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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 responsible for the report were chosen for their special competences and with regard 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, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies 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.
Includes bibliographical references (p.) and index.
ISBN 0-309-07269-7 (cloth)
1. Autistic children—Education (Early childhood)—United States. 2. Autism in children—United States. I. National Research Council (U.S.). Committee on Educational Interventions for Children with Autism.
LC4718 .E39 2001
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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 Sciences and Education. Washington, DC: National Academy Press.
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National Research Council
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COMMITTEE ON EDUCATIONAL INTERVENTIONS FOR CHILDREN WITH AUTISM
CATHERINE LORD (Chair)
Department of Psychology, University of Michigan
Mental Retardation and Developmental Disabilities Branch, National Institutes of Health
Graduate School of Education, Johns Hopkins University
Departments of Pediatrics and Neurology, University of California at Irvine College of Medicine
School of Education, University of North Carolina at Chapel Hill
Graduate School of Applied and Professional Psychology, Rutgers University
Department of Psychology and Center for Cognitive Science, Rutgers University
Department of Psychiatry and Behavioral Sciences, Emory University
Wendell Wright School of Education, Indiana University
Department of Psychiatry, University of Colorado Health Sciences Center
School of Medicine, Yale University
Department of Communication Disorders, Florida State University
JAMES P.McGEE, Study Director
NATHANIEL TIPTON, Senior Project Assistant
John Brian Harley, a British geographer, described the process of making a map as the social construction of knowledge to facilitate understanding. 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 Education’s 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 questions become as important as the answers. Our committee represented many different fields—including clinical and developmental psychology, special education, speech and language pathology, psychiatry, and child neurology—and we elected to organize our report around the questions that we defined as most important for our areas of inquiry; these questions demand multidisciplinary attention. We attempted to provide a “map” 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 intervention programs, and how instructional strategies have been put together 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
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, “…straightforward observations rather than intricate experimentation often produce the significant step forward,” 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 Psychological 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 committee’s deliberations. We hope it will have a broad audience, including educators and other professionals who work with and who carry out research with children with autistic spectrum disorders and their families, parents and family members, legislators and other policy makers, and advocates.
Many individuals have made contributions to the panel’s 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 Education’s 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 presentation of relevant data.
The committee thanks the following authors, who prepared commissioned papers and presented them at workshops sponsored by the committee: Grace Baranek, University of North Carolina; Eric Fombonne, King’s 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; Robert 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 Council’s unit on Behavioral, Cognitive, and Sensory Sciences and Education.
The committee also thanks the following program directors who responded to our request for data concerning their programs: Glen Dunlap and Lise Fox, Center for Autism and Related Disorders, University of
South Florida; Stanley Greenspan, George Washington University Hospital; 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, Children’s Unit for Treatment and Evaluation, State University of New York at Binghamton; and Phillip Strain, Professor of Educational Psychology, University of Colorado-Denver.
We also thank the following invited participants who attended the committee’s 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 procedures approved by the Report Review Committee of the National Research 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 responsiveness 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 review of this report: H.Carl Haywood, Departments of Psychology and Neurology (emeritus), Vanderbilt University; Susan Hyman, Strong Center for Developmental Disabilities, University of Rochester; Linda J. Lotspeich, Division of Child and Adolescent Psychiatry and Child Development, Stanford University School of Medicine; Edwin W.Martin, Division for Learning Disabilities, Council for Exceptional Children, Arlington, VA; Nancy Minshew, Department of Psychiatry, University of Pittsburgh; Michael Rutter, Social, Genetic, and Developmental Psychiatry 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 constructive comments and suggestions, they were not asked to endorse the conclusions 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). Appointed by the National Research Council, they were responsible for mak-
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 discussions, and reading and commenting on successive drafts. In particular, 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 Harris 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 strategies, Fred Volkmar on diagnosis and prevalence, and on cognitive development, 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 additional 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 Sciences, 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 panel’s project assistant, who was indispensable in organizing meetings, arranging travel, compiling 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