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Educating Children with Autism Committee on Educational Interventions for Children with Autism Catherine Lord and James P. McGee, editors Division of Behavioral and Social Sciences and Education National Research Council NATIONAL ACADEMY PRESS Washington, DC
NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, DC 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee re- sponsible for the report were chosen for their special competences and with re- gard for appropriate balance. The study was supported by Contract No. H324F980001 between the National Academy of Sciences and the U.S. Department of Education. Any opinions, find- ings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agen- cies that provided support for this project. Library of Congress Cataloging-in-Publication Data Educating children with autism / Committee on Educational Interventions for Children with Autism, Division of Behavioral and Social Sciences and Education, National Research Council. p. cm. Includes bibliographical references (p. ) and index. ISBN 0-309-07269-7 (cloth) 1. Autistic childrenâEducation (Early childhood)âUnited States. 2. Autism in childrenâUnited States. I. National Research Council (U.S.). Committee on Educational Interventions for Children with Autism. LC4718 .E39 2001 371.94âdc21 2001003875 Additional copies of this report are available from National Academy Press, 2101 Constitution Avenue, N.W., Washington, DC 20418. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area). This report is also available online at http://www.nap.edu Printed in the United States of America Copyright 2001 by the National Academy of Sciences. All rights reserved. Suggested citation: National Research Council (2001) Educating Children with Autism. Committee on Educational Interventions for Children with Autism. Catherine Lord and James P. McGee, eds. Division of Behavioral and Social Sci- ences and Education. Washington, DC: National Academy Press.
National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council The National Academy of Sciences is a private, nonprofit, self-perpetuating soci- ety of distinguished scholars engaged in scientific and engineering research, dedi- cated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its mem- bers, sharing with the National Academy of Sciences the responsibility for advis- ing the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sci- ences in 1916 to associate the broad community of science and technology with the Academyâs purposes of furthering knowledge and advising the federal gov- ernment. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in pro- viding services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. Wm. A. Wulf are chairman and vice chairman, respectively, of the National Research Council.
COMMITTEE ON EDUCATIONAL INTERVENTIONS FOR CHILDREN WITH AUTISM CATHERINE LORD (Chair) Department of Psychology, University of Michigan MARIE BRISTOL-POWER, Mental Retardation and Developmental Disabilities Branch, National Institutes of Health JOANNE M. CAFIERO, Graduate School of Education, Johns Hopkins University PAULINE A. FILIPEK, Departments of Pediatrics and Neurology, University of California at Irvine College of Medicine JAMES J. GALLAGHER, School of Education, University of North Carolina at Chapel Hill SANDRA L. HARRIS, Graduate School of Applied and Professional Psychology, Rutgers University ALAN M. LESLIE, Department of Psychology and Center for Cognitive Science, Rutgers University GAIL G. MCGEE, Department of Psychiatry and Behavioral Sciences, Emory University SAMUEL L. ODOM, Wendell Wright School of Education, Indiana University SALLY J. ROGERS, Department of Psychiatry, University of Colorado Health Sciences Center FRED R. VOLKMAR, School of Medicine, Yale University AMY M. WETHERBY, Department of Communication Disorders, Florida State University JAMES P. McGEE, Study Director NATHANIEL TIPTON, Senior Project Assistant v
Preface John Brian Harley, a British geographer, described the process of making a map as the social construction of knowledge to facilitate under- standing. In many ways, the preparation of this report seemed like that of making a map, not to direct, but to organize and represent information to help progress through the many scientific findings and unknowns in the field of early education in autism. At the request of the U.S. Department of Educationâs Office of Special Education Programs, this project was undertaken by the National Research Council to consider the state of the scientific evidence of the effects of early educational intervention on young children with autistic spectrum disorders. In any such project, the ques- tions become as important as the answers. Our committee represented many different fieldsâincluding clinical and developmental psychology, special education, speech and language pathology, psychiatry, and child neurologyâand we elected to organize our report around the questions that we defined as most important for our areas of inquiry; these ques- tions demand multidisciplinary attention. We attempted to provide a âmapâ for each of these questions that represented scientific literature from our respective fields. The questions cover epidemiology, family support, diagnosis and screening, assistive technology, characteristics of autism, features of inter- vention programs, and how instructional strategies have been put to- gether in comprehensive programs. The questions also include issues in public policy, personnel preparation, and future research. In elementary school, children are first taught the scientific principles of experimentation and replication. Experimental methods are at the core vii
viii PREFACE of the systematic collection and evaluation of knowledge that is science. Yet as Richard Horton recently said, in an article about the future of academic medicine, â. . . straightforward observations rather than intri- cate experimentation often produce the significant step forward,â steps that could then be tested through experimental methods. Our committee believed strongly that we needed to consider the insights provided by systematic observations, as long as the methods for such observations were detailed sufficiently enough to permit us to consider factors that might influence interpretations of the results. Similar to the recent criteria for evaluating treatment guidelines proposed by the American Psycho- logical Association, we elected to focus on convergence and divergence of findings and to evaluate strengths and biases of sources of information, to best represent the current questions and state of evidence concerning the effectiveness of early education in autism. This report presents the results of the committeeâs deliberations. We hope it will have a broad audience, including educators and other profes- sionals who work with and who carry out research with children with autistic spectrum disorders and their families, parents and family mem- bers, legislators and other policy makers, and advocates. Many individuals have made contributions to the panelâs thinking and to various sections of this report by serving as presenters, advisers, and liaisons to useful sources of information. The committee is grateful to Gail Houle, at the Department of Educationâs Office of Special Education Programs, for her continuous support, encouragement, and generous sharing of information most useful to the committee; and to Louis Danielson, at the Department of Education, for his workshop presenta- tion of relevant data. The committee thanks the following authors, who prepared commis- sioned papers and presented them at workshops sponsored by the com- mittee: Grace Baranek, University of North Carolina; Eric Fombonne, Kingâs College London; Howard Goldstein, Florida State University; Myrna Mandlawitz; Scott McConnell, University of Minnesota; Pat Mirenda, University of British Columbia; Marian Sigman, University of California-Los Angeles; Rutherford Turnbull, University of Kansas; Rob- ert Horner, University of Oregon; Phillip Strain, University of Colorado- Denver; Edward Carr, State University of New York at Stony Brook; Connie Kasari, University of California-Los Angeles; Joicey Hurth, Donald Kates, and Kathy Whaley, NECTAS; and Mark Wolery, University of North Carolina. The papers prepared by these authors are available through the National Research Councilâs unit on Behavioral, Cognitive, and Sensory Sciences and Education. The committee also thanks the following program directors who re- sponded to our request for data concerning their programs: Glen Dunlap and Lise Fox, Center for Autism and Related Disorders, University of
PREFACE ix South Florida; Stanley Greenspan, George Washington University Hos- pital; Lynn Koegel and Robert Koegel, Graduate School of Education, University of California, Santa Barbara; O. Ivar Lovaas, University of California-Los Angeles; Gary Mesibov, TEACCH, University of North Carolina; Raymond Romanczyk, Institute for Child Development, Childrenâs Unit for Treatment and Evaluation, State University of New York at Binghamton; and Phillip Strain, Professor of Educational Psychol- ogy, University of Colorado-Denver. We also thank the following invited participants who attended the committeeâs workshops and offered valuable input to its proceedings: Doris Allen, JCC on the Palisades Therapeutic Nursery; Gina Green, Eunice Kennedy Shriver Center; Cathy Pratt, Indiana Resource Center for Autism; Serena Wieder, Interdisciplinary Council on Developmental Disorders; and Isabelle Rapin, Albert Einstein College of Medicine. This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with pro- cedures approved by the Report Review Committee of the National Re- search Council (NRC). The purpose of this independent review is to provide candid and critical comments that will assist the institution in making the published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and respon- siveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We thank the following individuals for their participation in the re- view of this report: H. Carl Haywood, Departments of Psychology and Neurology (emeritus), Vanderbilt University; Susan Hyman, Strong Cen- ter for Developmental Disabilities, University of Rochester; Linda J. Lotspeich, Division of Child and Adolescent Psychiatry and Child Devel- opment, Stanford University School of Medicine; Edwin W. Martin, Divi- sion for Learning Disabilities, Council for Exceptional Children, Arling- ton, VA; Nancy Minshew, Department of Psychiatry, University of Pittsburgh; Michael Rutter, Social, Genetic, and Developmental Psychia- try Research Center, Institute of Psychiatry, London, England; Stephen R. Schroeder, Schiefelbusch Institute for Life Span Studies, University of Kansas; and Linda R. Watson, Division of Speech and Hearing Sciences, Department of Allied Health Sciences, University of North Carolina at Chapel Hill. Although the reviewers listed above have provided many construc- tive comments and suggestions, they were not asked to endorse the con- clusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Richard Wagner, Department of Psychology, Florida State University, and Eleanor Maccoby, Department of Psychology, Stanford University (emerita). Ap- pointed by the National Research Council, they were responsible for mak-
x PREFACE ing certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authors. This report is the collective product of the entire panel, and each member took an active role in drafting sections of chapters, leading dis- cussions, and reading and commenting on successive drafts. In particu- lar, Marie Bristol-Power assumed major responsibility for the chapter on problem behaviors, Pauline Filipek on sensory and motor development, James Gallagher on public policy and personnel preparation, Sandra Har- ris on the role of families, Gail McGee on comprehensive programs and adaptive behavior, Samuel Odom on research methodology and problem behaviors, Sally Rogers on social development and instructional strate- gies, Fred Volkmar on diagnosis and prevalence, and on cognitive devel- opment, and Amy Wetherby on development of communication. Joanne Cafiero contributed significant sections on assistive technology, and Alan Leslie added key discussions on cognitive development. Fred Volkmar also performed detailed reviews of the report drafts, contributing addi- tional valuable insights and information. Staff at the National Research Council made important contributions to our work in many ways. We express our appreciation to Christine Hartel, director of the Board on Behavioral, Cognitive, and Sensory Sci- ences, for her valuable insight, guidance, and support; and to Alexandra Wigdor, former director of the Division on Education, Labor, and Human Performance, for establishing the groundwork and direction of the project. We offer major thanks to Nathaniel Tipton, the panelâs project assistant, who was indispensable in organizing meetings, arranging travel, compil- ing agenda materials, conducting extensive outreach with the interested community, copyediting and formatting the report, and managing the exchange of documentation among the committee members. We are deeply indebted to Eugenia Grohman, who significantly improved the report by dedicated application of her extraordinary editing skills. We also thank Amanda Taylor, at the University of Chicago, for her untiring and competent support of many aspects of the activities of the committee Chair. Catherine Lord, Chair James P. McGee, Study Director Committee on Educational Interventions for Children with Autism
Contents EXECUTIVE SUMMARY 1 Committeeâs Charge, 2 Diagnosis, Assessment, and Prevalence, 2 Role of Families, 4 Goals for Educational Services, 5 Characteristics of Effective Interventions, 6 Public Policies, 7 Personnel Preparation, 7 Research , 8 1 INTRODUCTION 11 Features of Autism, 11 The Challenge of Educating Children with Autism, 12 The Committeeâs Work, 13 Organization of the Report, 19 I GOALS FOR CHILDREN WITH AUTISM AND THEIR FAMILIES 2 DIAGNOSIS, ASSESSMENT, AND PREVALENCE 23 Multidisciplinary Perspectives, 23 Prevalence of Autism and Related Conditions, 24 Screening Instruments, 25 Assessment, 26 Medical Considerations, 30 Implications for Intervention, 31 xi
xii CONTENTS 3 FAMILY ROLES 32 Special Demands on Parents, 33 Teaching Parents Needed Skills, 35 The Advocacy Role, 36 Support for Families, 37 From Research to Practice, 39 4 GOALS FOR EDUCATIONAL SERVICES 40 Interventions as Paths to Goals, 41 Outcomes, 43 II CHARACTERISTICS OF EFFECTIVE INTERVENTIONS 5 DEVELOPMENT OF COMMUNICATION 47 Core Communication Deficits, 48 Planning for Intervention, 50 Intervention Approaches, 52 From Research to Practice, 63 6 SOCIAL DEVELOPMENT 66 Developmental Constructs and Theory, 66 Commonalties and Individual Differences, 69 Planning for Intervention, 71 Interventions Used to Teach Social Behavior, 75 From Research to Practice, 81 7 COGNITIVE DEVELOPMENT 82 Cognitive Abilities in Infants and Very Young Children, 83 Stability and Uses of Tests of Intelligence, 84 General Issues in Cognitive Assessment, 87 Theoretical Models of Cognitive Dysfunction in Autism, 88 Academic Instruction and Outcomes, 90 From Research to Practice, 92 8 SENSORY AND MOTOR DEVELOPMENT 93 Constructs and Deficits, 94 Intervention Techniques, 98 Sensory and Motor Development and Educational Programming, 101 From Research to Practice, 102
CONTENTS xiii 9 ADAPTIVE BEHAVIORS 103 Background, 103 Developmental Constructs and Theory, 105 Form of Adaptive Behaviors, 106 Assessing Adaptive Behavior and Planning for Intervention, 107 Intervention Studies, 110 Intervention Programs, 112 From Research to Practice, 113 10 PROBLEM BEHAVIORS 115 Nature and Persistence of Behavior Problems, 116 Preventive Interventions, 118 After the Fact: Teaching Alternative Behaviors, 121 Other Interventions, 127 From Research to Practice, 131 11 INSTRUCTIONAL STRATEGIES 133 Types of Instructional Strategies, 133 Individual Versus Group Instruction, 137 The Use of Peers as Instructors, 138 The Roles of Selected Disciplines, 138 12 COMPREHENSIVE PROGRAMS 140 Selection and Overview of Model Programs, 140 Theoretical Orientations of Program Models, 147 Convergence and Variability of Program Dimensions, 149 Intervention Studies, 166 III POLICY, LEGAL, AND RESEARCH CONTEXT 13 PUBLIC POLICY AND LEGAL ISSUES 175 Legislation, 176 Adequacy of Services and Resources, 181 14 PERSONNEL PREPARATION 183 Need for a Support Infrastructure, 183 Kinds of Personnel, 186 Providers of Personnel Preparation, 188 Content of Personnel Preparation Programs, 188 Resources, 190
xiv CONTENTS 15 METHODOLOGICAL ISSUES IN RESEARCH ON EDUCATIONAL INTERVENTIONS 193 Separate Literatures, 194 Early Screening and Diagnosis, 195 Description of Participants of Studies, 197 Methodological Issues, 199 From Research to Practice, 209 16 CONCLUSIONS AND RECOMMENDATIONS 211 Diagnosis, Assessment, and Prevalence, 211 Role of Families, 214 Goals for Educational Services, 216 Characteristics of Effective Interventions, 218 Public Policies, 222 Personnel Preparation, 224 Needed Research, 227 REFERENCES 231 BIOGRAPHICAL SKETCHES 290 INDEX 295
Educating Children with Autism