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Educating Children with Autism (2001)

Chapter:16 Conclusions and Recommendations

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16 Conclusions and Recommendations This chapter summarizes the committee’s conclusions about the state of the science in early intervention for children with autistic spectrum disorders and its recommendations for future intervention strategies, pro- grams, policy, and research. The chapter is organized around seven key areas pertaining to educational interventions for young children with autistic spectrum disorders: how the disorders are diagnosed and as- sessed and how prevalent they are; the effect on and role of families; appropriate goals for educational services; characteristics of effective in- terventions and educational programs; public policy approaches to en- suring access to appropriate education; the preparation of educational personnel; and needs for future research. DIAGNOSIS, ASSESSMENT, AND PREVALENCE Conclusions Autism is a developmental disorder of neurobiologic origin that is defined on the basis of behavioral and developmental features. Autism is best characterized as a spectrum of disorders that vary in severity of symptoms, age of onset, and association with other disorders (e.g., mental retardation, specific language delay, epilepsy). The manifestations of au- tism vary considerably across children and within an individual child over time. There is no single behavior that is always typical of autism and no behavior that would automatically exclude an individual child from a 211

212 EDUCATING CHILDREN WITH AUTISM diagnosis of autism, even though there are strong and consistent com- monalities, especially relative to social deficits. The large constellation of behaviors that define autistic spectrum dis- orders—generally representing deficits in social interaction, verbal and nonverbal communication, and restricted patterns of interest or behav- iors—are clearly and reliably identifiable in very young children to expe- rienced clinicians and educators. However, distinctions among classical autism and atypical autism, pervasive developmental disorder-not other- wise specified (PDD-NOS), and Asperger’s disorder can be arbitrary and are often associated with the presence or severity of handicaps, such as mental retardation and severe language impairment. Identifying narrow categories within autism is necessary for some research purposes; however, the clinical or educational benefit to subclas- sifying autistic spectrum disorders purely by diagnosis is debated. In contrast, individual differences in language development, verbal and non- verbal communication, sensory or motor skills, adaptive behavior, and cognitive abilities have significant effects on behavioral presentation and outcome, and, consequently, have specific implications for educational goals and strategies. Thus, the most important considerations in pro- gramming have to do with the strengths and weaknesses of the indi- vidual child, the age at diagnosis, and early intervention. With adequate time and training, the diagnosis of autistic spectrum disorders can be made reliably in 2-year-olds by professionals experi- enced in the diagnostic assessment of young children with autistic spec- trum disorders. Many families report becoming concerned about their children’s behavior and expressing this concern, usually to health profes- sionals, even before this time. Research is under way to develop reliable methods of identification for even younger ages. Children with autistic spectrum disorders, like children with vision or hearing problems, re- quire early identification and diagnosis to equip them with the skills (e.g., imitation, communication) to benefit from educational services, with some evidence that earlier initiation of specific services for autistic spectrum disorders is associated with greater response to treatment. Thus, well meaning attempts not to label children with formal diagnoses can deprive children of specialized services. There are clear reasons for early identifi- cation of children, even as young as two years of age, within the autism spectrum. Epidemiological studies and service-based reports indicate that the prevalence of autistic spectrum disorders has increased in the last 10 years, in part due to better identification and broader categorization by educators, physicians, and other professionals. There is little doubt that more children are being identified as requiring specific educational inter- ventions for autistic spectrum disorders. This has implications for the provision of services at many levels. Analysis of data from the Office of

CONCLUSIONS AND RECOMMENDATIONS 213 Special Education Programs, gathered for school-age children since the autism category was recognized in 1991, would support investigation of whether the dramatic increases in the numbers of children served with autistic spectrum disorders are offset by commensurate decreases in other categories in which children with autistic spectrum disorders might have previously been misclassified or whether these dramatic increases have come about for other reasons. Although children with autistic spectrum disorders share some char- acteristics with children who have other developmental disorders and may benefit from many of the same educational techniques, they offer unique challenges to families, teachers, and others who work with them. Their deficits in nonverbal and verbal communication require intense effort and skill even in the teaching of basic information. The unique difficulties in social interaction (e.g., in joint attention) may require more individual guidance than for other children in order to attract and sustain their children’s attention. Moreover, ordinary social exchanges between peers do not usually occur without deliberate planning and ongoing struc- turing by the adults in the child’s environment. The absence of typical friendships and peer relationships affects children’s motivation systems and the meaning of experiences. Appropriate social interactions may be some of the most difficult and important lessons a child with autistic spectrum disorders will learn. In addition, the frequency of behavior problems, such as tantrums and self-stimulatory and aggressive behavior, is high. The need for sys- tematic selection of rewards for many children with autistic spectrum disorders, whose motivation or interests can be limited, requires creativ- ity and continued effort from teachers and parents to maximize the child’s potential. Although general principles of learning and behavior analysis apply to autistic spectrum disorders, familiarity with the specific nature of the disorder should contribute to analysis of the contexts (e.g., commu- nicative and social) of behaviors for individual children and result in more effective programming. For example, conducting a functional as- sessment that considers contexts, and then replacing problem behaviors with more appropriate ways to communicate can be an effective method for reducing problem behaviors. Recommendations 1-1 Because of their shared continuities and their unique social diffi- culties, children with any autistic spectrum disorder (autistic disorder, Asperger’s disorder, atypical autism, PDD-NOS, child- hood disintegrative disorder), regardless of level of severity or function, should be eligible for special educational services within the category of autistic spectrum disorders, as opposed to other

214 EDUCATING CHILDREN WITH AUTISM terminology used by school systems, such as other health im- paired, social emotionally maladjusted, significantly developmen- tally delayed, or neurologically impaired. 1-2 Identification of autistic spectrum disorders should include a for- mal multidisciplinary evaluation of social behavior, language and nonverbal communication, adaptive behavior, motor skills, atypi- cal behaviors, and cognitive status by a team of professionals experienced with autistic spectrum disorders. An essential part of this evaluation is the systematic gathering of information from parents on their observations and concerns. If the school system cannot carry out such an assessment, the local education author- ity should fund the assessment through external sources. Early diagnosis should be emphasized. Because of variability in early development, younger children with autistic spectrum disorders should receive a follow-up diagnostic and educational assess- ment within one to two years of initial evaluation. 1-3 Professional organizations, with the support of the National Insti- tutes of Health (NIH) and the Department of Education’s Office of Special Education Programs (OSEP), should disseminate infor- mation concerning the nature and range of autistic spectrum dis- orders in young children to all professionals who have contact with children, particularly those who work with infants, toddlers, and preschool children. This information should include the vari- able presentations and patterns of behavior seen in autistic spec- trum disorders from toddlers to school age children. Members of “child find” teams within the early intervention systems, as well as primary care providers, should be trained in identifying the “red flags of autistic spectrum disorders” and the importance and means of early referral for comprehensive diagnostic evaluation. Advocacy groups and relevant federal agencies, as well as profes- sional organizations, should use effective media resources, in- cluding the Internet, to provide information concerning the range of behaviors in autistic spectrum disorders. ROLE OF FAMILIES Conclusions 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, including advocacy, parents as participating partners in and agents of education or

CONCLUSIONS AND RECOMMENDATIONS 215 behavior change, and family-centered consideration of the needs and strengths of the family as a unit. Nearly all empirically supported treat- ments reviewed by the committee included a parent component, and most research programs used a parent-training approach. More informa- tion is needed about the benefits of a family-centered orientation or com- bined family-centered and formalized parent training in helping parents. It is well established that parents can learn and successfully apply skills to changing the behavior of their children with autistic spectrum disorders, though little is known about the effects of cultural differences, such as race, ethnicity, and social class, nor about the interactions among family factors, child characteristics, and features of educational interven- tion. For most families, having a child with an autistic spectrum disorder creates added stress. Parents’ use of effective teaching methods can have a significant effect on that stress, as can support from within the family and the community. Parents need access to balanced information about autistic spectrum disorders and the range of appropriate services and technologies in order to carry out their responsibilities. They also need timely information about assessments, educational plans, and the avail- able resources for their children. This information needs to be conveyed to them in a meaningful way that gives them time to prepare to fulfill their roles and responsibilities. In the last ten years the widespread availability of the Internet and media attention to autistic spectrum disorders have increased parents’ knowledge but often conveyed perspectives that were not balanced nor well-supported scientifically. Of crucial importance is the question of how to make information available to parents and to ensure their active role in advocacy for their children’s education. Recommendations 2-1 Parents’ concerns and perspectives should actively help to shape educational planning. Specifically: a. In order for a family to be effective members of the Indi- vidualized Education Plan (IEP) team that plans a child’s educa- tion, the local school system should provide to the parents, at the beginning of the assessment process, written information con- cerning the nature of autistic spectrum disorders and eligibility categories, the range of alternatives within best practices in early education of autistic spectrum disorders, sources of funding and support (e.g., a support guide and bibliography), and their child’s rights. b. Prior to the IEP meeting, the local school system should provide to each family the written results of their child’s assess-

216 EDUCATING CHILDREN WITH AUTISM ment, and a contact person to explain the findings if they wish, and should indicate that they will have the opportunity to present their concerns. Early during the IEP meeting, parents should be given an opportunity to voice their questions, concerns, and per- spectives about their child’s development and educational pro- gramming. 2-2 As part of local educational programs and intervention programs for children from birth to age 3, families of children with autistic spectrum disorders should be provided the opportunity to learn techniques for teaching their child new skills and reducing prob- lem behaviors. These opportunities should include not only di- dactic sessions, but also ongoing consultation in which individu- alized problem-solving, including in-home observations or training, occur for a family, as needed, to support improvements at home as well as at school. 2-3 Families that are experiencing stress in raising their children with an autistic spectrum disorder should be provided with mental health support services. Under Part C of the Individuals with Disabilities Education Act (IDEA), which addresses family sup- port and service coordination, including private service provid- ers, services should be extended to include families of children at least up to age 8 years. GOALS FOR EDUCATIONAL SERVICES Conclusions At the root of questions about the most appropriate educational inter- ventions lie differences in assumptions about what is possible and what is important to give students with autistic spectrum disorders through edu- cation. The appropriate goals for educational services are the same as those for other children: personal independence and social responsibility. These goals imply continuous progress in social and cognitive abilities, verbal and nonverbal communication skills, adaptive skills, amelioration of behavioral difficulties, and generalization of abilities across multiple environments. In some cases, reports have suggested that particular treat- ments can foster permanent “recovery”. However, as with other develop- mental disabilities, the core deficits of autistic spectrum disorders have generally been found to persist, to some degree, in most individuals. Research concerning outcomes can be characterized by whether the goal of intervention is broadly defined (e.g., “recovery” or “best out-

CONCLUSIONS AND RECOMMENDATIONS 217 come”) or more specifically defined (e.g., increasing vocabulary or peer- directed social behavior); whether the design involves reporting results in terms of group or individual changes; and whether the goals are short term (i.e., to be achieved in a few weeks or months) or longer term (i.e., over years). A large body of single-subject research has demonstrated substantial progress in individual responses to specific intervention tech- niques in relatively short periods of times (e.g., several months) in many specific areas, including gains in social skills, language acquisition, non- verbal communication, and reductions in challenging behaviors. Studies over longer periods of time have documented joint attention, symbolic play, early language skills, and imitation as core deficits and hallmarks of the disorder that are predictive of longer term outcome in the domains of language, adaptive behaviors, and academic skills. Many treatment studies report postintervention placement as an out- come measure. While successful participation in regular classrooms is an important goal for some children with autistic spectrum disorders, the usefulness of placement in regular education classes as an outcome mea- sure is limited, because placement may be related to many variables other than the characteristics of the child (e.g., prevailing trends in inclusion, availability of other services). The most commonly reported outcome measure in group treatment studies of children with autistic spectrum disorders has been changes in IQ scores, which also have many limita- tions. Studies have reported substantial changes in large numbers of chil- dren in intervention studies and longitudinal studies in which children received a variety of interventions. Even in the treatment studies that have shown the strongest gains, children’s outcomes are variable, with some children making substantial progress and others showing very slow gains. The needs and strengths of young children with autistic spectrum disorders are very heterogeneous. Although there is evidence that many interventions lead to improvements and that some children shift in spe- cific diagnosis along the autism spectrum during the preschool years, there does not appear to be a simple relationship between any particular intervention and “recovery” from autistic spectrum disorders. Thus, while substantial evidence exists that treatments can reach short-term specific goals in many areas, gaps remain in addressing larger questions of the relationships between particular techniques, child characteristics, and outcomes. Recommendations The IEP and Individual Family Service Plan (IFSP) should be the vehicles for planning and implementing educational objectives.

218 EDUCATING CHILDREN WITH AUTISM 3-1 Appropriate educational objectives for children with autistic spec- trum disorders should be observable, measurable behaviors and skills. These objectives should be able to be accomplished within 1 year and expected to affect a child’s participation in education, the community, and family life. They should include the devel- opment of: a. Social skills to enhance participation in family, school, and community activities (e.g., imitation, social initiations and re- sponse to adults and peers, parallel and interactive play with peers and siblings); b. Expressive verbal language, receptive language, and non- verbal communication skills; c. A functional symbolic communication system; d. Increased engagement and flexibility in developmentally appropriate tasks and play, including the ability to attend to the environment and respond to an appropriate motivational system; e. Fine and gross motor skills used for age appropriate func- tional activities, as needed; f. Cognitive skills, including symbolic play and basic con- cepts, as well as academic skills; g. Replacement of problem behaviors with more conven- tional and appropriate behaviors; and h. Independent organizational skills and other behaviors that underlie success in regular education classrooms (e.g., complet- ing a task independently, following instructions in a group, ask- ing for help). 3-2 Ongoing measurement of educational objectives must be docu- mented in order to determine whether a child is benefiting from a particular intervention. Every child’s response to the educational program should be assessed after a short period of time. Progress should be monitored frequently and objectives adjusted accord- ingly. CHARACTERISTICS OF EFFECTIVE INTERVENTIONS Conclusions In general, there is consistent agreement across comprehensive inter- vention programs about a number of features, though practical and, some- times, ethical considerations have made well-controlled studies with ran- dom assignment very difficult to conduct without direct evaluation. Characteristics of the most appropriate intervention for a given child must

CONCLUSIONS AND RECOMMENDATIONS 219 be tied to that child’s and family’s needs. However, without direct evalu- ation, it is difficult to know which features are of greatest importance in a program. Across primarily preschool programs, there is a very strong consensus that the following features are critical: • entry into intervention programs as soon as an autism spectrum diagnosis is seriously considered; • active engagement in intensive instructional programming for a minimum of the equivalent of a full school day, 5 days (at least 25 hours) a week, with full year programming varied according to the child’s choronological age and developmental level; • repeated, planned teaching opportunities generally organized around relatively brief periods of time for the youngest children (e.g., 15- 20 minute intervals), including sufficient amounts of adult attention in one-to-one and very small group instruction to meet individualized goals; • inclusion of a family component, including parent training; • low student/teacher ratios (no more than two young children with autistic spectrum disorders per adult in the classroom); and • mechanisms for ongoing program evaluation and assessments of individual children’s progress, with results translated into adjustments in programming. Curricula across different programs differ in a number of ways. They include the ways in which goals are prioritized, affecting the relative time spent on verbal and nonverbal communication, social activities, behav- ioral, academic, motor, and other domains. Strategies from various pro- grams represent a range of techniques, including discrete trials, incidental teaching, structured teaching, “floor time”, and individualized modifica- tions of the environment, including schedules. Some programs adopt a unilateral use of one set of procedures, and others use a combination of approaches. Programs also differ in the relative amount of time spent in homes, centers, or schools, when children are considered ready for inclu- sion into regular classrooms, how the role of peers as intervention agents is supported, and in the use of distraction-free or natural environments. Programs also differ in the credentials that are required of direct support and supervisory staff and the formal and informal roles of collateral staff, such as speech language pathologists and occupational therapists. Overall, many of the programs are more similar than different in terms of levels of organization, staffing, ongoing monitoring, and the use of certain techniques, such as discrete trials, incidental learning, and struc- tured teaching. However, there are real differences in philosophy and practice that provide a range of alternatives for parents and school sys- tems considering various approaches. The key to any child’s educational program lies in the objectives specified in the IEP and the ways they are

220 EDUCATING CHILDREN WITH AUTISM addressed. Much more important than the name of the program attended is how the environment and educational strategies allow implementation of the goals for a child and family. Thus, effective services will and should vary considerably across individual children, depending on a child’s age, cognitive and language levels, behavioral needs, and family priorities. Recommendations The committee’s recommendations for effective treatment are made on the basis of empirical findings, information from selected representa- tive programs, and findings in the general education and developmental literature. In particular, it is well established that children with autism spend much less time in focused and socially directed activity when in unstructured situations than do other children. Therefore, it becomes crucial to specify time engaged in social and focused activity as part of a program for children with autistic spectrum disorders. 4-1 Based on a set of individualized, specialized objectives and plans that are systematically implemented, educational services should begin as soon as a child is suspected of having an autistic spec- trum disorder. Taking into account the needs and strengths of an individual child and family, the child’s schedule and educational environment, in and out of the classroom, should be adapted as needed in order to implement the IEP. Educational services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, develop- mentally appropriate educational activity aimed toward identi- fied objectives. Where this activity takes place and the content of the activity should be determined on an individual basis, de- pending on characteristics of both the child and the family. 4-2 A child must receive sufficient individualized attention on a daily basis so that individual objectives can be effectively implemented; individualized attention should include individual therapies, de- velopmentally appropriate small group instruction, and direct one-to-one contact with teaching staff. 4-3 Assessment of a child’s progress in meeting objectives should be used on an ongoing basis to further refine the IEP. Lack of objec- tively documentable progress over a 3 month period should be taken to indicate a need to increase intensity by lowering stu-

CONCLUSIONS AND RECOMMENDATIONS 221 dent/teacher ratios, increasing programming time, reformulat- ing curricula, or providing additional training and consultation. 4-4 To the extent that it leads to the specified educational goals (e.g., peer interaction skills, independent participation in regular edu- cation), children should receive specialized instruction in settings in which ongoing interactions occur with typically developing children. 4-5 Six kinds of interventions should have priority: a. Functional, spontaneous communication should be the pri- mary focus of early education. For very young children, pro- gramming should be based on the assumption that most children can learn to speak. Effective teaching techniques for both verbal language and alternative modes of functional communication, drawn from the empirical and theoretical literature, should be vigorously applied across settings. b. Social instruction should be delivered throughout the day in various settings, using specific activities and interventions planned to meet age-appropriate, individualized social goals (e.g., with very young children, response to maternal imitation; with preschool children, cooperative activities with peers). c. The teaching of play skills should focus on play with peers, with additional instruction in appropriate use of toys and other materials. d. Other instruction aimed at goals for cognitive develop- ment should also be carried out in the context in which the skills are expected to be used, with generalization and maintenance in natural contexts as important as the acquisition of new skills. Because new skills have to be learned before they can be general- ized, the documentation of rates of acquisition is an important first step. Methods of introduction of new skills may differ from teaching strategies to support generalization and maintenance. e. Intervention strategies that address problem behaviors should incorporate information about the contexts in which the behaviors occur; positive, proactive approaches; and the range of techniques that have empirical support (e.g., functional assess- ment, functional communication training, reinforcement of alter- native behaviors). f. Functional academic skills should be taught when appro- priate to the skills and needs of a child.

222 EDUCATING CHILDREN WITH AUTISM PUBLIC POLICIES Conclusions The Individuals with Disabilities Education Act (IDEA) contains the necessary provisions for ensuring rights to appropriate education for chil- dren with autistic spectrum disorders. However, the implementation and specification of these services are variable. Early intervention for young children with autistic spectrum disorders is expensive, and most local schools need financial help from the state and federal programs to pro- vide appropriate services. The large number of court cases is a symptom of the tension between families and school systems. Case law has yielded an inconsistent pattern of findings that vary according to the characteristics of the individual cases. The number of challenges to decision-making for programming within school systems reflects parents’ concerns about the adequacy of knowledge and the expertise of school systems in determining their children’s education and implementing appropriate techniques. The treatment of autistic spectrum disorders often involves many disciplines and agencies. This confuses lines of financial and intellectual responsibility and complicates assessment and educational planning. When communication between families and school systems goes awry, it can directly affect children’s programming and the energy and financial resources that are put into education rather than litigation. Support sys- tems are not generally adequate in undergirding local service delivery programs and maximizing the usefulness of different disciplines and agencies, and transitions between service delivery agencies are often prob- lematic. A number of states have successful models for providing services to children with autism, and mechanisms are becoming increasingly effi- cient and flexible in some states. In most cases, existing agencies at state and federal levels can develop appropriate programs without restructur- ing—with the possible addition of special task forces or committees de- signed to deal with issues particular to children with autistic spectrum disorders. Recommendations The committee recommends that a variety of steps be taken to ensure that policies are effectively carried out at the state and local levels. 5-1 At the federal level, the National Institutes of Health’s Autism Coordinating Committee and the Federal Interagency Coordinat- ing Council should jointly appoint a clinical research oversight

CONCLUSIONS AND RECOMMENDATIONS 223 task force of professionals knowledgeable in the field of autistic spectrum disorders, to review and periodically report on basic and applied research programs to the parent agencies and to track program implementation through the State Interagency Coordi- nating Councils or relevant state agencies. Administrative sup- port for these efforts should be provided by the appropriate de- partment of the Secretary’s office. 5-2 States should have regional resource and training centers with expertise in autistic spectrum disorders to provide training and technical support to local schools. States should also have a mechanism to evaluate the adequacy of current support systems to local schools and recommend ways for improvement. One such mechanism could be an autistic spectrum disorders support systems task force that would examine the relevant provisions for personnel preparation, technical assistance, and demonstration of exemplary programs and would make recommendations as to what would be needed to bring a state’s support systems into alignment with quality education for children with autistic spec- trum disorders. States should monitor coordination among and transitions between service delivery systems and should develop ways to facilitate these processes. 5-3 Families should have access to consultation and legal knowledge such as provided by an ombudsman who is independent of the school system and who could be a standard part of Individual- ized Educational Plan planning and meetings. The ombudsman should be knowledgeable about autistic spectrum disorders and about relevant law and court decisions. The ombudsman’s role should include attending IEP meetings, interpreting the school system’s communications about a child to parents, and propos- ing, at the parents’ request, alternatives to those presented by the school system. Professional and advocacy groups should work together to provide this service, with the Governor’s Council for Developmental Disabilities or the Autistic Spectrum Disorders Support Systems Task Force responsible for ensuring funding for training and support of this service. 5-4 State and federal agencies should consider ways to work with and support professional and advocacy groups to provide up-to- date, practical, scientifically valid information to parents and practitioners.

224 EDUCATING CHILDREN WITH AUTISM 5-5 States should have clearly defined minimum standards for per- sonnel in educational settings for children with autistic spectrum disorders. For example, at a minimum, teachers should have some special preparation (e.g., preservice course work, equiva- lent inservice training, workshops, and supervised practice in re- search-based practices in autistic spectrum disorders) and should have well-trained, experienced support personnel available to provide ongoing training and additional consultation. 5-6 States should develop a systematic strategy to fund the interven- tions that are necessary for children with autistic spectrum disor- ders in local schools, so that this cost is not borne primarily by the parents or local school systems. State education departments should develop interagency collaborations to pool support for local systems. A state fund for intensive intervention, or more systematic use of Medicaid waivers or other patterns of funding currently in place in some states, should be considered. Families should not be expected to fund or provide the majority of educa- tional programming for their children. 5-7 An updated, accurate summary of case law, consultation services, and mediation mechanisms in autistic spectrum disorders should be made accessible by the Office of Special Education Programs so that schools and parents can understand the options available to them when conflicts arise. 5-8 Since levels of information about autistic spectrum disorders vary greatly within the groups and agencies that make funding and policy decisions about autistic spectrum disorders, including state task forces in education and review panels in federal agencies, it is crucial that persons knowledgeable in the range of needs and interventions associated with autistic spectrum disorders be in- cluded in those decision-making activities. PERSONNEL PREPARATION Conclusions The nature of autistic spectrum disorders and other disabilities that frequently accompany them has significant implications for approaches to education and intervention at school, in the home, and in the commu- nity. Approaches that emphasize the use of specific “packages” of mate- rials and methods associated with comprehensive intervention programs

CONCLUSIONS AND RECOMMENDATIONS 225 may understate the multiple immediate and long-term needs of children for behavior support and for instruction across areas. Teachers are faced with a huge task. They must be familiar with theory and research concerning best practices for children with autistic spectrum disorders, including methods of applied behavior analysis, naturalistic learning, assistive technology, socialization, communication, inclusion, adaptation of the environment, language interventions, assess- ment, and the effective use of data collection systems. Specific problems in generalization and maintenance of behaviors also affect the need for training in methods of teaching children with autistic spectrum disorders. The wide range of IQ scores and verbal skills associated with autistic spectrum disorders, from profound mental retardation and severe lan- guage impairments to superior intelligence, intensify the need for person- nel training. To enable teachers to adequately work with parents and with other professionals to set appropriate goals, teachers need familiar- ity with the course of autistic spectrum disorders and the range of pos- sible outcomes. Teachers learn according to the same principles as their students. Multiple exposures, opportunities to practice, and active involvement in learning are all important aspects of learning for teachers, as well as stu- dents. Many states and community organizations have invested substan- tial funds in teacher preparation through workshops and large-audience lectures by well-known speakers. While such presentations can stimulate enthusiasm, they do not substitute for ongoing consultation and hands- on opportunities to observe and practice skills working with children with autistic spectrum disorders. Personnel preparation remains one of the weakest elements of effec- tive programming for children with autistic spectrum disorders and their families. Ways of building on the knowledge of teachers as they acquire experience with children with autistic spectrum disorders, and ways of keeping skilled personnel within the field, are critical. This is particularly true given recent trends for dependence on relatively inexperienced assis- tants for in-home programs. Providing knowledge about autistic spec- trum disorders to special education and regular education administra- tors, as well as to specialized providers with major roles in early intervention (e.g., speech language pathologists) will be critical in effect- ing change that is proactive. Findings concerning change in educational and other opportunities suggest that administrative attitudes and sup- port are critical in improving schools. Recommendations The committee recommends that relevant state and federal agencies institute an agenda for upgrading personnel preparation for those who

226 EDUCATING CHILDREN WITH AUTISM work with, and are responsible for, children with autistic spectrum disor- ders and their families. These efforts should be part of a larger effort to coordinate and collaborate with the already established infrastructure of special education, regional resource centers, technical assistance pro- grams, personnel preparation, communication sharing, and other relevant aspects of the existing infrastructure. Professionals aware of the special nature of these children are already carrying out many of these recom- mendations in a limited fashion. The committee urges agencies to pro- vide the personnel preparation resources needed for intensified efforts to build a viable support structure for educating children with autistic spec- trum disorders. 6-1 The Office of Special Education Programs should establish a 5- year plan to provide priority funds for preservice and inservice preparation for teachers, paraprofessionals, and other personnel providing services for children with autistic spectrum disorders, including children under age 3 years. 6-2 The need for a team approach involving many professions should be addressed by personnel preparation and practicum work within multidisciplined organizations and teams. 6-3 A special emphasis should be placed on training of trainers. There is a short supply of expertise and experience in the field of educa- tion for children with autistic spectrum disorders, and special attention should be paid to rapidly increase the capabilities of the trainers, who may have experience in special education or related fields, but not in the special skills and practices for children with autistic spectrum disorders. 6-4 The existing support systems that provide short-term training (e.g., technical assistance systems, resource centers, etc.) should include people with special expertise in autistic spectrum disor- ders on their staff. 6-5 The content of the curriculum for children with autistic spectrum disorders should be based on sound research. A continuing pro- gram should be established from such agencies as the National Institute of Mental Health and the National Institute of Child Health and Human Development to translate their research into usable information for practitioners. Work on family research is particularly relevant.

CONCLUSIONS AND RECOMMENDATIONS 227 NEEDED RESEARCH Conclusions There are several distinct and substantial bodies of research relevant to young children with autistic spectrum disorders. One body identifies neurological, behavioral, and developmental characteristics. Another body of research addresses diagnostic practices and related issues of prevalence. Another has examined the effects of comprehensive early treatment programs on the immediate and long-term outcomes of chil- dren and their families. These treatment studies tended to use some form of group experimental design. An additional body of research has ad- dressed individual instructional or intervention approaches, with many studies in this literature using single-subject experimental methodology. Altogether, a large research base exists, but with relatively little integra- tion across bodies of literature. Highly knowledgeable researchers in one area of autistic spectrum disorders may have minimal information from other perspectives, even about studies with direct bearing on their find- ings. Most researchers have not used randomized group comparison de- signs because of the practical and ethical difficulties in randomly assign- ing children and families to treatment groups. In addition, there have been significant controversies over the type of control or contrast group to use and the conditions necessary for demonstrating effectiveness. Al- though a number of comprehensive programs have provided data on their effectiveness, and, in some cases, claims have been made that certain treatments are superior to others, there have been virtually no compari- sons of different comprehensive interventions of equal intensity. Across several of the bodies of literature, the children and families who have participated in studies are often inadequately described. Stan- dardized diagnoses, descriptions of ethnicity, the social class, and associ- ated features of the children (such as mental retardation and language level) are often not specified. Fidelity of treatment implementation has not been consistently assessed. Generalization, particularly across set- tings, and maintenance of treatment effects are not always measured. Though there is little evidence concerning the effectiveness of discipline- specific therapies, there is substantial research supporting the effective- ness of many specific therapeutic techniques. Recommendations 7-1 Funding agencies and professional journals should require minimium standards in design and description of intervention projects. All intervention studies should provide the following information:

228 EDUCATING CHILDREN WITH AUTISM a. Adequate information concerning the children and fami- lies who participated, and who chose not to participate or with- drew from participation, including chronological age, develop- mental assessment data (including verbal and nonverbal IQ levels), standardized diagnoses, gender, race, family characteris- tics, socioeconomic status, and relevant health or other biological impairments; b. description of the intervention in sufficient detail so that an external group could replicate it; detailed documentation is crucial especially if no treatment manual is available; c. fidelity of treatment and degree of implementation; d. specific objective measures of expected outcomes, assessed at regular intervals; and e. measures of outcome that are independent of the interven- tion, in terms of both the evaluators and the measures, and in- clude broad immediate and long-term effects on children and families, particularly generalization and maintenance effects. 7-2 Funders and performers of research should recognize that valu- able information can be provided by a variety of approaches to research in intervention, including group experimental and single-subject designs. 7-3 In order to help educators and consumers make informed deci- sions about appropriate methods of intervention for particular children, federal agencies involved in autistic spectrum disorders initiatives (including the Office of Special Education Programs, the Office of Educational Research and Improvement, the Na- tional Institute of Child Health and Human Development, the National Institute of Mental Health, the National Institute of Neu- rological Disorders and Stroke, and the National Institute on Deaf- ness and Other Communication Disorders) and nonprofit agen- cies with similar national missions (such as Autism Society of America Foundation, Cure Autism Now, and National Alliance for Autism Research) should form a research task force and spe- cifically allocate federal responsibilites for recruiting and funding a comprehensive program of research related to intervention and treatment. This program should include: a. development of more specific, precise measures of impor- tant areas of outcome, such as social functioning, peer relation- ships, spontaneous communication and language, and the acqui- sition of competence in natural contexts (e.g., classroom, home);

CONCLUSIONS AND RECOMMENDATIONS 229 b. definition of appropriate educational skills and sequences in social and cognitive development, informed by normal devel- opmental literature; c. measurement of the effects of the interactions between fam- ily variables (e.g., family structure, family supports, socioeco- nomic status), child factors (such as degree of language impair- ment), and responses to educational interventions (including family-centered, parent training, and other approaches) on out- comes. d. longitudinal treatment studies, where feasible, built on a clinical model with randomly assigned samples of sufficient size to assess the effectiveness of differing modes of treatment. 7-4 Treatment studies should recognize the common components of many comprehensive programs (e.g., standardized curriculum, family training, presence of typically developing peers) and should target and measure, longitudinally when feasible, “active ingredients” and mediating variables that influence the effects of intervention (e.g., communication and interaction opportunities for engagement, levels of interaction and initiation, specific teach- ing techniques, proportion of time in close proximity of peers). The concomitant development of innovative treatments building on these “active ingredients” should be supported. 7-5 In response to amendments in IDEA to make education more outcome oriented, a federal initiative should solicit and fund stud- ies in the following areas, not easily supported under the current review system: a. the development of instruments for measurement of diag- nosis and critical aspects of development, particularly tools for early screening of autistic spectrum disorders and for measure- ment of response to interventions; b. the development and application of sophisticated statisti- cal methods of analysis of change and growth, particularly multi- variate designs and those applicable to small samples; and c. the development and dissemination of novel research de- signs that combine individual and group approaches in ways that minimize biases and maximize the power of small samples. 7-6 Competitively funded initiatives in early education in autistic spectrum disorders should require plans and contain sufficient funding for short- and long-term assessment of child outcomes and measures of program efficacy.

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Autism is a word most of us are familiar with. But do we really know what it means?

Children with autism are challenged by the most essential human behaviors. They have difficulty interacting with other people—often failing to see people as people rather than simply objects in their environment. They cannot easily communicate ideas and feelings, have great trouble imagining what others think or feel, and in some cases spend their lives speechless. They frequently find it hard to make friends or even bond with family members. Their behavior can seem bizarre.

Education is the primary form of treatment for this mysterious condition. This means that we place important responsibilities on schools, teachers and children's parents, as well as the other professionals who work with children with autism. With the passage of the Individuals with Disabilities Education Act of 1975, we accepted responsibility for educating children who face special challenges like autism. While we have since amassed a substantial body of research, researchers have not adequately communicated with one another, and their findings have not been integrated into a proven curriculum.

Educating Children with Autism outlines an interdisciplinary approach to education for children with autism. The committee explores what makes education effective for the child with autism and identifies specific characteristics of programs that work. Recommendations are offered for choosing educational content and strategies, introducing interaction with other children, and other key areas.

This book examines some fundamental issues, including:

  • How children's specific diagnoses should affect educational assessment and planning
  • How we can support the families of children with autism
  • Features of effective instructional and comprehensive programs and strategies
  • How we can better prepare teachers, school staffs, professionals, and parents to educate children with autism
  • What policies at the federal, state, and local levels will best ensure appropriate education, examining strategies and resources needed to address the rights of children with autism to appropriate education.

Children with autism present educators with one of their most difficult challenges. Through a comprehensive examination of the scientific knowledge underlying educational practices, programs, and strategies, Educating Children with Autism presents valuable information for parents, administrators, advocates, researchers, and policy makers.

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