Behavioral Intervention for Young Children with Autism A Manual for Parents and Professionals Edited by Catherine Maurice Coeditors Gina Green, Ph.D. — Stephen C. Luce, Ph.D. Director of Research Vice President of Program Operations New England Center for Autism Bancroft, Inc. @pro-ed 6700 Shoal Creek Boulevard ‘tin, Texas 78757-6897 ‘800/897-8202 Fax 800'897-7633 Order onfine at hitp:/ww-proedie. com@pro-ed 6 1996 by PRO-ED, Inc. 8700 Shoal Creek Boulevard (800/897-3202 Fax 800/397-7633. Order online at http.itvww.proadinc.com All rights reserved. No part of the material protected by this copyright notice may be reproduced or used in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, ‘without the prior written permission of the copyright owner. Library of Congress Catalogingin-Publication Data Behavioral intervention for young children with autism : a manual for parents and professionals / edited by Catherine Maurice : co-editors. Gina Green, Stephen C. Luce. pcm. Includes bibliographical references and indexes. ISBN-13: 978.08807964 ISBN-L0; 0-89079.683-1 (alk. paper) 1, Autistic children—Rehabilitation. 2. Behavior modification, 3, Behavior therapy for children, |, Maurice, Catherine. Il. Green, Gina. Il. Luce, Stephen C. RU509.A9B3427 1996 618,92898206—de20 95-26290 cP PRO-ED grants permission to reproduce forms presented in Chapter § for use with individual students only. ‘This book is designed in Cheltenham Book and Syntax. Printed in the United States of America 12 12 14 15 09 08 07 06Contents ——— Preface + Part 1 Introduction CHAPTER 1 Why This Manual? + 3 Catherine Maurice Part 2 Choosing an Effective Treatment CHAPTER 2 Evaluating Claims about Treatments for Autism +» 15 Gina Green Science, Pseudoscience, and Antiscience 15 Why This Chapter? 16 ‘Types of Evidence 17 Summary 25 Recommendations 26 Which Path: Science or Pseudoscience/Antiscience? 27 Acknowledgments 27 References 27 CHAPTER 3 Early Behavioral Intervention for Autisi Gina Green What Does Research Tell Us? » 29 ‘The Intervention of Choice: Applied Behavior Analysis 29 Early Behavioral Intervention: Research Findings 31 Summary and Implications 38 Acknowledgments 43 References 43vi Contents CHAPTER 4 Are Other Treatments Effective? + 45 Tristram Smith Special Education 45 Speech and Language Therapies 48 Sensory-Motor Therapies 48 Psychotherapies 52 Biological Treatments 53 Conclusions 56 Acknowledgments 56 References 56 Part 3 What to Teach CHAPTER 5 Selecting Teaching Programs + 63 Bridget Ann Taylor and Kelly Ann McDonough Conducting a Skills Assessment 63 Selecting Programs 64 Getting Started 64 Descriptions of the Programs 64 Resources 65 Acknowledgments 65 Beginning Curriculum Guide 66 Intermediate Curriculum Guide 67 Advanced Curriculum Guide 68 Resources 70 Programs 74-177 Part 4 How to Teach CHAPTER 6 Teaching New Skills to Young Children with Autism + 181 Stephen R. Anderson, Marie Taras, and Barbara O'Malley Cannon The Role of Parents 182 Deciding What to Teach 182 Developing a Plan for Instruction 183Contents Structuring the Learning Environment ~ 185 Motivating Your Child to Learn 186 Using Good Instructional Methods 187 Developing the Specific Steps for Instruction 189 Programming Generalization 191 Promoting Lasting Change 191 Assessing Progress and Revising Instruction 192 Dealing with the Resistant Child 192 Summary 193 Useful Books on Applied Behavior Analysis 193 References 193 CHAPTER 7 Behavioral Analysis and Assessment: The Cornerstone to Effectiveness + 195 Raymond G. Romanczyk ‘The Importance of Individualization 195 ‘The Behavioral Approach 196 Importance of Anchor Points 196 Behavioral Assessment 196 Measurement 200 When Things Go Wrong 212 Summary 214 Acknowledgments 214 References 217 Part 5 Who Should Teach? CHAPTER 8 Identifying Qualified Professionals in Behavior Analysis + 221 Gerald L. Shook and Judith . Favell What Formal Training Should Behavior Analysts Have? 221 What Experience Should the Professional Behavior Analyst Have? 222 ‘To Which Professional Organizations are Behavior Analysts Likely to Belong? 222 What Universities Feature Graduate Programs in Behavior Analysis? 222 Are Any Graduate Programs Accredited to Provide Training in Behavior Analysis? 222 Are In¢ Does Any Professional Credential Offer a Specialization in Behavior Analysis? 223 What Knowledge, Skills, and Abilities Should a Qualified Behavior Analyst Have? 224 Summary 226 Behavior Analyst Certification 227 iduals Who Hold Other Professional Licenses Qualified to do Behavior Analysis? 223Addresses 228 Selected Readings 229 CHAPTER 9 Recruiting, Selecting, and Training Teaching Assistants + 234 Jack Scott ‘The Teaching Assistant's Role 231 Parent Respor ies 232 Guidance from Professional Literature 233 Recruiting Teaching Assistants 233 Screening and Selection of Teaching Assistants 237 Training 238 Future Issues 239° References 240 CHAPTER 10 The UCLA Young Autism Model of Service Delivery + 241 ©. Ivar Lovaas Data from Research 241 Criteria for a Competent Behavioral Treatment 242 How to Recruit and Train Staff 243 Workshops 243 Staff Structure 244 Staff Supervision 245 Working with Parents 246 Working with Teachers 247 Failure in Mainstreamed Classes 247 Summary 247 References 248 Part 6 Practical Support: Organizing and Funding CHAPTER 11 Community-based Early Intervention for Children with Autism + 251 Ronald C. Huff ‘There Is Hope 251 ‘Taking Charge 251 Partners for Progress 252 The First Step 252Why Teach at Home? 252 Families for Early Autism Treatment (FEAT) 253 Business Planning and the FEAT Organization 260 Funding 262 Conclusion 265 Acknowledgments 265, References 265 CHAPTER 12 Funding the Behavioral Program: Legal Strategies for Parents » 267 Mark Williamson Outline One: Special Education Funding 268. Outline Two: Insurance Law 275 Outline Three: The Americans with Disabilities Act 276 Appendix: State Offices 279 Part 7 Working with a Speech-Language Pathologist CHAPTER 13 Incorporating Speech-Language Therapy into an Applied Behavior Analysis Program * 297 Robin Parker Coordinating Speech-Language Pathology with an Applied Behavior Analysis Program 297 Aspects of Communication 298 Pragmatics 300 Symbolic Play 301 Additional Issues 301 Conclusions 302 Appendix: Symbolic Play Scale Check List 303 References 306 CHAPTER 14 Strategies for Promoting Language Acquisition in Children ‘Margery Rappaport General Recommendations 307 SectionOne 308, Section Two 309 Section Three 313 Summary 317 Appendix: Language Development Overview 318 Suggested Readings 319 Autism + 307X Contents Part 8 Working with the Schools CHAPTER 15 What Parents Can Expect from Public School Programs + 323 Andrew Bondy What Does the Delaware Autistic Program Offer? 328 What Should be Taught? 324 How Should Staff Teach? 326 How Should Staff be Trained? 328 What Is Full Inclusion? 329 Summary 329 References 330 CHAPTER 16 Supported Inclusion + 334 Susan C. Johnson, Linda Meyer, and Bridget Ann Taylor Why Consider Supported Inclusion? 331 Will Your Child Benefit from an Inclusion Placement? 332 How Do You Identify Potential Inclusion Sites? 334 What Can Be Taught In an Inclusion Setting? 335 How Do You Teach Students In the Inclusion Setting? 337 How Do You Know If Your Child Is Learning In the Inclusion Site? 338 Ist Working? 340 Who's Responsible for Your Child In the Inclusion Setting? 341 Summary 342 Acknowledgments 342 References 342 Part 9 From the Front Lines arents’ Questions, Parents’ Voices CHAPTER 17 Answers to Commonly Asked Questions + 345 Stephen C. Luce and Kathleen Dyer Will Behavioral Intervention Turn My Child into a Robot? 345 What Is the Optimal Age for Starting Intensive Behavioral Therapy? 345 Which Is Better, Home-based Programming or School-based Programming? What About Aversives? 346 345tents xi How Should We Work with Dysfunctional Behaviors? 347 Should I Ignore Stereotypic Behavior or Redirect It? 350 How Much Does Home-based Intensive Therapy Cost? 352 How Many Hours Should My Child Be in Therapy? 352 Are There Behavioral Techniques That Can Help with Sleep Disorders? 353 Are There Strategies I Can Use to Help My Typical Child Interact with His Sibling? 384 Summary 356 References 356 CHAPTER 18 In Search of Michael + 359 ‘Margaret Harris CHAPTER 19 Rebecca's Story + 365 Hlizabeth Harrington CHAPTER 20 Brandon's Journey + 373 Cyndy Kleinfield-Hayes CHAPTER 21 Peter's Story + 377 Elizabeth Braxton About the Authors + 383 Index + 389Preface Until recently, autism has been considered by many asa hopeless, incurable, and absolute condition. Now, however, research suggests that intensive behavioral intervention, begun when a child is between 2 and 5 years old, can have a significant and lasting positive impact. This intervention leads to improvement in vir- tually all children, and in some cases it leads to com- plete eradication of any sign of the disorder. While be- havioral intervention is also the treatment of choice for older children and adults with autism, research shows that its potential for dramatic improvement is greatest with young children. It is that positive re- search that inspires and focuses this book. ‘What is autism? For some time autism has been considered a pervasive developmental disability. Its presumed to be a biologi opment, not an emotional disorder that results from parental behavior or family dysfunction. Exactly what causes the abnormal brain development is not known at this time—in part because autism has not yet been reliably detected by brainscans or other medicaltests. Atpresent, autismis diagnosed by direct observations of a child’s behavior. It is estimated to affect 5-15 of every 10,000 children born worldwide, regardless of race, culture, parental characteristics, or family 50- cioeconomic status. Boys are affected about three to four times more often than girls (Rapin, 1991; Schretbman, 1988). ‘The label autism is applied when a qualified pro- fessional (usually a licensed psychologist or a phys cian) determines that before the age of 3 years, a child displays a number of marked deficits and excesses in several behavioral domains: communication, sym- bolic or imaginative activities (such as play), recipro- cal social interaction, and interests and activities. Within each of these areas, any of several abnormal ties may be observed. Communication impairments, for example, may include no useful vocal or nonvocal communication, specch that is repetitive or nonsen- sical, or well-developed speech that is not used s0- cially (eg, to engage in normal conversation). Development of play behavior may be severely de- layed. Ifit develops at al, it usually lacks spontaneity, variety, and social components. In fact, all social in- teractions are often impaired to the point that the i dividual seems largely uninterested in and unrespon- sive to other people, The range of interests and activities may be very restricted. Often, a few stereo- typed patterns of behavior are repeated over and over, Other problems that are not unique to autism but of ten accompany it include attentional problems; ab- normally high- or low-activity levels; disruptive be- havior (eg. tantrums, shrieking); destructive behav- lor toward property, others, or self; abnormal responses to sensory stimull; seizures; and apparent insensitivity to physical dangers and pain, Many chil dren with autism also have great difficulty learning. A small percentage score in the normal range on tests of cognitive abilities, but 75%-80% {unction in the mild to severe range of mental retardation (Rapin, 1991). A diagnosis of autism should be based on exten- sive direct observation of the child and comprehen- sive interviews with family members and other care- givers. A number of behavioral checklists can help differentiate autism from other childhood disorders, (eg., mental retardation without autism, specific language disorders, schizophrenia), and some stan- dardized assessments can help define the extent of developmental delay or deviation. However, all psy- chological, educational, and language tests are sub- ject to problems of rel identifying autism (American Psychiatrie Association, 1994; Rapin, 1991; Rutter & Schopler, 1987). Moreover, the wide range of behaviors associated with autism and the individu- ality of each child's behavioral profile make a typical case somewhat difficult to define. In other words, the presence or absence of single behaviors cannot de- finitively rule out or confirm autism, although cliches, caricatures, and overgeneralizations about autism, abound. To give but one example of such an over- generalization, public perception seems to be that all, autistic children rock their bodies back and forth. One, possible result of this perception might be that a mother and father may have concerns about their chiid, butdelay seekinga diagnosis becausethey have read that autistic children rock, and their child does not happen to rock, To further complicate these difficulties, many pe- diatricians, to whom parents first turn when they sus- pect a problem in their child, tend to not recognize the early symptoms of the disorder, Many parents of autistic children report to us that their pediatrician told them to “Wait and see. He'll grow out of it.” When a diagno: inally made, it is usually made by one or several specialists, as noted above. It is not unusual, however, for different professionals to label the disorder differently, as in the case where one professional says “autism,” the next says “per- vasive developmental disorder with autistic fea- tures,” and the next says “pervasive developmental xiiixiv Preface disorder, not otherwise specified.” While some of these labels may make parents feel better, no hard evidence exists that any of these different labels should be taken any less seriously than the term autistic. There seems to be an understandable ten- dency for many parents and professionals to want to avoid, at all costs, the word autistic. A parent may say, for instance, “Dr. X says my child is not autistic, she only has autistic tendencies,” or “she only has pervasive developmental disorder.” However, if the arent is encouraged to then make therapeutic de- cisions based on the impression that the child’s con- dition is very mild or transient, those decisions may not be optimal for the chile Taken together, it is obvious that all of these di- agnostic difficulties can (and often do) lead to prob- lems of delay, denial, confusion, or psychological tur- ‘moil for parents. Unfortunately the question of how to diagnose and label a child is only one of many con- troversial topics in the field of autism research and treatment, Another is the optimal age for such a diag- nosis, and the optimal age to begin treatment. Some professionals refuse to confer a diagnosis until the child is 3 or 4 or even 5, at which point they may fi nally label him or her “autistic.” Meanwhile, 1, 2, or 3 years may have passed, years in which the child could have been engaged in a structured, intensive treat- ‘ment program if parents receive several vague, placating, or con- flicting opinions from different diagnosticians, but continue to have grave concerns over a child's devel- opment, they might consider beginning a program of early intervention anyway. This may be preferable to ‘waiting for everyone to agree on the diagnosis and los- ing valuable time in the process. Itis our hope that this manual will offer some as- sistance to parents, and to the professionals who aid them, in the challenging task of making science-based treatment decisions, and procuring effective early in- tervention for children with autism. ~The Editors REFERENCES ‘American Psychiatrie Association. (1994). Diagnostic and statistical manuat (4th ed). Washington, DC: Author. Rapin, I. (1991). Autistic children: Diagnosis and clinical fea- tures. Supplement to Pediatrics, 87, 751-760. Rutter, M,, & Schopler, F. (1987), Autism and pervasive de- velopmental disorders: Concepts and diagnostic is- sues. Journal of Autism and Developmental Disorders, 17, 158-186. Schreibman, L, (1988). Autism. Newbury Park, CA: Sagei IntroductionA CHARTER ONE Why This Manual? Catherine Maurice ‘The phone rings. “Hello?” The caller might be the mother of a child newly diagnosed with autism. Sometimes she is nervous, almost breathless with anxiety, She has many questions—questions that | have heard over and over again. “I want to get my little boy into behavioral ther- apy. How do I start? Where can I find trained help?” “How can I pay for this therapy? How much does. it cost?” “My little girl is 6 years old, Is it too late to start a behavioral program?” “My daughter is only 2. 'm worried about such an, intensive level of therapy.” “My son does smile and look at me, Will behav- ioral therapy destroy his spirit?” “I want to do a behavioral program, but I want to combine it with occupational therapy (or speech therapy or vitamin therapy, etc.). Can I combine sev- eral different approaches?” I could go on and on. Over the past 2 years, the questions are always the same, and they are all urgent. Parents call because { wrote a book about our own family’s struggle with autism (Maurice, 1993). ‘Two of our children, first our daughter and then our younger son, had been diagnosed with the condition, both around the age of 2. In the beginning, | had the good fortune to hear about an article describing the remarkable results obtained by Dr. O. Ivar Lovaas, of the University of California at Los Angeles (Chance, 1987). Dr. Lovaas, we learned, had achieved unprece- dented results for young children with autism by treating them in an intensive behavioral program that typically entailed up to 40 hours a week of individual- ized instruction, From the article, I formed a very hazy under- standing of the approach Dr. Lovaas had employed with the children. | understood it to be a form of “behavior modification,” and at the time, that term conveyed to me a mechanistic, forceful method of training dogs and seals and even rodents—nothing to which any loving parent would ever subject a child. I was encouraged by Dr. Lovaas’s positive results, but dismayed by any thought of using behavior modifica- tion on my 2year-old, I was disabused of these prejudices and precon- ceptions when, out of sheer desperation, I agreed to let a young woman named Bridget Taylor show me what this type of teaching entailed, for a strictly con- trolled trial period in my home (“No aversives! This is my house'”). Bridget was able to demonstrate, in a very short time, how effective an approach based on, the principles of Applied Behavior Analysis can be for children with autism, Under her tutelage, my daugh- ter not only began to learn how to communicate, but started to make eye contact, to pay attention to us and to the world around her. {remember the day that first began to believe had been wrong about behav- ioral intervention. It was the day that my Anne-Marie walked to the door on Bridget's arrival, looked up into her eyes, and smiled, ‘Thank God I was able to trust my daughter's smnik ing eyes, and not my own preconceptions about this, type of intervention. Under the guidance of Bridget and several other therapists, we were able to bring first our daughter and then later our son to health, (Perry, Cohen, & DeCarlo, 1995). But our experience left me frustrated, indeed appalled, by the continuing ignorance about behav- ioral intervention on the part of various “autism, experts,” many of whom had not kept abreast of the professional literature. I decided to write about my fam- lly’s experience. In June 1993, my book was published, and then the stream of letters and phone calls began. knew from reading these letters and listening to these phone calls, and from my own experience, that parents (and other people who care about our chil- dren) had a vital need for credible information. When, we are faced with a diagnosis of autism, we need to know how to sift through various recommendations, how to discriminate and judge among our options. We need factual information, preferably science- based and timetested. We don't need everyone's, opinion; we need objective data with the highest pos- sible degree of reliability. We need guidance that is truly welHounded and objectively validated. Tknew that could offer parents some understand ing, for I had seen that our experience with diagnosis, sorrow, fear, miracle cures, inflated promises, false expertise, and uncertainty was not unique. Indeed, 3