children with severe ASD (Dyer, Dunlap, & Winterling, 1990). Providing students choices within activities, such as where to work or which materials to use, may also increase engagement and decrease disruptive behavior (e.g., Rispoli et al., 2013). For example, in a study by Lough, Rice, and Lough (2012), offering choice was also found to increase the amount of time spent in an activity. Some studies have found that choice may influence rate of skill acquisition and accuracy of responding when students are allowed to choose which reinforcer they receive, although other studies have not found this effect (e.g., Elliott & Dillenburger, 2016; Newman,

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2002;

Environmental Modifications  Careful consideration and modification to a person’s environment can have an impact on his or her behavior. Environmental changes may include changes to the physical, social, and programmatic aspects of the environment (e.g., Davis & Fox, 1999; Nordquist & Twardosz, 1990). Although results from research have been mixed and more information is needed regarding the effects of different environmental modifications, there is some evidence to the impact of these interventions on behavior. For example, Rosenfield, Lambert, and Black (1985) found that students were found to have more on-task behavior and less off-task behavior and withdrawal when seated at desks that were arranged in circles compared to clusters and rows. Social interactions during play may be higher when the same number of children is in a small compared to a larger play area (e.g., Brown, Fox, & Brady, 1987). Careful playground design has been shown to increase the rate of group play and social interactions in children with ASD (e.g., Yuill, Strieth, Roake, Aspden, & Todd, 2007). Types of seating, such as therapy balls (e.g., Schilling & Schwartz, 2004), may increase academic engagement compared to typical classroom chairs in some children with ASD.

Errorless Learning  Errorless learning (Terrace, 1963) is a method of teaching that is designed to increase accurate responding and decrease inaccurate responding. Tasks are initially manipulated in such ways that the responder is highly likely to provide a correct response and support is later faded and the task becomes more difficult. Errorless learning has been used to help individuals more easily and quickly learn to identify sight words (e.g., Walsh & Lamberts, 1979), colors (e.g., Powers, Cheney, & Agostino, 1970), and letters (e.g., Egeland, 1975) from an array of options. Stimulus fading, in which the correct behavior or response is initially made clear (such as by highlighting the

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correct answer), is a c­ ommon instructional strategy that utilizes an errorless approach. Errorless approaches have also been utilized to increase the rate of compliance in children with ASD (e.g., Ducharme & Ng, 2012; Rames-LaPointe, Hixson, Niec, & Rhymer, 2014). For example, Ducharme and Ng (2012) found that the proportion of compliant responses increased up to 88% points after treatment.

Individual Interest  Individuals with ASD sometimes exhibit intense interests in certain topics, activities, materials, or toys. Although these restricted interests can be problematic and interventions often seek to reduce or eliminate restricted interests, they can also be effectively incorporated into interventions for children with ASD. In a large review of existing research, Gunn and Delafield-Butt (2016) found that including restricted interests in teaching and learning routines resulted in beneficial outcomes in “learning, communication, social engagement, or behavior or emotional well-being” (p.  416). There are many simple ways in which restricted interests can be incorporated into routines and interventions, such as providing books about restricted topics of interest (e.g., Mancil & Pearl, 2008) and arranging social interactions with peers that involve restricted interests. Although the benefits of including restricted interests generally outweigh any negative results, incorporating restricted interests has resulted in relatively minor unwanted outcomes, such as an increase in perseverative and inappropriate behaviors (Gunn & Delafield-Butt, 2016).

Priming  Priming is a method of preparation that includes previewing expected behavior (Boutout & Hume, 2012). This may include modeling, practicing, or rehearsing the target behavior or simply reviewing the next day’s schedule. Priming is intended to increase the likelihood of success in a variety of tasks or activities and has been demonstrated to be beneficial for individuals with ASD. For example, one method of priming that has been utilized for students with ASD

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is previewing academic activities. Such priming sessions may include familiarizing students with the materials that will be used in an activity, previewing the schedule or order of events in an activity, or preparing the student for the skills that will be taught. Academic priming has been utilized for children with ASD and found to increase academic responding and engagement and decrease problem behavior (e.g., Koegel, Koegel, Frea, & Green-Hopkins, 2003). Another method of priming is to observe other individuals successfully completing a target activity. For example, video modeling has been successfully utilized to increase independent toileting skills (e.g., Bainbridge & Myles, 1999; McLay, Carnett, van der Meer, & Lang, 2015), peer interaction and play skills (e.g., Sancho, Sidener, Reeve, & Sidener, 2010), and transitioning (Schreibman, Whalen, & Stahmer, 2000).

Time Delay  Time delay is used to teach correct responding in a variety of situations. The time delay procedure includes presenting an instruction (e.g., flashcard, verbal prompt) and immediately providing the correct response (Boutout & Hume, 2012). Eventually, after the individual has successfully repeated the correct response, the time between the instruction and giving the correct response is increased. Time delay has been shown to help teach individuals with ASD academic skills such as identifying sight words (e.g., Browder, Ahlgrim-Delzell, Spooner, Mims, & Baker, 2009; Swain, Lane, & Gast, 2015), communication skills (e.g., Carbone, Sweeney-­ Kerwin, Attanasio, & Kasper, 2010; Leung, 1994) and social skills (e.g., Liber, Frea, & Symon, 2008), and even swimming skills (e.g., Rogers, Hemmeter, & Wolery, 2010). In one study, Akmanoglu, Kurt, and Kapan (2015) used a time delay procedure to teach children with ASD how to respond to questions about personal information (e.g., “What grade are you in?”; “How old are you?”).

Visual Supports  Visual supports are a widely used strategy for assisting individuals with ASD

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that generally consist of visual representations of information. Visual supports are generally thought to help compensate for verbal language and communication deficits that are core deficits inherent with a diagnosis of ASD (e.g., Hodgdon, 1995). Visuals may depict the day’s schedule or routine, available activities such as during break or leisure times, step-by-step task instructions, rules, and behavioral expectations. Social stories are another type of visual support that uses pictures and images to depict more complex behaviors or expectations. For example, social stories were found to be effective in helping students engage in appropriate group-time behaviors and social behaviors (e.g., Crozier & Tincani, 2007), to increase compliance with transitions (e.g., Dettmer, Simpson, Myles, & Ganz, 2000; Dooley, Wilczenski, & Torem, 2001), decrease aggression (e.g., Dooley et al., 2001), and decrease the number of verbal or physical prompts (e.g., Dettmer et al., 2000).

Instructional and Behavioral Strategies Instructional or behavioral interventions are utilized to create or strengthen new skills. Many of these strategies have been developed for and utilized with children with ASD. Chaining  Chaining involves breaking a complex task down into relatively easy or short components. For example, tying shoes can be broken down into segments beginning with crossing the laces and ending with tightening the loops (e.g., Rayner, 2011). Each component is taught one at a time using verbal and visual prompts, modeling, hand-over-hand guidance, or video modeling. Chaining has been successfully used to teach children with ASD a variety of new and important skills, such as getting and preparing snacks independently (e.g., Ergenekon, Tekin-Iftar, Kapan, & Akmanoglu, 2014; Shrestha, Anderson, & Moore, 2013), language and communication skills (e.g., Albert, Carbone, Murray, Hagerty, & Sweeney-Kerwin, 2012), simple play and leisure skills (e.g., Ergenekon et al., 2014), and complex

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basketball skills (e.g., Lambert et  al., 2016), as well as task completion (e.g., Lalli, Casey, & Kates, 1995).

Discrete Trial Training  Discrete trial training (DTT) has been demonstrated to be effective in teaching individuals with ASD a great variety of skills in communication, adaptive, and social skills (e.g., Shillingsburg, Bowen, & Shapiro, 2014). DTT is a highly structured method for teaching new skills and consists of many opportunities, or trials, to learn and practice a specific skill. DTT is usually delivered in one-on-one settings with teachers who have been trained in the method. Each trial generally consists of a prompt or cue from the teacher, a response from the student, and a consequence. For example, a teacher who is helping a student learn to name or ask for a preferred play item may show the item to the student and provide a brief verbal cue; when the student names the item, he or she is rewarded with time with the item. DTT is fastpaced, with each trial lasting only a few seconds and the opportunity to conduct many trials in a brief amount of time. Depending on the need of the student and where she receives services, students with ASD may receive several minutes up to hours of DTT. DTT may be combined with strategies such as errorless learning or prompt fading to help the student learn the correct response.

Functional Communication Training  For children with language impairments, difficult behavior can sometimes be a means of communicating wants and needs. ABA and functional communication training (FCT) assumes that all behavior, including problematic behavior, is a means for obtaining preferred consequences (Iwata, Pace, Kalsher, Cowdery, & Cataldo, 1990). The goal of FCT is teach children a new, more appropriate behavior that results in the same preferred consequence but without problematic behavior. For example, if one assumes that a child who crumples up and throws a work sheet across the room is communicating, “this

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is too hard for me, I can’t do this,” the child can be taught an alternative that conveys the same message in a more socially appropriate manner. In FCT, communication does not always mean speaking or verbal behavior. Communication may also involve the use of sign language, physical movements, pointing to picture icons, or another form of assistive technology. In addition to teaching and increasing communication skills, FCT has been found to decrease the problem behavior (e.g., temper tantrums, aggression, SIB, property destruction) that, before implementation of FCT, was the means of communication (e.g., Durrand, 1991; Durrand, 1993). In one example, Wacker et al. (1990) found that, for one child, self-injury (e.g., hand-biting) often resulted in the presentation of preferred items. The researchers taught the child a method for requesting (e.g., signing) and consistently provided preferred items when he signed. After implementation of this FCT, requesting via signing increased and hand-biting decreased.

Incidental Teaching  In the day-to-day activities of an individual with ASD, there are many opportunities to create a learning trial; incidental teaching purposefully targets these naturalistic opportunities. Incidental teaching involves identifying teaching moments, or moments in which there are naturally occurring antecedents (e.g., a child desires a snack), opportunities to teach (e.g., prompt behavior or requesting snack), and consequences (e.g., child is given snack). For example, a child who reaches for a snack may be first required to do a number of things before obtaining that snack. If the child knows the name of the snack, he may be prompted to request the snack by naming it, using a full sentence directed toward the parent, or initiating joint attention. For children who struggle with communication, incidental teaching can dramatically increase the number of opportunities for them to learn and practice communication skills. Incidental teaching generally usually revolves around items the individual finds motivating such as preferred toys, activities, or foods.

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Incidental teaching was initially developed and used with typically developing preschool children (Hart & Risley, 1968) but has also been utilized with children with ASD.  Incidental teaching is often used to increase language and communication skills (e.g., Farmer-Dougan, 1994; Hsieh, Wilder, & Abellon, 2011; Kroeger & Nelson, 2006; McGee, Krantz, Mason, & McClannahan, 1983) and social skills (e.g., McGee, Almeida, Sulzer-Azaroff, & Feldman, 1992) of children with ASD. Because incidental teaching does not usually require much time or extra materials, teachers (e.g., Kroeger & Nelson, 2006), parents (e.g., Hsieh et  al., 2011; McGee et  al., 1983), paraprofessionals (e.g., Rispoli, Neely, Lang, & Ganz, 2011), and even peers (e.g., Farmer-Dougan, 1994; McGee et al., 1992) can be taught to use this strategy, increasing the breadth of implementation. Modeling  Modeling as an instructional strategy is utilized just about anywhere instruction occurs, and the model can be anyone including teachers, parents, peers, and videos. The individual can even model the target behavior himself to be viewed later in video. Modeling behavior has been used with individuals with ASD to teach a variety of behaviors including social communication skills, functional skills, and behavioral functioning (e.g., on-task engagement; Bellini & Akullian, 2007). In one example, Garcia, Dukes, Brady, Scott, and Wilson (2016) successfully used modeling to teach children with ASD six fire safety skills. The intervention included the experimenter modeling the verbal and physical behavior required for the appropriate skills before prompting the child to practice the behavior.

Prompts  A prompt is a stimulus that helps the learner respond or answer correctly. A prompt differs from other forms of error correction because a prompt comes before the response. A prompt may provide the complete correct response such as when a student is asked to name an apple and the parent provides the prompt, “apple.” A portion or part of the correct

Applied Behavior Analysis and Related Treatments

response may also be given such as giving the prompt, “aaaaa.” Prompts can be verbal, physical (e.g., hand-over-hand guidance), or visual (e.g., finger to lips to remind students to be quiet). It is recommended that the least-to-most principal is used when prompting which consists of using the least intrusive or least supportive mode of prompting that is needed. For example, saying “aaaa” is less supportive than saying “apple.” In one study, researchers used gestural (least prompt) or physical (most prompt) prompts to teach children with ASD to follow the gaze of the experimenter (Gunby, Rapp, Bottoni, Marchese, & Wu, 2017). If the child was unable to find the target item by following the experimenter’s gaze alone, the experimenter gave a gestural prompt (least supportive), then a physical prompt (most supportive) if needed.

Shaping  Shaping is a common strategy in ABA utilized to change or shape behavior to match a target behavior. Behavior is shaped by everyday life in numerous ways, with the most common example being language acquisition (Miltenberger, 2012). The speech of young children is shaped over time to resemble adult speech. Correspondingly, behavior is changed through shaping by reinforcing new approximations of behaviors. Shaping has been utilized in isolation but is more commonly combined with other strategies. Although parents, teachers, therapists, and interventionists have utilized shaping procedures most often to increase and improve the language and communication skills of children with ASD (e.g., Newman, Reinecke, & Ramos, 2009), shaping has also been utilized to change other behaviors, even to increase tolerance toward fearful stimuli (e.g., Ricciardi, Luiselli, & Camare, 2006). Nordahl et al. (2016) used shaping, combined with other behavioral strategies, to teach children with ASD to lie still during magnetic resonance imaging (MRI) procedures without sedation. This was accomplished by slowly increasing the duration of time in the MRI while lying very still.

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Task Analysis  A task analysis consists of a careful breakdown of all the components of a larger task. As mentioned above, tying shoes can be broken down into multiple small components beginning with “cross laces” and ending with “pull loops tight.” Task analysis can then combined with other antecedent, instructional, and consequence strategies to teach new skills. In one study, a task analysis was used to identify the steps of ordering food in a restaurant (Cheung, Schulze, Leaf, & Rudrud, 2016). This resulted in a step-by-step prompt that was visually displayed on smart phones and successfully used by children with ASD to independently order food in restaurants.

Consequence Strategies Interventions that include changing the environment after a behavior has occurred are called consequence strategies. Although antecedent interventions are also important for changing the frequency of behavior, consequences strategies are often used when trying to increase adaptive and prosocial behavior and reduce maladaptive behavior. Contingency Contracting  Contingency contracting involves an explicit contract or agreement about specific behavior(s) and specific reward(s). The contract usually states that should the individual complete specific target behaviors, or avoid undesirable behavior, she is provided the specific reward. Contingency contracts are often used by teachers and parents and may be informal such as spoken agreements or formalized by a contract that is printed and signed. For non-­ ASD individuals, contingency contracts have been utilized to target a variety of behaviors such as tardiness and disruptive behaviors (e.g., DeMartini-Scully, Bray, & Kehle, 2000), self-­ care (e.g., Allen & Kramer, 1990), and academics (e.g., Newstrom, McLaughlin, & Sweeney, 1999), and contingency contracts have also been demonstrated to be helpful for children with ASD.  In one study, Mruzek, Cohen, and Smith (2007) used contingency contracting with two

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Delayed Contingencies  Although a delay between behavior and reinforcer generally reduces the power of that reinforcer to increase behavior, immediate reinforcement is not always feasible. Therefore, it is often necessary that the delivery of reinforcers be delayed. Delayed reinforcement can be useful for a variety of target behaviors and has been supported in use with individuals with ASD.  For example, Dunlap, Koegel, Johnson, and O’Neil (1987) found that a delay in delivery of reinforcement or punishment of up to 5 min was effective in increasing on-task engagement of children with ASD.

Extinction  Extinction is a strategy used to reduce problematic or interfering behavior by eliminating or withdrawing the reinforcer that was maintaining the behavior. Extinction is a component of differential reinforcement (e.g., not reinforcing the inappropriate behavior). An example of extinction might be when “Jake” was not called on if he called out the teacher’s name or when an individual is not allowed to escape from chores because of disruptive behaviors. Extinction may also be used as an individual intervention strategy or in combination with other behavioral strategies. In one study, Bui, Moore, and Anderson (2013) used extinction plus reinforcement with children with ASD to increase their acceptance of food and decrease food refusal. The extinction procedure included non-­ removal of the food item (i.e., the food was not removed if the child refused the food item) and physical guidance if needed.

Differential Reinforcement  Although there are many forms of differential reinforcement, the key components include an inappropriate behavior not being reinforced and instead reinforcing a different behavior. Probably the most common form of differential reinforcement is differential reinforcement of an alternative (DRA), more appropriate behavior. An example of DRA could be when a teacher only calls on “Jake” (the reinforcer) when he raises his hand (appropriate behavior) and not when he calls out her name (inappropriate behavior). Differential reinforcement has been utilized with individuals with ASD to decrease a variety of problematic behavior such as stereotypic or repetitive scripting (e.g., Rozenblat, Brown, Brown, Reeve, & Reeve, 2009; SillaZaleski & Vesloski, 2010) and self-­injurious behavior (SIB; e.g., Shimoyama & Sonoyama, 2010) and to increase behaviors such as eye contact (e.g., Jeffries, Crosland, & Miltenberger, 2016) and communication behaviors (e.g., Drasgow, Halle, & Ostrosky, 1998). Differential reinforcement is also an important component of functional communication training (FCT).

Overcorrection  Overcorrection is a learning or teaching procedure that consists of requiring the learner to repair an environment or situation beyond the original state. Overcorrection is intended to reduce unwanted behavior and increase the adaptive behavior. For example, a student who swipes his materials off his desk may be required to pick up not only his materials but any other materials or trash that is on the floor. Another form of overcorrection is positive practice in which the target skill is repeated several times following an error. Overcorrection has been utilized in a variety of ways to treat individuals with ASD including reducing stereotypic vocalizations (e.g., Anderson & Le, 2011) and behavior (e.g., Maag, Rutherford, Wolchik, & Parks, 1986); teaching signs (e.g., Hinerman, Jenson, Walker, & Petersen, 1982); and as components in treatment packages to reduce aggressive and destructive behaviors (e.g., Foxx & Meindl, 2007). In the Anderson and Le (2011) study, overcorrection was successfully implemented to decrease the disruptive vocal stereotypy for a child with ASD after differential reinforcement, extinction, and response cost procedures had failed. The overcorrection p­ rocedures

children with ASD and ADHD to increase compliance with classroom rules. Implementation included reviewing the contract each morning, the child choosing the reinforcer, and signing the contract.

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included making a “shush” gesture (i.e., raising index finger to his lips) 100 times.

Response Interruption  Response interruption involves blocking or interrupting an individual’s attempt to engage in a behavior (Azrin, Besalel, Jamner, & Caputo, 1988). Response interruption is also known as response blocking. For example, response interruption and redirection (described below) has been used to reduce vocal stereotypy in children with ASD by telling them to say something (e.g., “say boy”; e.g., Ahearn, Clark, MacDonald, & Chung, 2007; Shawler & Miguel, 2015) after the first occurrence of the vocal stereotypy. Response interruption has also been used, in combination with other strategies, to treat pica (e.g., Hagopian, Gonzalez, Rivet, Triggs, & Clark, 2011), self-injurious behavior (e.g., Azrin et  al., 1988), and other behavior problems.

Redirection  Redirection includes prompting an individual to engage in an alternative behavior in place of a problematic behavior (Lydon, Healy, O’Reilly, & McCoy, 2013). Students who are off-­ task in the classroom are of redirected back to their work. Redirection may also include response interruption such as in the example described above. Redirection often helps decrease problematic behavior and increase appropriate behavior. For example, Duker and Schaapveld (1996) used redirection as part of a treatment package which was found to decrease stereotypic behavior and increase on-task behavior in a classroom setting.

Token Economy  A token economy is a program in which individuals earn tokens for engaging in target behaviors (Christophersen, Arnold, Hill, & Quilitch, 1972). The tokens are then exchangeable for another object, activity, and privilege. Token economies are flexible in that the target behaviors can include any appropriate prosocial or adaptive skill that is important for the individual or group. For example, tokens could be awarded for completing school work, doing

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chores, attending therapy meetings, eating, toileting, etc. The tokens could be a variety of tangible (e.g., poker chips, pennies, marbles, stars) or intangible (e.g., points) items. Finally, the tokens can be exchangeable for any number of backup reinforcers such as desserts, TV time, or money. Token economies generally focus on awarding tokens for target behaviors and avoid, at least initially, removing tokens for bad behavior. However, even though this strategy is primarily about increasing desirable behavior, undesirable behavior often decreases as desirable behavior increases. For example, Carnett et  al. (2014) found that, not only was a token economy effective for increasing the rate of on-task academic behavior for a child with ASD, the frequency of his challenging behavior (e.g., screaming, falling to floor) decreased as well.

 n Introduction to ABA-Based Early A Intervention Models In response to the increased prevalence of ASD, as well as parent and stakeholder demand for high-quality clinical services, several comprehensive, theoretically grounded interventions have been developed for young children with ASD (Eldevik et al., 2009; Odom, Boyd, Hall, & Hume, 2010). These comprehensive ABA-based intervention packages harness the additive benefits of behavioral techniques and draw from developmental and educational theory to varying degrees (Howlin, Magiati, & Charman, 2009). They also vary by intended setting, with some designed for the classroom, others within a controlled clinic environment, and yet others that are designed to be implemented flexibly across settings (Corsello, 2005). Practitioners may select from focused intervention packages, which are designed to address target behaviors over a short period, or comprehensive treatment models, which are designed to have a broad developmental impact on the core deficits of ASD (Odom et al., 2010). Across the wide range of ABA-based programs available, there are an expected set of core features, including focus on early childhood

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intervention (beginning at age 3), intensive programming (20–40  h per week), individualized treatment goals, incorporation of multiple ABA-­ based procedures, one-to-one treatment format with gradual transition to group settings, developmentally informed treatment goals, parent training, and generalization of new skills to other settings (Corsello, 2005; Lovaas, 1987). Interventions for ASD based on ABA techniques are well-represented in the literature and are broadly demonstrated to be effective in reducing symptom frequency and increasing adaptive skills (Foxx & Meindl, 2007; Schreibman et al., 2015; Smith & Iadarola, 2015). In most cases, ABA is the only therapy approach recognized by funding agencies and legislators to effectively treat core ASD symptoms and aberrant behaviors (Foxx, 2008; Odom et al., 2010; Roane, Fisher, & Carr, 2016). Although some studies have revealed no differences between treatment and control (or treatment-­as-usual) groups (Kovshoff, Hastings, & Remington, 2011; Magiati, Charman, & Howlin, 2007), the overwhelming consensus of well-designed randomized controlled trials and meta-analyses of early intervention programs supports ABA programming for young children with ASD (Foxx, 2008; Reichow, 2012; Smith & Iadarola, 2015). For example, one meta-analysis of 22 clinical trials examining comprehensive ABA for young children with ASD found that this intervention yielded medium-to-large effects in the domains of intellectual functioning, adaptive skills, language development, and social functioning (Virués-Ortega, 2010). While well-­ established ASD intervention programs include ABA-based, empirically supported individual strategies, there are substantial differences in the amount of evidence across the different intervention programs. The UCLA Young Autism Project (Lovaas et al., 1981) has consistently been identified as a specific program with the strongest evidence for efficacy (Rogers & Vismara, 2008). Furthermore, efforts have been made to examine the child-level and treatment-level variables that moderate treatment effectiveness. The most robust finding across randomized controlled trials

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was that higher pretreatment cognitive ability (as measured by IQ) predicts better treatment outcome (Eldevik et al., 2009). Another study found that the more socially mediated reinforcers and fewer stereotypic behaviors explained 50% of the variability of intervention gains (Klintwall & Eikeseth, 2012). Other possible moderating factors include younger age and higher social and object interest (Smith & Iadarola, 2015). Much less is known about demographic influences on treatment outcome, such as race, ethnicity, and socioeconomic status. Regarding treatment-level factors, increased treatment intensity has predicted greater changes in IQ and adaptive behaviors, and inclusion of a parent training component may predict improvements in child adaptive behaviors (Makrygianni & Reed, 2010). Empirical evidence for these moderating factors remains limited. Since the emergence of clinical trials for ABA in the early 1960s, efforts have been made to fine-­ tune the effectiveness of this approach, especially regarding long-term outcomes and generalization of learned skills (Smith, McAdam, & Napolitano, 2007). Over time, developmentally sensitive and naturalistic approaches, grounded in developmental theory, have been integrated with ABA techniques with promising effects. That is, complementary techniques such as natural rewards, child-preferred materials, and natural treatment contexts were conceptualized to address core issues among children with ASD, including engagement, motivation, joint attention, and functional communication (Schreibman et  al., 2015). Indeed, ABA programs with naturalistic components have yielded more natural language, increased habituation to everyday distractions, increased social development, and improved generalization of skills (McGee & Daly, 2007). The following overview represents a selection of comprehensive and focused treatment models, all of which vary in theoretical underpinning, reported efficacy, replication, and clarity of procedures (Odom et al., 2010). Treatments are discussed both by name as well as relative level of efficacy and methodological rigor, consistent with the most updated JCCAP guidelines of classification (Smith & Iadarola, 2015). The models

Applied Behavior Analysis and Related Treatments

described serve as an attempt to spotlight the most validated approaches, as well as to highlight variability in underlying theory and practice elements.

Treatment Models for ASD UCLA Young Autism Project/Lovaas Method  The UCLA model of intervention, often referred to as the Lovaas method and early intensive behavioral intervention (EIBI; Lovaas et  al., 1981), is one of the first comprehensive treatment programs for young children with ASD, and it continues to be one of the most popular and requested by caregivers and other stakeholders (Reichow, 2012). This model emphasizes intervention beginning at age 3 or younger, with one-on-one, individualized instruction up to 40 h per week, with a total duration of about 3 years (Smith & Lovaas, 1998). Furthermore, parents serve an integral role on their child’s intervention teams. Treatment consists of several “phases” that emphasize different behavior analytic techniques and settings. The primary goals of the UCLA model are to maximize success and minimize failure and frustration due to failure to communicate (Smith & Lovaas, 1998). During the first several phases of the UCLA model, treatment largely takes place in the child’s home. Clear instructional sequences and DTT procedures are utilized to give predictable structure to the learning situation and provide multiple learning opportunities (Reichow, Barton, Boyd, & Hume, 2012). Although treatment goals are individualized, nonverbal and verbal imitation, toy play, self-help skills, and receptive language skills are often emphasized in these initial phases (Smith & Lovaas, 1998). Supplementary treatment components, such as a picture exchange communication system (PECS), are utilized if early success is limited. As children transition to the latter phases of the program, naturalistic instruction techniques like those described below in pivotal response treatment (PRT) are utilized to ensure generalization (Corsello, 2005). That is, skills are practiced across situations and with dif-

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ferent people, including typical peers (Reichow et al., 2012). Common goals during these phases include increasing expressive and early abstract language, interactive play, working independently, and gradual introduction to mainstream classroom settings. Termination typically involves a consultation with parents and the intervention team to determine the most appropriate placement for each child (e.g., mainstream preschool or kindergarten; additional home instruction). As described above, the UCLA model has consistently been highlighted as an effective comprehensive treatment package for treating those with ASD (Smith & Iadarola, 2015), given the quality and quantity of empirical support available (Sallows & Graupner, 2005). However, it should be noted that compared to the original effectiveness study (Lovaas, 1987), replication studies (e.g., Smith, Groen, & Wynn, 2000) have not found such drastic differences between experimental and control groups on variables such as IQ. Furthermore, the original study methodology was limited by nonrandom assignment to groups, oversampling higher-functioning children with ASD, group differences in sex ratio, and failure to measure treatment fidelity (Gresham & MacMillan, 1998). Furthermore, some researchers found the developers’ claim that the UCLA program could restore children to “normal functioning” problematic (Schopler, Short, & Mesibov, 1989). Pivotal Response Training (PRT)  This comprehensive treatment approach attempted to improve the time and labor-intensive nature of early interventions for ASD (Koegel, Koegel, Vernon, & Brookman-Frazee, 2010). Specifically, PRT posits that if core areas in functioning are targeted for intervention, the resulting changes will set the context for widespread changes in other areas. The pivotal areas targeted in this intervention include motivation to respond to environmental and social stimuli, self-initiation (e.g., joint attention, question asking), and socialization (Koegel et al., 2010). The specific techniques utilized include within-

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stimulus prompting, in which the relevant components of a stimulus are exaggerated to attract attention; ­following the child’s lead and offering choices; placing an emphasis on natural rewards; reinforcing attempts to respond or socialize; and interspersing maintenance trials. This intervention can be flexibly implemented across settings, allowing the child to take advantage of natural learning opportunities that arise throughout the day. The primary goal of PRT is to decrease the child’s need for adult support and to reintegrate that child into the natural environment (Koegel et  al., 2010). Empirical studies examining PRT demonstrate that this approach is effective in increasing social communication skills (Smith & Iadarola, 2015), as well as decreasing repetitive and disruptive behaviors (Koegel et  al., 2010). Currently, PRT is designated as an “established” treatment package for ASD (National Autism Center, 2015).

Learning Experiences: An Alternative Program for Preschoolers and Parents (LEAP)  LEAP is a classroom-based comprehensive ABA program (Harris & Handleman, 1994) that is most notable for its emphasis on teaching children with ASD along with their typical peers in a small, structured classroom setting. The program incorporates both behavior analytic techniques and incidental teaching by teachers and peer-mediated techniques that increase social interactions, and its learning experiences often occur in the context of peer-led play opportunities. The primary goal of the LEAP program is to reduce the frequency and severity of ASD symptoms that hinder their learning opportunities (Boyd et al., 2014). One large-scale cluster RCT comparing LEAP compared to treatment as usual found the LEAP resulted in large, positive effects on developmental quotient, language, and social interaction, as well as moderate reductions in ASD symptoms (Strain & Bovey, 2011). However, due to mixed evidence of efficacy across studies, LEAP is currently considered a “possibly efficacious” treatment program for ASD (Smith & Iadarola, 2015).

H. R. Fisher et al.

Early Start Denver Model (ESDM)  The ESDM is a comprehensive behavioral intervention designed for infants as young as 12 months that integrates behavior analytic techniques with developmental and relationship-based approaches (Rogers & Dawson, 2010). This program occurs either within the toddler’s natural environment or a clinic setting, with trained therapists and parents serving as the interventionists. Participants receive both individualized and small group therapy through this approach. Teaching principles are embedded in play and natural routines that are intended to address multiple developmental objectives. Objectives include increasing positive affect, pragmatic and reciprocal communication, and flexible play skills, with the goal of increasing children’s attunement to their social environment. There is emerging evidence on the efficacy of ESDM among young children with ASD, as evidenced by an RCT that demonstrated medium to large positive effects of the intervention on developmental quotient and adaptive behavior. The intervention only yielded small, nonsignificant improvements in ASD symptoms (Dawson et al., 2010). ESDM may also serve to reduce maladaptive behaviors commonly observed among children with ASD (Fulton, Eapen, Črnčec, Walter, & Rogers, 2014). Taken together, ESDM is currently regarded as a “possibly efficacious” intervention package (Smith & Iadarola, 2015). Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH)  This comprehensive intervention is rooted in several theoretical frameworks, including social learning, developmental, and behavioral, and is considered an idiosyncratic model (Odom et  al., 2010). The TEACCH model emphasizes structured teaching experiences and a close working relationship between caregivers and practitioners (Marcus, Lansing, Andrews, & Schopler, 1978). Specifically, the learning environment is organized in ways that optimize learning and minimize frustration and utilize visual support. This program places a strong emphasis on skills that

Applied Behavior Analysis and Related Treatments

are important for future independence, as it conceptualizes ASD as a lifelong condition. Although TEACCH has been implemented across settings, it typically occurs within a selfcontained classroom (Boyd et al., 2014). Empirical support for TEACCH continues to be somewhat limited, despite its existence for over 40 years. The studies conducted on TEACCH have varied in the treatment components utilized as well as the study design, which have made the ability to draw conclusions about intervention efficacy difficult. However, a recent meta-­analysis found that the intervention yielded moderate to large gains in social behavior and decreases in aberrant behavior, as well as negligible-­to-small gains in adaptive behaviors (Virués-Ortega, Julio, & Pastor-Barriuso, 2013). Interestingly, the benefits of this intervention appear to increase with age, with adults experiencing the greatest benefit. Parent Training  Active involvement of parents and caregivers was a component of all the described ABA-based treatment packages and is emerging as an important driver of observed outcomes (Strauss et  al., 2012). Focused parent training has also been evaluated as a stand-alone intervention that is both cost-effective and directly relevant to the behaviors parents often report as most challenging, such as communication difficulties and tantrum behaviors (Smith & Iadarola, 2015). These interventions are often adapted from those originally intended to be delivered by a teacher or paraprofessional. The primary benefit of parent training interventions is increased generalization and maintenance of acquired skills in a natural environment (Strauss et al., 2012).

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effects of parent training on child communication and minimal effects on ASD symptoms (Green et  al., 2010). As such, stand-alone ABA-based parent interventions are considered “possibly efficacious” (Smith & Iadarola, 2015). Efforts have been made to develop and evaluate parent training programs with both ABA and developmental components, but the evidence has been limited, resulting in an “experimental” designation of such programs (Smith & Iadarola, 2015). Interestingly, the class of parent training programs that has the strongest empirical grounding (and a corresponding “probably efficacious” designation) is those rooted exclusively in developmental processes (e.g., Floortime; Greenspan & Wieder, 1997). This finding is compelling, given limited scientific evidence for play-based interventions for children with ASD (Foxx, 2008). Nevertheless, efforts to expand access to intervention services should consider non-ABA parent training as a complementary approach to ABA-based child intervention if it is emergent as the most efficacious approach available.

Limitations and Future Directions

As described above, while some ABA-based interventions are vetted with high-quality randomized controlled trials (Foxx, 2008), many study designs and meta-analyses do not meet the minimum standards of intervention methodology (National Research Council, 2001; Reichow, 2012). Furthermore, researchers often fail to include fidelity data (Howlin et  al., 2009), and treatment efficacy is difficult to evaluate across studies. Such variability in methodological rigor results in professional and layperson disagreement regarding the optimal treatment for children Research examining the effectiveness of with ASD (Howlin et al., 2009). ABA-based parent training programs has been Furthermore, from a treatment perspective, promising, with one RCT comparing parent-­ comprehensive interventions require significant implemented PRT with a psychoeducational con- family investment and interventionist training, trol group (Hardan et  al., 2015) and finding and they present significant financial burden to improvements in the treatment group across mea- stakeholders. As such, program developers should sures of spoken language and global social com- devote time to ongoing development of focused munication functioning. Other controlled trials ABA treatment programs and brief p­ arent interhave yielded mixed findings, with moderate ventions that approach the efficacy of comprehen-

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sive programs. Furthermore, efficacy research should prioritize outcomes generated by parents, providers, and other stakeholders. This call for stakeholder involvement in research is consistent with the goals of Patient Centered Outcomes Research (PCOR), which may incrementally improve intervention delivery and outcomes. Nevertheless, ABA-based interventions continue to represent the first-line treatment option for children with ASD.  These interventions should include an intensive, comprehensive, and individualized treatment protocol, skilled therapists or paraprofessionals delivering the intervention, and strong parental involvement (Reichow, 2012). There is continuing demand for high-­ quality, evidence-based intervention among this population, given continuing demand with growing prevalence rates (Jacobson, 2000), and it is imperative that information about these treatments continue to be disseminated in a clear and informative manner to parents, professionals, and other stakeholders.

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Interdisciplinary Treatment for Pediatric Feeding Disorders Cy Nadler, Laura Slosky, Christina Low Kapalu, and Brenda Sitzmann

Autism and Feeding Disorders From Leo Kanner’s earliest case reports of children with distinct social/communication and behavioral differences (Kanner, 1943), feeding difficulties have remained both a common and problematic feature for many children with autism spectrum disorder (ASD). This should not be surprising, given that the current diagnostic criteria for ASD specifically reference the possibility of significant behavioral inflexibility and C. Nadler (*) Division of Developmental and Behavioral Sciences, Children’s Mercy Kansas City, Kansas City, MO, USA Department of Pediatrics, University of Missouri – Kansas City School of Medicine, Kansas City, MO, USA e-mail: [email protected] L. Slosky · C. Low Kapalu Division of Developmental and Behavioral Sciences, Children’s Mercy Kansas City, Kansas City, MO, USA Department of Pediatrics, University of Missouri – Kansas City School of Medicine, Kansas City, MO, USA Division of Gastroenterology, Hepatology, and Nutrition, Children’s Mercy Kansas City, Kansas City, MO, USA e-mail: [email protected] B. Sitzmann Department of Hearing and Speech, Children’s Mercy Kansas City, Kansas City, MO, USA

sensory sensitivities (APA, 2013). Moreover, the core differences in social-emotional reciprocity that define ASD (often evidenced as reduced give-and-take in social interchanges, poor sharing and imitation, etc.) seem likely to disrupt feeding processes, especially when considering how caregivers and very young children typically interact at mealtimes. Estimates vary widely, but up to 89% of children with ASD have some type of feeding problem (Cornish, 2002). As common as other psychiatric and medical comorbidities are for children with ASD (Mannion & Leader, 2013), feeding problems are arguably the most common co-occurring condition for this clinical population. Difficulties with feeding can take many forms. For children with ASD, food selectivity (i.e., accepting a very limited range of foods, refusing specific foods, and/or excessively favoring specific foods) is the most common form of feeding difficulty (Bandini et  al., 2010; Hubbard, Anderson, Curtin, Must, & Bandini, 2014; Marí-­ Bauset, Zazpe, Mari-Sanchis, Llopis-González, & Morales-Suárez-Varela, 2014). While individual variation is substantial, selective eaters tend to favor carbohydrates and eschew fruits and vegetables (Williams, Gibbons, & Schreck, 2005). These food intake patterns put children at high risk for nutritional deficiencies that can have significant health implications (Sharp et al., 2013). Feeding problems that often co-occur or contribute to food selectivity include problematic behav-

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iors at mealtime like aggression and self-injury (Matson & Fodstad, 2009), oral-motor development problems that can make self-feeding, chewing, or swallowing difficult (Brisson, ­ Warreyn, Serres, Foussier, & Adrien-Louis, 2012; Schreck & Williams, 2006; Schwarz, Corredor, Fisher-­Medina, Cohen, & Rabinowitz, 2001), and gastrointestinal problems where ingesting food is associated with physical pain (Buie et al., 2010). Taken together, pediatric feeding problems become clinically relevant when any combination of these developmental, behavioral, and medical factors result in a child ingesting insufficient quantity and/or quality of food, with resulting malnutrition, poor weight gain (e.g., failure to thrive), and/or weight loss. While classification as a “feeding problem” (as opposed to “normal” picky eating) is dependent on perception of clinical impact and health risk (see Laud, Girolami, Boscoe, & Gulotta, 2009), efforts have been made both to differentiate typical variation from clinical disorder and to enhance the specificity of diagnostic categories for feeding and eating disorders (Call, Walsh, & Attia, 2013). Per the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5; APA, 2013), a diagnosis of avoidant/restrictive food intake disorder (ARFID) requires “persistent failure to meet appropriate nutritional and/or energy needs” that is not explained by a lack of food availability, associated cultural practice, or concurrent medical condition or mental disorder (including anorexia nervosa or bulimia nervosa; p. 334). Children who do not meet ARFID diagnostic criteria may still have clinically significant feeding problems and might receive a diagnosis of unspecified feeding disorder or another clinical descriptor such as oropharyngeal dysphagia or simply “feeding problems.” A 2013 meta-analysis found that children with ASD are over five times more likely than typically developing children to have problems with feeding that require treatment (Sharp et  al., 2013). For this reason, practitioners engaged in the clinical care of children with ASD and their families should have a baseline familiarity with feeding problems, including their assessment and

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treatment. Furthermore, practitioners who engage in clinical work around feeding for children with ASD (as well as the caregivers of these children) must be aware of the interdisciplinary approach demanded by feeding processes that intersect physiological, biological, behavioral, psychological, and developmental domains. No profession “owns” the management of feeding disorders for children with ASD, in part by design: as research on the assessment and treatment of feeding problems has advanced over the last decade, interdisciplinary approaches continue to emerge as the preferred clinical practice modality (McComish et al., 2016; Sharp, Jaquess, Morton, & Herzinger, 2010; Sharp, Volkert, Scahill, McCracken, & McElhanon, 2017; Silverman, 2010). Additionally, resolution of the feeding problem often requires attention to other associated issues like general behavioral compliance and parenting skills, as well as broader family system considerations that cannot be easily resolved without a team approach. Because of the diverse skill sets required for best outcomes, this chapter will outline the recommended components for interdisciplinary assessment and treatment of feeding disorders for children with ASD, including what disciplines are represented and how they interact, evidence-­ based assessment, as well as the treatment components that team members use and extend to parents and caregivers. We close by placing interdisciplinary treatment of feeding disorders for children with ASD in context, assessing the evidence base, and discussing co-occurring issues that are often considered during the course of treatment for feeding problems.

Interdisciplinary Feeding Teams Rationale for Interdisciplinary Care Most feeding problems are multifactorial in nature (Silverman & Tarbell, 2017), and even the same factors can impact the acquisition of age-­ appropriate feeding practices in different ways (Silverman, 2010). Challenges often arise from medical and developmental complexities, leading

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to limited exposure to novel foods. Over time, this can limit skill development. Delayed skill development and pain associated with feeding can lead to problem behaviors aimed at avoiding oral intake. This combination of factors often evolves into a complex challenge that requires a multidisciplinary approach to assessment and intervention. Such an approach allows providers to tackle the variety of components contributing to feeding challenges. As a result, feeding teams are often comprised of a medical provider, a psychology provider, speech-language pathology, nutrition, occupational therapy, and other specialty areas as needed (Burklow, Phelps, Schultz, McConnell, & Rudolph, 1998; Fischer & Silverman, 2007).

Psychology and Behavioral Health A pediatric psychologist is often an integral part of a multidisciplinary feeding team. The role of the psychologist is to provide a behavioral perspective on the child’s feeding challenges. The psychologist will also assess for comorbid behavioral or psychiatric conditions that may be impacting feeding and provide behavioral intervention or referrals as appropriate (Silverman & Tarbell, 2017). Up to 85% of feeding disorders have mixed etiologies that include a behavioral component (Burklow et al., 1998). Often, a history of aversive experiences related to feeding has contributed to a learned avoidance of oral feeding in general or specific foods and/or negative feeding behaviors that are inadvertently reinforced by caregivers. Challenges related to missed feeding milestones (e.g., tolerance of texture progression with purees) may also be assessed by the pediatric psychologist. These areas are common targets for behavioral treatment recommendations on the multidisciplinary team. At times, interventionists are behavioral health providers other than psychologists such as board-certified behavior analysts (BCBAs). These providers have specialty training in feeding approaches derived from the principles of applied behavior analysis (ABA), the subfield of psychology focused on the science of learning

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and behavior change. Highly structured ABA treatment models have a strong evidence base for teaching skills and managing problem behaviors for children with ASD (Ivy & Schreck, 2016; Makrygianni & Reed, 2010), including in the feeding arena.

Occupational Therapy As a member of a multidisciplinary team, occupational therapists (OTs) provide a unique skill set to assist the child with meeting their treatment goals. Challenges related to muscle tone are common in children with ASD (Ming, Brimacombe, & Wagner, 2007). Given these concerns, adequate support is often needed to facilitate safety with swallowing and optimal mealtime engagement. The team OT can advise on special seating devices and adaptations to support these needs. The occupational therapist is also able to advise the family on adaptive feeding tools such as special spoons to allow the child to be successful within the context of motor limitations. In collaboration with the team’s speech-language pathologist, many OTs will also assess the child’s oral-motor skill level. Given the unique sensory needs of this population, an OT is able to address sensory processing difficulties that may contribute to ongoing feeding challenges.

Speech-Language Pathology As a member of a multidisciplinary feeding team, the speech-language pathologist (SLP) offers advanced knowledge in the anatomy and physiology of the oral, pharyngeal, and esophageal phases of feeding and swallowing (American Speech-Language-Hearing Association, 2002). Working with other team members, SLPs are involved in identifying underlying medical concerns such as aspiration and oral-motor feeding skill deficits. SLPs also guide the implementation and interpretation of evaluation of feeding and swallowing, including the determination that oral intake of food is actually safe for the child before proceeding with feeding therapy. A speech-­

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language pathologist is also involved in treating functional feeding/swallowing issues, as well as behavioral concerns.

Nutrition and Dietetics Nutritionists and dieticians play a key role in managing oral and non-oral feedings to ensure that the child’s nutritional needs are met. Good nutrition with adequate weight gain and physical growth is the goal of feeding therapy but also the foundation for what variables must be considered when initiating treatment. The child must have adequate energy stores in order to develop new skills and habits, and supplemental nutrition may be needed to achieve this milestone. As member of the multidisciplinary team, nutritionists and dieticians work closely with team members and caregivers to assess and monitor weight gain and growth, develop a nutritional plan, and provide education to ensure the nutrition plan is implemented properly. Caloric intake, vitamin and mineral needs, and fluid intake needs should be determined by a skilled dietician in concert with recognized growth and nutrition standards, which might include guidelines from the World Health Organization or the Centers for Disease Control and Prevention (De Onis, Garza, Onyango, & Borghi, 2007).

Physical Health The primary care medical provider is often on the front lines when it comes to identifying and addressing feeding-related concerns in children with ASD. Unfortunately, improvement for children with developmental and medical complexities is unlikely without referral for specialty care. Physicians directly involved in interdisciplinary feeding care can include developmental pediatricians, gastroenterologists, otolaryngologists, and dentists, as well as nursing/allied health colleagues. These providers evaluate the child for underlying structural (physiological) issues and for pain that could be contributing to feeding difficulties. Depending on the child’s unique needs,

other specialty areas may be brought into the care team. It is important that physicians are able to rule out any underlying painful process (e.g., eosinophilic esophagitis or aspiration) prior to initiating feeding therapy to prevent any further negative associations with feeding. Children with ASD may not be able to verbally communicate that they are in pain, so attention must be paid to their behavior as it may be the only clue that a painful process is occurring. If the care team is not able to resolve this painful process prior to feeding therapy services, the likelihood of achieving and maintaining treatment gains is significantly reduced (Carr & Owen-DeSchryver, 2007; Carr & Smith, 1995). Physicians and their medical care teams will then monitor and manage ongoing needs throughout feeding treatment.

Social Work Given the level of complexity involved in the care of children with ASD struggling with feeding challenges, social work support can be an invaluable resource. Food insecurity can play a contributory role in the maintenance of feeding challenges (Kersten & Bennett, 2012), and this is often not immediately evident to care providers given hesitance to explore this issue or a family’s reluctance to ask for assistance. In addition, challenges related to food insecurity can manifest in a number of ways. While families may feel that they are able to provide adequate volumes of food for their children, variety may suffer as they are having to rely on the most affordable food items, which may be less nutrient dense or nonspecific to their child’s dietary needs. This challenge can significantly impact the family’s ability to provide more expensive food options such as fresh fruits and vegetables. In addition, many families may be reluctant to purchase a food item that their child will likely not eat or a large portion of will have to be discarded due to limited resources. Supplementing the family food budget along with an exploration of other options (e.g., food pantry, farmer’s market partnerships with Supplemental Nutrition Assistance Program [SNAP] funding) can often alleviate stress related to these con-

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cerns. Social workers are uniquely equipped to connect families with these resources. In addition, families are typically juggling a variety of care providers and a level of medical complexity that is often overwhelming. Insurance coverage may serve as an additional layer of stress for already taxed families. Social workers can help navigate these complex systems. Transportation to and from appointments is often a barrier to accessing care and consistently attending treatment sessions. Social workers can assist in locating transportation resources, setting up these services, and ensuring that families are able to make scheduled appointments. Finally, families may be in need of additional resources to help parents and caregivers function in their roles, and social workers can help connect them to appropriate mental health and other community resources.

Team Variations Many programs that offer team-based care also offer varying levels of intervention to meet the individual needs of children and families. Typically, the child will receive an evaluation from multiple disciplines, either sequentially (e.g., multidisciplinary) or in an integrated fashion (e.g., interdisciplinary). During this process, recommendations from all perspectives will be made regarding intervention services. Outpatient therapy services, along with home programming, are typically first-line recommendations. Frequency of service delivery varies on the need of the child, although weekly therapy is common. Children with ASD are likely to require a higher level of care in order to make optimal progress in feeding therapy due to the need for greater repetition when learning new skills. As a result, some programs offer more intensive service delivery models, which may also be accessed by families who have not been successful in outpatient therapy. Programs may offer day treatment or inpatient services. Day patient treatment programs often last between 2 and 8 weeks in duration, with multiple intervention sessions scheduled each day (i.e., at normal mealtimes and snack times). The

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family spends each day at the treatment facility, returning home or to temporary housing outside of the treatment facility at night. Each child has targeted treatment goals during admissions and will typically be followed on an outpatient basis following discharge. Intensive inpatient programs are often shorter in duration, approximately 2 weeks, although the child is admitted to the hospital during this time. Weaning tube feeds is a common primary focus of these intensive inpatient admissions.

Team Location Location of feeding teams can vary by setting and institution. Children’s hospitals or academic medical centers often offer the resources needed to sustain interdisciplinary teams. Programmatic location of feeding teams often depends on the discipline of the clinic’s director. For example, programs designed to work with more medically complex children may be run by a gastroenterologists, while programs that focus on children with developmental disabilities may be headed by a developmental pediatrician or psychologist. Some intensive programs are located within centers dedicated to ASD services or ABA specialty care, often integrating feeding goals into a broader treatment plan that includes other behavioral, communication, and adaptive skill goals. In most cases, regional proximity will be the determining factor in what feeding service a family will seek. The feeding team is tasked with the responsibility of assessing each child’s needs to ensure that the appropriate type and intensity of treatment can be provided.

Interdisciplinary Evaluation of Feeding Disorders While variation will absolutely occur across settings and providers, any treatment for feeding disorders in children with ASD will begin with an evaluation of the many factors influencing the problem, with an eye toward informing development of an intervention plan.

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Medical Evaluation Physician team members will review the child’s personal and medical family history and synthesize opinions from specialists as they relate to the child’s feeding challenges (Kirby & Noel, 2007). A primary focus of the medical assessment will be active medical issues and suspected contributors to feeding difficulties (Buie et al., 2010). The physician will consider nutritional status, ongoing medical complexities, and evaluating for any sort of painful process. At this stage, physicians may order blood work, an endoscopy and x-ray of the upper digestive tract, and consultation requests from collaborating subspecialties. These tests look to identify nutritional deficiencies, inflammatory and allergic processes, anatomic abnormalities, and functional deficits among others as these are some of the most common medical contributors to feeding difficulties.

Psychosocial Evaluation Evaluation by the team psychologist will cover a variety of domains that can impact the child’s feeding issues. A full developmental history is obtained, along with information about previously obtained and current intervention services. The psychologist will screen for other psychological and behavioral challenges that can impact feeding, including symptoms of anxiety, attention-­ deficit/hyperactivity disorder (ADHD), and other behavior disorders. This provider will likely review the child’s ASD diagnosis as well, including how the diagnosis was originally confirmed and what behavioral and educational services have been provided. In addition, factors such as parenting stress and family functioning should be evaluated (Abidin, 1992; Budd et  al., 1992). Families often complete psychosocial questionnaires to provide supplemental information to complement a thorough diagnostic interview. Finally, the psychologist will observe a sample meal in order to evaluate the parent-child feeding interaction (e.g., how the parent presents foods, how the child reacts, and how the parent responds to the

child’s reaction), assess the child’s response to preferred and non-preferred foods, and examine mealtime behaviors that may interfere with oral intake (Silverman, 2010; Silverman & Tarbell, 2017). This process is sometimes referred to as a functional behavioral assessment (Munk & Repp, 1994), generating information about the common antecedents of feeding problems for the child (i.e., parents presenting certain foods or using certain strategies), the behavioral issues themselves (how often they occur, the intensity, and the topographies of problem behaviors), and the functional consequences of those behaviors (i.e., parents withdraw feeding demands or provide attention). For teams with a strong ABA orientation, providers will conduct their own sample meals and experimentally adjust how they respond to child problem behaviors. Environmental consequences maintaining problem behaviors can also be targeted in treatment planning (Babbitt et  al., 1994). Finally, some feeding teams will utilize structured observation schedules to further quantify feeding interactions and child responses (e.g., Lukens & Linscheid, 2008).

Oral-Motor Evaluation A comprehensive clinical feeding evaluation with a speech-language pathologist or occupational therapist will include elements overlapping with the medical history (which is often collected with the entire team present). This information will support a more targeted oral-motor evaluation, beginning with an assessment of oral structures and functions. Oral structures of interest include the child’s teeth, given that unwillingness to chew can be associated with dental pain. Children with ASD who show sensory sensitivities around feeding may also be reluctant participants in oral hygiene routines, which can lead to tooth decay and associated pain. While ASD itself is not associated with physiological differences in the oral-motor area, comorbidities including cleft palate (Reid, 2004), Down syndrome (Spender et al., 1996), and 22q11.2 deletion syndrome (Eicher et  al., 2000) are often

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associated with structural concerns that may impact oral feeding. In addition to structures, oral-motor functions and child feeding skills are evaluated. For oral intake of liquids, the currently used modes of presentation (e.g., bottle, sippy cup, open cup, straws) are observed, along with trials of other modes. The same modes are often assessed with both familiar/preferred and novel/ non-preferred liquids, including variation of liquid thickness. Lip closure, bolus control, oral transit, and pacing of oral intake are all observed, with attention to any clinical signs of aspiration such as coughing, choking, wet breath and vocal sounds, or watery eyes. “Silent aspiration” can also occur in which none of the overt signs of aspiration are observable. Methods like the videofluoroscopic swallow study (VFSS) are the gold standard for identifying aspiration and determining the most appropriate feeding plan. This test involves x-raying an individual while they swallow varying types, amounts, and thickness of foods mixed with barium (American Speech-Language-­ Hearing Association, 2004). For evaluation of oral intake of solid foods, the child is presented with a variety of food types, colors, and textures/consistencies (e.g., crunchy, chewy, soft) so that the feeding team can understand how the child’s oral-motor structures, functioning, and feeding skills interact. Observations of feeding skills should always include both preferred and non-preferred foods and consider what foods are appropriate to the child’s developmental level. These observations can also provide an opportunity to trial feeding therapy techniques. All of this information will be considered along with medical, dietary, and psychosocial concerns to develop an effective treatment plan and home program. Particularly for children with ASD who have very limited variety in their diets, oral-­motor feeding skills should be assessed throughout the course of therapy to determine if they are ready to safely add new/more challenging foods to their diet. Otherwise, problem behaviors intended to delay and avoid feeding may increase because of these underlying skill-based deficits.

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Interdisciplinary Treatment of Feeding Disorders Given the complex nature of pediatric feeding disorders, a wide variety of intervention strategies are typically needed in order to address these multifactorial concerns. Families often benefit from working with a team rather than having to coordinate care across providers and settings. Given the different disciplines involved, approaches vary across teams and across providers. Those working on a team work together, integrating perspectives and prioritizing recommendations for the family. Within this care plan, strategies to address goals are variable. As noted earlier, many providers approach feeding from an ABA perspective, others from a less rigorous behavioral perspective, and still others from a sensory perspective. While not an exhaustive list of approaches, these are the most common. Medical and nutritional stability must be achieved first. Once children have reached these goals, providers can confidently focus on helping them to develop the skills needed to progress their feeding practices. Medicine and nutrition are the first priority because children are growing and developing at a rapid rate and need the calories to do so. This rapid growth includes brain development, which is clearly a priority during this critical stage of development. Finally, parents must be involved throughout the process. While the feeding team members are experts in their respective disciplines, the parent is the expert on their own child. They are also the individuals who are responsible for home implementation and skill generalization throughout the feeding intervention process.

Medical and Nutrition Intervention Stabilizing nutrition is the foundation in the treatment of feeding-related challenges (Silverman, 2010). Before working on skill building and behavior, the child must have the proper nutrition to grow. Nutrition services initially focus on balancing the diet by slowly changing portion sizes,

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eliminating grazing that occurs between meals (and disrupts normal hunger cycles), eliminating or reducing sugary drinks, adding nutrient supplementation (if needed), and working with parents on an individualized plan. The use of nutrient-dense, flavorful liquid supplements (e.g., PediaSure) to ensure complete nutrition is common, although these supplements can inadvertently prevent children from being hungry and motivated enough to eat their actual meals without careful scheduling. In addition to common nutrition deficiencies, many children refuse to eat or limit their diet as a way of communicating to their caregivers that it is not safe for them to eat or drink (Silverman & Tarbell, 2017). For children identified through observation or medical assessment to be experiencing aspiration of liquids, the same videofluroscopic swallow study procedures can be used in treatment to trial liquids at different consistencies to determine if there exists a safe option for oral intake. Thickening of liquids is one of the most common interventions for these challenges. When liquids can be made safe in this manner for a child to consume, refusal behaviors often decrease correspondingly. For children who require supplemental feedings in order to achieve optimal growth but cannot yet engage in oral intake (or have made inadequate progress via oral intake alone), supplemental feedings are provided via a nasogastric tube (NG tube) or gastrostomy tube (G-tube) that delivers nutrition directly into the stomach. While many parents are uncertain regarding these interventions, some children require this direct delivery of life-sustaining nutrition. Placement of NG and G-tubes to stabilize a child’s nutrition is a bridge to final goal of oral feeding. Underlying medical conditions that cause any sort of pain or discomfort with eating are also commonly found in children with feeding difficulties. Resolution of these concerns must be achieved prior to initiating feeding therapy, or progress will be limited. Common medical comorbidities for children with ASD who have feeding disorders include gastroesophageal reflux disease (GERD), eosinophilic esophagitis (EoE), constipation, congenital heart problems,

gastritis, genetic conditions, laryngomalacia, cleft palate, and motility disorders. Medications are often used along with other medical interventions to address these concerns.

Behavioral Intervention Changing Interaction Patterns  Behavioral approaches are currently the most efficacious interventions for pediatric feeding disorders (Babbitt et al., 1994; Linscheid, 2006; Lukens & Silverman, 2014). Behavioral approaches focus on building a child’s feeding skills along with the motivation to comply with mealtime and daily routines to establish habits that facilitate optimal growth, gain, and nutrition (Fischer & Silverman, 2007). Given the struggles present surrounding feeding, mealtimes have often become exceptionally stressful (if not contentious) for families. Parents often engage in frequent encouragement, coaxing and prompting to try new foods, take additional bites, and tolerate even small changes in routine or offered foods. While these are by no means uncommon strategies, all of this attention provided by the parent may inadvertently reinforce the child’s food refusal behaviors (Piazza, Fisher, et al., 2003). Stated differently, the child may have learned that they will gain their parents’ attention for refusing to eat a new or non-­ preferred food item or for engaging in other disruptive mealtime behaviors. As children engage in escalating food refusal behaviors, parents become more and more likely to respond by removing the challenging food item and offering a (often highly preferred) food choice as an alternative. Within the context of these interactions, the child learns that becoming upset and refusing certain foods sometimes results in those foods being removed, if not replaced by something better. Further, the parent learns over time that removing the non-preferred food and providing the desired food choice results in the child calming down and eating (reinforcing the parent for using these strategies). As this cycle repeats meal after meal, day after day, the dyadic learning history gains strength and becomes more resistant to change (Sharp, Burrell, & Jaquess, 2014).

Interdisciplinary Treatment for Pediatric Feeding Disorders

Within this behavioral conceptualization, the child’s food refusal and disruptive behaviors are likely being maintained by the resulting parental attention, the removal of the non-preferred foods, the presentation of a preferred food item, or some combination of all three. Behavioral treatment involves disrupting these processes, such that each consequence desired by the child (e.g., parent attention, removal of demands to eat, and access to preferred foods) is most readily accessed by staying engaging in mealtime-­ compatible behaviors (e.g., staying calm and seated, not disrupting the plate or cup, etc.) and accepting small amounts of the presented foods (Sharp et al., 2014). Skill Building and Shaping  A major goal of the behavioral components of feeding therapy is to teach and encourage the child to engage in these appropriate feeding behaviors (Fischer & Silverman, 2007). Feeding therapists employ differential attention techniques (i.e., purposefully withholding attention when the child engages in undesired behaviors and providing enhanced positive attention when the child engages in appropriate behaviors), and parents are coached on using these same strategies over the course of therapy. This includes the removal of verbal attention, physical touch (e.g., rubbing the child’s back to calm them down), and even eye contact and facial reactions when the child is being disruptive. While one of the most difficult tasks for parents, this planned ignoring is balanced by providing large quantities of positive attention when the child engages in any appropriate behaviors (Fischer & Silverman, 2007). These positive behaviors are often subtle initially (and not necessarily the full compliance with eating new foods that parents are hoping for), and parents typically require coaching to recognize them. For example, caregivers are coached to praise sitting in the chair, remaining calm, trying a new food, or tolerating a non-preferred item on their plate. Parents are taught to make praise statements direct, positive, and genuine. Many parents tend to praise a child for not engaging in a specific problem behavior (i.e., “Good job not throwing food”). While inhibiting disruptive behavior is

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certainly a goal, praising the child for the desired alternative (or “positive opposite” of the problem behavior; see Kazdin, 2009) is preferred. Through modeling, practice, and feedback, parents can learn to make praise statements like “I love how your keeping your food on your plate,” highlighting for the desired behavior for the child. Therapists must also forecast for parents throughout therapy how problem behaviors may actually get worse when intervention elements are introduced before they get better. Described as an “extinction bursts” in the behavioral literature, the rate or intensity of problem behaviors often initially increases rather than decreases when a reinforcer (e.g., attention) is no longer provided in response to the behavior (Miltenberger, 2012). Preparing parents in advance to continue consistently using planned ignoring and positive attending skills can avoid inadvertently reinforcing these escalating behaviors and reverting back to old habits. Working together, therapists and parents can overcome the child’s previous learning history to establish a new, positive pattern of interaction and behavior at mealtimes. As more positive interactions are established during mealtimes, therapists can build from this foundation to add new foods, increase volume, and build the child’s feeding skills (Linscheid, 2006). It is important to note that differential attention practices continue throughout treatment and remain critical after discharge to maintain progress (Sharp et al., 2016). In addition, positive praise and attention are augmented with reward systems to further enhance a child’s motivation to comply with the skill-building process and comply with therapist and parent instructions. Rewards should be immediate, highly motivating for the child, and limited to the feeding interaction (Flora, 2004). A one-to-one reward system is often the most effective place to start, offering the child a reward for each instance of a specific desired behavior or reaching a specific goal. For example, the child could earn a bite of a preferred food after taking a bite of a non-preferred food. When oral-motor skills are delayed, the speech and language pathologist may use these positive

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reinforcement strategies to improve a child’s chewing strength through graduated exercises. Therapists will tailor the goals so that the child is able to experience success while being adequately supported to develop their skill set and adjust benchmarks over time as the child makes progress. This process, called shaping, involves systematically reinforcing behaviors that successively approximate the eventual target behavior (Miltenberger, 2012). As children reach their feeding goals, reward systems can be gradually transitioned to focus on more global behavioral goals (i.e., daily chores, which might include general behavioral compliance during and outside of mealtimes). However, without close attention to gradual skill development and targeted motivation, progress and maintenance of gains becomes challenging. Another behavioral strategy used in feeding therapy is graduated exposure (Tanner & Andreone, 2015). This is the process by which the child is exposed to foods that are progressively more aversive (because of taste or sensory attributes, anxiety about eating, lack of familiarity, low preference, etc.) while being coached to implement self-calming techniques (e.g., deep breathing) and reinforced for compliance and progress. With gradual, repeated exposures, the child gradually learns to tolerate non-preferred and novel food items and engage in appropriate feeding behaviors. Also referred to in the feeding literature as systematic desensitization (Toomey & Ross, 2011), this approach can be employed for a wide variety of feeding problems and can be particularly useful for children with ASD with significant sensory differences. Some children have difficulties being around the smell of particular foods, to the extent that they cannot tolerate the food being on their plate (regardless of the expectation to take a bite or not). In this case, the graduated exposure process teaches the child to tolerate the food item at closer and closer distances. Praise and attention, rewards, and even contingent removal of the food (i.e., if the child tolerates smelling it and stays calm for a brief period of time, the food is removed immediately) are all used as well to motivate the child to stay calm, use their coping skills, and inhibit

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problem behaviors. This process can also be used in the context of food fading. For children with ASD who have rigid preferences that lead to only accepting specific brands or preparations of a given food, the preferred food can be mixed with greater and greater concentrations of a food that represents a “just noticeable difference” until they can accept the similar food without issue. This process is done explicitly. Rather than “trick” the child into eating a new food (which is challenging to begin with for sensitive eaters and can undermine trust between the child and parent/therapist providing the meals), the child learns to gradually accept more and more of a food that is slightly outside of their comfort zone. Some programs may combine this approach with other behavioral and sensory approaches. Reducing Problem Behaviors  Escape extinction (EE) is another key behavioral strategy used in feeding therapy (Ahearn, Kerwin, Eicher, Shantz, & Swearingin, 1996; Piazza, Patel, Gulotta, Sevin, & Layer, 2003; Reed et  al., 2004). As previously discussed, when a parent removes a non-preferred food item in response to a child’s food refusal behaviors, those problem behaviors are encouraged; that is, the child is increasingly likely to use these problem behaviors to escape and avoid foods in the future. The rationale supporting EE procedures, just like the differential attention procedures described above, is that the behavioral contingencies during feeding interactions must be changed in order to make progress. “Extinguishing” these problem behaviors therefore involves systematically withholding the source of reinforcement (which in this case is escape/avoidance of the non-preferred food) while providing targeted reinforcement (escape, as well as praise/attention) contingently when the child engages in the appropriate alternative behavior (accepting the presented bite of food). Note that EE does not involve force-feeding the child; instead, the contingencies are changed such that problem behaviors no longer lead to removal of non-preferred foods, and the child learns that the most efficient way to “be done”

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with the non-preferred item is to accept a very small amount of it. These procedures are ­challenging to implement even for trained therapists but have extensive research support for their efficacy (Ahearn et al., 1996; Piazza, Fisher, et al., 2003; Reed et al., 2004). In practice, EE procedures are always combined with extensive positive reinforcement procedures (as already described) to ensure child motivation and ensure that the feeding interactions remain positive in nature.

Environmental and Antecedent Interventions Linked to the same behavioral intervention approaches already described, the interdisciplinary feeding team is likely to test and implement a variety of modifications to the feeding environment to facilitate progress (Drotar, Eckerle, Satola, Pallotta, & Wyatt, 1990). These are referred to in the behavioral literature as antecedent interventions because they are executed prior to the child’s opportunity to engage in the desired feeding behaviors, with the intention of increasing the likelihood of success (Miltenberger, 2012). This category of intervention includes the use of alternative and adaptive feeding tools, such as specialized cups or utensils as tools to help their child address fine motor difficulties that contribute to feeding difficulties. A Nuk brush or other modified utensils may also be introduced to aid in texture tolerance, facilitate tongue lateralization, or improve food redistribution within the mouth (Gulotta, Piazza, Patel, & Layer, 2005; Morris & Dunn Klein, 2000). For young children, this may also mean the use of alternative chairs (e.g., high chair with straps to help keep them safe during meals, as well as to prevent disruptive behaviors and escape attempts). Reducing distractions in the feeding environment (including TV and tablets) is also useful and increases a child’s motivation to meet their feeding goals to regain access to these items. Therapists will also work with the family on establishing consistent mealtime schedules (including the elimination of grazing

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between meals), as well as mealtime locations to make feeding interactions and behavioral contingencies predictable (Silverman & Tarbell, 2017). Consistent with the core diagnostic criteria, children with ASD frequently struggle with transitions and communication related to feeding and mealtimes (Schreck, Williams, & Smith, 2004). In addition to more general behavior management strategies that can target these issues, therapists may develop a number of visual supports intended to prevent problem behaviors from occurring. These include the use of visual schedules representing when mealtimes will occur throughout the day, as well as the specific sequences within mealtime. Visuals can also represent the specific behavioral expectations during the meal (i.e., a “First/Then” visual indicating that after the child accepts three bites, iPad access will be granted). Visual supports can also be used to enhance the child’s ability to communicate with the therapists and parents. Children with limited functional communication skills often become easily frustrated and demonstrate a range of problem behaviors such as hitting or crying to communicate their wants and needs (Beukelman & Mirenda, 2005). Increasing functional communication, verbal or otherwise, can help reduce problem behaviors as children learn other ways to communicate their preferences. The use of sign language or Picture Exchange Communication System (PECS) cards can be used to facilitate both expressive and receptive communication during mealtimes. As indicated above, a number of modifications can be made to the food itself in order to facilitate progress and overcome sensory sensitivities and/or oral-motor skill deficits (both common in children with ASD). In our experience, foods that have a crunchy texture (e.g., goldfish crackers) tend to be more likely to be accepted by children with ASD, while foods with a soft/ mushy or combined textures (e.g., apple sauce, yogurt with fruit chunks) are more likely to be refused. Sensory differences can often be addressed through repeated exposure, shaping, and positive reinforcement.

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Parent Training and Education Just as child skill deficits can lead to feeding problems, parent skill and knowledge gaps can also contribute to feeding difficulties (Silverman & Tarbell, 2017). Particularly for children with ASD who are more likely to have a host of behavioral challenges, typical parenting strategies to manage daily routines (including feeding, as well as dressing, transitions, sleep, etc.) may not be successful. General behavioral parent training (for a review, see Roberts, 2008) involves teaching parents how to implement behavioral strategies (including those already discussed in feeding contexts above) throughout a child’s day, with the goal of increasing the likelihood of desired behaviors (e.g., following directions) and decreasing the likelihood of problem behaviors (tantrums, whining, aggression, etc.). Parent training that occurs in the context of feeding therapy must often address both general behavioral compliance and compliance with feeding routines, in part because many problem behaviors that children with ASD are likely to engage in throughout the day (crying, tantrums, aggression, property destruction, self-injury, etc.) will occur in the feeding context as well. In many cases, the feeding team will need to work with the family to develop general behavior management and compliance training plans early on in the course of treatment and build on these successes in the feeding arena following medical stabilization. Some feeding teams may even refer families to outside providers for supplementary behavioral parent training services like Parent-Child Interaction Therapy (PCIT), which has emerging support for young children with ASD (Masse, McNeil, Wagner, & Quetsch, 2016); this coaching may also occur in the course of a child’s established ABA services. Parents of children with ASD and feeding difficulties are ideally involved throughout the interdisciplinary treatment process. Through didactic teaching, observation of provider-delivered feeding therapies, and in vivo coaching during therapeutic meals, parents learn specific intervention techniques as well as the behavioral principles underlying the approach (Sharp et  al., 2014).

Using attention (combined with planned ignoring) to shape behavior, contingent reinforcement, and strategies to arrange the environment to make desired outcomes more likely, parents gradually take a more central role during meals during therapy sessions and begin integrating these approaches outside of therapy as well. Parents also often benefit from education about reasonable mealtime expectations, how to implement the environmental and antecedent interventions described above, and developmentally appropriate target foods (Sharp et al., 2014). Parents may also be provided with education about ways to meet their child’s nutrition needs. The nutritionist may provide suggestions about which foods contain the nutrients their child needs and help parents to select items that are culturally appropriate, available, accessible, and more likely to be eaten by their child. Further, parents may be provided with education about how to prepare foods that meet their child’s nutritional needs, particularly if the parent or family’s own food/cooking repertoire is limited.

Family Support Many families approach feeding their children with limited resources. The family may not have adequate financial support to purchase fresh fruits and vegetables or to risk purchasing a food that will not be consumed. Being mindful of these practical concerns is important for clinicians both in terms of adherence to treatment recommendations and in terms of rapport with the family. In addition to taking these concerns into consideration when meal planning and making treatment recommendations, it is often helpful to work with a social worker or other advocate who is aware of local resources. Food pantries, supplemental food assistance, and religious resources are common avenues of support for families that can be explored. Many communities and schools also offer meal programs and other supports to assist families with providing optimal nutrition for their children. Integrating a family’s unique cultural background may also play a contributory role in the

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success of feeding intervention (Davis-­approach is to facilitate the development of age-­ McFarland, 2008). It is important for the clini- appropriate feeding skills, rather than to increase cian to work on foods that are served in the family the volume of food a child consumes specifically home and those that significant others in the or to facilitate transitioning to oral intake. child’s life eats. If cultural or religious practices A recent peer-reviewed research study prohibit the consumption of certain foods, it is (Peterson, Piazza, & Volkert, 2016) compared important to be respectful of these beliefs and this sensory-based approach with an applied practices when working with the family. Many behavior analysis (ABA) approach in an ASD families appreciate being asked if there are any population. Children in the ABA group achieved foods that they are avoiding for any reason prior 80% or greater acceptance of bites and “mouth to the initiation of treatment. These preferences cleans” (a measure of food consumption) for may be related to medical need, religious beliefs, novel food items, while children in the sensory-­ and/or cultural practices, but the open-ended based intervention group achieved no increase in nature of the question allows many to feel more these metrics. The children in the ABA treatment comfortable answering honestly. Cultural prac- group also displayed the most age-appropriate tices may also impact mealtime structure, prac- eating behaviors following treatment. The chiltice, locations, and offerings. It is important to dren who received the sensory-based intervention always be working with the family to integrate were subsequently transitioned to the ABA interthese into a treatment plan that works for the vention and demonstrated similar gains (Peterson family. et al., 2016). The authors note a potential interpretation of these data reflecting an advantage to using sensory strategies prior to ABA-based Sensory-Based Approaches interventions, but this was not tested experimentally. Given the widespread use of sensory-based Another common approach is to address feeding approaches, significant empirical investigation of challenges from a sensory-based perspective these intervention strategies is needed to deter(Toomey & Ross, 2011). Sensory approaches are mine if these types of interventions will lead to based on the principles of systematic desensitiza- improvements in feeding disorders. tion (described above) and play, which is viewed by occupational therapists as a modality for child learning (Miller Kuhaneck, Tanta, Coombs, & Discharge Planning Pannone, 2013). Through this approach, food is and Generalization conceptualized as an anxiety-provoking stimulus, so the child’s sensory systems must be desen- Once a child has achieved their in-session feedsitized to the food experience. A hierarchy is ing therapy goals, plans should be made for genutilized to guide interaction with food. This hier- eralizing these skills to other environments and archy includes steps for graduated interaction maintaining skills over time. To facilitate skill with food, beginning with visual tolerance and maintenance and generalization, the feeding team moving to tolerating smell, touch, and taste and should be in regular contact with the child’s prieventually consuming the food. Playing with mary care provider regarding medical managefood is viewed as a relaxation response, and the ment and treatment progress. Additionally, food is removed if the child’s level of distress generalization sessions and interventions will becomes too great (note that this is the concep- likely be embedded within the feeding therapy tual opposite of the escape extinction procedures process, including parents as active participants described above). The child then returns to foods during in-session meals in order to build the skills and steps that are lower level on the hierarchy to needed to conduct therapeutic meals at home. relax and “reorganize” his sensory system Discharge planning will likely include ongoing (Toomey & Ross, 2011). The goal of this feeding goals as well as relapse prevention

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s­ trategies. Discussing potential challenges at discharge will be invaluable in helping families to become stewards of their child’s feeding care and reduce the risk of returning to prior feeding habits. One common challenge following discharge is the regression to less structured meals. When children can no longer rely on the same degree of structure to support their newly developed feeding skills and behaviors, regression may occur. Typically, reintroducing meal structure and/or reconsidering the motivation plan (reward system) can help families recapture gains made during treatment. Further, the team and family can plan strategies to support skill generalization in all of the child’s daily environments (i.e., school, community, and home). Children with ASD will typically have an individualized education plan (IEP) for supporting their success in the school setting, and feeding goals can potentially be integrated into this plan. Supports may include adult supervision during meals at school (for safety reasons and/or to keep the child on task) and to implement diet modifications. A feeding team social worker, a psychologist, or other behavioral professionals can work with the child’s school to encourage appropriate integration of these goals into the child’s educational plan or help the family to advocate for additional supports if no formal documents are in place. Most importantly, families should maintain contact with their child’s feeding team over time to maintain gains, troubleshoot as needed, and ensure long-term success.

Issues in Interdisciplinary Intervention for Feeding in ASD Assessment of the Evidence Feeding therapy, in its various presentations, has been present for decades. With advances in modern medicine and behavioral science, the field has experienced rapid growth leading to new innovations, collaborations, and improved outcomes. However, dissemination and widespread adoption of evidence-based practices have lagged behind the explosion of research over the last

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30 years. Despite the support for interdisciplinary approaches to feeding problems (McComish et al., 2016; Sharp et al., 2010; Silverman, 2010), team-based intervention is not yet the norm. A survey of feeding therapists who support children with ASD (Marshall, Hill, & Dodrill, 2013) found that while SLPs were “frequently involved” in treatment, OTs and pediatricians were “often involved,” dieticians were “sometimes involved,” and a psychologist was “involved occasionally (on request).” Practice trends may be driven in part by provider availability, insurance coverage, and feasibility and administrative supports for team-based endeavors. Of further concern, another survey suggests that up to 64% of feeding programs in the United States primarily rely on a sensory-based approach (Peterson et al., 2016). The extant literature supporting sensory approaches includes only a handful of papers, some of which are not peer-reviewed (e.g., Benson, Parke, Gannon, & Muñoz, 2013; Toomey & Ross, 2011). Prior to the comparison between ABA and sensory approaches conducted by Peterson et al. (2016), the one peer-reviewed article evaluating the efficacy of sensory-based strategies showed that 68% of participants evidenced no advancement following program completion (Benson et  al., 2013). Together, there is not convincing evidence supporting sensory-­ based approaches to treat feeding problems in children with or without ASD (Peterson et  al., 2016). Unfortunately, unsupported sensory-based strategies remain common in the broader ASD treatment literature as well (Case-Smith, Weaver, & Fristad, 2015; Lang et al., 2012). In contrast, the behavioral strategies described above that support interdisciplinary approaches to feeding interventions for children with ASD have been subjected to rigorous empirical evaluation and enjoy a strong evidence base (Ivy & Schreck, 2016; Makrygianni & Reed, 2010). That said, most research published in the behavioral literature relies on single-subject designs that yield high internal validity but potentially limited external validity. Given the significant heterogeneity seen in the presentations of children with ASD, group designs that test treatment packages and interdisciplinary approaches will

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be critical for justifying clinical practice guidelines that support dissemination. Additionally, “dismantling” studies that test the individual and combined effects of feeding intervention techniques are needed to further distill practices to the leanest and most effective methods that produce measureable and sustained improvement. Finally, translational research is needed to determine how successfully evidence-based practices can be implemented in real-world settings, to identify the most effective strategies for reducing barriers to successful implementation, and to ensure that treatment approaches offered to families are culturally acceptable and face-valid.

 ritical Comorbidities for Feeding C Problems and ASD Interdisciplinary feeding teams were born out of necessity, given the unique and interacting contributions of medical, developmental, behavioral, and psychosocial components. Each provider on the team works to target these intervention areas to provide comprehensive and individualized care based on the patient and family’s needs. A major part of the individualized care plan will be based on the factors that may complicate or disrupt treatment. The following comorbid conditions are critical for the team to consider, both from a feeding perspective and from the broader perspective of the child’s ASD symptoms and management. Constipation and Toileting Problems  In addition to feeding challenges, children with ASD are also significantly more likely than typically developing children to experience intermittent or chronic constipation (McElhanon, McCracken, Karpen, & Sharp, 2014). Constipation occurs when a child has infrequent, large caliber, or difficult-­to-pass stools that sometimes results in stool impaction (Hyams et al., 2016). Constipation can result from many different factors; however, a highly restricted diet, low fiber consumption, and restricted fluid intake are some of the most common contributors to this problem. Constipation can result in abdominal pain, vomit-

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ing, decreased appetite, stool withholding (since passing stool is frequently painful), and behavior problems, all of which can negatively impact feeding processes and interfere with feeding therapy. Screening for constipation in children with feeding difficulties is an important step in the initial evaluation and ongoing management of this concern. If constipation is present, dietary or medication recommendations are often made by the child’s primary care provider. Dietary recommendations include increasing water or clear fluid intake, increasing dietary fiber (spread evenly between meals and snacks) when possible, and limiting dairy intake (roughly 2–3 servings daily). Medications commonly prescribed to manage constipation include fiber supplements, osmotic laxatives (i.e., MiraLaX), or stimulant laxatives (e.g., Ex-Lax or Dulcolax). Increasing dietary fiber in children with inadequate fluid intake can inadvertently worsen the problem. If stool impaction is present, management of constipation will often begin with a bowel cleanout procedure where the child receives high doses of laxatives for several consecutive days to help “clean out” the colon and prepare it for an ongoing bowel management program. As constipation is often a chronic condition, maintenance medications may need to be prescribed to help keep constipation at bay, while the feeding team works to increase dietary range and fluid intake. For children with ASD who have additional comorbid conditions (including feeding problems), reliance on an interdisciplinary treatment model becomes increasingly important. Behavioral strategies to increase compliance with scheduled toilet sits, incentivize regular bowel output, and teach self-monitoring and management of constipation symptoms are known to be effective strategies in typically developing children (Friman, Hofstadter, & Jones, 2006; Wassom & Christophersen, 2014), with some support in ASD populations as well (Furuta et al., 2012).

Overweight/Obesity  Restricted diets and oral feeding challenges in no way preclude challenges with excess weight gain. With some variations depending on the studied sample and methods

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used, most investigations suggest that children with ASD are more likely to be either overweight (body mass index ≥85th percentile) or obese (body mass index ≥95th percentile) compared to typically developing peers of the same age and gender (Matheson & Douglas, 2017). Many health and behavior factors seem to contribute to this increased risk for children with ASD, including higher rates of sedentary activity (Dreyer Gillette et al., 2015) and sleep problems (Broder-­ Fingert, Brazauskas, Lindgren, Iannuzzi, & Van Cleave, 2014). Moreover, children with ASD are often prescribed medications that may lead to weight gain. For children with ASD and feeding problems that include very narrow diets (e.g., refusing fruits and vegetables, favoring carbohydrates and sugars) or reliance on high-calorie nutritional supplements, overweight/obese status may be even more likely. Interdisciplinary weight management programs have emerged as a best practice for typically developing children (Spear et al., 2007), but there is only emerging evidence for how to adapt these practices for youth with developmental disabilities (Pona, Dreyer Gillette, Odar Stough, Gerling, & Sweeney, 2017). Not unlike the guidance provided by team members during the feeding treatment process, medical and nutrition education/supports combined with behavioral skills training approaches are key components of these programs. More research on the risk factors for overweight/obesity is needed, as well as the best ways to integrate these interdisciplinary approaches into the broader arena of services received by children with ASD and feeding challenges.

Pill Swallowing  While estimates vary based on study population, approximately half of children with ASD are prescribed some kind of psychotropic medication (Madden et al., 2017). These figures, combined with the known increased rates of medical problems co-occurring with ASD, suggest that children with ASD are highly likely to be prescribed some kind of oral medication by a primary care or specialty medical provider. This presents a significant problem, given that this same population is at high risk for feeding prob-

C. Nadler et al.

lems. Pill swallowing requires a skill set quite similar to the skills needed for successful oral intake of food, and (not surprisingly) behavioral teaching and motivation strategies are recommended to facilitate medication administration in children with ASD.  There may also be unique feeding skills required: while some medications can be given in liquid formulations (assuming the child will tolerate liquids) and some tablet formulations can be chewed, many medications require that the child swallow the pill whole in order to ensure that the medication is absorbed at the intended rate in the stomach (e.g., extended release formulations of stimulant medications for ADHD symptoms). Behavioral interventions reported in published case reports as well as controlled studies appear to be largely effective and include many of the strategies already described in this chapter (e.g., Beck, Cataldo, Slifer, Pulbrook, & Guhman, 2005; Ghuman, Cataldo, Beck, & Slifer, 2004). First, therapists and parents model the steps for placing the practice pill on the tongue and swallowing it using a drink of water, using either placebo (sugar) pills or even small hard candies. Second, the child is prompted, praised, and provided other incentives for compliance with practice. At first, “pills” much smaller than the target size are used (e.g., half the size of a grain of rice) in order to increase the likelihood of compliance and successful swallowing. As the child demonstrates success, the practice pill size is gradually increased over time (see visual references at www.pillswallowing. com for shaping step suggestions). Once the child consistently swallows practice pills that are slightly larger than the target size, parents and medical providers can be more confident substituting in the actual medication into practice routine. Similar shaping and positive reinforcement procedures can be applied to liquid medications as well (Schiff, Tarbox, Lanagan, & Farag, 2011).

Pica  Pica is defined as consuming nonedible substances, which may include items such as rocks, toys, plastic, string, feces, or many other items. This behavior must occur for at least 1 month in order to qualify for DSM-5 diagnosis

Interdisciplinary Treatment for Pediatric Feeding Disorders

(APA, 2013). Children with ASD demonstrate an increased incidence of pica behavior when compared to the general population (Emond, Emmett, Steer, & Golding, 2010), as do individuals with intellectual disability (Ali, 2001). Thorough evaluation of pica-related behaviors is essential in feeding therapy, both because of the health risks associated with ingesting nonedible substances and because of potential underlying medical causes that may inform choices in the feeding therapy itself. Pica assessment will likely begin with a targeted interview focused on the frequency of the behavior, what substances are ingested, what strategies have been tried to reduce the behavior, and the success of these prior interventions. If deemed necessary, medical evaluation may include blood tests, physical examination, or x-rays to rule out potential causes of this behavior as well as complications. The most commonly identifiable medical causes for pica are nutritional deficiencies or anemia, while complications may include intestinal blockages also known as bezoars, ingestion of harmful substances and poisoning, bacterial parasites, or constipation or diarrhea (Stiegler, 2005). Laboratory testing may include obtaining lead levels, zinc levels, and iron levels. Behavioral assessment procedures can determine what social or nonsocial conditions may be reinforcing these behaviors, supporting intervention development (Mace & Knight, 1986). Treatment may involve antecedent interventions (e.g., reducing risk of pica by removing items from the environment or increasing supervision, enriching the environment so that there are alternative activities to engage in), teaching and reinforcing the use of replacement behaviors, and punishment procedures to discourage the behavior from occurring (Hagopian, Rooker, & Rolider, 2011).

Summary Despite gaps in the literature, differences in treatment approaches, and complicating comorbidities, the treatment of pediatric feeding disorders for children with ASD represents a notable area where interdisciplinary collaboration has led to

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improved child health outcomes. We hope that with continued translational research, engagement with families and other stakeholders, and targeted dissemination efforts, our ability to successfully identify and intervene on these potentially life-threatening conditions will continue to improve with time. Meals and food represent a significant part of the human experience, and children with both ASD and feeding problems run the risk of being even further disconnected from critical social opportunities without the support of interdisciplinary treatment. We hope that a collaborative model of family-centered and evidence-based care will continue to evolve and be accessible to support the needs of all children with developmental and behavioral challenges.

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Interdisciplinary Treatment for Pediatric Elimination Disorders Christina Low Kapalu, Cy Nadler, Natalie Brei, and Laura Slosky

Introduction to Elimination Disorders Toilet training is a developmental milestone that occurs with minimal medical or behavioral intervention for many children by around the age of 4 years. This timeframe may be delayed for children with autism spectrum disorder (ASD). When this milestone is not met within a developmentally appropriate timeframe, these toileting behaviors are considered elimination disorders

C. Low Kapalu (*) · L. Slosky Division of Developmental and Behavioral Sciences, Children’s Mercy Kansas City, Kansas City, MO, USA Department of Pediatrics, University of Missouri – Kansas City School of Medicine, Kansas City, MO, USA Division of Gastroenterology, Hepatology, and Nutrition, Children’s Mercy Kansas City, Kansas City, MO, USA e-mail: [email protected] C. Nadler Division of Developmental and Behavioral Sciences, Children’s Mercy Kansas City, Kansas City, MO, USA Department of Pediatrics, University of Missouri – Kansas City School of Medicine, Kansas City, MO, USA N. Brei Catholic Social Services of Southern Nebraska, Lincoln, NE, USA

(EDs). For the purposes of this chapter, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM 5; American Psychiatric Association, 2013), will be used to define EDs in this chapter. Elimination disorders are disorders in which a child urinates or defecates in inappropriate places such as their underwear or on the floor. This behavior must be inconsistent with their developmental level. Elimination disorders are predominantly diagnosed first in childhood or adolescence. Inappropriate elimination behaviors may be voluntary or involuntary and often lead to significant distress for the youth and their family. Finally, dysfunctional elimination (either wetting or soiling) cannot be due to the direct impact of a substance or a medical condition (e.g., Hirschsprung’s disease). Further, although a child may not meet strict diagnostic criteria due to a developmental delay, assessment and treatment procedures for wetting and soiling remain the same. Both enuresis and encopresis respond well to combined medical and behavioral interventions. Although there is a sizeable body of literature on the evaluation and treatment of EDs in children, research regarding the use of these same strategies for children with EDs and ASD is lacking. Where this research is available, it will be discussed in this chapter. As a general rule, the methods used for evaluation and treatment of elimination problems in neurotypical children also apply for children with ASD.

© Springer Nature Switzerland AG 2019 R. D. Rieske (ed.), Handbook of Interdisciplinary Treatments for Autism Spectrum Disorder, Autism and Child Psychopathology Series, https://doi.org/10.1007/978-3-030-13027-5_9

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Enuresis Enuresis, also referred to as urinary incontinence or wetting, can occur during the day (diurnal), at night (nocturnal or monosymptomatic), or at both times (nonmonosymptomatic). It is diagnosable when wetting occurs at least twice per week for three consecutive months or more. The child must be at least 5 years of age or be the developmental equivalent of 5 years old. Thus, if a child’s chronological age is 10 years but they are functioning more like a 3-year-old child, this diagnosis would not be applicable. Enuresis has both biological and behavioral etiology, which vary depending on the type of enuresis. Finally, enuresis can be “primary” or “secondary,” with the latter occurring when urinary incontinence begins after dryness (urinary continence) has previously been achieved for a period of time (DSM 5; American Psychiatric Association, 2013). Enuresis has been shown to negatively impact health-related quality of life for children with this condition and their families (Ertan, Yilmaz, Caglayan, Sogut, Aslan, & Yuksel, 2009; Naitoh, Kawauchi, Soh, Kamoi, & Miki, 2012).

Diurnal Enuresis Daytime wetting is referred to as diurnal enuresis (DE) or sometimes urinary incontinence. It is thought to be mostly related to biological causes such as medical conditions or significant biological differences. Common causes of diurnal enuresis include constipation and urinary tract infection (Robson, 1997). It is also associated with medical conditions such as cerebral palsy (Roijen, Postema, Limbeek, & Kuppevelt, 2001) and attention deficit hyperactivity disorder (Baeyens, Roeyers, Walle, & Hoebeke, 2005). Further, DE is often thought of as an intermittent problem or a self-resolving condition (Robson, 1997).

 octurnal Enuresis or N Monosymptomatic Enuresis Nocturnal enuresis (NE) occurs when a child voluntarily or involuntarily urinates into the bed or

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their underwear. While there is no one causal factor for NE, factors such as age, gender, and family history contribute and will be discussed further in subsequent sections. Similar to DE, NE is often self-resolving.

Nonmonosymptomatic Enuresis When a child presents with both day- and nighttime wetting, it is referred to as nonmonosymptomatic enuresis.

Prevalence, Etiology, and Course Overall, the prevalence of enuresis in the general population is about 5–10% for 5-year-old children and 3–5% among 10-year-olds (DSM 5; American Psychiatric Association, 2013). Enuresis is thought to have a spontaneous cure rate of 5–10% a year after the age of 5  years (DSM 5; American Psychiatric Association, 2013), with wetting being rare, occurring in about 1% of the population, after the age of 15 years. Nocturnal enuresis (NE) is the most common type of enuresis. Prevalence estimates of NE in school-aged children are approximately 10% (Mellon & McGrath, 2000; von Gontard & Nevéus, 2006), and subclinical rates of bed-­ wetting are even higher (Butler & Heron, 2008). NE often resolves without intervention and with the passage of time. Prevalence estimates of DE range between 8 and 17% percent of all children (Bolat et  al., 2014; Butler & Heron, 2008; Sureshkumar, Jones, Cumming, & Craig, 2009). NE is more common in boys, while DE is more common in girls (American Psychiatric Association, 2013; Swithinbank, Heron, von Gontard, & Abrams, 2010). Children with ASD appear to have higher rates of DE (25% vs 4.7%) and NE (30% vs. 0%) when compared to age-match typical controls (von Gontard, Pirrung, Niemczyk, & Equit, 2015). Simonoff et al. (2008) estimated the prevalence of enuresis in 10–13-year-olds with ASD in their sample to be 11%. In comparison, about

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3–5% of 10-year-olds in the general population qualify for a diagnosis of enuresis. Differences in prevalence rates between studies is likely a result of different age groups and presentations (e.g., enuresis prevalence overall vs. NE or DE measured separately). As mentioned previously, the majority of daytime urinary incontinence is thought to be related to medical comorbidities; however, there is some evidence of voluntary wetting in a subset of children with DE.  This subset may present with higher rates of behavioral difficulties (Zink, Freitag, & von Gontard, 2008). No one cause of nocturnal enuresis can be found; however, physiological contributors such as smaller functional bladder capacity, delayed bladder maturation, or limited vasopressin production at night (Campbell, Cox, & Borowitz, 2009; Norfolk & Wootton, 2012) and genetic links have been identified. Approximately 80% of children with NE have a first-degree relative who also encountered this difficulty (von Gontard, Schaumburg, Hollmann, Eiberg, & Rittig, 2001). It should also be noted that although higher rates of behavioral problems have been detected in children with enuresis (Hirasing, Van Leerdam, Bolk-Bennink, & Bosch, 1997; Liu, Sun, Uchiyama, Li & Okawa, 2000), this condition is not thought of as a primarily psychological disorder.

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lies, particularly in the areas of adjustment, social functioning, and family functioning (Bongers, van Dijk, Benninga, & Grootenhuis, 2009; Kaugars et al., 2010). Youth with encopresis can present with or without functional constipation and overflow incontinence. The vast majority of children with encopresis also have constipation. Approximately 85–95% of children with encopresis have encountered constipation in the past or at present (Levine, 1975; Loening-Baucke, 2007; Molnar, Taitz, Urwin, & Wales, 1983). For those with constipation, it is believed that soiling is the direct result of constipation, stool retention, and/ or fecal impaction. Softer stools “leak” around harder stools in the rectum, causing unintentional and involuntary soiling (Christophersen & Friman, 2010). If constipation continues for long periods of time, deconditioning of the muscles and nerves in the rectum and colon occurs, making it harder for individuals to detect the urge to defecate and defecate effectively. Children with encopresis who present without constipation and overflow incontinence and have bowel movements with normal frequency and firmness do not demonstrate behaviors consistent with fecal retention (Hyams et al., 2016).

Prevalence, Etiology, and Course

Encopresis occurs in between 1 and 3% of children in the general population (American Encopresis, sometimes referred to as fecal incon- Psychiatric Association, 2013; Van der Wal, tinence (FI), occurs when an individual over the Benninga, & Hirasing, 2005), with rates decreasage of 4 years (or the developmental equivalent) ing as children get older. This decrease suggests repeatedly passes stool into unsuitable locations that defecation difficulties resolve over time. (soiling) (DSM 5; American Psychiatric Boys are more likely to have this condition than Association, 2013). Soiling must happen at least girls (Van der Wal et  al., 2005). Fecal incontionce a month for a minimum of 3 months. Fecal nence continues into adulthood for a small porof the neurotypical population. soiling cannot be the result of a substance, medi- tion cation, or another medical condition, with the Developmental delays are associated with lower exception of constipation. Encopresis is thought rates of achievement of fecal continence (Joinson of as a functional disorder, meaning that for most et  al., 2008; Matson & LoVullo, 2009; von children with this condition, there is no organic Wendt, Simila, Niskanen, & Jarvelin, 1990). cause for it (Loening-Baucke, 1993). Encopresis Although the prevalence of encopresis in chilhas been found to be related to lower health-­ dren is not well studied, one estimate suggests related quality of life for children and their fami- that approximately 6.5% of 10–13-year-olds with

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ASD meet criteria for a diagnosis of encopresis, compared to the general population prevalence rate of 1–3% (Simonoff et al., 2008). Von Gontard et  al. (2015) estimated that 42.5% of children with ASD who were over the age of 4 years had delayed fecal continence (thus qualifying for a diagnosis of encopresis), compared to only 7.1% of age-matched controls.

I nterplay Between Core Features of ASD and Elimination Disorders ASD is characterized by core deficits in social communication (including social-emotional reciprocity, nonverbal communication, and relationship formation) as well as distinct patterns of restricted and repetitive behaviors (e.g., repetitive movements or speech, insistence on sameness, intense or unusual interests, and/or sensory differences) that are not better accounted for by other conditions (DSM 5, APA, 2013). These core features have significant implications for behavior and health, as evidenced by the high rates of mental health and physical comorbidities consistently observed for the disorder (Mannion & Leader, 2013). While youth with ASD may not qualify for a diagnosis of an elimination disorder (i.e., if the age equivalence of their cognitive functioning places them under the relevant cutoff), nearly half of children with ASD experience some form of gastrointestinal problem (Chandler et  al., 2013). Moreover, children with ASD are almost four times more likely than typically developing children to experience diarrhea or constipation (McElhanon, McCracken, Karpen, & Sharp, 2014). With less than a third of children with ASD meeting criteria for an intellectual disability (Christensen et  al., 2016), the core features of ASD are strongly implicated in the toileting problems experienced by these children. Considering how socially mediated the toilet training process is for typically developing children, perhaps this should not be surprising; youth who are less aware of (or less interested in) social routines and feedback, or who have receptive and expressive language challenges, seem likely to struggle to develop and maintain bladder and

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bowel control at the same rates as typically developing youth. Moreover, youth who show narrow eating habits, high distress around transitions and change, behavioral rigidity, and poor body awareness (or alternatively, highly sensitivity to bodily sensations) would also appear at heightened risk for elimination problems.

I nterdisciplinary Care for Children with ASD and Elimination Disorders Elimination disorders are often considered “biobehavioral” or biopsychosocial problems, suggesting bidirectional interplay between physiological and behavioral contributors (Houts, 1991). Comprehensive treatment of elimination disorders in any child is arguably most effective when an interdisciplinary approach is taken, due to the multifaceted nature of the problem (Caldwell, Lim, & Nankivell, 2017). The various components offered by each discipline of the interdisciplinary team result in a comprehensive and tailored treatment plan. For the child with ASD, behavioral issues can often be more challenging and complicate the treatment of elimination disorders. Sensory difficulties/aversions, fear/anxiety (Mayes et al., 2013), and behavioral rigidity (Marler et al., 2017; Peters et al., 2014) associated with ASD can contribute to toileting difficulties. In addition, many children with autism have rigid feeding preferences which may exacerbate constipation (Afzal et  al., 2003; Ibrahim, Voigt, Katusic, Weaver, & Barbaresi, 2009; Williams, Dalrymple, & Neal, 2000). Thus, addressing underlying feeding selectivity, behavioral rigidity, and other treatment complicating factors may be prioritized when treating elimination disorders in children with ASD. In interdisciplinary treatment, success depends on the integration of information across providers. The medical and pharmaceutical expertise offered by the medical provider is complemented by a behavioral health provider’s understanding of behavior and learning. Further, a child’s family and/or intervention team can provide additional information specific to that child that must be considered when creating an achievable t­ reatment

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plan. Care coordination between professionals such as a gastroenterologist, primary care provider (medical doctor or nurse practitioner), and psychologist as well as the family is a vital component to treatment of elimination disorders.

Team Members Psychology and Behavioral Health Within the context of a multidisciplinary team, the behavioral health provider brings expertise related to improving toileting-related behaviors. While constipation and painful stools are often the inciting factor for the development of an elimination disorder, learned behaviors and/or skills deficits help to maintain ongoing challenges. With the passage of a hard and painful stool, a child may begin to associate stooling with discomfort; over time, the child may then withhold stool in order to avoid an additional painful episode. These withholding behaviors typically lead to harder and larger stools that are even more difficult and painful to pass. As a result, the child continues to engage in increased withholding behaviors, and constipation worsens. Soiling or having accidents is typically the result of this pattern of learned behavior. The child may develop a fear of stooling or of the toilet or experience difficulties transitioning to the bathroom secondary to this pattern of withholding behaviors. The team behavioral health provider is able to address these concerns, helping the child to learn more adaptive toileting behaviors. Behavioral plans to increase appropriate toileting behaviors such as the ability to walk to the bathroom when prompted, pull down one’s pants and underwear, sit on the toilet, clean up after soils, and flush the toilet when finished are also helpful in treating EDs.

Medical Partner/Physical Health Given the interplay of physical symptomatology with behavioral factors contributing to toileting concerns, the role of the medical partner

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on the interdisciplinary care team is critical. Breaking the cycle of constipation is key to toileting progress. The primary role of the medical provider is to manage constipation, first with “cleanout” and then with maintenance medications. Cleanout involves use of high doses of stool softeners or laxatives, suppositories, and/ or enemas to remove all stool from the colon (Xinias & Mavroudi, 2015). Increasing fluid intake and monitoring hydration are also critical during this time. Once a cleanout has been completed, the medical provider will work to establish a daily bowel management regimen of medication with the goals of producing soft, easy-to-pass stool frequently. Daily medication is often needed for an extended period of time in order to allow the colon to shrink back down to its intended size. Further, plans for managing future episodes of constipation are often created so as to prevent recurrence of soiling. While the vast majority of children struggling with elimination disorders require care secondary to challenges with constipation, there are other medical conditions that can contribute to these challenges that should also be ruled out. These commonly include hypothyroidism, cystic fibrosis, Hirschsprung’s disease, and anorectal malformations, among others ­ (Loening-Baucke, 1993).

Additional Professional Collaboration For those individuals who have toileting difficulties thought to be related to pelvic floor dysfunction, a referral to a physical therapist who specializes in pelvic floor training may be appropriate. Pelvic floor training or rehabilitation consists of biofeedback training, bowel tracking, and pelvic floor exercises. Electrodes may be placed on the child’s legs, bottom, and abdomen in order to measure muscle contraction. These measurements are read on a screen, and the child is instructed on how to push more effectively to evacuate stool. Homework exercises are often given between sessions to help the child practice tightening and relaxing the pelvic floor. Sometimes behavioral and dietary

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modifications (i.e., increased fluid intake and decreased intake of constipating foods) are also made by the physical therapist. The research support for the efficacy of pelvic floor physical therapy for the treatment of encopresis and enuresis is not yet sufficient to call this an empirically supported treatment and thus is not a part of practice guidelines for the management of pediatric elimination disorders (Hyams et al., 2016). Social workers may also play a role in the treatment of pediatric elimination disorders. Toileting concerns can be lower on the list of priorities for parents and children if basic needs are not met. Social workers can provide invaluable support to families that may have housing, transportation, or feeding-related concerns.

Team Location Interdisciplinary care for children with ASD and elimination disorders may be recognized as the gold standard treatment; however, this does not necessarily ensure that it is the most common treatment provided. Coordination of provider schedules, potential for reduced billing, and communication between healthcare providers make interdisciplinary care a rarity. Many interdisciplinary care models are housed within children’s hospitals or academic medical centers, as they have the resources (e.g., personnel, clinic space, and ability to coordinate schedules) needed to create and sustain interdisciplinary teams. Several gastroenterology clinics with a focus on treating children with autism exist nationwide. Interdisciplinary teams focused on treating elimination disorders are often located within medical subspecialty clinics such as gastroenterology or urology and may function under the auspices of a medical director. Similarly, intensive day programs for the treatment of elimination disorders are housed within hospitals or medical centers. These programs often target both constipation management and behavioral toileting goals and create individualized treatment plans to meet these goals.

Treatment Approaches Inpatient vs Outpatient Approaches to treatment of elimination disorders vary across treatment providers and according to the needs of each individual child. The majority of treatment for encopresis is provided on an outpatient basis, although children may occasionally require inpatient intervention in order to make optimal treatment progress. Most often, children are admitted to the hospital for an inpatient cleanout if it cannot be achieved at home or if deemed medically necessary. Addressing constipation aggressively is foundational to making progress with toileting and requires starting from a clean slate. Cleanout is facilitated by medications delivered via nasogastric (NG) tube. Once the cleanout is completed, children will be discharged home on a maintenance bowel management program. Outpatient treatment of elimination disorders varies based on the needs of the child and family, and it often involves meeting with a medical provider and behavioral provider regularly. Families may also be asked to meet with an outpatient therapist or other specialists on a more frequent basis to provide adjunctive services.

Medical Strategies Families frequently first present to their primary care providers for problems related to elimination. Primary care providers may offer basic dietary recommendations (e.g., more fluid and fiber) or recommend a laxative such as MiraLAX during office visits. This medicaladvice-only treatment is regularly seen as firstline treatment and is often effective at managing elimination disorder symptoms for the majority of children. Referral to a pediatric specialist such as a gastroenterologist or urologist may be the next step if families are not making adequate progress in managing symptoms or present with complicating factors such as anatomical differences that contribute to toileting difficulties.

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Behavioral Strategies Most treatment approaches for EDs rely at least in part on a behavioral framework. The field of applied behavior analysis (ABA) explicitly seeks to apply behavioral principles to problems of social significance (Baer, Wolf, & Risley, 1968), which would certainly include adaptive behavior issues like toileting problems for children with ASD. In the context of ED treatment, ABA-based approaches break down complex activities into component skills and behaviors that can be targeted individually and eventually linked together. Positive reinforcement (i.e., the delivery of a reinforcing stimulus following a behavior to increase the future likelihood of that behavior; Cooper, Heron, & Heward, 2006) is a fundamental strategy in behavioral intervention, with obvious application in the intervention of elimination disorders (e.g., praise and rewards delivered contingently following compliance and successful elimination). Many intervention approaches rely on the behavioral concept of stimulus control (i.e., stimuli that signal the availability of reinforcement for engaging in a specific behavior), as is the case when children learn that they receive rewards when urinating in the toilet rather than the closet. Shaping (reinforcing successive approximations of a target behavior) allows interventionists and parents to gradually use a child’s existing repertoire to teach new skills, such as the ability to sit on the toilet for longer and longer periods of time via brief sitting practice. Positive reinforcement, stimulus control, and shaping form the backbone of behavioral intervention for elimination disorders and indeed are the basis for wide-ranging evidence-based interventions for developmental delays and disruptive behaviors in children with ASD as well. Behavioral intervention approaches are often categorized as targeting antecedents, behaviors, or consequences (the “ABCs” of behavior; Cooper et  al., 2006). Antecedent interventions are used to prompt desired behaviors (e.g., verbally reminding a child to sit on the toilet, physically placing a child on the toilet) or otherwise increase the likelihood of prerequisite behaviors to occur (e.g., fluid loading to increase likelihood

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of urination during a placement). Approaches targeting the behaviors themselves are often skill-­ building in nature, such as rehearsing compliance with prompts to go from the living room to the bathroom. Finally, consequence-based interventions focus on providing targeted reinforcement immediately following desired behaviors, skills, or shaping steps (e.g., delivering praise or some other reward after a child voids correctly in the toilet). By breaking the skills of toileting down into component parts, creating opportunities for the child to associate engaging in the desired behaviors with reinforcing outcomes, and connecting the components together (as well as to naturalistic cues), children with ASD can make steady gains in the toileting abilities.

Cognitive and Educational Strategies Cognitive strategies are also helpful in addressing challenges related to elimination disorders (Colombo, Wassom, & Rosen, 2015). Children often benefit from psychoeducation and teaching regarding the brain-gut connection (Christophersen & Friman, 2010) as well as good toileting practices for urination and defecation (e.g., frequent elimination, prompt response to toileting signals, and cleaning when an accident occurs). Their parents benefit from information regarding how common EDs are, the sometimes involuntary nature of these concerns, as well as the importance of behavioral modification strategies in shaping appropriate toileting behaviors. Further, parents should be provided with information about developmentally appropriate expectations for toileting. For example, a parent may want their 3-year-old to be completely dry at night, but this may not be a developmentally appropriate expectation for all children. If a child presents with fear of toileting or toilet refusal, strategies such as graduated exposure, use of adaptive coping skills, and reinforced practice can be taught to help children learn to conquer these fears and move toward more appropriate toileting behaviors. It should be noted, however, that cognitive behavioral strategies are most appropriate for youth who do not

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have significant language or intellectual impairment as they require higher-order processes including “metacognition” or thinking about one’s thinking.

Interdisciplinary Evaluation of Elimination Disorders Evaluation of Enuresis  tandard Medical Evaluation S As is the case with the treatment of encopresis, the assessment of a child presenting with enuresis will depend on a number of factors, including the child’s chronological and developmental age, symptom presentation, onset of symptoms, and other factors. As such, a medical evaluation typically begins with a thorough history-taking with the child and caregivers as well as a physical exam (Vande Walle, Rittig, Bauer, Eggert, Marschall-Kehrel & Tekgul, 2012). Medical conditions associated with wetting, such as constipation, fecal impaction, spinal cord anomalies, diabetes, vesicoureteral reflux, and other conditions, will be ruled out at initial evaluation. Urinalysis and/or culture may be performed. As constipation is one of the most common contributing factors to enuresis, an evaluation of stooling habits is conducted. McGrath, Caldwell, and Jones (2008) found that 36% of children presenting with nocturnal enuresis had constipation. Alleviation of constipation has the potential to reduce or eliminate day- and nighttime urinary incontinence (Loening-Baucke, 1997). Patients and families may also be asked to complete a voiding diary for 3–7  days, tracking urination behavior (i.e., urination frequency and volumes) as well as fluid consumption (Vande Walle et al., 2012). Symptoms such as recurrent urinary tract infections (UTIs), urinary urgency, urinary frequency, or pain with passage of urine may necessitate further medical evaluation. Additional medical evaluation may include, but is not limited to, ultrasound, bladder scans, and/or X-rays (Hoebeke, Bower, Combs, De Jong, & Yang, 2010).

Mental/Behavioral Health Behavioral health evaluation will likely mirror medical evaluation in that a thorough toileting history will be collected at the outset of treatment. Factors such as when the problems began, how often accidents are occurring, and responses to accidents will be considered when creating a treatment plan. The provider will investigate contributing and maintaining factors related to urination accidents such as voiding postponement. Informal evaluation of a child’s developmental level and language skills may also be appropriate. Finally, the provider may formally or informally assess behavioral comorbidities that are impacting toileting. For example, symptoms of attention deficit disorders are seen in approximately 25% of children presenting to treatment for urinary incontinence (Baeyens et al., 2005). Challenges related to transitioning, compliance, and postponed elimination are often contributing factors in these children and often need to be addressed in order to make toileting progress. Evaluation may include use of broadband behavioral measures including the Child Behavior Checklist (CBCL; Achenbach & Ruffle, 2000) or Behavioral Assessment System for Children (BASC; Reynolds, Kamphaus, & Vannest, 2015). Referral for outpatient psychotherapy and/or a comprehensive evaluation may be made depending on the results of the broadband measure or if stalled treatment progress is noted.

Evaluation of Encopresis  tandard Medical Evaluation S Children with autism and encopresis should receive a thorough medical evaluation of symptoms, similar to that received by children without autism (Buie et  al., 2010). That said, providers may need to look for atypical signs of gastrointestinal concerns including vocal or motor ­behaviors, self-injurious behavior, or sleep disturbance as these types of symptoms may be more prevalent in children with autism (Buie et  al., 2010). Evaluation of overt behaviors is even more important for children with limited

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verbal skills as they may be unable to describe symptoms. In examining a child with autism and encopresis, it is first important to determine the child’s current level of constipation (Buie et al., 2010). Depending on the degree of constipation, the child may require cleanout, laxative medications, or both. It will also be helpful for the medical provider to collect a thorough medical history including obtaining information about the onset, duration, and frequency of stooling as well as the locations that the stools occur (i.e., in the toilet or in their underwear). Providers then review the child’s current bowel management medications as well as medicines trialed in the past. Knowing what has worked, what has been less successful, and what dosages have been used will all help to inform next steps in establishing an effective medication regimen. Finally, a physical exam involving abdominal palpation to assess stool load will be performed and additional testing ordered as necessary. Constipation is diagnosed by symptom-based criteria for the vast majority of children. Beyond standard medical evaluation for constipation, further testing may be ordered by a treating provider if red flag symptoms (e.g., bloody stools, anorectal malformations, suspicion of Hirschsprung’s disease) are present (Hyams et al., 2016). Further testing may include anorectal manometry, rectal biopsies, blood work, radiographs, or stool samples. Often, additional testing is not indicated based on clinical history, and potentially invasive or costly procedures are avoided unless needed.

 ental/Behavioral Health Evaluation M The mental health provider on the team will likely conduct their own thorough evaluation of symptoms including the onset, frequency, and duration of the child’s bowel training difficulties. The provider will determine if the child has ever been bowel trained and will likely assess bladder training as well. Additionally, the provider will investigate contributing and maintaining factors related to inappropriate elimination. Looking for patterns in the child’s bowel functioning may help to inform targeted treatment planning in that it can identify when sits might be most p­ roductive,

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highlight any underdeveloped or absent toileting skills, and any behaviors that make appropriate toileting less likely. The mental health provider on the team may also evaluate the child for any psychosocial comorbidities that may be impacting toileting concerns. For example, if a child has comorbid ADHD symptoms and hyperactivity/impulsivity is interfering with the ability to sit on the toilet for long enough, these symptoms should be addressed. As is the case in evaluation of enuresis, the mental health provider may also use a broadband behavioral screening measure to evaluate for psychological or developmental comorbidities that impact treatment, referring for additional intervention or assessment as needed.

Interdisciplinary Treatment of Elimination Disorders Treatment of Enuresis Medical Intervention As mentioned previously, evaluation of constipation is a standard part of medical assessment when a child presents with urinary incontinence. McGrath et al. (2008) estimated that constipation occurs in 36% of children presenting with nocturnal urinary incontinence symptoms. Management of ongoing constipation is often thought of as a first step of treatment of diurnal and nocturnal enuresis. Loening-Baucke (1997) found that when constipation was managed in children with constipation and urinary incontinence, 89% of diurnal enuresis and 63% of nocturnal enuresis resolved. Please see treatment of constipation in the encopresis section for further detail about medical management of constipation. There is limited guidance for providers in the medical treatment of nonmonosymptomatic enuresis when no other complicating factors like recurrent urinary tract infections (UTIs) or vesicoureteral reflux (VUR) are present. Thus, medical treatment of monosymptomatic, or nocturnal, enuresis will be discussed.

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Medication-only treatment of nocturnal enuresis is common practice (Friman, 2008) despite evidence in the literature that it should be initiated only when behavioral interventions cannot be used or have been unsuccessful (Mellon & McGrath, 2000; Moffatt, 1997). There is evidence to suggest that two types of medications, tricyclic antidepressants and antidiuretics, can be used to manage symptoms of enuresis; however, success rates for these medications (i.e., imipramine or desmopressin) alone are often fair to moderate (Glazener, Evans, & Peto, 2004; Houts, Berman, & Abramson, 1994). Return of symptoms once medications are discontinued is fairly common, and medication side effects can be serious. Trialing behavioral interventions with limited cost and minimal to no side effects makes sense as a first step in treatment of nocturnal enuresis. There is some evidence to suggest improvement in nighttime wetting when combining medication and behavioral intervention, specifically the urine alarm (Bradbury & Meadow, 1995; Leebeek-Groenewegen, Blom, Sukhai, & Van Der Heijden, 2001; Sukhai, Mol, & Harris, 1989).

Mental/Behavioral Health Interventions Education and Antecedent Interventions A standard component of the treatment of enuresis is educating parents and children about how certain behaviors can impact the bladder. Strategies to reduce wetting are provided during clinic visits. The goal of these strategies is to empty the bladder more regularly and completely, as incomplete emptying or delayed voiding can place added stress on the bladder and/or kidneys and lead to further complications such as recurrent UTIs or VUR.  Standard treatment recommendations include a timed void schedule (typically every 2  h), double voiding, management of constipation, increasing fluids, and decreasing bladder stimulants. These strategies will be discussed further in the next section. Recommendations to reduce nighttime wetting are much the same; however, parents may also be prompted to wake their children after a short

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period of sleep to have them eliminate once more during the night. Parents are provided with education about how common daytime and nighttime wetting are for children of various ages. For example, the prevalence of urinary incontinence overall is between 5 and 10% for children 5  years of age and 1.5% and 5% for children ages 9 and 10 years (American Psychiatric Association, 2013; Butler & Heron, 2008). These numbers naturally decrease over time, and parents may be told that the only intervention needed is more time. Addressing unrealistic parental expectations about timelines for the completion of toilet training or the termination of bed-wetting is also vital. Further, parents are provided with information about the link between family history and higher rates of bed-wetting. Antecedent-based strategies for managing enuresis focus on increasing the likelihood that the child will (intentionally or otherwise) pass urine appropriately into the toilet. By arranging the environment and schedule to support appropriate voiding, more targeted behavioral interventions (described below) can be implemented to encourage continued success (Kroeger & Sorensen-Burnworth, 2009). One key first-line strategy is to increase the frequency and duration of a child’s contact with the toilet itself via scheduled sits (occurring every 2  h throughout the day). In addition to increasing the odds of the child voiding while on the toilet, scheduled sits have the added benefit of supporting rehearsal of other behaviors that facilitate appropriate toileting (i.e., walking to/from the bathroom, interrupting other activities briefly, practice with clothing and hygiene, habituation to the sensory experience of sitting on the toilet) that may previously have been absent. Scheduled sits can be prompted by caregivers directly (e.g., with verbal instruction) or indirectly through a timer or “potty watch” that the child wears (Wenger, 2017). Prompted sits may also occur when a parent or teacher suspects the child may need to ­urinate, and these sits yield the same benefits. Sits can also be prompted by toileting accidents themselves, whether they are detected visually, by child report, or signaled by a urine alarm that

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is triggered by moisture (Levato et  al., 2016). Visual supports in the form of picture schedules (e.g., Knight, Sartini, & Spriggs, 2015) or videos (e.g., McLay, Carnett, Van der Meer, & Lang, 2015) can be used to facilitate these antecedent-­ based strategies and have been proven to be useful for children with ASD. Complementing scheduled and prompted toilet sits, interventions for enuresis also often include guidance on increasing the child’s fluid intake during periods when prompted sits are planned. Parents, therapists, and teachers may prompt and reinforce fluid intake (sometimes called “fluid loading”) and increase their monitoring to support rapid transition to the bathroom when signs of impending (or active) urination appear (LeBlanc, Carr, Crossett, Bennett, & Detweiler, 2005). Increasing the number of discrete episodes of urination during a training period allows children to experience multiple learning trials in rapid succession, akin to ABA-­ based discrete trial teaching (Smith, 2001). Prompts to “try again” immediately after a child has passed some urine, referred to as double voiding, have the same effect and can be particularly helpful for children with a pattern of incomplete bladder emptying (e.g., accidents despite having recently urinated correctly in the toilet; Ayan, Topsakal, Gokce, & Gultekin, 2007). Finally, urology providers may recommend decreasing intake of foods and beverages containing ingredients that may stimulate and/or irritate the bladder, including caffeine, citrus, artificial dyes, and artificial sweeteners; however, these suggestions appear to be guided by opinion rather than research at this time (Vande Walle et al., 2012). Behavioral Interventions In the context of antecedent-based interventions, targeted reinforcement of both appropriate voiding and compliance with instructions can serve to reduce accidents, build toileting skills, and support maintenance of gains over time. For children with ASD, formal preference assessments (DeLeon & Iwata, 1996) are recommended to identify which potential reinforcers may most effectively support the toileting intervention

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components (LeBlanc et  al., 2005). Beyond the use of descriptive praise for compliance with instructions (and the withholding of that attention contingently following minor misbehavior), most formal toileting interventions will explicitly include the immediate contingent delivery of high-value rewards (e.g., small candies, access to preferred toys, etc.) when the child successfully voids in the toilet. Initially, reinforcement is delivered for every discrete occurrence of the targeted behavior(s); with continued success, this schedule is thinned gradually with the goal of establishing a more sustainable delayed reinforcement plan. Additionally, many children with ASD can be transitioned to a token system (awarding “points,” pennies, etc. that can be redeemed later for rewards) to support schedule thinning. Visuals that track a child’s progress toward earning rewards can help maintain motivation in the face of delays. Punishment paradigms (using aversive stimuli to discourage urine accidents) were previously popular in the management of toileting problems for typically developing children (e.g., Azrin & Foxx, 1971) but appear less commonly in the literature for children with ASD.  LeBlanc et  al. (2005) note the difference between “restitutional” overcorrection (e.g., punishment for a urine accident in the form of prompting the child to engage in repetitive rehearsal of an entire repertoire of behaviors that facilitate appropriate toileting) and positive practice (e.g., overcorrection focused specifically on repeated rehearsal of the behaviors required after an accident). Reinforcement-­ only approaches are frequently reported in the current literature, so punishment does not appear to be a necessary component for managing enuresis in children with ASD. Behavioral interventions for nocturnal enuresis draws on the same approaches as diurnal enuresis. Scheduled sits in the early evening and immediately before bedtime, as well as restricting fluids after dinner, can reduce the likelihood of accidents overnight. Sits can also be scheduled periodically during the night (e.g., an hour after the child’s bedtime, similar to the double voiding strategy described above to address incomplete emptying). Urine alarms

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are particularly useful for prompting trips to the bathroom overnight and were designed for this purpose (Henriksen & Peterson, 2013). The evidence for the efficacy of urine alarms in reducing nighttime wetting and maintaining dryness is overwhelming and advocated for in many practice guidelines for the treatment of nocturnal enuresis (Fritz & Rockney, 2004; Feldman, Canadian Paediatric Society, & Community Paediatrics Commitee, 2005). The urine alarm can also be paired with overlearning procedures (Houts, 1995) and “dry bed training” (Azrin, Sneed, & Foxx, 1974). Finally, children can be rewarded for using the bathroom appropriately during the night and waking up dry.

Treatment of Encopresis Medical Intervention Medical intervention for encopresis treatment begins with an aggressive bowel cleanout in order to set the child up for optimal success (Xinias & Mavroudi, 2015). Cleanouts involve taking high doses of laxative medications in order to completely empty the child’s bowel. The goal is to produce diarrhea for a brief time, similar to bowel preparation for a colonoscopy, in order to remove all hard stools from the lower intestines (Xinias & Mavroudi, 2015). Keeping the child hydrated is important during cleanout. Following cleanout, maintenance medications are prescribed to prevent a recurrence of constipation symptoms (Colombo, Wassom, & Rosen, 2015). Ideally, the child should pass a substantial amount of soft stool into the toilet regularly and without straining. Treatment guidelines regarding the management of constipation in children with ASD suggest use of MiraLAX or Polyethylene Glycol 3350 (Buie et al., 2010); however, other laxatives or adjunctive medications may be recommended. Treatment of constipation for several months to a year is common as it is necessary to allow the colon to return to its normal size and functioning (Christophersen & Friman, 2010). Gradual fading of laxative medications can be completed following a prolonged period of constipation ­

management and the absence of soiling. Discontinuing medications too quickly may lead to increases in constipation and/or soiling.

Mental/Behavioral Health Interventions Education and Antecedent Interventions Psychoeducation is also a vital component of the treatment of encopresis (Colombo, Wassom, & Rosen, 2015). Parents are taught that constipation is the primary contributing factor to encopresis. They are also told that encopresis is largely involuntary in nature and that the child is not having accidents on purpose. Education about reward systems and other behavioral interventions is also provided. Antecedent interventions for addressing encopresis involve increasing structure, teaching prerequisite toileting skills, and preventing accidents before they happen. Standard intervention begins with scheduling regular toilet sits throughout the days, often 20–30 min after meal times to capitalize on the gastrocolic reflex (Colombo, Wassom, & Rosen, 2015). The child may be prompted to sit on the toilet at key times in order to increase the likelihood of a bowel movement being passed in the toilet. Bowel tracking may also be recommended to determine if there are patterns related to stooling that can be used to create a targeted treatment plan. Aggressive constipation management is also classified as an antecedent intervention as preventing constipation and painful stools reduces the likelihood of withholding behaviors, worsening constipation, and soiling accidents. Behavioral Interventions With constipation aggressively managed, behavioral interventions can then be successfully put into place to improve toileting behaviors and decrease soiling accidents (Christophersen & Friman, 2010). Improving toileting behaviors is a very difficult task for the child, and providing optimal motivation to engage in these target behaviors is critical to intervention success. Rewards should be provided to the child contingently upon comple-

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tion of successful e­limination. Rewards are most effective if delivered immediately and consistently. As mentioned in the treatment of enuresis section, preference assessment may need to be conducted in order to determine the power of various reinforcements. Punishment is known to be ineffective or even counterproductive in the treatment of encopresis (Cooper et al., 2006; Christophersen & Friman, 2010). One strong contributing factor in this process is the fact that soiling is not a voluntary behavior for the child. As a result, the child who is punished for experiencing a soil will often engage in behaviors to hide the soil when it occurs to avoid the punishment. These behaviors often become equally if not more distressing to caregivers and are common targets of intervention. Children who experience soiling accidents or even toilet refusal behaviors often inadvertently receive significant attention from caregivers for these occurrences, which reinforces such behavior. Conversely, when a child remains clean or has a bowel movement in the toilet, he or she is also less likely to receive attention for engaging in these behaviors as they are “expected” of them by caregivers. As a result, these desired toileting behaviors often go unreinforced and are less likely to recur in the future as a result. An important component of treatment for encopresis includes parent training regarding use of behavioral strategies to increase the likelihood of desired behaviors (e.g., eliminating in the toilet) and decrease the likelihood of undesired behaviors (e.g., soiling or hiding soils) and how to use behavioral momentum and reinforcers to encourage skill development through shaping. At the core of this intervention is the use of caregiver attention to shape behavior.

behavioral treatment in the treatment of encopresis (Brazzelli et  al., 2011; Brooks et  al., 2000; Cox, Sutphen, Borowitz, Kovatchev, & Ling, 1998; Poenaru et al., 1997) for children without autism. This recommendation makes sense given that both medical (e.g., chronic constipation or slow motility) and behavioral (e.g., limited toilet sits, ignoring the urge to stool, stool withholding) factors contribute to the genesis and maintenance of this problem.

I nterplay of Medical and Behavioral Interventions

Autism is more prevalent in a number of genetic conditions including but not limited to fragile X syndrome, Angelman syndrome, Down syndrome, 22Q11.2 deletion syndrome, and tuberous sclerosis (Caglayan, 2010). Multiple organ systems may be impacted for

The existing literature regarding treatment of elimination disorders in children provides good support for the use of combined medical and

Complicating Factors in the Treatment of Elimination Disorders Constipation Constipation is often successfully treated with daily oral medication. Polyethylene Glycol 3350, or MiraLAX, is one of the most common medications utilized in the treatment of constipation (DiPalma, DeRidder, Orlando, Kolts & Cleveland, 2000) and works by drawing water into the stool, keeping it soft. MiraLAX comes as a powder that is dissolved in approximately 8 ounces of clear liquid and then consumed. Dosing will be specific to the child’s needs and can be increased or decreased fairly easily. Other laxative medications may include milk of magnesia, Senokot, Dulcolax, or Lactulose among others. Rectal therapies such as enemas or suppositories may also be indicated for the treatment of constipation and encopresis (Cox, Sutphen, Ling, Quillian, & Borowitz, 1996). Rectal therapies may also be effective for toilet training children with ASD, but there is not yet significant research support for these interventions.

Medical Comorbidities

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youth with these syndromes. For example, children with 22Q11.2 deletion syndrome not only have an increased rate of autism compared to the general population but can have immunological, gastrointestinal, endocrine, and cardiac comorbidities, all of which may need to be managed in addition to elimination concerns (McDonald-McGinn et  al., 2015). Addressing medical comorbidities becomes an important part of treatment, as comprehensive care has the best potential to lead to optimal outcomes. Further, several medical disorders such as spina bifida or cerebral palsy can be comorbid with constipation and fecal incontinence (Del Giudice et al., 1999; Verhoef et al., 2005). Factors such as low muscle tone and difficulty with ambulation should be addressed in a comprehensive toileting plan.

 ehavioral Challenges and Lack B of Instructional Control Appropriate elimination, including both the development of these skills and reestablishment of continence following a lapse, is mediated by a child’s motivation. As already described, behavioral intervention approaches rely on targeted reinforcement of desired behaviors to teach and encourage the use of appropriate toileting skills; however, children have many potential sources of reinforcement in their home and school environments, and they are often more highly motivated to seek these rather than to engage in teaching programs. For many children with ASD, inconsistent compliance with general adult instructions must be addressed before or during intervention targeting toileting-specific demands. Beyond noncompliance, problem behaviors like aggression, tantrums, self-injury, and other disruptive behaviors are not uncommon for children with ASD, and all have the potential to disrupt or delay treatment of elimination disorders. Fortunately, a strong body of research supports the use of ABA-based approaches for understanding the motivation for engaging in these problem behaviors (Hanley, Iwata, & McCord,

2003) and using information to develop function-­ based treatments for them (Dunlap & Fox, 2011).

Anxiety While not usually considered a disruptive behavior, escape/avoidance associated with anxiety can also be a major toileting barrier. Cox, Morris Jr., Borowitz, and Sutphen (2002) found that children with encopresis were found to have more symptoms of anxiety and depression when compared to controls. Children with ASD are often distressed by elements of the toileting routine itself (i.e., deviating from a routine that was previously adhered to rigidly) as well as elements of the environment (i.e., sensitivity to the sounds of the automatic-flush toilet or hand dryer in a public restroom). Anxiety and rigidness associated with ASD can be treated with the same behavioral and cognitive-behavioral approaches already described for both toileting problems and other problem behaviors (Hagopian & Jennett, 2014; Sukhodolsky, Bloch, Panza, & Reichow, 2013).

Complex Mental Health Concerns Research seems to suggest that the majority of children with encopresis do not have clinically significant emotional disturbance (Cox et  al., 2002; Friman, Mathews, Finney, Christophersen, & Leibowitz, 1988); however, there are some mental health conditions that co-occur more frequently with encopresis. Higher prevalence of encopresis has been documented in children with anxiety/depression (Cox et al., 2002), ADHD (Mellon et al., 2013), early presenting bipolar disorder phenotype (Klages, Geller, Tillman, Bolhofner, & Zimerman, 2005), and developmental disabilities (von Wendt et al., 1990). Additionally, children with ASD and enuresis appear to demonstrate higher levels of comorbid psychiatric concerns when compared to matched peers (von Gontard et  al., 2015). It may be that the

Interdisciplinary Treatment for Pediatric Elimination Disorders

presence of a number of psychosocial stressors, including psychological comorbidities, places an individual at a higher vulnerability for elimination disorders.

Developmental Level One important stipulation in diagnosing elimination disorders in children is attention to the developmental level requirement outlined in the diagnostic criteria. Developmental delays commonly co-occur in children with ASD. Intellectual disability reportedly occurs in between 16 and 23% of children with ASD, while other developmental delays occur in between 23 and 67% of children with ASD (Zablotsky, Black, Maenner, Schieve, & Blumberg, 2015). These figures suggest that a good number of children with ASD may not meet strict diagnostic criteria for the diagnosis of an elimination disorder. Nevertheless, toileting difficulties are addressed medically and behaviorally in much the same fashion even without a formal diagnosis.

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with the clinician is helpful in improving pill swallowing in children with ASD and is appreciated by their parents (Ghuman, Cataldo, Beck, & Slifer, 2004). In treating pill-swallowing problems, several techniques can be helpful such as breaking the pills up/sprinkling on food if indicated, using a straw and cup of water, or teaching pill swallowing using a pill-swallowing kit with pills of increasing size (Beck, Cataldo, Slifer, Pulbrook, & Guhman, 2005). To overcome adherence issues in children with ASD due to pill-swallowing refusal and resistance, behavioral principles previously mentioned can be utilized. Finally, clinical experience indicates that it is helpful to appoint a family member who will oversee pill-­ swallowing practice and medication adherence at home.

 ot Following Bowel Management Plan N Bowel management plans may be difficult to follow for some families. It is important for clinicians to assess the level of family understanding and functioning prior to making recommendations. It is recommended that treatment plans are clear, concise, and easily understood by families. Nonadherence to Treatment Bowel tracking logs are one helpful way to encourage parent and child involvement and Pill Swallowing accountability. Logs may include a place for famAs mentioned, treatment of enuresis and encop- ilies to document time and amount of stool resis often requires medication, particularly in passed, accidents vs. dry or soil-free periods, and the management of comorbid constipation. One adherence to behavioral recommendations (e.g., cause for medication nonadherence is pill-­ toilet sit time and length) (Axelrod, Tornehl, & swallowing difficulties. While some medications Fontanini-Axelrod, 2016; Cocchiola, Michael, can be administered in liquid or chewable form, Martino, Dwyer, & Demezzo, 2012). many clinicians find that insurance coverage or availability of alternative forms are barriers to Motivational Factors use of these types of medication. Other times, the Unfortunately, sometimes parents or children best or only medication option is a pill/tablet. In have been dealing with the problem for so long these cases, it is essential that pill swallowing be that it becomes easy to adopt a style of helplessdiscussed with the family. Two issues with pill ness or exhaustion. It is important that parents and swallowing generally arise: ability and willing- caregivers retain hope that the problem can and ness. Interventions for difficulty with pill swal- will get better as this is the case for most individulowing will be chosen dependent on the als with elimination disorders. Parents and the contributing factor. A child with autism may also members of the treatment team should explore the exhibit challenging behaviors that interfere with level of confidence that the family has in their pill administration, but brief teaching and p­ ractice ability to manage the problem. Factors such as

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competing demands on the family, the averseness of following the treatment plan for both children and parents (and thus the ­ reinforcing consequences of nonadherence), as well as the parents’ experience and previous success using behavioral strategies (e.g., positive praise, planned ignoring) should be considered (Allen & Warzak, 2000). The team should help empower the family while assuring them that the team will provide ongoing support until problem resolution. The team should also discuss a timeline for getting “better” and lay out expectations about the amount of time and effort required to make and maintain progress. Progress should be recognized and praised. A reward program can and should be used when motivation is an issue for the child (e.g., Azrin & Foxx, 1971; Cicero & Pfadt, 2002).

of functional communication training (FCT), an evidence-based behavioral approach used for teaching children with ASD to ask appropriately for things they want rather than using problem behaviors (Carr & Durand, 1985). Regardless of the communication modality used (e.g., verbal language, sign language, use of pictures or augmentative devices), the intent is to teach the child that they can gain access to the bathroom (and associated reinforcers) when needed through an intentional request. Requesting to use the bathroom can actually be taught alongside other elements of behavioral treatment for elimination issues by beginning each prompted trip to the bathroom with a prompt for the child to practice making the bathroom request (Cicero, 2012; Cicero & Pfadt, 2002; LeBlanc et al., 2005). Prompts to request are then gradually faded over time.

Core Deficits of Autism

Sensory Differences Sensory differences are another symptom set highlighted within the ASD diagnostic criteria with relevance for elimination problems. Children with ASD may experience sensations in a heightened fashion, which may make them less likely to want to partake in stooling-related hygiene tasks, experience abdominal pain or cramping associated with constipation in a more intense fashion, or dislike the feeling of stool on their body. Conversely, children with hyposensitivity may be less likely to respond to the sensation that signals they need to urinate or defecate or be more likely to engage in fecal smearing. Evaluation of sensory differences will likely be helpful in developing a treatment plan that specifically targets sensory-related toileting behaviors.

 ack of Communication Skills L While the core features of elimination disorders involve repeated voiding in inappropriate places, the end goal of elimination disorder treatment (as well as toilet training itself) is for the child to demonstrate independent bowel/bladder management. Across developmental levels, that may mean the ability to request support in going to the bathroom, self-initiating trips to the bathroom, independent hygiene skills, the ability to locate bathrooms in public places, and even the ability to self-manage fluid and food intake in order to prevent future discomfort. Communication problems are inherent within the diagnosis of ASD, so many interventions for elimination problems within this population include procedures to specifically address the need to improve and encourage communication around elimination needs. Specifically, transitioning a child from being “schedule trained” (continent as long as they are prompted externally to use the bathroom) to more independent is critical for supporting increased independence at school and access to community settings. The embedded prompts within behavioral treatment plans must be gradually reduced and ideally eliminated. Frequently, this increased toileting independence is accomplished by incorporating elements

Issues in Interdisciplinary Intervention for Elimination Disorders in ASD Research Support/Assessment of the Evidence While still limited, the literature focusing on elimination disorders in children with ASD is growing. The benefit of using interdisciplinary care to treat elimination disorders in children

Interdisciplinary Treatment for Pediatric Elimination Disorders

with ASD is a more recent focus. Interdisciplinary or multidisciplinary teams, often consisting of medical subspecialists, nurses, physical therapists, and psychologists, are critical to addressing treatment-resistant enuresis in children, and proponents of this approach emphasize careful monitoring and a single, clear treatment plan for patients and families (Caldwell et  al., 2017). Other proponents of an interprofessional approach advocate for prioritizing the initial interview and physical to inform a team’s approach to treatment, with attention to managing stool impaction and managing fiber, fluids, and toileting schedule (Galal, Chong, Williams, & Phillips, 2007). In addition, a multidisciplinary approach involving dietary management, modification of toileting habits, and physical therapy found varying degrees of subjective and objective success, with most patients showing over 50% improvement in reported symptoms (Lau et  al., 2006). Finally, interdisciplinary care has been used as a successful strategy for toilet training (Stadtler & Burke, 1998). This approach involved medical management combined with multiple educational sessions incorporating behavior modification, the child’s perspective, and professional/patient collaboration. This level of collaboration across medical and behavioral health providers can be used as a framework for other models of interdisciplinary treatment. Clinicians are turning more attention toward treating such problems in individuals with autism and other developmental disabilities. Interdisciplinary teams are efficient in diagnosis of ASD (Gerdts et al., 2018) and are also helpful in targeting specific health-related issues such as feeding disorders (Sharp, Volhert, & Schahill, 2017; Chap. “Applied Behavior Analysis and Related Treatments”, this book). The call for interdisciplinary care for children with developmental problems and encopresis is not new, and an interprofessional approach has been effective on a small scale (Groves, 1982). It is also well known that a child with autism is best supported within a system that incorporates professionals from a wide range of disciplines. However, the literature remains sparse with regard to interprofessional care specifically targeting elimination

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disorders in children with autism spectrum diagnoses. Call, Mevers, McElhanon, and Scheithauer (2017) document the success of a multidisciplinary approach to treating encopresis in three children with developmental disabilities, with their team consisting of a pediatric gastroenterologist, behavior analysts, and nursing staff. This approach provides support for a multifaceted care team specifically for children with elimination disorders and developmental disabilities, including autism.

Common Comorbidities Other Elimination Disorders Enuresis and encopresis frequently co-occur in childhood. Some estimate that up to 55% of children with encopresis also qualify for a diagnosis of enuresis (Unal & Pehlivantürk, 2004). Other research has yielded estimates that about 24% of those with enuresis also have encopresis (Hansakunachai, Ruangdaraganon, Udomsubpayakul, Sombuntham, & Kotchabhakdi, 2005).

Pelvic Floor Dysfunction Pelvic floor dysfunction is sometimes seen in those with elimination disorders (Amselem et al., 2010; Swash, Henry, & Snooks, 1985), but the research on pelvic floor dysfunction in children is limited for children overall and nonexistent when considering children with comorbid ASD. Researchers continue to examine the efficacy of pelvic floor therapy/pelvic floor biofeedback for individuals with constipation (e.g., Lau et al., 2006), but controlled studies are needed for children.

Constipation Children with ASD have a higher incidence of constipation compared to typically developing peers and other groups (Chandler et  al., 2013),

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with some estimates of up to 34% prevalence in those with ASD (Ibrahim et  al., 2009). Further, those with ASDs often have moderate to severe levels of constipation, including megarectum (Afzal et al., 2003).

Summary Elimination disorders are a common problem that can negatively impact a child’s daily functioning and cause significant distress for a child and their caregivers. These difficulties are even more common in children with ASD, particularly for those with comorbid developmental delays or intellectual disability, as this subgroup may be more likely to have delayed attainment of urinary and/or fecal continence. Fortunately, a significant literature on the treatment of elimination disorders exists. Elimination disorders are thought of as biobehavioral disorders, thus necessitating interdisciplinary treatment of these conditions. Interdisciplinary management of elimination disorders, including medical and behavioral guidance, is effective at reducing accidents and increasing appropriate toileting behaviors. These same strategies have been shown to be effective in management of toileting difficulties in children with autism as well; however, modifications to standard treatment plans may need to be made in order to achieve success. Taking the child’s developmental level, current toileting skills, family strengths and challenges, and autism-specific factors into consideration when proceeding with treatment is advised. Treatment should be tailored to the child and family, and regular check-­ ins with treating providers are recommended. Further, strategies to reduce regression in toileting skills once continence is achieved should be discussed. For example, constipation is often thought of as a recurrent problem, and families will need to be taught how to identify constipation quickly and respond to it appropriately in order to prevent a recurrence of urinary or bowel incontinence. Additionally, a number of helpful treatment resources, including support books and online toolkits, exist for medical providers,

­ ental health providers, and families that are m specific to the treatment of elimination concerns in children with autism. That said, additional research on the efficacy of biobehavioral interventions for the treatment of children with autism and elimination disorders is needed to identify the most critical elements of treatment and how to best deliver these elements for children with neurodevelopmental disabilities. We also strongly advocate for efforts to improve dissemination of evidence-based interdisciplinary treatments for elimination disorders. Online delivery of a toilet training intervention in neurotypical populations has proven promising (Ritterband et  al., 2008), and this line of delivery may be incredibly helpful for children with autism and elimination disorders as well.

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Development of the Interdisciplinary Treatment Team Christine M. Raches, Rebecca Mc Nally Keehn, Jill C. Fodstad, and Noha F. Minshawi

When a child receives a diagnosis of autism spectrum disorder (ASD), the family has likely been given a significant, and often overwhelming, amount of information and many different recommendations and resources to consider. The family, caregivers, and professionals are then charged with developing an appropriate treatment team to target all impacted areas of development. Given the heterogeneous spectrum of abilities and deficits in ASD, each team should be assembled with careful consideration of the individual needs of each child. There is no one size fits all approach to ASD treatment. Research suggests that use of team-based care leads to better outcomes and child satisfaction than care that is poorly coordinated or isolated (Lemieux-Charles & McGuire, 2006). The word “team” implies a group of people who work together; the use of a team to manage care and C. M. Raches (*) · R. M. N. Keehn Riley Child Development Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA e-mail: [email protected] J. C. Fodstad · N. F. Minshawi Christian Sarkine Autism Treatment Center, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA Department of Psychiatry, Indiana University School of Medicine, Indianapolis, IN, USA

treatment of others has only been recognized as the preferred practice since the 1950s (Ogletree, Bull, Drew, & Lunnen, 2001). There are often several disciplines participating in the care of a child with ASD; however they may never have face-to-face contact with each other. This occurs even when each discipline is providing critical care for that individual (Schofield & Amodeo, 1999). The reality is that these disciplines often work separate from each other, as opposed to working in concert to create a coordinated team approach to care. In this chapter we discuss the characteristics of effective teams and types of teams in healthcare, review the practice recommendations for treatment of ASD, highlight the various disciplines that may be included on the treatment team, and offer a step-by-step approach for development of the interdisciplinary treatment team. This chapter also discusses some challenges and barriers to establishing an interdisciplinary team.

Characteristics of Effective Teams Despite the paucity of research on the effectiveness of treatment teams for children with developmental disabilities, including ASD, experience suggests that the team approach is highly desirable (Patel, Pratt, & Patel, 2008). A number of essential factors for developing effective teams have been identified, including “open and

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f­requent communication among team members, a clearly defined philosophy, a high degree of commitment to team process on the part of the team’s members, autonomy for team members to function within the scope of their expertise, ability of team members to cope effectively with the issues related to delivery of services, mutual respect and trust among team members and for the team process itself, and effective coordination of work flow” (Patel et al., 2008, p. 1385). Ogletree et  al. (2001) outline six core team attributes that impact team participation including mission statement, communication, familiarity, family-centeredness, leadership, and support. The authors suggest that teams take the time to define their mission; toward this effort, team members meet and share their philosophies, strategies for preparation, and potential biases and form a consensus around their team practices. Communication between team members is essential in order to remain apprised of successes and challenges. Team members must engage in open and honest dialogue with each other. Each team member on an interdisciplinary team is considered an “equal” and therefore is required to share ideas, challenges, and perspectives. Over time and as team members become familiar with each other, “the climate can emerge for the development of trust, nurturance, and communication” (Ogletree et al., 2001, p. 143). Perhaps most critical to the development of a team’s success is the role of the family as an equally important member of the team; families and professionals must work closely to identify shared goals and work together to meet those goals. The team leader can hold different positions depending on the needs of the team. The leader can be the decision-maker or facilitator but should always emphasize the need for family-­ centered practice and equal contribution across members. The final attribute highlighted by Ogletree and colleagues is the need for internal support of the teams’ members. Teams work together internally to solve problems and answer questions to promote their shared goals. Externally, team members rely on the support of institutions for time, financial, and other resources.

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Types of Healthcare Teams When forming their child’s treatment team, families may have the opportunity to assemble either an interdisciplinary or multidisciplinary team. These terms have been poorly differentiated and are often used interchangeably in the literature (Choi & Pak, 2006) resulting in confusion for healthcare providers and families alike. While the semantic difference may be subtle, it can be significant as it relates to functioning of the team and, thus, the care of the child. A multidisciplinary team often involves several disciplines approaching the child, and his or her respective needs, from their own perspective. This is often completed through several different appointments and meetings (Jessup, 2007). In a multidisciplinary team, each member of the team delivers services independently of other team members (Ogletree et al., 2001). There may not be a significant amount of collaboration or coordination of care in a multidisciplinary team. Interdisciplinary teams, in contrast, foster collaborative work and interdependence. An interdisciplinary team is one that works closely together within a single consultation or appointment. On an interdisciplinary team, the child and family is the center of the care and is involved in any treatment-­related discussions and plans (Jessup, 2007). While they may practice independently, team members on an interdisciplinary team come together for collaborative purposes. Everyone on the team, including the family, is considered to be equal and have equal decision-making abilities (Ogletree et  al., 2001). Interdisciplinary teams are one of the most widely accepted innovations related to mental healthcare, medical services, and social service delivery (Schofield & Amodeo, 1999). Disciplines are encouraged to question and challenge each other to work toward the best outcome for the child (Jessup, 2007). When considering ASD, an interdisciplinary team can be extremely effective and efficient in providing quality interventions to children.

Development of the Interdisciplinary Treatment Team

Practice Recommendations for ASD Over the last two decades, a number of professional groups have developed practice standards on the management of children with ASD (Filipek et al., 1999; Meyers & Johnson, 2007; Volkmar et al., 2014). These standards are based on review and synthesis of the extant literature on assessment, evaluation, and treatment of children and adolescents with ASD.  Following a thorough assessment and multidisciplinary evaluation, practice standards set forth by the American Academy of Child and Adolescent Psychiatry (AACAP; Volkmar et al., 2014) include four specific recommendations for treatment. These recommendations include obtaining (1) appropriate, evidence-based, and structured educational and behavioral interventions, (2) consideration of pharmacotherapy for specific target symptoms or comorbid conditions, (3) maintenance of an active clinician role in long-term treatment planning and family support, and (4) inquiry and guidance related to the use of complementary and alternative approaches to treatment. Though these guidelines infer the role of many, including pediatrician, subspecialists, educators, outpatient providers, and community agencies, there have been no published recommendations on how a family may most effectively tackle the challenging job of forming and coordinating their child’s treatment team.

 roviders Often Included P on the ASD Treatment Team Due to the heterogeneous and complex developmental and behavioral profile of ASD, developing a treatment team is a challenging task. Treatment teams should be developed in consideration of available local resources as well as the individual needs of the child. At times, team members may need to be “creative” in considering how to meet the child and family’s needs if a particular discipline is not available. While not all children and adults diagnosed with ASD will need to have all disciplines as a part of their treatment team, contributions of some members will

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be seen as critical for some children. We have used professional experience as well as critical review of the literature to determine which disciplines are most likely to be considered as potential team members. This list is not exhaustive but offers a variety of disciplines and providers to consider depending on the individual needs of the child and family. The roles and potential contributions of various team disciplines are discussed below (see Fig. 1).

Family The family and the child’s caregivers are easily the most important part of an interdisciplinary team. Interdisciplinary teams must employ a family-centered perspective: the family has a strong influence in creating treatment goals and making ongoing decisions about the care of the child (Ogletree et  al., 2001). Team members should work to meet family needs, and treatment should be based on parent/caregiver goals. This reflects the importance of the family in treatment and also enhances the family’s ability to promote change and success. Intervention goals for children with ASD must be focused on improving social functioning in the child’s natural environment. As a result, family involvement is imperative in identifying and meeting these goals. Each family presents with their own challenges, strengths, and beliefs surrounding treatment. As a result, partnering with families requires open and honest dialogue and a commitment to addressing any barriers that may arise. It also requires excellent listening skills, cultural awareness, flexibility, and sensitivity to the challenges of the family (Rogers & Dawson, 2010). Family and caregivers require unconditional positive regard from other providers and from the professionals working with their loved ones (Rogers & Dawson, 2010).

Primary Care Physician According to the American Academy of Pediatrics (2002), “medical care of infants, children, and

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Transitional Care

Educational Team Psychology

Physical Therapy

Genetics

Behavior Therapy

Applied Behavior Analysis

Child & Family

Medical Home

Speech Therapy

Neurology

Nutrition/ Feeding

Social Work

Occupational Therapy

Vocational Rehab

Fig. 1  Potential providers on a treatment team for child with ASD

adolescents ideally should be accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective. It should be delivered or directed by well-trained physicians who provide primary care and help to manage and facilitate essentially all aspects of pediatric care. The primary care physician (PCP) should be known to the child and family and should be able to develop a partnership of mutual responsibility and trust with them” (p.  184). Children with ASD, like all children with special healthcare needs, benefit from care provided by a medical home. This requires physicians to not only take time to listen to families but to also have knowledge about ASD and related community resources (Carbone & Farley, 2010).

Physicians also contribute to the team through knowledge related to understanding complex medical concerns and comorbid medical difficulties, including but not limited to nutrition, seizures, allergies, and sleep difficulties. Including a physician on a treatment team can promote learning and mastery of skills by controlling or minimizing medical conditions that may interfere with success (Rogers & Dawson, 2010).

Applied Behavior Analysis Applied Behavior Analysis (ABA) is often considered to be the treatment of choice for children with ASD (Vismara & Rogers, 2010). Baer, Wolf,

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and Risley (1968) first described the fundamental characteristics of strong ABA interventions: applied (i.e., targeting problems of social importance), behavioral (i.e., intervention must deal with measurable behaviors), analytic (i.e., require an objective demonstration that a procedure caused an effect), technological (i.e., described well enough to be replicated by those with training and experience), conceptual (i.e., arise from a theoretical base), effective (i.e., produce strong, socially important effects), and generalizable (i.e., able to operate in new environments and continue after treatment has ended). Meyers and Johnson (2007) concluded that “the effectiveness of ABA-based intervention in ASD has been well documented through five decades of research…” (p. 1164). Research continues to support the use of early intensive behavioral intervention (EIBI) in the treatment of ASD.  A review of research conducted by Granpeesheh, Dixon, Tarbox, Kaplan, and Wilke (2009) indicates that intensive programming following the principles of ABA has been shown to be effective in children ages 2–7  years; more hours of intervention is associated with better outcome. Further, young age at intake was related to later placement in a general education program in school. Research does not support a specific time or age in which ABA is no longer effective for individuals diagnosed with ASD. ABA should be considered as a priority for treatment when a child has limited skills or has deficits or behaviors that prevent success in other therapies or a school environment.

children diagnosed with ASD are eligible to receive school-based therapies and supports, if needed, to promote success in a school environment. Children diagnosed with ASD often begin their school careers with enrollment in a developmental preschool program at the age of 3 as they transition out of a Part C (early intervention) programs. The individual needs of the child must be considered when developing an Individualized Education Program (IEP; IDEA, 2004). When children are found eligible for special education services under the category of ASD, they may be more likely to gain access to other treatment interventions available in the school setting such as behavior interventions or social skills training (IDEA, 2004). However, even with a medical diagnosis of ASD, children may sometimes be found ineligible for school supports under the eligibility category of “autism spectrum disorder” if the educational team does not find symptoms associated with ASD to be impacting educational success. The child may then receive services under a different category (i.e., developmental delay, language impairment) and still receive supports such as speech, occupational, and physical therapy. Depending on the needs of the child, they may require a more intensive and/or restrictive environment (one-on-one paraprofessional support; self-contained classroom). The inclusion of school professionals on the interdisciplinary team can increase discussion and opportunities for continuity of care across multiple environments (Hess, Morrier, Heflin, & Ivey, 2008).

Educational Team

Psychology

Educators agree that children diagnosed with ASD often require supports and accommodations to be successful in a school environment. Including school professionals in the treatment team makes sense when one considers the amount of time spent in a school environment and the potential opportunities for intervention and growth. According to the Individuals with Disabilities Education Act (2004), beginning at the age of 3 and continuing up until the age of 22,

Psychologists are often seen as an integral part of the diagnostic and evaluation team but can continue to play a significant role in the treatment of ASD as well. When understanding appropriate and effective interventions, psychologists can share expertise related to skill acquisition and normative development (Rogers & Dawson, 2010). In addition, psychologists can be responsible for monitoring behavioral and mental health issues and can provide information regarding

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referrals and recommendations related to mental health needs, family functioning, and resources within the community. Treatment interventions should always be family-centered, and the psychologist can be helpful in maintaining this perspective (Rogers & Dawson, 2010).

Behavior Therapy Some children diagnosed with ASD will not require the intensive behavior therapy offered through ABA but may still benefit from working with a behavior therapist. Behavior therapists can have various training backgrounds and credentials but should have experience and expertise in treating children with neurodevelopmental disabilities. A behavior therapy program can work with caregivers to promote an understanding (e.g., how and why behaviors may be occurring) and development of skills to address the child’s behavioral deficits and excesses (Carbone & Farley, 2010).

Psychiatry While educational and behavioral interventions are the main treatments for children with ASD, medication may be considered as an adjunctive intervention to treat specific concerning symptoms such as irritability, anxiety, inattention, and other challenging behaviors (e.g., self-injury, aggression, hyperactivity/impulsivity, and stereotypies) (Mandell et  al., 2008; Oswald & Sonenklar, 2007). While many medications have been used in the treatment of these symptoms and many have been tested for effectiveness, only two medications (risperidone and aripiprazole) to date have received approval from the Food and Drug Administration for the treatment of ASD. The FDA has yet to approve a medication for treating the core characteristics of ASD (Autism Speaks, 2007). It is important for families to work closely with a healthcare provider they trust and who has experience in prescribing medications to children with ASD. A medication evaluation may be war-

ranted when problem behaviors pose a risk to the child or others, cause significant stress to the family, cause learning difficulties or pose challenges to the education team, or limit the child’s ability to be integrated into the community (Autism Speaks, 2007). Medicine does not help every child with ASD, even when targeting specific symptoms, and the risks and side effects require careful consideration and monitoring. Even when there is improvement from medicine, often the problem behavior is not eliminated completely.

Speech Therapy While speech delays are often considered to be a core feature of ASD, speech pathologists do much more than just treat expressive and receptive language disorders. Speech therapists are experts in language and communication from the prelinguistic phase to advanced language stages (American Speech-Language-Hearing Association, n.d.). They provide imperative knowledge about language and speech development as well as understanding the pragmatic aspects of language, a core deficit in individuals with ASD. The intervention provided by a speech language pathologist is likely to evolve as the individual responds to intervention and progresses through developmental stages. In addition, speech and language therapy can be instrumental in understanding and identifying alternative strategies, programs, and supports that may benefit a child with ASD.  Speech pathologists can help identify or locate an appropriate augmentative and alternative communication approach for the child and can be an imperative member of a treatment team in determining the most appropriate device (American Speech-­ Language-­Hearing Association, n.d.; Rogers & Dawson, 2010). Additionally, speech pathologists can offer advice on visual or written supports that can be useful in other treatment strategies, community settings, and across environments. Speech therapists can support the development of social interactions through the use of “scripts,” which are written or visual

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prompts used to initiate or sustain an interaction Occupational Therapy with others (American Speech-Language-­ Hearing Association; ASHA, n.d.). Speech Occupational therapy is a frequently recompathologists may also have expertise in the devel- mended and provided service for individuals opment of social stories, which are interventions diagnosed with ASD. Occupational therapy serused to explain social situations to children and vices can occur within a school environment or assist in teaching socially appropriate behaviors through an outpatient provider. The American and responses (Gray, White, & McAndrew, Occupational Therapist Association (AOTA) 2002). operates on the belief that “persons with an ASD Speech pathologists can provide treatment on are integral members of their families and coman individual basis or in group format. Groups munities and have the right to fully participate in benefit children who are struggling with social the educational, social, cultural, political, and interactions and social communication through economic life of society” (AOTA, 2009, p. 843). providing a safe therapeutic environment to prac- Occupational therapists work closely and collabtice these skills. Often, typically developing oratively with individuals, their families, and peers are included in the groups, and feedback is other professionals to provide a range of needed provided during direction instruction and resources and services to promote independence role-playing. in life (AOTA, 2010). The primary focus of occupational therapists is to enhance participation in activities of daily living and increase participaSocial Work tion within natural contexts and environments (Lavesser, Watling, & Tomchek, 2010). The role of social work on an interdisciplinary Occupational therapists can also be instrumental treatment team is “to assess, to support, and to in the treatment and development of intervenempower the child’s family so they have the tions related to sleep, education, work, play and understanding, the resources, and initiative to leisure, and sensory difficulties (Lavesser et al., maximize their child’s growth and development” 2010). In addition, occupational therapists can (Cook, 2000, p.  202). The social work team target motor development, self-care skills, and member can also be helpful in understanding and personal independence (Rogers & Dawson, identifying the family’s strengths and helping 2010). families find ways to use those strengths to benOccupational therapists provide expertise in efit treatment and intervention (Cook, 2000). understanding and treating sensory responsivity Families of children with ASD often report feel- and can use that information to stimulate and proing overwhelmed by navigating the needs of their mote learning (Rogers & Dawson, 2010). While child and the resources that may be available to sensory integration therapy is often viewed as a them following diagnosis. The task of under- needed therapy in the treatment of ASD, more standing the complex web of healthcare financ- research is needed to support efficacy. Metanalysis ing options, waivers, applications, and resources of the available research has shown limited to can be made manageable through the support of absent treatment effectiveness (Lang et al., 2012). social work. Social work may also be considered as an integral part of the team when family barriers are limiting success and support directly to Other Medical Specialties the family is needed. ASD is often associated with a variety of complex medical conditions. As such, for some children with ASD, it may be necessary to include medical specialists on the treatment team. This decision should be based on the individual needs

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and medical history of the child. Common subspecialties involved in the treatment of ASD include developmental-behavioral pediatrics, neurology, medical genetics, and gastroenterology. Developmental-behavioral pediatricians are board-certified pediatricians who have completed subspecialty training in developmental and behavioral pediatrics. Developmental-behavioral pediatricians are often involved in the diagnosis of children with neurodevelopmental disabilities, especially those with complicating medical conditions. They also often assist families in identifying treatment needs and prescribing medications for the child. Families often maintain a general pediatric provider while consulting with a developmental-behavioral pediatrician as needed. Child neurologists specialize in identifying and treating disorders of the nervous system and brain. A neurologist may be consulted if there is a history of developmental delay, regression in skills, history of motor development problems, sleep problems, or concern of seizures or the family has a history of seizure disorders. The reported prevalence of epilepsy in ASD ranges from 5% to 38%, putting children on the autism spectrum at a greater risk than the general population (Frye et al., 2013). Neurologists may order a variety of different medical tests and evaluations (e.g., MRI, EEG) depending on the presenting problems of the child and the medical history of the child and family. A medical geneticist may be consulted if there is a concern of a genetic abnormality which may be contributing to the symptoms or behaviors associated with ASD. Current medical guidelines recommend chromosomal testing and a Fragile X analysis when a diagnosis of ASD is made (Shen et  al., 2010). The inclusion of a chromosomal microarray demonstrated the highest detection rate among available genetic tests. However, it is important to consider the clinical utility of this testing as only a small percentage (< 8%) of individuals are identified as having a genetic abnormality and not all findings are associated with a known clinical profile or syndrome.

Gastroenterology may be included in a child’s treatment team if there are concerns related to digestive problems or toileting. In fact, children with ASD are significantly more likely to suffer from digestive problems (McElhanon, McCracken, Karpen, & Sharp, 2014). Concerns that may lead to a consultation by a gastroenterologist often include constipation, diarrhea, abdominal discomfort, or difficulties with toilet training after the age of 6 (Horvath & Perman, 2002).

Nutrition and Feeding Therapy Perhaps one of the most common concerns for children with ASD is nutrition and feeding. Children with ASD are often reported to be selective and restrictive eaters. In a study by Cornish (2002), 38% of families reported that their children with ASD followed repetitive patterns of food choice (eating the same foods over time). Studies examining the diets of children with ASD have found nutritional deficits in some vitamins and minerals with noted deficits in calcium; vitamins A, C, and D; and iron (see Cornish, 2002 for review). Including nutrition and/or feeding expertise in the treatment of ASD may be a needed component. In many cases, the inclusion of a nutritionist on an interdisciplinary team can work closely with an occupational or speech therapist to target feeding issues and ensure that nutritional needs are being met. Many families question whether special diets (e.g., gluten- and casein-free diets) may work for reducing symptoms in their child with ASD.  While research does not support the effectiveness of special diets for symptom reduction, discussion surrounding diet, nutrition, and food choices can be an important component of ASD treatment (Cornish, 2002).

Physical Therapy For some children with ASD, gross motor concerns, motor abnormalities, and difficulties with tone and strength may be present, and physical

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therapy should be considered as a part of the treatment team (Bhat, Landa, & Galloway, 2011). Research suggests that children with ASD may have poor upper- and lower-limb coordination on tasks requiring visual motor dexterity as well as balance, agility, and speed. In addition, children with ASD may also have atypical motor patterns that may impact play and socialization (Bhat et al., 2011). It is often recommended that motor planning activities be included in ASD interventions. The popularity of therapeutic horseback riding, or hippotherapy, as a treatment intervention for children with ASD is growing. Therapeutic horseback riding “is defined as using horseback riding treatment to improve posture, balance, and mobility while developing a therapeutic bond between the child and horse (Bass, Duchowny, & Llabre, 2009). Hippotherapy can be accessed through an occupational therapist, speech pathologist, or physical therapist. Studies have shown that it can be an effective intervention for children with ASD in improving sensory integration, directed attention (and reducing distractibility), and social motivation (Bass et al., 2009).

adult with ASD (Watson, Parr, Joyce, Mays, & Le Couteur, 2011). The optimal goal of transitional care is to provide a transition that is uninterrupted, psychosocially sound, developmentally appropriate, and comprehensive (Blum et  al., 1993). It is important to remember that transitioning into adult care can be a time of anxiety and concern for families and young adults. It is also assumed that transition occurs at different rates for each person and care will need to be flexible to meet the needs of each family (Blum et  al., 1993; Watson et  al., 2011). Yet, research suggests that young adults with mental health needs and neurodevelopmental disabilities are likely to fall through the cracks and not have an adequate transitional care plan (Watson et  al., 2011). The inclusion of a transitional care professional on the interdisciplinary team can assist with this process and smooth the transition for all involved. Watson et  al. (2011) argue that the inclusion of transitional care into an interdisciplinary team will promote future sustainability and knowledge regarding transitional care to benefit not only the existing family but families to come in the future.

Transitional Care

Vocational Rehabilitation

As a child enters into middle and high school, the existing treatment team should consider the addition of a team member with expertise and knowledge in transitional care. Transitional care is important for families and those affected with ASD as they transition from pediatric to adult care and treatment. Transitional care is defined as “a purposeful, planned process that addresses the medical, psychosocial, and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centered to adult-oriented healthcare systems” (Blum et al., 1993, p. 570). There has long been an identified need to develop a transitional model to guide families of young adults with ASD. However, this model has not been developed, and families must struggle to “fit” transitional care models for other complex health needs into the individual needs of a young

As children continue to age and move through the stages of development, many families find that the focus takes a necessary turn away from school and educational interventions toward future planning and independence. Vocational rehabilitation can be accessed through the US Department of Education and has a primary goal of helping families and young adults maximize their future employment opportunities by providing supports and guidance. Vocational rehabilitation is available to any person with a disability that requires assistance in obtaining employment. The degree of supports is individualized for each client but can include an assessment, assistance with job search, accessing assistive technology, and even providing on-the-job training (Lawer, Brusilovskiy, Salzer, & Mandell, 2009). Young adults with ASD often have very different needs related to employment compared to

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other disabilities. As a result, having a person affiliated with vocational rehabilitation on an interdisciplinary team can be crucial. This person can guide the team on establishing treatment goals that work toward future employment and can assist in understanding the skills and deficits that may impede finding a job or career (Lawer et al., 2009).

Coordinating the Treatment Team: The Case for Care Coordination A child’s care is optimized when all members of the treatment team work in coordination toward complimentary goals. Yet, according to the National Survey for Children’s Health, nearly half of families raising children and youth with special healthcare needs in the United States report not having access to needed coordination services (Data Resource Center for Child and Adolescent Health, 2012). The Association for Maternal and Child Health Programs (2014) and American Academy of Pediatrics (2014), as well as a multitude of other healthcare organizations, identify care coordination as a standard of care for children and youth with special healthcare needs. Pediatric care coordination is defined as “a child and family-centered, assessment driven, continuous, team-based activity designed to meet the bio-psychosocial needs of children and youth while enhancing person and family care-giving skills and capabilities” (Antonelli, McAllister, & Popp, 2009). The American Academy of Pediatrics (2014) identifies that care coordination is a team- and family-driven process that is critical for improving health outcome. They recommend that care coordination (1) be family-centered, proactive, planned, and comprehensive, (2) promote family self-care skills and independence, and (3) emphasize cross-organizational relationships. The plan of care model of care coordination (McAllister, 2014) is designed to improve medical, social, functional, and financial outcomes and includes four key elements of the care planning process: (1) identification of the needs and strengths of the family; (2) building effective, essential partner-

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ships; (3) creating a plan of care, which documents healthcare events, needed treatments and related ongoing issues, and stated goals between the healthcare team and family; and (4) implementing the plan of care and, over time, documenting the achievement and evolution of shared goals. According to the American Academy of Pediatrics (2014), care coordination services for children and youth with special healthcare needs fall under the purview of the high-performing medical home. Partnerships across various settings, including health, education, child care, nutrition, mental/ behavioral/ emotional health, social services, and community organizations, drive the process of care coordination. Like many children and youth with special healthcare needs, the treatment team of children with ASD is complex and involves many members from various disciplines. Families struggle to understand which disciplines need to be involved given their child’s own unique strengths and areas of need. Families must keep track of various clinical appointments, often in different settings with complex scheduling systems. Families’ efforts to access and pay for necessary evidence-based services are met by system barriers that often seem (or are) insurmountable. Care coordination holds promise for supporting families in meeting their children’s needs, improving family functioning, optimizing child health outcomes, and navigating systems and payment. Although a core function of the medical home is to provide care coordination, many children and families, including those with ASD, do not have access to this necessary service within their primary care medical practice or elsewhere. Instead families are required to take this burden on themselves, often learning by trial and error and incurring the high cost of stress and time.

Building the Treatment Team: Recommended Steps We propose a stepwise model for building a treatment team for a child with ASD. In an interdisciplinary treatment team, treatment is an extension of the assessment process whereby team ­members

Development of the Interdisciplinary Treatment Team

work together to share treatment ideas and practices with a shared goal in mind (Ogletree et al., 2001). This model is based on the authors’ collective experiences in leading and/or participating in interdisciplinary assessment and treatment teams for children with neurodevelopmental disabilities, including ASD. The model assumes that creation of the team follows a multi- or interdisciplinary assessment from which a diagnosis is made. See Fig. 2 for a case example.

 tep 1: Share Diagnostic Results S and Reports with Primary Care Physician and Other Providers Following an assessment in which a diagnosis of ASD is made, it is critical that results be shared with the child’s existing providers, most importantly the PCP. The family is encouraged to make an appointment with their PCP to review the diagnosis and results and recommendations of the assessment team. The family and PCP can discuss the various needs of the child, potential disciplines that may be sought when building the team, and identify options for a team leader.

Step 2: Identify a Team Coordinator Perhaps one of the most important, but challenging, steps to building the treatment team is choosing a leader. Leadership choice will depend on which services may be available to the family and the role the service providers envision themselves playing on the team. Professional groups, including the American Academy of Pediatrics (2014), suggest that a child’s (primary care) medical home should be responsible for coordinating all aspects of the child’s care. Yet, most families identify that their primary care provider is not equipped to offer high-quality care coordination that meets their child’s needs. Very often, the parent(s) or caregiver(s) of the child, by default, become the team leader and must coordinate their child’s team. They take on the time-­intensive burden of managing and ensuring effectiveness of the child’s team.

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Families learn how to best coordinate their child’s care through trial and error, persistence, and self-teaching; they often become a community’s best source of knowledge and advocacy on access to services, teaching other families and providers along their own journey. There are a number of ways that families build their knowledge about diagnosis, advocacy, accessing services, and coordinating their child’s care. With the rise in awareness around ASD, many states and communities have developed local resources including autism resource centers, nonprofit organizations that provide education and advocacy training, and independent family support groups. States have their own systemic efforts to address the needs of children with ASD, including programs that offer services and interventions through waiver programs. There is an increasing array of online forums, blogs, and support groups that many families report they benefit from. While there are many excellent sources of information available to families and team coordinators, we cannot express the importance of relying on reputable and evidence-driven information. Before beginning any intervention, medical or behavioral, it is important to consult with a qualified healthcare professional and to evaluate the evidence for each intervention, as there are dangerous products and interventions that claim to “cure” autism (e.g., hyperbaric oxygen therapy, chelation therapies, mineral solutions).

 tep 3: Establish Family-Centered S Goals and Treatment Priorities The family and team coordinator may now begin to facilitate the process of gathering for an initial planning meeting with the purpose of reviewing the assessment report and associated recommendations, as well as establishing and documenting family-centered goals. Although each discipline (and potentially provider) may have individual goals according to their domain of expertise, it is ideal for the family and team members to develop mutual shared goals. This may be accomplished by the team coordinator leading the family and

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Background Information: Sarah is a 4 year old girl diagnosed with ASD following an interdisciplinary evaluation at a local children’s hospital. At the time of diagnosis, she was enrolled in a developmental preschool program and received special education supports.

AStep 1: Share diagnostic results and reports with PCP & other providers Following her evaluation, Sarah’s parents set up a consultative appointment with her PCP to discuss the recommendations and get necessary prescriptions for outpatient therapy evaluations (Speech and Occupational therapy, ABA therapy). Sarah's parents shared a copy of the recommendations with the school and requested that the case conference committee meet to update her Individualized Education Plan.

Step 2: Identify a team coordinator Sarah's PCP referred the family to a care coordination program at the children's hospital with the primary goal to identify a team coordinator who would assist with developing the treatment team and accessing needed services. The social worker from the care coordination program assumed the role of team coordinator, along with the family. Step 3: Establish family centered goals and treatment priorities The team coordinator met with the family to prioritize treatment goals for Sarah. Recommendations from the interdisciplinary evaluation, as well as the family's identified needs and wants, resulted in the following negotiated goals: 1) identify an ABA program that accepts the family's insurance; 2) while waiting to access ABA, work with a psychologist to decrease negative behaviors through development of parenting strategies; 3) access outpatient speech and occupational therapy to supplement services offered through the school. Sarah's family and medical history, along with negotiated goals, were documented in a Shared Plan of Care.

Step 4: Form the treatment team Sarah's family and the team coordinator disseminated the Shared Plan of Care to the PCP and school. The family and providers worked together, with the leadership of the team coodinator, to identify the other team members that were needed to meet the family's goals. Other identified providers inlcuded: ABA Center, psychologist, outpatient speeach and occupational therapist, and gastroenterologist (to rule out medical reason for toileting delay). The team coordinator also worked with the family to identify and access supplemental healthcare financing programs to fund necessary therapies.

Step 5: Regular team meetings and review The treatment team and those involved in Sarah’s care were kept up to date on treatment progress and challenges through team emails, phone calls, and updates disseminated through the the Shared Plan of Care. The team coordinator was able to coordinate and take notes on all ideas and delegate tasks to treatment team members. It is estimated the team meetings and contacts took 10-30 minutes per week.

Step 6: Review and re-evaluate goals regulalry The treatment team, including the family, convened in person every six months to review Sarah's Shared Plan of Care, assess progress against family goals, and add any goals that had emerged in the previous period. Any new providers were providers were invited to the meeting. Successes and Challenges: Sarah’s family lived in an area with few resources for children with ASD, and thus waitlists were long. Further, the family’s insurance policy did not cover many of the services that were needed. Despite these challenges, the treatment team was able to effectively provide some therapies during the six months that it took to initiate ABA. The school was able to implement an AAC system, which allowed for Sarah and the psychologist to target toileting delays and challenging behaviors. The schoolbased and outpatient occupational therapist were able to collaborate to address sensory challenges. Sarah’s family reported that the interdisciplinary team has been successful in working together for Sarah’s benefit. Fig. 2  Case Example: Development of a treatment team for a 4 year old with ASD

Development of the Interdisciplinary Treatment Team

team through an assessment of potential unmet needs and lagging or lacking skills areas.

Step 4: Form the Treatment Team Choosing which disciplines and providers to join the team will depend on the individual needs of the child and the availability of providers in the family’s geographical area. Additionally, the family and PCP or team coordinator will need to design the team with the constraints of the family’s healthcare financing (e.g., insurance) resources in mind. Once the disciplines are chosen, the PCP can facilitate referrals and write any needed prescriptions. It is always optimal for the team coordinator to reach out the other team members to invite collaboration and share information.

 tep 5: Regular Team Meetings S and Review When working within an interdisciplinary team, it is essential that all members communicate with each other to keep team members apprised of successes and challenges and progress against goals. One potential method of communication, especially when team members deliver services in the same location (e.g., the family’s home) or institution, is the “Team Treatment Notebook” (Rogers & Dawson, 2010). In this method, each person working with the child can leave a note following their treatment session; this allows each team member to stay up to date on treatment, goals, and intervention strategies. This is also an opportunity for family members to communicate with treatment providers about any changes in routine, illnesses, or successes in the home. Used effectively, a treatment notebook allows everyone to have access to session summaries and current challenges and successes with the client. Another strategy to increase communication between team members is regular team meetings. The meetings provide a time to discuss effective strategies and future goals and intervention strat-

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egies. Additionally, it allows for an opportunity to come together and share ideas and to think of the individual and their treatment as a “whole.” In any team situation, it is critical for providers to be able to share records and collaborate. Providers should seek out releases of information in order to communicate and share medical records with other team members.

 tep 6: Review and Re-evaluate Goals S Regularly Regular review of progress, re-evaluation of goals, and ensuring that the appropriate disciplines are included in the child’s treatment team are critical for ongoing progress. The team will need to ensure that the child is regularly assessed so that goals and needs are current and appropriate. As the child develops, there will likely be evolving needs for different types of services and providers. We recommend that the family and the team coordinator convene an annual review meeting with all team members.

Challenges to Building and Sustaining a Team There are a myriad of challenges to building and maintaining an effective care team for children with ASD. Choi and Pak (2007) have outlined a variety of barriers faced by teams in healthcare, including poor selection of disciplines and team members, poor team process and function, lack of proper measures to evaluate success, language problems, insufficient time and funding, institutional constraints, discipline conflicts, team conflicts, lack of communication between disciplines, and unequal power among disciplines. In our collective experiences in building teams for children with ASD, we have found that barriers to team success generally fall into two categories: difficulties within the team itself and external institutional and systemic barriers. The providers that make up a team often work in disparate settings and may have significantly differing goals and perspectives. Different institutions use various

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electronic medical record systems often that are not compatible with each other or support record sharing with other team members. Further, clinicians are pressured to maximize clinical loads, meet high productivity requirements, and provide services that insurance will reimburse for. Most insurance companies will not reimburse for any services (such as team meetings) that are not direct clinical care. These factors place significant limitations on providers’ ability to provide children and their families the type of coordinated care that they need and deserve. Additionally, families often experience poor access to providers (especially in rural and underserved areas) or long wait lists. They face the difficult decision of how to best allocate their own time and available resources.

Conclusion and Future Directions Building an interdisciplinary treatment team for a child with ASD is a complex process that must be individualized for every child and family. The family should be considered the most important part of a child’s interdisciplinary team; their input, expertise, and wishes for their child should be valued and used to promote team success and positive outcomes for the child. Each interdisciplinary team can include a variety of different providers depending on the needs of the child and family and availability of services. Often teams include family, medical, educational, behavioral, and community providers. It is critical that team members employ evidence-based interventions and practices that adhere to recommended practice parameters for children with ASD. In this chapter, we have outlined a six-step process for building an interdisciplinary treatment team for a child with ASD. We recommend that families and providers use these steps as a guide, which can be flexibly adapted to each team’s unique needs and available resources. One of the most significant challenges to building the treatment team for a child with ASD can be selecting a team leader. Because insurers do not typically cover care coordination services, families are often charged with coordinating their

own child’s team. Additional barriers including those internal (e.g., communication among providers, varying roles and goals of members) and external (e.g., institutional demands for clinical productivity) to the team complicate this process. However, as awareness and support around ASD has grown, so has knowledge and resources; families are experiencing more options and opportunities for their children with ASD. In the future, the healthcare system must recognize the very significant needs of children with ASD, the burden that families carry for meeting these needs, and the potential value that care coordination services hold. Payment sources for care coordination, and the work of the interdisciplinary team, must be identified and made available. Evaluation of various models of team-based care coordination and their impact on child and family outcomes must be carried out and disseminated.

References American Academy of Pediatrics Council on Children with Disabilities and Medical Home Advisory Committee. (2014). Child and family centered care coordination: A framework for integrating care for children and youth across multiple systems. Pediatrics, 133(5), e1451–e1460. American Academy of Pediatrics Medical Home Initiatives for Children with Special Needs Project Advisory Committee. (2002). Policy statement: The medical home. Pediatrics, 110(1), 184–186. American Occupational Therapy Association. (2009). AOTA’s societal statement on autism spectrum disorders. American Journal of Occupational Therapy, 63(6), 843–844. American Occupational Therapy Association. (2010). The scope of occupational therapy services for individuals with an autism spectrum disorder across the life course. American Journal of Occupational Therapy, 64(suppl), S125–S136. American Speech-Language-Hearing Association. (n.d.). Autism. Retrieved from http://www.asha.org/ PRPSpecificTopic.aspx?folderid=8589935303§i on=Treatment Antonelli, R., McAllister, J., & Popp, J. (2009). Making care coordination a critical component of the pediatric health care system: A multidisciplinary framework. New York: The Commonwealth Fund. Association of Maternal and Child Health Programs (AMCHP). (2014). Standards for systems of care for children and youth with special health care needs.

Development of the Interdisciplinary Treatment Team Washington, DC: Lucille Packard Foundation for Children’s Health. Autism Speaks. (2007). Medicines for treating autism’s core symptoms. Retrieved from: https:// www.autismspeaks.org/what-autism/treatment/ medicines-treating-core-symptoms Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1, 91–97. Bass, M. M., Duchowny, C. A., & Llabre, M. M. (2009). The effect of therapeutic horseback riding on social functioning in children with autism. Journal of Autism and Developmental Disorders, 39, 1261–1267. Bhat, A.  N., Landa, R.  J., & Galloway, J.  C. (2011). Current perspectives on motor functioning in infants, children, and adults with autism spectrum disorders. Physical Therapy, 91, 1116–1129. Blum, R., Garell, D., Hodgman, C., Jorissen, T., Okinow, N., Orr, D., & Slap, G.  B. (1993). Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the Society of Adolescent Medicine. Journal of Adolescent Health, 14, 570–576. Carbone, P. S., & Farley, M. (2010). Primary care for children with autism. American Family Physician, 81(4), 453–460. Choi, B. C. K., & Pak, A. W. P. (2006). Multidisciplinarity, interdisciplinarity and transdisciplinarity in health research, services, education and policy: 1. Definitions, objectives, and evidence of effectiveness. Clinical Investigative Medicine, 29, 351–364. Choi, B. C. K., & Pak, A. W. P. (2007). Multidisciplinarity, interdisciplinarity, and transdisciplinarity in health research, services, education and policy: 2. Promotors, barriers, and strategies of enhancement. Clinical Investigative Medicine, 30(6), E224–E232. Cook, D. S. (2000). The role of social work with families that have young children with developmental disabilities. In M. J. Guralnick (Ed.), Interdisciplinary clinical assessment of young children with developmental disabilities (pp.  201–220). Baltimore, MD: Brookes Publishing Co. Cornish, E. (2002). Gluten and casein free diets in autism: A study of the effects on food choice and nutrition. Journal of Human Nutrition and Dietetics, 15, 261–269. Data Resource Center for Child and Adolescent Health. (2012). National Survey for children’s health. http:// childhealthdata.org/browse/survey?q=2456&r=1. Filipek, P. A., Accardo, P. J., Baranek, G. T., Cook, E. H., Dawson, G., Gordon, B., … Minshew, N.  J. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29(6), 439–484. Frye, R. E., Rossignol, D., Casanova, M. F., Brown, G. L., Martin, V., Edelson, S., … Adams, J.  B. (2013). A review of traditional and novel treatments for seizures in autism spectrum disorder: Findings from a systematic review and expert panel. Frontiers in Public Health, 13(1), 1–26.

187 Granpeesheh, D., Dixon, D. R., Tarbox, J., Kaplan, A. M., & Wilke, A.  E. (2009). The effects of age and treatment intensity on behavioral intervention outcomes for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 3, 1014–1022. Gray, C., White, A.  L., & McAndrew, S. (2002). My social stories book. Philadelphia: Jessica Kingsley Publishers. Hess, K. L., Morrier, M. J., Heflin, L. J., & Ivey, M. L. (2008). Autism treatment survey: Services received by children with autism Spectrum disorders in public school classrooms. Journal of Autism and Developmental Disorders, 38, 961–971. Horvath, K., & Perman, J. A. (2002). Autism and gastronintestinal symptoms. Current Gastroenterology Reports, 4(3), 251–258. Individuals with Disabilities Education Act, 20 U.S.C. § 1400 (2004). Jessup, R. L. (2007). Interdisciplinary versus multidisciplinary care teams: Do we understand the difference? Australian Health Review, 31(3), 330–331. Lang, R., O’Reilly, M., Healy, O., Rispoli, M., Lydon, H., Streusand, W., … Giesbers, S. (2012). Sensory integration therapy for autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders, 6(3), 1004–1018. Lavesser, P. D., Watling, R., & Tomchek, S. (2010). The scope of occupational therapy services for individuals with an autism spectrum disorder across the life course. American Journal of Occupational Therapy, 64(6), 125–136. Lawer, L., Brusilovskiy, E., Salzer, M.  S., & Mandell, D. S. (2009). Use of vocational rehabilitative services among adults with autism. Journal of Autism and Developmental Disorders, 39, 487–494. Lemieux-Charles, L., & McGuire, W.  L. (2006). What do we know about health care team effectiveness? A review of literature. Medical Care Research and Review, 63(3), 263–300. Mandell, D. S., Morales, K. H., Marcus, S. C., Stahmer, A. C., Doshi, J., & Polsky, D. E. (2008). Psychotropic medication use among Medicaid-enrolled children with autism spectrum disorder. Pediatrics, 121(3), e441–e448. McAllister, J. (2014). Achieving a shared plan of care with children and youth with special health care needs: A white paper and implementation guide. Palo Alto, CA: Lucille Packard Foundation for Children’s Healthcare. McElhanon, B. O., McCracken, C., Karpen, S., & Sharp, W. (2014). Gastrointestinal symptoms in autism spectrum disorder: A meta-analysis. Pediatrics, 133(5), 872–883. Meyers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120(5), 1162–1182. Ogletree, B. T., Bull, J., Drew, R., & Lunnen, K. Y. (2001). Team-based service delivery for students with disabilities: Practice options and guidelines for success. Intervention in School and Clinic, 36(3), 138–145.

188 Oswald, D.  P., & Sonenklar, N.  A. (2007). Medication use among children with autism-spectrum disorders. Journal of Child and Adolescent Psychopharmacology, 17(3), 348–355. Patel, D. R., Pratt, H. D., & Patel, N. D. (2008). Team processes and team care for children with developmental disabilities. Pediatric Clinics of North America., 55, 1375–1390. Rogers, S. J., & Dawson, G. (2010). Early start Denver model for young children: Promoting language, learning, and engagement. New York: Guilford Press. Schofield, R. F., & Amodeo, M. (1999). Interdisciplinary teams in health care and human services settings: Are they effective? Health Social Work, 24(3), 210–219. https://doi.org/10.1093/hsw/24.3.210 Shen, Y., Dies, K.  A., Holm, I.  A., Bridgemohan, C., Sobeih, M. M., Caronna, E. B., … Autism Consortium

C. M. Raches et al. Clinical Genetics/DNA Diagnostics Collaboration. (2010). Clinical genetic testing for patients with autism spectrum disorders. Pediatrics, 125(4), e727–e735. Vismara, L. A., & Rogers, S. J. (2010). Behavioral treatments in autism spectrum disorder: What do we know? Annual Review of Clinical Psychology, 6, 447–468. Volkmar, F., Siegel, M., Woodbury-Smith, M., King, B., McCracken, J., & State, M. (2014). Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 53(2), 237–257. Watson, R., Parr, J. R., Joyce, C., Mays, C., & Le Couteur, A.  S. (2011). Models of transitional care for young people with complex health needs. Child: Care, Health, and Development, 37(6), 780–791.

Psychology Lindsey W. Williams, Hillary H. Bush, and Lauren Fishbein

Introduction Psychologists have a long history of involvement in the diagnosis and treatment of autism spectrum disorder (ASD), contributing with other professionals to improved understanding of ASD over the decades. As part of an interdisciplinary team, the psychologist’s training and experience are particularly helpful throughout the diagnostic process, conducting assessments for educational or transition planning, assessing for common comorbid psychiatric and behavioral problems, assessing for change in functioning over time, and in using this information in collaboration with the interdisciplinary team to develop effective treatment plans. With regard to treatment, the role of the psychologist in the team is often to address psychiatric and behavioral concerns through an ASD lens in a way that facilitates participation and success in other treatments and L. W. Williams (*) TEACCH Autism Program, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA e-mail: [email protected] H. H. Bush Learning and Emotional Assessment Program (LEAP), Massachusetts General Hospital, Boston, MA, USA Harvard Medical School, Boston, MA, USA L. Fishbein Nationwide Children’s Hospital, Columbus, OH, USA

daily activities. This often involves collaboration with other professionals, including other members of the interdisciplinary team. Across the life-­ span, the psychologist may be more or less involved depending on the current needs of the individual. On a larger scope, the psychologist’s research training can be utilized to improve program development and assess means to improve service provision. This chapter will discuss each of these contributions in more detail.

Contributions to the Diagnostic Process The evaluation and diagnosis of mental health, behavioral disorders,  and developmental disorders have been a fundamental focus of psychology since the beginning of the discipline, and psychologists receive substantial training in using validated assessments with good psychometric qualities to better understand and address these concerns. Selecting the appropriate assessment tools, understanding their psychometric properties in different populations, and understanding how different social backgrounds or concurrent diagnoses impact ASD presentation are critical components to accurate diagnosis. There are many different areas which need to be included in diagnostic assessments, including developmental history and onset of symptoms, medical history including sleep and eating habits,

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psychological/psychiatric history, risk assessment for suicidal ideation, social development, academic and work history and accommodations, family history and cultural background, and behavioral presentation that may overlap with presentation of other disorders. The psychologist’s training prepares them to conduct careful differential diagnosis in instances where intellectual disability, attention-deficit/hyperactivity disorder, anxiety, or other comorbidities may influence symptom presentation. Like developmental-­behavioral pediatricians, the psychologist on the team is trained in developmental patterns and differences in the developmental process that may be indicative of ASD versus other neurodevelopmental disorders.

Choosing Measures Application of the psychologist’s training in psychological and behavioral assessment is important in deciding which measures to administer to ensure that concerns are being sufficiently evaluated. For example, using a cognitive test might give good information about strengths and weaknesses in intellectual functioning, but for the purposes of differential diagnosis, the team will also need to evaluate abilities outside the scope of the test, such as delays in social understanding, executive functioning, or compensatory adaptive skills. ASD-related factors should also be considered; for example, individuals with poor receptive and/or expressive language skills may perform more poorly on tests with significant verbal demands (e.g., WISC-IV) but perform better on measures of cognitive intelligence that require little or no verbal instruction (e.g., the Leiter-R). (Of note, stereotypical large differences between verbal and nonverbal skills often seen in young children with ASD often decrease over time; see Klinger, O’Kelley, & Mussey (2009) for further discussion.) Which type of cognitive test is most suitable for the situation often depends on the reason for the assessment. Some agencies (e.g., some school systems) only accept comprehensive or even specific measures when making decisions about service eligibility,

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even if the assessing psychologist thinks another cognitive test would be more suitable for a particular individual. In such cases, the psychologist may choose to give multiple measures of the same construct in order to provide a fuller picture of the individual’s cognitive profile. Some measures have a wider age range, which is relevant if the assessment is planned to be one of a series of administrations to track development over time. In general, the assessment battery is likely to include measures related to development, cognition, and executive functioning; clinical observations and structured interviews; inventories and questionnaires related to adaptive, emotional, social, and behavioral functioning; medical and psychological records and reported history; and assessment of any challenging behaviors. The psychologist will use training in these areas to integrate findings and to make choices about additional information that may be needed throughout the course of the assessment. For example, it is not uncommon for conflicting information to arise among caregiver report, teacher report, and clinical observation, which may indicate the need for additional assessment or follow-up. The psychologist can draw from their training to determine which additional methods and measures to employ to obtain information critical to an accurate differential diagnosis. In many occasions, measures are needed for diagnosis or treatment planning which only the psychologist or similarly trained and qualified clinicians will be able to administer and interpret. For example, cognitive tests such as the Stanford-­ Binet or Wechsler intelligence scales (WISC, WAIS, and WPPSI) require the highest level of qualification to purchase and administer (e.g., www.pearsonclinical.com states that these tests “require a high level of expertise in test interpretation” and can only be purchased by individuals with a degree, licensure, or certification that indicates formal training and experience have been obtained). In addition, depending on the purpose of the test and the requirements of insurance and service providers, a medical diagnosis by a doctoral-­ level psychologist or equivalently trained professional may be required for the purposes of reimbursement or service qualification.

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Test Accommodations and Interpretation Understanding of test construction, psychometrics, and other developmental or psychological factors that can affect results of certain types of assessment are important contributions the psychologist brings to the ASD team. There are many factors that can affect test performance that must be accounted for in interpretation. One challenge in assessing neurodevelopmental disorders is that many assessments have not been sufficiently researched in individuals with ASD and other developmental disabilities, and the clinician must take into consideration possible psychometric concerns during both test selection and interpretation. Lack of research using a particular measure in the ASD population does not necessarily mean that the measure will not garner useful information, but results should be interpreted carefully. The assessment team must take into account the result of each measure as well as developmental and medical history when interpreting testing results; for example, results of cognitive assessment will affect interpretation of measures of adaptive, social, and communication skills critical to differential diagnosis. Conversely, high levels of social anxiety, difficulty processing verbal information, distraction by things in the room, and other factors can impact results on cognitive measures. Factors specifically related to ASD symptoms may affect the administration and interpretation of a test. As an example, one of the authors was recently administering a WPPSI to a young child who had a particular interest in colors and letters. On one section of the test, the child is tasked with completing a page of items in order as quickly and accurately as possible. Each item appears in a box of a different color to help orient the young child to individual items on a page full of information. This child’s interest in colors, however, led him to complete the items by color order (all reds, then oranges, yellows, greens, and so on). At times the clinician may need to decide on the fly whether to make accommodations. For example, due to interest in letters, this same child had difficulty selecting the correct answer from a

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series of pictures which were labeled A, B, C, D, and E (instead responding by listing words that started with each letter). Should the child be accommodated by placing a white strip of paper over the letters and requiring a pointing response to facilitate the individual’s participation? What about for a child who has difficulty sitting in a seat for a long time but stays more focused if they are allowed to sit on the floor? Eliminating distracting stimuli such as the letters, or adding visual structure, such as a page with an outlined square for an individual to place their blocks during pattern construction subtests, may provide a more accurate (and time-efficient) picture of the child’s cognitive functioning, but at the expense of standardized administration. Is the purpose of the assessment to determine how the child likely functions in a classroom setting or to get an idea of functioning in more individualized environment? How should such behaviors or accommodations be incorporated into the interpretation of the report? During challenging assessment sessions, the psychologist’s training in behavioral techniques is an asset. For example, what if during the course of a testing session, the child often jumps out of his seat and runs around the room, frequently interrupts testing to ask irrelevant questions or inquire when testing will be finished, is overly distracted by various stimuli in the room, or flatly refuses to comply? It could also be that the child does not understand what is being asked of them but social communication impairments prevent them from asking for the type of help they need, or they may be overly frustrated or fatigued but have difficulty expressing this. Lincoln, Hansel, and Quirmbach (2007) provided several ideas for encouraging cooperation in a testing session, including strategic positioning of the child, materials, and examiner. Using simple visual schedules and quickly establishing clear and predictable routines and reinforcers into the assessment can reduce anxiety that many individuals with ASD feel at being asked to do a new, nonroutine task with a new person. Ideally, the need for such structure would be known beforehand, and the team could decide whether accommodations should be provided based on the purpose of the

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assessment, but if this is not the case, the psychologist’s background in behavioral techniques is an asset for the team that finds itself with a need to quickly adapt techniques during assessment in order to ensure the assessment provides valid information for the construct being tested (e.g., intelligence) rather than becoming an inadvertent test of motivation, compliance, or emotional regulation. For more information on ideas for structuring a testing session, see Klinger et al. (2009). Other factors the team must consider when selecting and interpreting measures include language ability, delayed processing, developmental level in comparison with chronological age, problems with motor planning/coordination, and concurrent psychiatric concerns. Even evaluative tools that are often considered the “gold standard” for evaluating ASD symptoms such as the Autism Diagnostic Observation Schedule (ADOS-2; Lord et al., 2012) must be interpreted in the context of information gained throughout the assessment process. For example, Sikora, Hartley, McCoy, Gerrard-Morris, and Dill (2008) found that 15% of children and adolescents with mood disorders were misclassified using the ADOS-G algorithm, highlighting the need to obtain collateral information during diagnostic assessments and to interpret the results of each assessment within the context of other information (indeed, the authors of the ADOS emphasize that the measure should be used as one data point among several others in the diagnostic process). For example, individuals with significant anxiety may also demonstrate behaviors that overlap with ASD symptoms (Hartley & Sikora, 2009) and thus perform poorly on the ADOS-2 and other ASD measures. Children with congenital deafblindness may exhibit similar behaviors as children with ASD (Graham, Rosner, Dykens, & Visootsak, 2005; Smith, Nichols, Issekutz, & Blake, 2005). Observational and parent-report measures frequently used in ASD assessment may not have been researched within the context of congenital blindness, and these individuals may score well within the ASD range on the scoring protocol, but upon careful assessment, their behavior may be attributed to sensory impair-

ment/deprivation (Andrews & Wyver, 2005; Graham et  al., 2005; Vervloed, Hoevenaars-van den Boom, Knoors, van Ravenswaaij, & Admiraal, 2006). Of course, no matter how well-trained and experienced a clinician may be, there will at some point be a case where the psychologist simply does not have the skills or means to adequately conduct a full diagnostic assessment and will need to refer or consult with other colleagues with training in specialty areas. Moreover, treatment planning is extremely likely to involve referral to and collaboration with other specialists, especially given the high incidence of other medical, developmental, and psychological comorbidities within the context of ASD. Having an established interdisciplinary ASD team streamlines and improves the diagnostic process by bringing together professionals with the expertise needed to fully address the needs of the client. The interdisciplinary team thus facilitates an easy transition from a thorough diagnostic assessment to receiving appropriate services.

 ssessing and Treating Psychiatric A Comorbidities Scope of the Problem Psychiatric comorbidities are quite common in the context of autism spectrum disorder (Deprey & Ozonoff, 2009; Joshi et  al., 2010; Mannion, Leader, & Healy, 2013) and may be underdiagnosed. Children with ASD have more significant emotional difficulties than typically developing children ages 5–16. In children ages 5–16 with ASD, 74% had clinically significant difficulties including anger, sadness, and anxiety compared to 18% of typically developing peers (Totsika, Hastings, Emerson, Lancaster, & Berridge, 2011). Approximately 40–50% of youth with ASD meet the criteria for two or more psychiatric disorders (Simonoff et  al., 2008). Standardized behavior analytic assessment and treatment in children with ASD may neglect to address the role of other mental health problems such as anxiety, especially its potential contribution to the

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presence of problem behaviors, if the providers are not aware of these issues and how symptoms may present differently in individuals on the spectrum. Anxiety and depression are particularly common in older individuals with ASD who are not cognitively impaired, often becoming more prevalent as individuals become more aware of their own social difficulties (van Steensel, Bögels, & Perrin, 2011). Accurately assessing and diagnosing psychiatric comorbidities is critical to adequate treatment planning, and there are times when problems related to psychological concerns may be more pressing treatment targets than ASD symptoms (Maskey, Warnell, Parr, Le Couteur, & McConachie, 2013). Diagnosis of psychiatric comorbidity can be complicated if it is unclear whether symptoms warrant an additional diagnosis or if they may be best considered as related to ASD (Matson & Nebel-Schwalm, 2007).

Assessment The social communication deficits central to ASD complicate reporting of psychiatric symptoms to clinicians. Measures often used to assess psychiatric and behavioral difficulties in the general population have been used with individuals with ASD, but most of these measures have not been tested for reliability or validity in individuals with ASD. Even questions that seem relatively straightforward can be confusing to individuals with ASD who are self-reporting on psychiatric symptoms. For example, items from some commonly used self-report measures of anxiety and depression include “I am a steady person” (the State-Trait Anxiety Inventory for Adults; Spielberger, 2010), “I could not ‘get going,’” and “I felt that I could not shake off the blues” (the Center for Epidemiologic Studies Depression Scale; available at www.cesd-r.com). In this writer’s clinic, these items have puzzled bright adults on the spectrum, some of whom spent substantial time puzzling over these items. Despite the difficulty in assessing psychiatric comorbidities, accurately doing so is critical to

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effective treatment planning. The psychologist’s training in ASD, typical development, and psychiatric disorders all play a role in accurate diagnosis and treatment planning. A licensed psychologist’s background will include training in evidence-based treatments for common psychiatric disorders in the general population, such as cognitive behavioral therapy, dialectical behavior therapy, and others (though the degree of emphasis on each orientation may differ among training programs). Research has shown that, with appropriate individualized adaptation, intervention strategies such as cognitive behavioral therapy and dialectical behavior therapy which have a strong evidence base in other populations can be helpful for individuals on the spectrum. Indeed, adaptation of such interventions is a growing area of research in the ASD field. The ability to identify and adapt suitable approaches to address anxiety, depression, emotion regulation, and other challenges is an important contribution to the ASD treatment team. Additionally, since symptoms of concurrent psychiatric concerns can wax and wane or new problems arise with maturation and situational changes, it is important not only to monitor the impact of interventions but also continue to monitor for recurring or new symptoms over time.

Treatment Planning There is a growing body of literature to support the efficacy of behavioral and cognitive behavioral interventions that psychologists can provide to address comorbid problems in individuals with ASD.  Addressing comorbid behavioral or psychiatric problems in individuals with ASD is important as the presence of comorbid problems can mean poorer prognosis and may prevent individuals from fully benefitting from the ASD-­ specific interventions they receive. For example, behavior problems can impede a child’s ability to participate in classroom instruction, ­individualized interventions, naturalistic socialization opportunities, or discrete trial training. Psychologists who are trained in delivering CBT

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and behavior therapy can address these problems in conjunction with ASD-specific intervention, working with other providers to ensure treatments are complimentary (e.g., so that strategies to address behavioral difficulties are applied consistently across settings). When it comes to implementing treatments for challenging behaviors such as aggression, self-injury, or sleep difficulties (after medical conditions have been ruled out), behavioral approaches are a critical component of treatment planning. Even when medications may be used to address difficulties, behavioral approaches are often necessary for long-term treatment success and to decrease medication use. Behavioral treatment focuses on teaching the individual (and caregivers) new and more adaptive ways to meet situational needs, addressing the skill deficits contributing to behavior difficulties. Therefore, an interdisciplinary team that includes both psychologists and psychiatrists is beneficial.

 BT and Core ASD Symptoms/Social C Skills Interventions CBT is now a commonly used intervention for children with high-functioning ASD who have well-developed verbal skills and are able to engage in talk-based therapies  (supported, of course, with visual and other supports as needed to fit the individual’s learning style). There is a growing body of literature that supports the use of CBT to address a variety of skill deficits in individuals with ASD including social and adaptive skill deficits. Many authors suggest modifications to traditional CBT by relying more heavily on behavioral components of treatment, incorporating an individual’s restricted interests as a way to increase engagement in therapy, increased parental involvement, and behavioral rehearsal of skills (Danial & Wood, 2013). In the past, CBT for ASD was focused mostly on ASD symptoms (Thomson, Riosa, & Weiss, 2015). Some researchers have noted that there are certain prerequisite skills that need to be developed to enhance positive responses to CBT for individuals with ASD (Lickel, MacLean, Blakeley-Smith, & Hepburn, 2012). The effec-

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tiveness of CBT may be enhanced if treatment initially emphasizes improving emotion identification and awareness, given that this is a core social deficit for individuals with ASD. Traditional CBT requires individuals to report on internal emotional states and demonstrate an understanding of the causes and consequences of emotional experiences. This necessitates that individuals can accurately identify and discriminate among a variety of emotions to fully participate in CBT interventions (Lickel et al., 2012). Other important components include effective education, inclusion of parents and teachers, and teaching key concepts of friendship and interpersonal problem-solving such as initiating conversation, comforting a friend, and sharing experiences (Bauminger, 2002; Danial & Wood, 2013). Social responsiveness is often a main target behavior in CBT for individuals with ASD.  Emphasis is also placed on helping individuals acquire cognitively mediated abilities to promote successful social interactions (e.g., perspective taking). These interventions also aim to help individuals understand their own and other peoples’ thoughts, goals, and intentions (Danial & Wood, 2013). Social skill deficits are a core symptom of ASD, and there is a need to establish evidence-­ based social skills interventions for individuals with ASD.  There are several social skills interventions that show promise in improving social skills. Psychologists can provide CBT-based interventions aimed at improving social skills. For example, the Program for the Education and Enrichment of Relational Skills (PEERS) is an empirically supported social skills intervention for youth with ASD. PEERS applies CBT methods of instruction including psychoeducation, role play, cognitive strategies (social perception, social cognition/perspective taking, social problem-­solving), behavioral rehearsal exercises, performance feedback, Socratic questioning, homework and review, and parent involvement. Results from RCTs have shown improvements in overt social skills, increased frequency of peer interactions, and increased social responsiveness (Laugeson & Park, 2014). Research has shown that CBT-based social skill treatments are feasible, accessible, and beneficial when there are

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adaptations such as increasing the structure and predictability of sessions, using visual supports, using explicit verbal cues and feedback, identifying important social cues, and frequent behavioral rehearsal of skills. In addition to the PEERS program, there are about four other empirically support social skills interventions. These interventions are often provided in a group format. The group-based format is thought to allow for more opportunities for social interaction and teaching skills in a naturalistic setting (Laugeson & Park, 2014).

Emotion Regulation Beaumont and colleagues developed a CBT intervention called the “Secret Agent Society: Operation Regulation” to teach emotion regulation skills to children with ASD (Beaumont, 2013). Thompson and colleagues conducted a study of 13 children with average to above average IQ to evaluate the effectiveness and feasibility of this emotion regulation intervention (Thomson et  al., 2015). The program included the following CBT components: modeling, role playing, psychoeducation, relaxation, generalization, and token reinforcement system. Early sessions target emotional awareness and identification and then move to implementing relaxation and coping strategies.

Interventions for Anxiety and ASD Recently, CBT interventions for individuals with ASD have expanded to address other areas of difficulty, particularly anxiety (Thomson et  al., 2015). Individuals with ASD are predisposed to anxiety (e.g., Bellini, 2006). The prevalence of comorbid anxiety disorders in individuals with ASD is approximately 40% (van Steensel et al., 2011) and anecdotally is one of the most common presenting problems for youth with ASD in outpatient clinics. Anxiety is documented in individuals with and without  accompanying intellectual disability  (ID). A large proportion of literature has focused on behavioral treatments for anxiety in

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ASD  without ID (Rosen, Connell, & Kerns, 2016). Anxiety is associated with additional functional impairments for people with ASD including more severe social difficulties, depression, self-injury, and family stress (Kerns et al., 2015). Given the high rate of comorbid anxiety and ASD and the related functional impairments, there has been an effort to identify evidence-­ based practices for anxiety problems in individuals with ASD (Rosen et  al., 2016). Modified cognitive behavioral therapy (CBT) is showing emerging support for effectively treating comorbid anxiety disorders (e.g., Danial & Wood, 2013), particularly for individuals with “high-­ functioning” autism  (ASD without accompanying ID; note that while commonly used this term is in quotations becuase it can be misleading as it does not actually speak to the individual’s adaptive functioning). Several randomized controlled trials have shown that Modified-CBT (M-CBT) can reduce symptoms of anxiety in children with “high-functioning” autism (e.g., Reaven, Blakeley-Smith, Culhane-Shelburne, & Hepburn, 2012; Wood et  al., 2009). These interventions often include the use of visual supports (e.g., emotion thermometers) and increased parental involvement compared to traditional child CBT, incorporating individuals’ specific interests and using more concrete language instead of analogies. However, there is less evidence to support the use of M-CBT in individuals with more severe ASD symptoms of individuals with ID or limited verbal ability. Behavioral components of CBT such as graduated exposure, systematic desensitization, escape extinction, modeling, positive reinforcement, coping skills, and antecedent strategies (Rosen et al., 2016) have shown promise in reducing phobic avoidance (Rosen et  al., 2016). Given that anxiety symptoms are often verbally mediated (worries, anticipatory anxiety), treatments for anxiety in individuals with intellectual disability (ID) or limited verbal ability rely more heavily on behavioral components of CBT to decrease anxiety symptoms, and less emphasis is placed on cognitive components such as cognitive restructuring, self-talk, and affect labeling. Psychologists also rely on observable behaviors to measure anxiety (e.g., heart rate,

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breathing, somatic symptoms, avoidance). This also allows for more emphasis on behavioral components and less emphasis on cognitive component (e.g., affect labeling, self-talk, cognitive restructuring; Rosen et al., 2016).

Disruptive Behaviors Approximately 50% of children with ASD also engage in disruptive behaviors such as aggression, noncompliance, and self-injury (Bearss et al., 2015). These disruptive behaviors have the potential to interfere with an individual’s ability to benefit from and participate in their treatment and educational programming. CBT for disruptive behaviors may include cognitive restructuring, emotion recognition, and developing coping strategies. These interventions have also addressed perspective taking, problem-­ solving, role play, and the use of social stories. Some of these interventions have included concurrent parent sessions and home-based assignments. Mindfulness training has also been used for externalizing disorders. However, the role and effectiveness of CBT for disruptive behavior is unclear, requires a certain level of verbal communication and comprehension,  and more research is needed (Danial & Wood, 2013). There is promising evidence to support the use of behavioral parent training to address problem behaviors in individuals with ASD.  A randomized clinical trial (RCT) was conducted to determine the effects of a parent behavior training program compared to parent education to decrease disruptive behaviors in young children with ASD (Bearss et al., 2015). The results indicated that disruptive behaviors significantly decreased in the parent training condition compared to the parent education. Specifically, scores on the irritability subscale of the Aberrant Behavior Checklist decreased by 47.7% in the parent training condition, while a 31.8% was found in the parent education condition. Emphasis is on the role of parents as the agents of change; it is a time-limited approach and is considered an evidence-based treatment.  The RUBI Autism Network has developed a standardized behav-

ioral parent training program specifically for individuals with ASD, complete with a parent manual, video clips, and many optional modules to address specific common difficulties (see  https://www.rubinetwork.org/ for more information). 

Sleep Problems Sleep problems of individuals with ASD are similar to those occurring in the general population, but occur much more frequently. May and colleagues (May, Cornish, & Rinehart, 2014) found that while 29% of typically developing children had caregiver-reported sleep problems, 78% of children with ASD had sleep problems. Poor sleep is correlated with increased aggression, hyperactivity, and more significant social problems (May et al., 2014). Psychologists can provide brief behavioral interventions to train parents on behavioral approaches to improve their child’s sleep. These brief interventions can result in significantly improved sleep and fewer behavioral problems with ASD, which also increases parent mental health and well-being (Papadopoulos et al., 2015).

Addressing Difficult Behaviors Other behavioral concerns such as aggression to self and others, tantrums, feeding difficulties, and sleep issues are also common in individuals with ASD. Approximately 50% of children with ASD also engage in disruptive behaviors such as aggression, noncompliance, and self-injury (Bearss et  al., 2015). These behaviors can be quite impairing for the individual and disruptive to the family (Doo & Wing, 2006). These behaviors may also interfere with an individual’s a­ bility to benefit from and participate in their treatment and educational programming. It is important to first rule out or address any underlying medical problems for difficult behaviors, which may include referral to other members of the interdisciplinary team (e.g., neurology, sleep medicine, and other specialists). It is also

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important to assess for possible psychological problems such as OCD or mood disorders when designing a treatment approach for difficult behaviors. Once medical causes for challenging behaviors are ruled out or are addressed, and possible psychological problems have been assessed and appropriate treatment initiated, functional behavior assessment  (with a careful consideration of ASD-specific concerns/setting events, such as learning/processing/sensory differences) emerges as a critical link between assessment and intervention. The psychologist’s experience in the measurement and monitoring of behaviors over time is helpful to this end. Establishing a method of efficiently monitoring change over time is not only important for establishing and tweaking a treatment plan over time; recording quantifiable changes can also be a powerful tool for caregivers who may not notice incremental improvements in daily life but are motivated by seeing the big picture as data is documented over time. Many methods have been developed to assess the factors underlying challenging behaviors and serve as a foundation for treatment planning. Some challenging behaviors are relatively straightforward. In such cases, asking a series of questions (perhaps using one of several scales for assessing behavioral function) and making informal observations may be sufficient for treatment planning; in other occasions, determining the antecedents and maintaining variables are not so clear cut. In either case, operationally defining the behavior is important, particularly if other individuals will be tracking the behavior in other environments (e.g., at home and school) to determine if the treatment plan is working. It is not uncommon for definitions of the target behavior to vary widely. For example, say parents report “noncompliance” is causing major difficulties in the home and school. If the child is asked to do something that they clearly understand and says “no, I don’t want to,” both parents readily agree this is an example of the target behavior. However, what if the child says “yes” to a request, but then fails to do so? Or what if the child is asked to do something immediately but then does it 5  min later? Perhaps one parent would record this as

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noncompliance, whereas the other would not. Determining what to record can also involve psychoeducation for involved individuals. In the above example, perhaps the child has slow processing for verbal instructions, for which one or both parents are not accounting when giving instructions. What may look like “noncompliance” may in fact be due to not understanding, a delay in processing, or problems with attention. The difficulty in such instances may lie more with the one giving the instructions. Perhaps both parents give verbal instructions, but one tends to speak more slowly or provide visual cues, so the child appears more “compliant” with one parent than the other. A better understanding of the individual’s functioning including learning style and skill deficits related to ASD would be helpful for this family, even before the team begins to track instances of noncompliance. The psychologist would first provide any needed psychoeducation and then help the family in operationally defining the difficult behavior so that an accurate count of the target behavior can be made. Collaborating to come up with a clear definition of the target behavior is a critical first step to addressing difficult behaviors. The psychologist’s behavioral expertise is similarly wielded to determine the relationship between events in the individual’s environment and the target behavior. The means of determining underlying function may vary depending on the situation. In some cases, using one of the established indirect/parent-report measures along with informal observation may be sufficient; in other cases, more involved functional behavior assessment may be needed. The psychologist may need to train caregivers on how to systematically record antecedents and consequences in a manner that records sufficient detail to assist in forming a sound hypothesis while also fitting into the abilities of the family. For example, they will need to decide whether every incidence of the operationally defined behavior will be counted, or if the family will record only during a certain time period each day. Infrequently, a functional behavior analysis may be required. Using this technique essentially means running a one-­subject experiment wherein environmental factors are

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systematically manipulated in a controlled environment. A strong background in integrating research and behavioral studies is essential in conducting these formal analyses to minimize the chance that confounding factors are introduced. Once the behavior is operationally defined, necessary psychoeducation is provided, probable functions are determined, and a baseline of behavior frequency and severity is established, the psychologist can work with the family and the team to establish a treatment plan to address the challenging behavior. For challenging behaviors and for comorbid psychiatric disorders, the psychologist can work with the family to continue monitoring behavior and symptoms over time and alter the treatment plan as needed. The psychologist will also draw upon the same behavioral expertise to identify skill deficits and incorporate necessary skill building into the treatment plan (e.g., finding ways to teach more appropriate methods of requesting attention, coping with frustration, and requesting help or a break). Establishing the methods of skill building often involves more members of the ASD team, including OT, speech therapists, and other members of the interdisciplinary team. In sum, the psychologist’s research background and expertise in behavioral assessment are beneficial toward treatment planning in collaboration with other members of the interdisciplinary team.

Transition to Adulthood  ransition to Adult Services T and Different Living Situations As children with ASD approach adulthood, their symptoms and support needs often change. Many individuals on the spectrum show some degree of improvement in their overall symptomatology and impairment over time, with nonverbal communication and social reciprocity showing more persistent impairment (Seltzer, Shattuck, Abbeduto, & Greenberg, 2004; Shattuck et al., 2007). The challenges caused by

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ASD symptoms may become more complex in adulthood, however. When an individual graduates or ages out of the school system, they experience a sudden and significant loss of daily structure and familiarity. In the workplace, postsecondary education, or other settings after high school, time is generally not as structured, and expectations are not as clear as they were in the school setting. Familiar and trusted individuals who helped the individual through difficulties in the school environment are no longer readily available, friends and familiar peers are suddenly absent, and social expectations in the workplace may be quite different than they were in the familiar classroom setting. Understandably, the transition to adulthood can be stressful for many individuals on the spectrum and may exacerbate mood or behavior problems in some individuals. Family and treatment team members should look for signs that an individual may be experiencing difficulties that would warrant the involvement of the psychologist. The psychologist could then assess and devise a treatment plan suited to the individual, as discussed under the section on comorbidity above. Treatment planning may involve referral to other services such as vocational and social skills training programs, which have been found to reduce selfreported anxiety and depression among young adults with ASD (Hillier, Fish, Siegel, & Beversdorf, 2011). For individuals who have been receiving services primarily through the school, the transition to adulthood may require a new psychological assessment to determine the degree of impairment in various areas as outlined by service agencies. For example, a certain degree of functional impairment in multiple areas may be required to access supported employment or waiver-based services (which may go by different names in different states but provide home- and community-­ based services subsidized or covered by state funds). In this case, the psychologist will choose assessments most suited to highlight the individual’s needs in the various domains outlined by the service organization, with collaboration from the interdisciplinary team if needed.

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During early adulthood, many individuals on the spectrum transition to a supported living arrangement. Additionally, some individuals who move into group homes or other supportive environments may have difficulty adjusting to the new setting, in which case a psychologist might consult with the group home to provide psychoeducation to staff, implement needed structure and other environmental supports, and devise behavior support plans to meet the needs of the individual as they adjust to the transition.

The Transition to Post-Secondary Education and the Workplace The transition from high school to post-­secondary education or the workplace is a pivotal experience for young adults, regardless of whether they are on the ASD spectrum or not. Research findings show that increasing numbers of young adults with ASD are pursuing post-secondary education at 4-year colleges, 2-year colleges, and vocational/technical schools (e.g., Shattuck et al., 2012). However, individuals on the spectrum are extremely underemployed, and individuals with ASD without concurrent intellectual disability still attend higher education at lower rates than their neurotypical peers (Taylor & Seltzer, 2011). Psychiatric comorbidity and lower levels of adaptive functioning are associated with poorer adult outcomes (Taylor & Seltzer, 2011). Core symptoms and associated features of ASD including deficits in social communication and interaction, restricted and repetitive behaviors and interests, pragmatic language difficulties, and executive dysfunction can also complicate a successful transition to vocational or education activities. Psychologists, particularly when working alongside professionals from different disciplines, are well-positioned to support adolescents and adults with ASD as they enter and participate in employment and post-secondary education. In this section, the supports and services that psychologists may provide for students with ASD—including but not limited to assessment, intervention, advocacy, coordination of care, and program evaluation—are discussed.

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Assessment For individuals entering the workforce, an evaluation to determine current support needs is sometimes beneficial if the individual has not received an assessment in several years. Assessment by a psychologist may be needed to qualify for supported employment or vocational rehabilitation services; these organizations then often conduct assessment of vocational skills as needed. These assessments can then inform the individual and their treatment team about supports that may be needed in the work setting, which can inform the job search and questions around whether and when to disclose the ASD diagnosis. Individuals continuing to post-secondary education should also take these things into consideration. Seeing that post-secondary schools are not required to screen for the presence of any disabilities or conditions that could interfere with learning, students are unlikely to be assessed and diagnosed with ASD, or other conditions, by their post-­ secondary schools (Pinder-Amaker, 2014). Instead, an independent neuropsychological, psychological, and/or educational evaluation with a licensed psychologist is valuable for students with ASD who plan to pursue post-­ secondary education before they begin the educational program. For a young person, a thorough neuropsychological evaluation will examine functioning across multiple domains, including intellectual and cognitive functions, language and related functions, visual-spatial and visual-motor skills, learning and memory, attention and executive functions, and psychological and socio-emotional well-being; academic achievement may be included too (Braaten & Felopulos, 2003). The results of such assessment may identify an individual student’s diagnostic profile and areas of cognitive strength and weakness and inform the types of services and supports that may be needed in the post-secondary education setting. Indeed, a recent evaluation report is often required by disability services offices at 2- and 4-year colleges to provide accommodations (e.g., extended time to complete assignments and exams, preferential seating, access to class notes and outlines) to individual students. While some students may

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feel reluctant to share their evaluation reports and, in turn, their disability status with their post-­ secondary schools (MacLeod & Green, 2009), it is important to keep in mind that per legal mandates, all information is to be kept confidential and shared with personnel only on a need-to-­ know basis, and obtaining appropriate supports can significantly increase the individual’s overall success. Seeing that no standardized protocol exists for assessing young people with ASD, Hewitt (2015) offered some recommendations for working with this population. Specifically, when assessing individuals with ASD who are preparing for post-­ secondary education, it is helpful to cover the following domains: educational and career goals; motivation to attend college; concerns about previous educational and social experiences; hobbies and interests; current and anticipated support network upon entering post-secondary education; previous experiences with independency, community living, and self-advocacy; and previous experiences with self-disclosure of ASD status. These same considerations are important for individuals preparing to enter the workforce. When evaluating young people with ASD who are already enrolled in post-secondary education, it is important to assess their current living situation; ability to identify and use campus services and organizations (e.g., student organizations, health services); ability to navigate the campus and surrounding community; relationship with campus disability services office; class schedule; academic performance and standing; interactions with faculty and personnel (e.g., professors, resident advisors); use of technology; and study and time management skills (Hewitt, 2015). Assessing these areas may inform service need and delivery, above and beyond the academic accommodations that post-secondary schools may be most familiar with and equipped to offer.

Intervention While the transition to post-secondary education or the workforce is an exciting period for many individuals with ASD, it can also introduce increased academic/productivity and social demands and, in turn, increased stress. Further,

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the stress associated with this transition may persist over time for students with ASD (Vanbergeijk, Klin, & Volkmar, 2008). Psychologists who provide direct services may provide individual or group therapy to post-secondary students with ASD.  Many individuals with ASD experience significant depressive and anxiety symptoms (Lai et al., 2011); while the research base remains limited, there is emerging evidence to show that adapted cognitive behavioral therapy (CBT; discussed also under the comorbidities section above), delivered in both individual and group settings, may reduce these symptoms among young people with ASD without concurrent intellectual disabilities (Kerns, Roux, Connell, & Shattuck, 2016). Further, interventions based on CBT principles, including group-based problem-­ solving therapy (Pugliese & White, 2014), have emerging support for increasing practical skills and reducing distress among post-secondary students with ASD.  These interventions are often provided by a psychologist. In addition to helping students with ASD manage depressive and anxiety symptoms, recent intervention studies have targeted increasing social skills and behaviors. For instance, Ashbaugh, Koegel, and Koegel (2017) developed and tested a structured social planning intervention to address the high rates of loneliness and isolation reported by post-secondary students with ASD (e.g., Hendricks & Wehman, 2009). Structured social planning involves multiple components, including incorporating individuals’ interests when selecting social activities, individuals engaging in the selected social activities, training in organizational skills, and using a peer mentor for support. The authors used a multiple baseline design to measure the impact of this intervention program on the number of social activities attended per week, number of extracurricular activities attended per week, number of peers interacted with at these activities, academic performance, and self-report overall satisfaction ratings of three college students with ASD. Participation in the structured social planning intervention had beneficial results for each participant across each of these areas, and the results of this study support directly intervening

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on the social skills and behaviors of post-­ secondary students with ASD. While participants in the Ashbaugh et  al. (2017) study received intervention individually, these results are consistent with those of previous studies that demonstrated that young adults with ASD may benefit in multiple areas from group-based social and vocational intervention (Hillier et  al., 2011; Hillier, Fish, Cloppert, & Beversdorf, 2007). Taken together, these findings suggest that psychologists may contribute to a successful transition by addressing social skills and providing skills training when working with young people with ASD in individual and group settings, as well as by referring to such programs in the community if they are available.

Advocacy It is important for psychologists and other members of the interdisciplinary team to have a working knowledge of legislation, including Section 504 of the Rehabilitation Act of 1973, Titles II and III of the Americans with Disabilities Act (ADA) of 1990, and the Family Educational Rights and Privacy Act of 1974, which impacts post-secondary education for students with disabilities. Knowledge of these laws and of students’ educational rights is critical, seeing that much responsibility shifts from families and school districts to individuals with ASD themselves upon exiting the public school system. A key way in which psychologists can empower their young clients with ASD is by encouraging them to participate actively in their own transition planning while they are still in secondary school (Pinder-Amaker, 2014). A transition plan is a document that outlines a student’s goals for life after high school and how they  will begin preparing for those goals while still in high school. Per the Individuals with Disabilities Education Act (2004), all students who have an Individualized Education Plan (IEP) are required to have a transition plan by the time they turn 16 years old, but transition planning can begin even earlier. Cameto, Levine, and Wagner (2004) found that the vast majority of high school students with ASD have a transition plan (85%); however, fewer attend their transition team meet-

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ings (77%), and extremely few assume an active leadership role when they do (3%). Having a transition plan in which the student is actively involved and that specifically states an intention to attend post-secondary education following high school is one of the strongest predictors of post-secondary education attendance for students with ASD (Wei, Wagner, Hudson, Yu, & Javitz, 2016). Research has not been conducted to determine whether the same is true for those planning to enter the workforce, but such a transition plan could also focus on employment and actively involve the student’s input. Active involvement is an important way to practice self-advocacy skills. Geller and Greenberg (2010) suggested that ongoing social skills and life skills development, sex education, job training, and supports around leisure activities should also be included in transition plans that are developed for students with ASD.  Psychologists who provide assessment and/or intervention supports to high school students with ASD should communicate with patients and their families about how they may be involved with transition planning and communicate with the special education team as needed to discuss supports and strategies to  promote the individual’s involvement in their IEP goals and meetings. Not all students with ASD may have IEPs and transition plans (Zeedyk, Tipton, & Blacher, 2016), in which case the treatment team should encourage the family to begin thinking about supports and skills that will be necessary for a successful transition to adulthood and the post-secondary or work environment. Upon entering post-secondary education, self-­ advocacy for students with ASD entails navigating campus resources and supports for students with disabilities and other conditions (e.g., disability services office, campus counseling center), having a strong understanding of the supports they need to be successful and communicating these to school administrators, and providing documentation (e.g., neuropsychological evaluation report) as requested by their post-secondary school. Additionally, if students find that they are not receiving the accommodations that they were promised, or if those accommodations are not having their intended impact, then they must

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communicate with school administrators to address the issue (U.S. Department of Education, 2011). The same is true for those in employment settings; they must decide whether to disclose and advocate appropriately to have reasonable accommodations in concord with the Americans with Disabilities Act (ADA). Psychologists who provide intervention to adults with ASD can assist with this process by educating them about their rights, checking in regularly about their progress and adjustment, helping patients to troubleshoot any barriers to receipt of accommodations (e.g., role-playing conversations with disability services staff, helping them decide when and with whom to discuss concerns), and, with permission, communicating directly with post-secondary education or employment support staff when/if needed.

Coordination of Care An important role that psychologists can play for post-secondary students with ASD in their care is to learn about the resources and supports available at individuals’ schools. Post-secondary schools vary significantly in the supports they provide; however, the programs most frequently offered to post-secondary students with ASD include support groups, counseling, supervised social activities, and summer transition programs (Barnhill, 2016). Psychologists can assist by exploring and understanding the research base for these programs; with this information, psychologists can assist their clients in accessing and navigating these supports, as well as in making informed decisions about which opportunities to pursue. For individuals planning to enter employment, the psychologist can similarly recommend and refer to appropriate community organizations that could assist with vocational planning, including training/skills programs related to the individual’s employment goals. Building on adaptive behaviors, including safety, transportation, financial accountability, personal hygiene, and doing laundry, is often necessary as students with ASD transition to adulthood (Zeedyk et al., 2016). Psychologists should be knowledgeable about local supports and resources available (including those offered by others on the interdis-

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ciplinary team) to help meet these needs and make appropriate referrals. Psychologists also should be aware that some individuals with ASD and their families may choose to work with an occupational therapist, life coach, tutor, and/or mentor in order to develop some of these skills, and they should be prepared to provide referrals and collaborate with these professionals as needed. In addition to helping students with ASD navigate resources in their communities, psychologists may assist adults with ASD by involving their parents in sessions if permission is granted by the client. As discussed previously, students’ families are generally highly involved in their K-12 education; however, responsibility shifts quickly to students themselves upon entering post-secondary education. Pinder-Amaker (2014) suggested that post-secondary students would benefit greatly from a theoretical “Individualized College Plan,” in which the complex interactions between the student, family, and school that occur in the context of an IEP could continue into the post-secondary education setting. Psychologists may be able to put some aspects of such a plan into practice.

Program Evaluation New programs are continually being implemented to meet the needs of the growing numbers of adults with ASD, including post-secondary students. A significant drawback of these offerings, however, is that many lack program evaluation on a larger scale (Gelbar, Smith, & Reichow, 2014; Zeedyk et al., 2016). To date, recommendations for supporting the needs of college students with ASD appear to be based more on the clinical impressions and experiences of educational professionals, and on research on college students with disabilities other than ASD (e.g., learning disabilities), than on empirical research with college students with ASD (Pinder-Amaker, 2014). Regarding employment, supports have historically been more readily accessible for those individuals with concurrent intellectual disability (ID), leaving individuals with ASD but no ID significantly less likely to have daytime activities (Taylor & Seltzer, 2011). This discrepancy

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highlights that currently available supports are inadequate to meet the needs of those who have a diagnosis of ASD without ID. While an increased interest in creating programs for these individuals has emerged in the past few years, many of these programs are still under development and not widely available. However, as more programs are implemented and evaluated, the research base will grow. With both research and clinical training, psychologists are uniquely positioned to contribute to these program evaluation efforts to determine how to most effectively design, modify, and implement programs to meet the employment and educational needs of adults with ASD.

Later Adulthood Just like the general population, adults with ASD inevitably experience various life stressors. When needed, the psychologist who is familiar with ASD is an ideal resource to help with significant stress, mood, or anxiety problems as needed. Little research has been conducted on aging adults with ASD, but psychologists can be an integral part of the interdisciplinary team to help individuals cope with adjustment difficulties as they experience declining mobility or heath. The psychologist can also work with the care team to devise additional supports as needed (e.g., one author recently consulted with an interdisciplinary team regarding behavioral strategies to implement as an individual in an intermittent care facility recovered from a complicated surgery; the individual was very driven by routine, and the disruption caused by the recovery process was very distressing for the individual). Psychologists are also able to provide periodic assessments that could be useful in detecting cognitive decline over time. Research indicates that in the general population, presymptomatic cognitive decline occurs in the decades prior to the onset of dementia (Geschwind et al., 2001). Periodic assessment could help detect this warning sign in individuals with ASD, and further assessment could inform determination of appropriate accommodations or the need for referral to additional specialists should the individual experience cognitive

decline or new mood symptoms/problematic behaviors arise.

Conclusion Individuals with ASD most certainly benefit from the collaboration of an interdisciplinary team. In the context of this team, the psychologist’s contributions include extensive training in assessment of ASD and psychological/behavioral comorbidities that are commonly seen in the context of ASD. The psychologist’s contributions to assessment are often particularly important for academic planning, transition planning, and qualification for various services. The psychologist’s training and experience will be an asset to the team’s treatment planning, and the psychologist can provide interventions to address common psychological and behavioral concerns that can impact quality of life and interfere with participation in other interventions or academic programs. As the individual ages, the psychologist remains a resource for needed therapeutic interventions tailored to the needs of the individual and can assist with major life transitions. The psychologist is also a resource to assess for cognitive changes associated with aging and brings training in research methodology needed for program development, research, and improvement as professionals strive to better meet the needs of this population.

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Primary Care Physicians/ Subspecialty Pediatricians Julie N. Youssef, Dana C. Won, and Heidi M. Feldman

Introduction Physicians and nurse practitioners play an integral role on the interdisciplinary team that provides diagnostic services and ongoing care of children with autism spectrum disorder (ASD) and their families. As our understanding of the symptom complex of ASD has increased over the years, our approach to diagnosis and management also has expanded. Professional organizations such as the American Academy of Pediatrics (Johnson, Myers, & American Academy of Pediatrics Council on Children With Disabilities, 2007) and academic researchers (Ozonoff, Goodlin-Jones, & Solomon, 2005) recommend that children and adolescents with ASD and their families receive comprehensive evaluations and coordinated management. We wholeheartedly agree. Our goal in this chapter is to describe the distinctive roles that physicians can play in evaluation and management. We begin with a discussion of primary care clinicians. Primary care clinicians are in an ideal position for identification of children with ASD through developmental surveillance and developmental screening. Best practices for children with any long-term condition, such as ASD, include J. N. Youssef (*) · D. C. Won · H. M. Feldman Division of Developmental-Behavioral Pediatrics, Department of Pediatrics, Stanford University School of Medicine, Stanford, CA, USA e-mail: [email protected]

the provision of a “Primary Care Medical Home.” We then will explain the roles, responsibilities, and opportunities of the medical home. Subspecialty pediatricians play distinctive roles in diagnosis. Next, we will introduce the developmental-­behavioral pediatrician (DBP), a subspecialist member of that interdisciplinary team who often serves as a liaison between primary care clinicians, other subspecialty physicians, and a broad array of community-based resources and services, including school programs. We then will contrast the approach of the DBP with that of other medical team members, including child neurologists, child psychiatrists, and geneticists. Subspecialty physicians also play a major role in the ongoing treatment of children with ASD.  They may treat behavioral and psychiatric features of the condition and other co-occurring medical conditions. Finally, we will discuss the role of physicians in transition planning as children move from a pediatric model of healthcare to an adult model of healthcare.

Primary Care Clinicians The term primary care clinician (PCC) refers to physicians (usually pediatricians or family medicine physicians) and other healthcare professionals (usually nurse practitioners) who are trained and licensed to provide a broad spectrum of

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p­ reventive and general healthcare. In the United States, primary care physicians complete at least 4 years of medical school after an undergraduate education. They then go on to complete a 3-year residency program, accredited by the Accreditation Council for Graduate Medical Education (ACGME Home, 2017). Both pediatricians and family medicine doctors provide care to children and adolescents. However, pediatricians typically evaluate and manage only children and adolescents, whereas family medicine physicians typically care for individuals of all ages, with children or adolescents representing a modest percentage of their practice. Nurse practitioners earn a 4-year bachelor’s degree and then either a master’s degree or doctorate in advanced practice nursing. They are certified by the American Association of Nurse Practitioners (AANP - Home, 2017). Depending on state laws, they may work in close collaboration with physicians or may have independent practices.

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between surveillance and screening is that screening requires the use of a validated instrument to compare the child’s level of performance to age expectations (Bright Futures Steering Committee & Medical Home Initiatives for Children With Special Needs Project Advisory Committee, 2006). Developmental screening tools typically assess the child’s progress in acquiring speech and language, fine and gross motor, cognition, and social and emotional skills. These tools establish the level of risk for a developmental disorder but do not provide a diagnosis of a developmental disorder. In addition to broad developmental screening at 9, 18, and 24  months, the AAP recommends that all children be assessed with an ASD-specific screening measure at 18 and 24  months of age. One of the AAP recommended tools, the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F; Robins, Fein, & Barton, 2009), can be administered at these well-­ child visits. It is important that PCCs know all of the steps in an ASD-specific screening process to The Role of the PCC in Identification avoid missing children with the condition or and Diagnosis of ASD unnecessarily worrying families of children who are developing typically. PCCs are particularly well positioned to identify Another critical strategy that PCCs use for developmental delays and disorders early in the identifying developmental delays is investigating lives of young children. They see children rou- parental concerns that a child is not meeting tinely for health maintenance, so-called well-­ developmental milestones at an age appropriate child visits, whether or not the child is symptomatic time or in an age appropriate manner. PCCs must or the parents are concerned. They therefore may be familiar with normal developmental miledetect developmental delays and disorders before stones and with the early signs and symptoms of the children are fully symptomatic. Early detec- ASD in order to interpret a parent’s description or tion ideally leads to early treatment, which is gen- observation of a child’s development and behaverally associated with relatively favorable ior. Since toddlers and preschoolers do not relioutcomes (Dawson et al., 2010). ably demonstrate their usual behavior in a clinical The main strategy for early detection is to per- office, the PCC may need to rely on targeted form developmental surveillance and develop- parental history or developmental questionnaires. mental screening for all children (Committee on Screening tests can be used in children at Children with Disabilities, 2001). Surveillance increased risk for developmental disorders on the takes place at all encounters; the PCCs use perti- basis of parental concerns. However, the results nent history, careful observation, and interactions of a screening measure in such cases must be with the child to assess developmental levels and viewed with caution. Similarly, screening tests behavioral characteristics. The American may be less sensitive to mild to moderate delays Academy of Pediatrics (AAP) recommends that than is an astute parent. PCCs complete a screening evaluation at 9, 18, The PCC provides particularly close monitorand 24 or 30  months of age. The distinction ing of any child whose past medical history or

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family history places him or her at increased risk for developmental disorders, including ASD. This monitoring goes beyond surveillance and screening. ASD-related risk factors include the following: • Was born preterm and/or at low birth weight • Has a family member with ASD • Has a family member with ASD-related developmental disorders, including intellectual disability, speech disorders, learning disabilities, anxiety, or mental health disorders • Has a known neurological condition, such as seizures • Has a genetic condition, such as fragile X or tuberous sclerosis Monitoring includes the assessment of the child’s developmental status in all domains of function, including learning and applying knowledge, handling tasks and demands, communication, mobility, taking care of the self, and social interactions (World Health Organization, 2007). The assessment also addresses the child’s behavioral status, including ability to attend, engage, and regulate behavior and emotions. Monitoring by the PCC can be accomplished through use of many clinical tools, including eliciting a history from the parents, reviewing informal or standardized questionnaires, direct observation, or direct testing. The PCC may learn how to administer developmental measures or collaborate with colleagues in the office who complete the testing. Even minor deviation from the expected timeline of development or behavior prompts a further evaluation. PCCs vary widely in their experience and comfort making a diagnosis of developmental disorders, including ASD.  If they are familiar with the diagnostic criteria for ASD in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5; American Psychiatric Association, 2013), and are confident in their diagnostic skills, it is within the scope of practice to provide a provisional or definitive diagnosis of ASD. In many cases, because of the substantial variability of symptoms, especially in the youngest children, PCCs want subspecialist

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verification of the diagnosis of ASD.  The AAP recommends that children identified as being at risk for a diagnosis of ASD be referred for a comprehensive developmental and diagnostic assessment (Johnson et  al., 2007). The PCC is responsible for communicating the rationale for a comprehensive evaluation to families. Ideally, PCCs have mechanisms within their practice to assist families in making appropriate appointments. They check that the assessments have taken place and assist families in understanding the results and in taking the next steps. It is critically important for PCCs to be aware that children may be eligible for therapeutic and educational supports for symptoms of ASD even before a definitive diagnosis has been made. Children less than age 3 years may be eligible for early intervention services via Part C of Individuals with Disabilities Education Act (IDEA; Individuals with Disabilities Education Act of 2004 Statute for Part C, 2004). The eligibility criteria and nature of services vary by state. Children who are 3 years and older may qualify for special education services through Part B of IDEA (Individuals with Disabilities Education Act of 2004 Statute for Part B, 2004). The eligibility criteria for special education are established by federal and state law. The PCC should refer the child to the appropriate services (i.e., early intervention for children younger than 3 or the public school system for children 3 and older) at the same time as referring the child for subspecialty diagnosis.

 roviding Ongoing Care to Children P with ASD The standard of care for children with ASD and any complex medical, developmental, and/or psychosocial condition is care within the Primary Care Medical Home (Committee & American Academy of Pediatrics, 2002). Healthcare, education, and therapy for a child with ASD can be very complex and require access to multiple providers, including subspecialty physicians, educational programs (early intervention and special education services), and community agencies

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(community-based mental health providers and social workers). Children with ASD and their families interface with government and financial agencies (Medicaid, Supplemental Security Income (SSI), insurance companies). They may need financial support, social services, or durable medical equipment, such as assistive communication devices. The Primary Care Medical Home coordinates ongoing care across all the diverse providers within the healthcare system and community, providing comprehensive, coordinated healthcare within the primary care setting. It includes partnerships between patients, physicians, subspecialists, and community providers, and it acts as a central resource for the patient and the family. According to the Agency for Healthcare Research and Quality (AHRQ), the medical home encompasses five functions and attributes (U.S. Department of Health & Human Services & AHRQ, n.d.): • Comprehensive care • Patient-centered care and, by extension in pediatrics, family-centered care • Coordinated care • Accessible services • Quality and safety The Primary Care Medical Home offers a range of accessible patient- and family-centered services that are coordinated and culturally sensitive. It serves as a single point of entry for obtaining services. For children with ASD, care in a Primary Care Medical Home increases access to care and decreases financial impact on families (Farmer et  al., 2014; Kogan et  al., 2008). Collaboration between subspecialists and PCC has been shown to improve access, communication, and satisfaction and to decrease costs (Norlin, Romeo, & Rocha, 2007). Ideally, the Primary Care Medical Home includes a patient navigator or care coordinator who can assist families in establishing the plan of care. The patient navigator may be a social worker, nurse, community-based care coordinator, or trained parent from a family resource center or a local ASD organization. This individual does not need a medical degree, although a medi-

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cal background is helpful in cases where children have co-occurring medical conditions. If the Primary Care Medical Home does not have a navigator or care coordinator available, the functions may need to be assumed by a team member within subspecialty care. It is critical that all members of the team know who is assisting the family in establishing the plan of care.

 he Role of Subspecialty Physicians T in Diagnosis In the United States, subspecialty physicians undergo advanced training after completing their training in pediatrics, family medicine, internal medicine, or other specialties. The advanced training varies in terms of duration and required experiences. Pediatric subspecialists spend an additional 3 years in supervised training and then meet criteria for board certification. Advanced practice nurses may also subspecialize. For example, the Primary Care Mental Health Specialist is an advanced practice nurse with additional training and certification (PMHS Role, 2017). Advanced practice nurses also develop expertise within subspecialty practices and complement the roles of the subspecialty physician.

Subspecialists and the Diagnosis of ASD Subspecialty physicians and their associate nurse practitioners have distinctive roles among the professionals in the diagnosis of children with ASD and other neurodevelopmental disabilities. They use the tools of medical history, physical examination, and neurological examination to consider all of the possible diagnostic categories for the child’s complex behaviors and development. They develop a differential diagnosis, where they distinguish a particular disease or condition from others with similar symptoms or clinical features. They can order medical diagnostic evaluations, including blood tests, radiography, neuroimaging, and related techniques, to understand causes or associations with ASD. In

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the case of ASD, they consider whether the child has a genetic, neurological, metabolic, or other medical condition that is a better explanation than ASD for their symptom complex or whether another medical condition, such as fragile X or tuberous sclerosis, is the cause of the child’s ASD symptoms. In ongoing management, they have the distinctive role of prescribing medications to treat aspects of the condition. In many states, access to therapies, including physical therapy, occupational therapy, and speech-language pathology, requires a medical prescription. Several medical subspecialists may serve as leaders or members of the interdisciplinary team that evaluates and treats children with ASD. The most frequent subspecialists in this role are developmental-behavioral pediatricians, child and adolescent psychiatrists, pediatric neurologists, or geneticists. We begin with developmental-­ behavioral pediatrics because this subspecialty often serves as a critical liaison between the Primary Care Medical Home and community-­ based services. Developmental-Behavioral Pediatricians  A developmental-behavioral pediatrician (DBP) is a pediatrician whose subspecialty training focuses on the assessment and management of children and adolescents with developmental or behavioral problems. A DBP is trained to evaluate delays in the development in speech, language, cognitive, and adaptive skills. They diagnose and treat learning disorders, attention and behavioral disorders including attention deficit hyperactivity disorder (Feldman, Blum, Gahman, & Shults, 2015), and emotional or behavioral problems, such as oppositional behaviors and conduct disturbances. They may also be involved in the ongoing management of developmental disabilities including cerebral palsy, spina bifida, intellectual disability, or visual and hearing impairments. The DBP is one of the pediatric subspecialists who may evaluate children referred from primary care for the diagnosis of ASD.  The DBP, like other physicians, uses all of the tools of medicine

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in their investigation (Hansen, Blum, Gaham, Shults, & Committee, 2016). However, they are particularly comprehensive in their approach. A typical DBP diagnostic assessment often begins before the actual patient encounter. Families are asked to complete and return clinic-­ specific and standardized developmental and/or behavioral questionnaires. The assessments typically reviewed in the pre-visit phase are as follows: • Medical documents, such as notes from the child’s PCC and subspecialists, birth hospital discharge reports, results of newborn screening results, and newborn hearing evaluations, previous laboratory, and radiology test results • Audiological evaluation report • Early intervention reports, psychoeducational evaluation and individualized education program (IEP) reports, other educational service reports (504 plans, behavior intervention plans), and school records (e.G., report cards, incident reports, parent-teacher communication binders) • Applied behavior analysis (ABA), speech therapy, occupational therapy, and physical therapy progress reports During the patient visit, the DBP reviews a comprehensive developmental history with the caregivers, which includes information about the child’s early social-emotional and language milestones, play skills, behavior, adaptive or self-help skills, and any history of developmental regression. Parental concerns regarding hearing, vision, sleep, and diet are reviewed. A three-generation family history is thoroughly reviewed, as ASD has been shown to have a strong genetic component. A psychosocial history is collected, including information regarding the family supports and any recent or past stressors. When appropriate, the DBP also performs a clinical interview with the child. After reviewing the history and child’s current functioning, the DBP performs a physical examination. Key features of the physical examination for ASD are as follows:

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• Height and weight: Growth parameters identify evidence of short stature, which may be associated with genetic conditions. Poor weight gain or obesity may be the result of food restriction or selectivity. • Head circumference and the trajectory of head growth: Microcephaly is present in approximately 15% of children with ASD and usually occurs in genetic syndromes (Fombonne, Roge, Claverie, Courty, & Fremolle, 1999). Children with ASD plus macrocephaly may have mutations in the PTEN gene and are at risk for hamartomatous tumor syndromes (Butler et al., 2005; Eng, 2001). • Skin: A thorough skin examination can include the use of a Wood’s lamp to detect the presence of hypopigmented macules. Neurocutaneous disorders, such as tuberous sclerosis complex, are associated with ASD and seizures (Yates et al., 2011). • Dysmorphic features: Unusual facial features or limb malformations may indicate genetic abnormalities associated with ASD.  For example, individuals with fragile X have a long and narrow face, large ears, relative macrocephaly, midface hypoplasia with sunken eyes, and testicular enlargement (post puberty). • Neurological examination: The DBP notes the child’s strength, tone, and gait. Often children with ASD can have atypical gait such as toe walking. Ataxic gait raises the possibility of a genetic syndrome, such as Angelman syndrome or cerebral palsy. Focal neurologic findings, such as asymmetry in tone or reflexes, require further neurologic evaluation and possible neuroimaging. The DBP may conduct the diagnostic assessment with members of the interdisciplinary team (Hansen et  al., 2016). Evaluation by a speech-­language pathologist may be helpful to clarify the child’s receptive, expressive, and pragmatic language skills. Sensorimotor evaluation, often conducted by an occupational therapist, can determine if motor impairments and sensory sensitivities are impairing daily functioning. A developmental, cognitive, or

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n­ europsychological assessment by a psychologist may clarify the child’s levels of functioning. Academic testing by an educational specialist may identify co-­occurring learning disabilities. Comprehensive audiological and vision testing, though rarely coordinated with diagnostic evaluation, may be critical for ruling out sensory impairments. Several ASD-specific standardized instruments are available to help guide the diagnosis of ASD. These instruments may be administered by the DBP or by other members of the interdisciplinary team, including the psychologist or speech-language pathologist. Examples of ASD-­ specific measures are as follows: • Autism diagnostic observation schedule, second edition (ADOS-2): The ADOS-2 assesses social interaction, play, communication, and imaginative use of materials (Filipek et  al., 1999). Four modules are available (the choice of which is based upon the child’s expressive language abilities and in the case of the toddler module, age). The ADOS-2 takes 40–60 min to administer. • Autism diagnostic interview-revised (ADI-R): This 2–3-h clinical interview probes for symptoms of ASD. The ADI-R is typically used in research settings, often combined with the ADOS-2 as the reference standard diagnostic instrument (Falkmer, Anderson, Falkmer, & Horlin, 2013). • Childhood autism rating scale (CARS-2): This 15-item direct observation instrument was designed to facilitate the diagnosis of ASD in children 2 years of age and older. The CARS-2 takes approximately 20–30  min to administer (Schopler, Reichler, DeVellis, & Daly, 1980). The DBP uses this comprehensive data set to determine if the child meets criteria for the diagnosis of ASD. In the current era, the standards are provided by the DSM-5 (American Psychiatric Association, 2013). If a definitive diagnosis cannot be established through these procedures, the DBP may consider other options, as follows:

Primary Care Physicians/Subspecialty Pediatricians

• The child is often referred for a trial of intervention. The child’s response to intervention may clarify the nature of his or her underlying condition. • Observations in naturalistic settings may demonstrate social relationships with familiar adults and children to clarify the nature of the child’s social communication strengths and weaknesses. • Watchful waiting may be considered, though a trial of intervention is often preferable. The DBP is likely to order additional medical testing if the diagnosis of ASD is confirmed. Additional evaluation may be necessary to identify conditions that exist along with ASD and that have important implications for treatment and the child’s overall prognosis. The medical evaluation of a child with ASD may include any of the following procedures: • Genetic testing to identify single gene disorders or copy number variants as a cause of ASD • Fragile X testing to rule out fragile X syndrome • Other specific gene testing, such as MECP2 for Rett syndrome and PTEN for children with macrocephaly • A comprehensive audiological assessment, if not previously performed • Electroencephalogram (EEG) to rule out seizure disorder, particularly in children with recent regression, prolonged staring spells, or unusual repetitive behaviors • Other tests based on history or physical or neurological exam findings, such as metabolic panel or neuroimaging At the conclusion of a diagnostic visit, the DBP recommends treatments that are likely to be beneficial for the child and family. The DBP collaborates with the family of the child with ASD to develop an individualized intervention plan, based on assessment data. The plan requires identification of intervention goals, selection of the intervention strategies, and monitoring progress toward the goals. Goals may include the

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development of new skills in core areas, such as communication, and may also include improvements in problem behaviors. These goals are unique to each child and reflect the child’s individual strengths and weaknesses or needs. For young children, a principal area of focus is in developing a child’s functional communication. Functional communication remains one of the strongest predictors of adaptive outcome for individuals with ASD across the lifespan (Prelock & Nelson, 2012). In general, DBP are familiar with community-­based resources and services that are critical to the education and treatment of children with ASD.  The DBP prescribes community-based therapeutic and education services for children with ASD in the same way that other physicians prescribe medication or surgery. To date, the only treatments proven effective in decreasing ASD symptoms and increasing functioning are education and behavior management. Thus, it is critical that children have access to these treatments. The DBP approach is consistent with the chronic care model, which recognizes that productive interactions between an informed and activated patient and family and a prepared care team occur in the context of health system designs and community resources and services (Improving Chronic Illness Care, 2017). For children with ASD, recommendations may include specific educational programs and behavior treatments, such as applied behavior analysis, occupational therapy, and speech-language therapy. Alternatives to DBPs  Other medical subspecialists, including pediatric neurologists, geneticists, and child psychiatrists, are well trained to complete the basic medical diagnostic evaluation as outlined above. Their emphasis may vary from the descriptions above. They may use other members of the interdisciplinary team to complement their roles in the diagnostic process. For example, a neurologist may focus on the neurological examination and may defer to a psychologist for the interpretation of school-based assessments and performance of the ASD-specific assess-

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ments. A geneticist often works collaboratively with a genetic counselor to obtain a detailed genetic history and may also refer out for ASD-­ specific assessment. Child psychiatrists often delegate the physical examination and subsequent medical evaluation to the primary care clinician or to a nurse practitioner. It is essential that the clinician completing that medical evaluation is well trained and comfortable with ASD and especially that they know critical signs and symptoms that might point to an underlying cause or associated condition. If the medical practitioner is not familiar with community-based resources and services, it is important that they collaborate with psychologists, social workers, care coordinators, or patient navigators to link children and families to educational and behavioral treatment. The comprehensive team that serves children with ASD and their families will invariably differ across geographic locations. One source of variation is the amount and type of resources in the region. Areas of low population density, such as rural communities, may have fewer subspecialty physicians than areas of high population density such as urban centers. In low resource areas, PCCs may play a large role, whereas in high resource areas, subspecialty physicians may play a large role. Variations may result from differences in state laws and regulations. Certainly, the team will differ in different countries where the training and roles of medical professionals are distinct compared to the US model. We do not think that any one arrangement is necessary or sufficient for the accurate diagnosis of children with ASD.  Rather, we recommend that primary care clinicians and medical subspecialists confer locally about the roles and responsibilities that they will each play in this process. Then they can accurately explain the team to the family, who will be informed and prepared for their role in care. The roles and responsibilities may change as the child matures and the priorities and needs shift. Again, nothing substitutes for an open, frank discussion among the team members, including the family, about roles and responsibilities of the care team.

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 he Role of Physicians T in the Ongoing Care of Children with ASD No cure for ASD has yet been discovered. ASD is a long-term condition and, as such, requires chronic interventions. The primary goal of treatment of individuals with ASD is to maximize the child’s functional independence and quality of life. These goals can be accomplished by facilitating the child’s development, promoting socialization, and reducing maladaptive behaviors. Children with ASD frequently have co-occurring issues, often in basic functional domains such as eating/feeding/nutrition, toileting, and sleeping. Managing these conditions is often different in children with ASD than in children with no developmental disorders. The nature of the team that provides ongoing care is highly dependent on the child’s specific constellation of symptoms.

 he Role of Physicians in Family-­ T Centered Support The first step in management is to educate and support families. Primary care and subspecialty physicians may collaborate in this education. Families differ in their knowledge about ASD and their motivation and skills to participate in decision-making (Feldman, Ploof, & Cohen, 1999). Individuals with ASD and their families should be treated as partners throughout the intervention process. Their involvement is essential at maximizing the effectiveness of interventions. Over the long haul, the family has ultimate responsibility for caring for the child. Most families need to learn the causes of ASD and therapeutic treatment options. It is important for families to understand that ASD is not the result of poor parenting, even if adjustments in parenting may be useful in management. Families may need emotional support to participate fully on the team. In some cases, parent-to-parent support offers validation of parental feelings and liberates the family to become strong advocates. In

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some cases, referral of parents for counseling or other appropriate mental health services may be required. The need for support is longitudinal, although the specific needs may vary throughout the child’s lifetime. Treatment of ASD Core Symptoms  Treatment of the core symptoms of ASD (i.e., deficits in social communication and restricted, repetitive patterns of behavior, interests, and activities) focuses on behavioral and educational interventions. Several meta-analyses emphasize that at present, there are no specific treatments that reliably improve the core symptoms of ASD (Mohiuddin & Ghaziuddin, 2013). Thus, the primary care or subspecialty physician or nurse practitioner is responsible for assisting families in getting the appropriate interventions in schools and community-based organizations and agencies. It may require advocacy to assure that the child receives the right services. Often nonphysician members of the healthcare team provide the education and support to families and assist them in advocacy. In the future, medical treatments may become available to treat the core symptoms of ASD. As we learn more about genetic causes of ASD, the possibility of gene therapy increases. Similarly, as research illuminates more about the action of the abnormal genes, specific molecules or proteins or diets may be prescribed. At present, the scientific evidence does not support the use of any of these treatments. A role of the physician is to help families evaluate new information as it becomes available, to embrace safe and promising treatments, and to eschew dangerous or ineffective treatment. Addressing Problematic and Interfering Behaviors  Children with ASD are more likely than other children to have a variety of psychiatric symptoms and conditions that interfere with education and behavior management. Co-occurring problematic or disruptive behaviors include aggression and self-injury, stereotypic preoccupations, and/or perseverations. Tantrums and interpersonal aggression are

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p­ articularly difficult for families of children with ASD; the causes of these behaviors are not readily recognized, and the behaviors disrupt interpersonal relationships. Children with ASD may have severe anxiety in relation to unthreatening and common stimuli. Problem behaviors may be sufficiently severe and persistent that they meet criteria for co-occurring psychiatric diagnoses. Their successful management is sometimes critical to the success of education and behavior treatments. Behavioral intervention treatment programs, individualized according to the child’s functioning and needs, should be attempted to address these issues. Physicians may request evaluation and management of behavior in the community prior to consideration of a medication trial. When the causes of the behaviors are not clear, they may request a functional behavioral assessment (FBA) in the school, home, or community by community-based behavioral therapists. A FBA is a comprehensive and individualized strategy to identify the purpose or function of a child’s problematic behavior, develop and implement a plan to address the problem behavior, and teach appropriate replacement behaviors using positive interventions. An FBA can inform both appropriate behavioral intervention and need for medication management. Behavior treatment typically uses applied behavior analysis (ABA). ABA seeks to decrease undesirable behaviors, teach new skills, and generalize learned skills. Skills are taught through repeated reward-based trials. Physicians may prescribe psychotropic medication for behavior problems that are severe and disruptive (Levy et  al., 2010; Simonoff et  al., 2012). While pharmacologic interventions do not treat the underlying core symptoms of ASD, several reviews demonstrate that they can improve the child’s functioning and ability to participate in behavioral interventions (Coury et  al., 2012; Earle, 2016; Mohiuddin & Ghaziuddin, 2013; Volkmar & Paul, 2014). Pharmacologic interventions can be used in conjunction with appropriate behavioral interventions. Prior to embarking on a medication trial, the treating physician should identify specific target

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objectives. To the extent possible, these targets should be quantifiable. For example, if a child is having 12 tantrums, each lasting 10 or more minutes daily, then the target may be to have no more than 6 tantrums lasting 5 min. The reason to specify target objectives is to have a quantifiable way to assess if the medication has been successful or not. Often, medications are prescribed, the targets are not reached, and additional medications are simply added. Careful monitoring of the target objectives allows the treating physician as well as the family and care team to decide whether a medication is working. If not, then discontinuation may precede introduction of another medication. Table 1 includes associated symptoms of ASD, categories of medications that might be considered for that symptom and specific examples of the medications within that class. To date, only two atypical antipsychotics (risperidone and aripiprazole) are approved by the US Federal Drug Administration (FDA) for treatment of irritability and self-injurious and aggressive behaviors in children with ASD (Baribeau & Anagnostou, 2014). The use of antipsychotic agents often is limited by their side effect profile which may include increased appetite and weight gain, elevated blood sugar secondary to insulin resistance, dyslipidemia, EKG changes (prolonged QT interval), increase in prolactin, gynecomastia, and liver function abnormalities. As such, children who are treated with atypical antipsychotic agents should be monitored regularly. Management of Co-occurring Medical Conditions  Children with ASD have the same basic medical healthcare needs as children without ASD and should be offered routine preventive

healthcare and anticipatory guidance from PCCs at the same ages as all other children. Compared to their typically developing peers, children with ASD are more likely than other children to have a variety of medical symptoms and diagnoses, leading to frequent physician visits and requiring appropriate treatment. Diligent screening for associated health conditions should also be done at every well-child visit within the Primary Care Medical Home and in follow-up with the DBP or other medical subspecialists. Here, we will discuss common associated conditions and options for their evaluation and treatment.

Constipation  Among the many gastrointestinal problems that children with ASD experience, constipation is extremely prevalent. It often arises from very restricted eating, excessive consumption of milk, and/or resistance to complying with toilet sits. Treatment of constipation is important because it can decrease disruptive behaviors and improves toilet training success (Buie et  al., 2010; Carbone, Behl, Azor, & Murphy, 2010; Coury, 2010; Rhoades, Scarpa, & Salley, 2007). The acute onset of fecal soiling or enuresis in a previously toilet-trained child should raise red flag for evaluation of trauma/abuse and acute stressors. A careful review of the onset of symptoms and changes in the child’s psychosocial history may provide valuable clues about possible maltreatment. However, encopresis may also arise from extreme constipation and obstipation and may result in soiling from overflow incontinence. A PCC or subspecialist can evaluate and manage constipation. A comprehensive physical

Table 1  Pharmacological therapies for ASD Associated symptoms Aggressive behavior and irritability

Possible medical treatments Atypical antipsychotics

Hyperactivity, impulsivity

Stimulant medications Non-stimulant medications Stimulant medications Melatonin Selective serotonin reuptake inhibitors

Inattention Sleep disturbance Anxiety and compulsive behaviors

Medication examples Risperidone Aripiprazole Methylphenidate Atomoxetine Methylphenidate Fluoxetine (Vasa et al., 2016)

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examination assesses for signs of fecal mass, anal fissures, dehydration, malnutrition, perianal sensation and function, and lower extremity sensation and strength. The physician should inquire about the quality of the passage of stool to rule out an anatomical cause of constipation, such as Hirschsprung disease. An X-ray of the abdomen may be obtained to estimate the extent of fecal impaction and to exclude lower spine abnormalities. Most children do not require laboratory testing. Based on history or exam, the child may need to be evaluated, including testing for celiac serology, thyroid stimulating hormone, electrolytes, urine culture, or blood lead level. Ambiguity regarding cause or severe consequences of constipation may trigger a referral to a gastroenterologist. Abnormalities in the neurological examination in the context of chronic constipation may indicate spinal cord dysraphism and should prompt further workup, including magnetic resonance imaging (MRI) of the spinal cord or referral to a child neurologist. The treatment of chronic constipation in children with ASD depends on the cause and typically requires a comprehensive treatment program, including dietary changes, a positive reinforcement behavior program, and pharmacological treatments. Increasing water intake and fiber in the diet often significantly helps the problem. However, in many cases, children with ASD who are constipated need behavioral interventions. While the plan may be devised by a physician, often a community-based behavioral therapist is involved to create a behavioral toileting program, including scheduled toilet sits. Parents and teachers implement a reward system and keep a visual record (i.e., sticker chart) to monitor progress with the behavioral plan. Sharing these data with the treating physician allows for customization of the plan. Obesity  The causes of obesity in children with ASD are numerous: genetic conditions associated with ASD, pharmacological treatment, disordered sleep, atypical eating patterns, and limited pursuit of physical activity due to motor impairments (Curtin, Jojic, & Bandini, 2014).

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Primary care or subspecialty physicians should identify children who are overweight or obese and provide anticipatory guidance regarding engaging in healthy eating habits and participating in adequate physical activity. The cause of obesity should be evaluated. One consideration is whether the child has a genetic disorder with a higher propensity for obesity (e.g., Prader-Willi syndrome or Angelman syndrome). Review of early history, developmental skills, and growth charts may provide clues regarding the etiology of obesity. For example, Prader-Willi syndrome typically presents with late acquisition of motor milestones, short stature, symptoms of hyperphagia, and progressive development of obesity. Angelman syndrome is suspected in children with severe motor, speech, and cognitive impairments, postnatal microcephaly, gait ataxia, fascination with water, hand flapping behavior, seizures, and abnormal sleep cycles. Referral for genetic evaluation and testing is appropriate. Hormonal causes of obesity in children with ASD include hypothyroidism. If suspected, consultation with a pediatric endocrinologist may be necessary to evaluate hormonal causes for obesity associated with growth hormone deficiency or cortisol excess.

Food Refusal and Selectivity  Children with ASD may have restricted food preferences, insistence on specific food presentations, and/or insistence on consumption of foods of a specific texture (only purees) or brand. Specific medical causes of food refusal/selectivity include dental cavities or other causes for oral pain. A dentist, especially one who is used to examining children with developmental disorders, may become part of the care team. Gastroesophageal reflux is another cause of pain and discomfort associated with meals. A clue to the presence of reflux is specific food triggers. A gastroenterologist usually makes the definitive diagnosis of reflux. Food allergies or sensitivities may be present. Oral motor difficulties due to hypotonia should be identified and children should be referred for feeding therapy if present.

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After ruling out all above medical causes for food refusal/selectivity, a behavioral feeding ­program to address the behavior problems during mealtimes and resultant difficulties that affect weight and nutrition can be extremely valuable. However, many families of children with ASD struggle with their child’s feeding problems with little or no professional help due to the limited number of specialists dealing with eating and feeding disorders. Whenever possible, subspecialty physicians should refer to community-­ based feeding therapists, such as occupational therapists or speech-language pathologists, who can develop an individualized behavioral feeding intervention program. Pica  The ingestion of non-nutritious substances, pica, is often associated with iron deficiency. The evaluation of a child with ASD and pica may include iron studies and blood lead concentrations. Nutritional deficiencies, lack of ability to discriminate nonedible items, and sensory stimulation are other possible causes of pica, and successful elimination of them will rely on identification of root cause.

Seizures and Staring Spells  While epilepsy occurs in 1–2% of the general population, it has been estimated that epilepsy occurs in approximately 25% of individuals with ASD, including those with genetic syndromes and ASD (Spence & Schneider, 2009). Children with ASD who also have intellectual disability (defined as IQ