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Executive Summary Autistic spectrum disorders are present from birth or very early in development and affect essential human behaviors such as social interac- tion, the ability to communicate ideas and feelings, imagination, and the establishment of relationships with others. Although precise neurobio- logical mechanisms have not yet been established, it is clear that autistic spectrum disorders reflect the operation of factors in the developing brain. Autistic disorders are unique in their pattern of deficits and areas of rela- tive strengths. They generally have lifelong effects on how children learn to be social beings, to take care of themselves, and to participate in the community. The autism spectrum occurs along with mental retardation and language disorder in many cases. Thus, educational planning must address both the needs typically associated with autistic disorders and needs associated with accompanying disabilities. Education, both directly of children, and of parents and teachers, is currently the primary form of treatment for autistic spectrum disorders. The education of children with autistic disorders was accepted as a public responsibility under the Education of All Handicapped Children Act in 1975. Despite the federal mandate, however, the goals, methods and resources available vary considerably from state to state and school sys- tem to school system. In the last few years, due to a confluence of factors, courts have become increasingly active in determining the methods and resources allocated by school systems for the education of young children with autistic spectrum disorders. 1
2 EDUCATING CHILDREN WITH AUTISM COMMITTEEâS CHARGE At the request of the U.S. Department of Educationâs Office of Special Education Programs, the National Research Council formed the Commit- tee on Educational Interventions for Children with Autism and charged the committee to integrate the scientific, theoretical, and policy literature and create a framework for evaluating the scientific evidence concerning the effects and features of educational interventions for young children with autism. The primary focus of the charge was early intervention, preschool, and school programs designed for children with autism from birth to age 8. The charge included specific suggestions to examine sev- eral issues pertaining to education of children with autism: early inter- vention, diagnosis and classification, the rights of children with autism under the Individuals with Disabilities Education Act, inclusion, and assistive technology. The committeeâs key conclusions and recommendations are summa- rized below, organized by the significant issues relevant to educational interventions for young children with autistic spectrum disorders. Each section begins with the key questions the committee addressed. The final chapter of this report presents the committeeâs complete conclusions and recommendations. DIAGNOSIS, ASSESSMENT, AND PREVALENCE What is the role of diagnosis, classification, and assessment in providing appropriate educational services to young children with autistic spectrum disor- ders? Are the specific deficits associated with a diagnosis or educational classifi- cation of autistic spectrum disorder important to planning and implementing educational interventions? Autistic spectrum disorders vary in severity of symptoms, age of onset, and the presence of various features, such as mental retardation and specific language delay. The manifestations of autistic spectrum dis- orders can differ considerably across children and within an individual child over time. Even though there are strong and consistent commonali- ties, especially in social deficits, there is no single behavior that is always typical of autism or any of the autistic spectrum disorders and no behav- ior that would automatically exclude an individual child from diagnosis of autistic spectrum disorder. Because of the continuity across autistic spectrum disorders, this report addresses both autistic disorder specifi- cally (referring to the more narrowly defined syndrome) and autistic spec- trum disorder, (including autistic disorder, pervasive developmental dis- order-not otherwise specified [PDD-NOS], Aspergerâs Disorder, and
EXECUTIVE SUMMARY 3 Childhood Distintegrative Disorder). Because of its special characteris- tics, Rettâs syndrome is not specifically considered in this report, though children with Rettâs syndrome may require similar services to children with autism in some circumstances. It is clear that autistic spectrum disorders have effects on develop- ment in ways that affect childrenâs educational goals and the appropriate strategies to reach them. It is also clear that deficits in language develop- ment, nonverbal communication, cognitive abilities, and other areas have distinct effects on behavior and outcome in ways that have implications for the educational goals of children with autistic spectrum disorders, as well as other children. However, it is not yet clear the degree to which specific educational goals and strategies are associated with particular diagnoses within the autism spectrum, such as Aspergerâs Disorder, Childhood Disintegrative Disorder, or PDD-NOS, once factors such as language development and cognitive abilities are taken into account. Al- though experienced clinicians and educators can reliably identify the con- stellation of behaviors that define autistic spectrum disorders even in very young children, distinctions among âclassicalâ autism and atypical autism, PDD-NOS, and Aspergerâs Disorder are not nearly as reliable. Thus, though the identification of categories within the autism spectrum is necessary for some research purposes and is an important area for research, the educational and clinical benefit of making such distinctions is not yet clear. Altogether, the most important considerations in devis- ing educational programs for children with autistic spectrum disorders have to do with recognition of the autism spectrum as a whole, with the concomitant implications for social, communicative, and behavioral de- velopment and learning, and with the understanding of the strengths and weaknesses of the individual child across areas of development. A child who receives a diagnosis of any autistic spectrum disorder should be eligible for special educational programming under the educational cat- egory âautismâ regardless of the specific diagnostic category within the autism spectrum. The committee recommends that children with any autistic spectrum disorder (autistic disorder, Aspergerâs disorder, atypical autism, PDD- NOS, childhood distintegrative disorder), regardless of level of severity or function, be eligible for special education services within the category of autism. With adequate time and training, the diagnosis of autism can be made reliably in 2-year-olds by professionals experienced in the diagnostic as- sessment of young children with autistic spectrum disorders, and chil- dren are beginning to be referred even before age two years. Many fami- lies express concern about their childrenâs behavior, usually to health
4 EDUCATING CHILDREN WITH AUTISM professionals, even before this time, and more children are being referred for specific educational interventions for autistic spectrum disorders. However, diagnostic and screening instruments effective with children under age 2 have not yet been identified. Although children with autistic spectrum disorders share some disabilities with children with other de- velopmental disorders, they offer unique challenges to families, teachers, and others who work with them, particularly in nonverbal and verbal communication and behavioral problems. The committee recommends that the National Institutes of Health and the Department of Educationâs Office of Special Education Programs, in cooperation with professional organizations and through support for research and training, promote early identification, appropriate screen- ing, and multidisciplinary assessment for young children with autistic spectrum disorders, as is done for children with vision or hearing prob- lems. In addition, because of variability in early diagnosis and test scores, young children with autistic spectrum disorders should always receive an appropriate follow-up diagnostic and educational assessment within 1-2 years after initial evaluation. ROLE OF FAMILIES What are the needs of families of children with autistic spectrum disorders and how can they effectively participate in education and intervention? Having a child with an autistic spectrum disorder is a challenge for any family. Involvement of families in the education of young children with autistic spectrum disorders can occur at multiple levels. Parents can learn to successfully apply skills to changing their childrenâs behavior. Parentsâ use of effective teaching methods, support from within the fam- ily and the community, and access to balanced information about autistic spectrum disorders and the range of appropriate services can contribute to successful child and family functioning. It is crucially important to make information available to parents to ensure their active role in advo- cacy for their childrenâs education. The committee recommends that familiesâ participation should be supported in education through consistent presentation of information by local school systems, through ongoing consultation and individual- ized problem solving, and through the opportunity to learn techniques for teaching their children new skills and reducing behavioral problems. Although families should not be expected to provide the majority of edu- cational programming for their child, the parentsâ concerns and perspec- tives should actively help shape educational planning.
EXECUTIVE SUMMARY 5 GOALS FOR EDUCATIONAL SERVICES What are appropriate goals for educational services provided to young chil- dren with autistic spectrum disorders, and how are the goals best measured as outcomes in scientific studies, so that effectiveness of various programs may be determined? At the root of questions about the most appropriate educational inter- ventions for autistic spectrum disorders are differences in assumptions about what is possible and what is important to give students with these disorders through education. The appropriate goals for educational ser- vices for children with autistic spectrum disorders are the same as those for other children: personal independence and social responsibility. These goals imply progress in social and cognitive abilities, verbal and nonverbal communication skills, and adaptive skills; reduction of behav- ioral difficulties; and generalization of abilities across multiple environ- ments. A large body of research has demonstrated substantial progress in response to specific intervention techniques in relatively short periods of time (e.g., several months) in many specific areas, including social skills, language acquisition, nonverbal communication, and reductions in chal- lenging behaviors. Longitudinal studies over longer periods of time have documented changes in IQ scores and in core deficits (e.g., joint atten- tion), in some cases related to treatment, that are predictive of longer- term outcomes. However, childrenâs outcomes are variable, with some children making substantial progress and others showing very slow gains. Although there is evidence that interventions lead to improvements, there does not appear to be a clear, direct relationship between any particular intervention and childrenâs progress. Thus, while substantial evidence exists that treatments can reach short-term goals in many areas, gaps remain in addressing larger questions of the relationships between par- ticular techniques and specific changes. The committee recommends that ongoing measurement of treatment objectives and progress be documented frequently across a range of skill areas in order to determine whether a child is benefiting from a particular intervention and that the intervention be adjusted accordingly. Appro- priate objectives should be observable, measurable behaviors and skills. These objectives should be able to be accomplished within a year and be anticipated to affect a childâs participation in education, the community, and family life.
6 EDUCATING CHILDREN WITH AUTISM CHARACTERISTICS OF EFFECTIVE INTERVENTIONS What are the characteristics of effective interventions in educational pro- grams for young children with autistic spectrum disorders? There is general agreement across comprehensive intervention pro- grams about a number of features of effective programs. However, prac- tical and, sometimes, ethical considerations have made well-controlled studies with random assignment (e.g., studies of treatments that system- atically vary only one dimension) almost impossible to conduct. In sev- eral cases, features have been identified through correlational or comparative analyses and then assumed to be factors of importance in intervention programs, without further direct evaluation. The consensus across programs is generally strong concerning the need for: early entry into an intervention program; active engagement in intensive instructional programming for the equivalent of a full school day, including services that may be offered in different sites, for a mini- mum of 5 days a week with full-year programming; use of planned teach- ing opportunities, organized around relatively brief periods of time for the youngest children (e.g., 15- to 20-minute intervals); and sufficient amounts of adult attention in one-to-one or very small group instruction to meet individualized goals. Overall, effective programs are more simi- lar than different in terms of levels of organization, staffing, ongoing monitoring, and the use of certain techniques, such as discrete trials, inci- dental learning, and structured teaching periods. However, there are real differences in philosophy and practice that provide a range of alternatives for parents and school systems. The committee recommends that educational services begin as soon as a child is suspected of having an autistic spectrum disorder. Those services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, and develop- mentally appropriate educational activity toward identified objectives. What constitutes these hours, however, will vary according to a childâs chronological age, developmental level, specific strengths and weak- nesses, and family needs. Each child must receive sufficient individual- ized attention on a daily basis so that adequate implementation of objec- tives can be carried out effectively. The priorities of focus include functional spontaneous communication, social instruction delivered throughout the day in various settings, cognitive development and play skills, and proactive approaches to behavior problems. To the extent that it leads to the acquisition of childrenâs educational goals, young children with an autistic spectrum disorder should receive specialized instruction in a setting in which ongoing interactions occur with typically developing children.
EXECUTIVE SUMMARY 7 PUBLIC POLICIES What public policies at the local, state, and federal level will best ensure that individual children with autistic spectrum disorders and their families have ac- cess to appropriate education? The Individuals with Disabilities Education Act contains the neces- sary provisions for ensuring rights to appropriate education for children with autistic spectrum disorders. Yet the implementation and specifica- tion of these services are uncertain. The treatment of autistic spectrum disorders often involves many disciplines and agencies, which confuses lines of financial and intellectual responsibility and complicates assess- ment and educational planning. However, a number of states have suc- cessfully addressed some of these challenges and can provide model ap- proaches for doing so. The committee recommends that coordination across services and funding at federal and state levels should be encouraged through several mechanisms: the creation of a federal joint agency task-force on autistic spectrum disorders; state monitoring of coordination among service de- livery systems; minimum standards for personnel in educational and early intervention settings for children with autistic spectrum disorders; and the availability of ombudspersons within school systems who are knowl- edgeable about autistic spectrum disorders and are independent of the school program. Coordinated, systematic strategies should be developed to fund the interventions that are necessary in local communities for chil- dren under age 3 years and in local schools so that this cost is not borne totally by parents or local school systems. PERSONNEL PREPARATION How should personnel who work with children with autistic spectrum disor- ders be prepared and trained to guarantee a sufficient number of well-qualified specialists and regular teachers and administrators? The nature of autistic spectrum disorders and other disabilities that frequently occur with them has significant implications for approaches to education and intervention at schools, in homes, and in communities. Approaches that emphasize the use of specific one-size-fits-all packages of materials and methods may understate the multiple immediate and long-term needs of individual students for behavioral support and for instruction across areas. Teachers and other professionals and parapro- fessionals who often provide the bulk of service to very young children need familiarity with the course of autistic spectrum disorders and the
8 EDUCATING CHILDREN WITH AUTISM range of possible outcomes and with the many methods that fit into best practices. Specific problems in generalization and maintenance of behav- iors also affect the kind of training needed, as does the wide range of IQs and verbal skills associated with autistic spectrum disorders, from pro- found mental retardation and severe language impairments to high intel- ligence. Multiple exposures, opportunities to practice, and active involvement are all important aspects of learning for teachers and other professionals. Technical assistance consisting of ongoing consultation, hands-on oppor- tunities to practice skills, and building on the knowledge of teachers as they acquire experience with children with autistic spectrum disorders are crucial. Administrative attitudes and support are critical in improv- ing schools, as are explicit strategies for keeping skilled personnel within the field. Providing knowledge about autistic spectrum disorders to spe- cial education and regular education administrators as well as to special- ized providers with major roles in early intervention (e.g., speech lan- guage pathologists) are also critical in proactive change. The committee recommends that the relevant state and federal agen- cies, including the Office of Special Education Programs, should acceler- ate their personnel preparation funds for 5 years for those who work with, and are responsible for, children with autistic spectrum disorders and their families. These efforts should be part of a larger effort to coor- dinate and collaborate with the already established infrastructure for spe- cial education, including regional resource centers and technical assis- tance programs. RESEARCH What research and further scientific investigations of effective education for young children with autistic spectrum disorders are needed? A number of comprehensive programs report results on their effects, but interpretations of these results have been limited by several factors: practical and ethical difficulties in randomly assigning children and fami- lies to treatment groups; problems in selecting contrast groups; inadequate description of the children and families who participated in the studies; and lack of fidelity of treatment or generalization data. There is little evidence concerning the effectiveness of discipline-specific therapies, and there are no adequate comparisons of different comprehensive treatments. However, there is substantial research supporting the effectiveness of many specific therapeutic techniques and of comprehensive programs in contrast to less intense, nonspecific interventions. Research would yield
EXECUTIVE SUMMARY 9 more valuable information if there were minimal standards in design and description of intervention projects. The committee recommends that all intervention studies provide ad- equate information on the children and families who participated and those who chose not to participate or withdrew from participation, de- scribe the intervention in sufficient detail so that an external group could replicate it, measure fidelity of treatment, and include objective measures of short-term and long-term outcomes that are assessed by independent examiners. The federal agencies involved in autism initiativesâinclud- ing the Office of Special Education Programs, the Office of Educational Research and Improvement, the National Institute of Child Health and Human Development, the National Institute of Mental Health, the Na- tional Institute on Deafness and Other Communication Disorders, and the National Institute of Neurological Disorders and Strokeâshould es- tablish a joint task force and call for proposals for longitudinal and other intervention studies that assess the relative effectiveness of treatments and that investigate the effectiveness of different educational and treat- ment models for children, with individual differences defined either ac- cording to broadly delineated categories (e.g., children with autistic spec- trum disorders with average or greater intelligence) or according to continuous dimensions (e.g., chronological age), and that consider the effects of selection or assignment. Competitively funded initiatives in early intervention in autistic spectrum disorders should routinely pro- vide sufficient funding for short- and long-term assessment of program efficacy. Complementary research on the development of more specific, precise measures of outcome, educational skills, and sequences should be supported to assess the effects of interactions between family variables, child factors, and responses to interventions, and to identify the active ingredients and mediating variables that influence effects of treatment. In summary, education at home, at school, and in community settings remains the primary treatment for young children with autistic spectrum disorders. Many specific techniques and several comprehensive programs have clear effects on important aspects of these childrenâs learning. Yet links between interventions and improvements are also dependent on characteristics of the children and aspects of the treatments that are not yet fully understood. The challenges are to ensure implementation of what is already known so that every child benefits from this knowledge and to work from existing research to identify more effective educational interventions for all children with autistic spectrum disorders.