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Educating Children with Autism 12 Comprehensive Programs An overview of well-known model approaches to early autism intervention reveals a consensus across programs on the factors that result in program effectiveness. Similarities far outweigh differences in ten state-of-the-art programs that were selected for comparison. On the other hand, program differences suggest that there are viable alternatives on many program dimensions. Both differences and similarities among the programs are fundamental. Despite limitations of the outcome research available, it is likely that many children benefit substantially in the different programs reviewed. The national challenge is to close the gap between the quality of model programs and the reality of most publicly funded early educational programs. This chapter begins with a description of the process by which the ten models were selected for review and a brief description of each program. The theoretical backgrounds of the various approaches are then considered, followed by an examination of points of convergence and divergence across the program models and consideration of the empirical underpinnings of each approach. SELECTION AND OVERVIEW OF MODEL PROGRAMS Representative model programs were selected for the purpose of illustrating key features related to program effectiveness; however, this is not an exhaustive review, and not all existing programs are described here.
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Educating Children with Autism Criteria for Selection of Programs In order to select representative programs objectively, the committee established a set of criteria that relied on the availability of recently published program descriptions (Harris and Handleman, 1994; Handleman and Harris, 2000) and existing reviews of model programs for children with autistic spectrum disorders (Dawson and Osterling, 1997; Rogers, 1998). The committee also reviewed research and program descriptions in recent special issues on autistic spectrum disorders of professional journals, including Infants and Young Children (Neisworth and Bagnato, 1999), School Psychology Review (Harrison, 1999), and The Journal of the Association for Persons with Severe Handicaps (Brown and Bambara, 1999). Programs that had received federal funding for peer-reviewed grants by the National Institutes of Health and by the U.S. Department of Education were also included. Model programs that provided invited representation in the Autistic Spectrum Disorders Forum Workgroup of the National Early Childhood Technical Assistance Systems were also included. A simple frequency count was conducted of the number of times each program was described in these sources. The programs selected were cited and described as program models between three and nine times in the designated resources. Excluded from the count were publications of isolated procedures rather than overall program descriptions. For example, references to an incidental teaching or discrete-trial procedure were not counted as a reference to a specific program model. However, references to a model by either title or investigator(s) were counted. These criteria yielded a total of 12 programs, all in the United States. The committee sent an invitation to the director or developer of each, asking for program description materials and peer-reviewed data that they deemed best represented their model. Two of the programs did not respond, leaving ten programs for the committee’s review. Brief Overview of Programs Most of the ten representative models selected began as research programs in which empirically demonstrated strategies for addressing specific problems were gradually packaged as components of overall clinical models. However, there have been different approaches to the development of these models. All ten of the models individualize programming around the needs of particular children, and intervention regimens are designed to be implemented in a flexible manner. Essential differences in program design pertain to whether the curriculum is aimed at addressing some or all of a child’s needs and whether the program staff provide direct service or serve as consultants to external providers. The following description of
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Educating Children with Autism the ten programs (presented in alphabetical order), and the review that follows it, summarize the similarities and differences across programs. Children’s Unit at the State University of New York at Binghamton This program was designed in 1975 as an intensive, short-term program (approximately 3 years) for children with severe behavioral disorders. Consistent with the original purpose, the program operates from a deficit-oriented perspective that seeks to identify the factors most crucial in preventing a child from benefiting fully from services in the local community. The program primarily uses traditional applied behavior analysis techniques, although more naturalistic procedures may be implemented as children progress. An elaborate individualized goal selection curriculum has been developed, and there is an extensive computerized assessment and monitoring system (Romanczyk et al., 2000). Denver Model at the University of Colorado Health Sciences Center This program originally opened in 1981 as the Playschool Model, which was a demonstration day treatment program. This developmentally oriented instructional approach is based on the premise that play is a primary vehicle for learning social, emotional, communicative, and cognitive skills during early childhood. The role of the adult and the purpose of play activities vary across learning objectives. The overarching curriculum goals are to increase cognitive levels, particularly in the area of symbolic functions; increase communication through gestures, signs, and words; and enhance social and emotional growth through interpersonal relationships with adults and peers. In 1998, the treatment unit was closed, and the intervention format was changed to the more natural contexts available in home and preschool environments with typical peers (Rogers et al., 2000). Developmental Intervention Model at The George Washington Univer sity School of Medicine As in the Denver Model, this relationship-based approach is derived from a developmental orientation. There is a home component of intensive interactive floor-time work, in which an adult follows a child’s lead in play and interaction, and children concurrently participate in individual therapies and early education programs. Intense floor time sessions at home are aimed at “pulling the child into a greater degree of pleasure.” The curriculum is aimed at six developmental capacities: shared attention and regulation; engagement; affective reciprocity and communications through gestures; complex, pre-symbolic, shared social communication and problem-solving; symbolic and creative use of ideas; and logical and abstract use of ideas and thinking (Greenspan and Wieder, 1999).
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Educating Children with Autism Douglass Developmental Center at Rutgers University The center opened in 1972 to serve older children with autism; the preschool programs were added in 1987. Douglass now has a continuum of three programs that serve young children with autistic spectrum disorders, including an intensive home-based intervention, a small-group segregated preschool, and an integrated preschool. The curriculum is developmentally sequenced and uses applied behavior analysis techniques, beginning with discrete-trial formats and shifting across the continuum to more naturalistic procedures. Initial instruction is focused on teaching compliance, cognitive and communication skills, rudimentary social skills, and toilet training, as well as on the elimination of serious behavior problems. The small-group classroom emphasizes communication, cognitive skills, and self-help skills; social intervention begins in the form of interactive play with teachers. The emphasis in the integrated classroom is on communication, socialization, and pre-academic skills (Harris et al., 2000). Individualized Support Program at the University of South Florida at Tampa A parent-training program developed in West Virginia served as the predecessor of this model, which started in its current form in 1987. The Individualized Support Program is implemented in children’s homes and community settings during a relatively short period of intensive assistance and ongoing follow-up. The program is intended to be adjunctive to ongoing, daily, special educational services delivered in preschool and by other clinical providers. Specifically, it is oriented toward helping families gain the knowledge and skills needed to solve problems, as well as the competence and confidence needed to continue effective intervention and advocacy over the course of their children’s educational history. Essential elements of the model include: development of functional communication skills, facilitation of the child’s participation in socially inclusive environments, and multifaceted family support (Dunlap and Fox, 1999a, 1999b). Learning Experiences, an Alternative Program for Preschoolers and their Parents (LEAP) Preschool at the University of Colorado School of Education LEAP opened in 1982 as a federally funded demonstration program and soon after incorporated into the Early Childhood Intervention Program at Western Psychiatric Institute and Clinic, University of Pittsburgh. In recent years, the original classrooms continue to operate in Pittsburgh, but new LEAP classrooms are now being developed in the Denver Public School System. LEAP includes both a preschool program and a behavioral skill training program for parents, as well as national outreach activities. LEAP was one of the first programs in the country to include children with autism with typical children, and the curriculum is well-known for its peer-mediated social skill interventions. An individu-
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Educating Children with Autism alized curriculum targets goals in social, emotional, language, adaptive behavior, cognitive, and physical developmental areas. The curriculum blends a behavioral approach with developmentally appropriate practices (Strain and Cordisco, 1994; Strain and Hoyson, 2000). Pivotal Response Model at the University of California at Santa Barbara Beginning in 1979, components of the current model were evaluated in applications with children of varied ages. In recent years, the primary focus has been on early intervention. Using a parent education approach, the ultimate goal of the Pivotal Response Model is to provide individuals with autism with the social and educational proficiency to participate in inclusive settings. In early stages, this model used a discrete-trial applied behavior analysis approach, but there has been a shift toward use of more naturalistic behavioral interventions. The overriding strategy is to aim at change in certain pivotal areas (e.g., responsiveness to multiple cues, motivation, self-management, and self-initiations). Intervention consists of in-clinic and one-on-one home teaching, and children concurrently participate in special education services in the schools. Specific curriculum goals are targeted in areas of communication, self-help, academic, social, and recreational skills (Koegel et al., 1998). Treatment and Education of Autistic and Related Communication Handi capped Children (TEACCH) at the University of North Carolina School of Medicine at Chapel Hill This program was founded in 1972 as a statewide autism program that serves people with autistic spectrum disorders of all ages. Regional centers provide regular consultation and training to parents, schools, preschools, daycare centers, and other placements throughout the state. There is one demonstration classroom. TEACCH is based on a structured teaching approach, in which environments are organized with clear, concrete, visual information. Parents are cotherapists and taught strategies for working with their children. Programming is based on individualized assessments of a child’s strengths, learning style, interests, and needs, so that the materials selected, the activities developed, the work system for the child, and the schedule for learning are tailored to this assessment information and to the needs of the family. TEACCH has developed a communication curriculum that makes use of behavioral procedures, with adjustments that incorporate more naturalistic procedures along with alternative communication strategies for nonverbal children (Watson et al., 1989; Marcus et al., 2000). The University of California at Los Angeles (UCLA) Young Autism Project The development of this program was based on earlier research with older children and adolescents with autism; its applications to young children with autism began during the 1970s. The behavioral interven-
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Educating Children with Autism tion curriculum is delivered in a one-to-one discrete-trial format, which is implemented by parents and trained therapists who work in a child’s home. The treatment is focused primarily on developing language and early cognitive skills and decreasing excessive rituals, tantrums, and aggressive behaviors. The first year of intervention is aimed at teaching children to respond to basic requests, to imitate, to begin to play with toys, and to interact with their families. During the second year, the focus on teaching language continues; the most recent curriculum descriptions note a shift toward teaching emotion discriminations, pre-academic skills, and observational learning. For children who eventually enter inclusive settings, a paraprofessional assists with participation in regular preschool or kindergarten settings (Smith et al., 2000a). Walden Early Childhood Programs at the Emory University School of Medicine The Walden program was developed in 1985 at the University of Massachusetts at Amherst, where the primary function was as a laboratory preschool to accommodate research in incidental teaching. Following relocation to Emory University in Atlanta, toddler and prekindergarten programs were added to complete an early intervention continuum. The classrooms include children with autism with a majority of typical peers. The incidental teaching approach is based on behavioral research, although there are developmental influences on goal selection. There is a toddler program with both center- and home-based components, and initial goals include establishment of sustained engagement, functional verbal language, responsiveness to adults, tolerance and participation with typical peers, and independence in daily living (e.g., toilet training). The preschool is aimed at language expansions and beginning peer interaction training. The prekindergarten emphasizes elaborated peer interactions, academic skills, and conventional school behaviors (McGee et al., 2000). Organizational Structures Irrespective of curriculum content, there are certain organizational similarities in the ten selected programs. For example, all are university-based programs. Four are housed within psychiatry departments (Denver, Developmental Intervention Model, TEACCH, Walden; also formerly LEAP), and four are affiliated with psychology departments (Children’s Unit, Douglass, Pivotal Response Model, Young Autism Project; also formerly Walden). The Individualized Support Program is sponsored by a Department of Child and Family Studies, and LEAP is currently in a Department of Special Education. Virtually all of these programs are or formerly were a component of a larger autism center. The Denver Model is operated within one of the
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Educating Children with Autism National Institutes of Health Autism Research Centers. Three of the programs are components of statewide autism centers (i.e., the Individualized Support Program in Florida, TEACCH in North Carolina, and Walden in Georgia), and two other preschools (Douglas Disabilities Developmental Center and the Children’s Unit) are the early childhood components of programs that serve people with autism through adulthood. Three programs operate out of university-based clinics, although a significant portion of the interventions take place in homes and community settings (i.e., Developmental Intervention Model, Pivotal Response Training, and the Young Autism Project). The LEAP, TEACCH, and Denver programs are carried out primarily in public schools; all programs provide consultation or technical assistance to schools serving participating children, either concurrently or following early intervention. Many of the selected programs were developed while funded with extramural research support. At least seven of the programs’ directors have or have had funding from the U.S. Department of Education (Dunlap and Fox, the Koegels, Lovaas, McGee, Rogers, Schopler, and Strain). Five of these program directors have had research funding from the National Institutes of Health (Koegel, Lovaas, Rogers, Schopler, and Strain). In addition, virtually all have had state funding, either directly (e.g., Children’s Unit, Douglass, TEACCH) or through child or school district tuitions. Trends in the Development of the Programs This review focuses on the most recently published practices of each model; it should be acknowledged that each of these programs has undergone considerable evolution over the years. Over the past two decades, the development of preschool programs for children with autistic spectrum disorders has influenced and been influenced by major shifts in intervention approaches (Dunlap and Robbins, 1991). Early behavioral interventions often targeted behavior reduction as a major goal, and some used aversive procedures. However, very few programs for young children currently report planned use of aversive stimuli as punishments. Another trend includes broadened conceptualizations of family involvement, which has expanded from simple participation in parent training to preparation for parental roles as collaborators, advocates, and recipients of family support. There has also been a shift toward instruction in more natural environments, and there has been a growing emphasis on inclusion of children with autism with typically developing peers. For example, virtually all model programs list inclusion among typical peers as a major emphasis of their program, either as a goal or as a strategy for promoting social learning (Handleman and Harris, 2000; Harris and Handleman, 1994). In the past few years, there has been an increased
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Educating Children with Autism focus on identification and treatment of toddlers with autistic spectrum disorders, in contrast to previous models of early intervention that began when children were in preschool or elementary school. THEORETICAL ORIENTATIONS OF PROGRAM MODELS The ten program models described derive from either developmental or behavioral orientations, which influence goals, intervention procedures, and methods of evaluation. Thus, the Denver Model and the Developmental Intervention Model were conceptualized from a deductive framework, in which developmental theory was used to organize hypotheses regarding the fundamental nature of autistic spectrum disorders. Group design research has been aimed at seeking confirmatory evidence regarding deviations from normal development that need to be addressed in intervention. With the exception of TEACCH, which is eclectic with elements of both developmental and behavioral orientations, the other seven programs derive from the field of applied behavioral analysis. Behavioral interventions have been developed from a “bottom-up” approach in which procedures based on principles of learning are subjected to (largely single-subject) empirical tests, and techniques of demonstrated efficacy have then been assembled into program models (Anderson and Romanczyk, 1999). Although these differing conceptual frameworks influence the intervention models in substantial ways, in practice, there is also considerable overlap between and across the various models. Within the behavioral approaches, a wide range of applications are used within and across programs, ranging from traditional discrete-trial training procedures to newer naturalistic approaches. Developmental Approaches The Denver Model recognizes the interplay among cognitive, communicative, and social and emotional development (Rogers and DiLalla, 1991). It was originally based on Piaget’s (1966) experientially based theory of cognitive development, with additional influence from Mahler’s conceptualization of interpersonal development via the attachment-separation-individuation process (Mahler et al., 1975). The underlying assumption was that, if intervention is directed at establishing strong, affectionate interpersonal relationships, then it may be possible to accomplish broad developmentally crucial improvements. From this perspective, it has been argued that the traditional behavioral approach of teaching specific behaviors is too narrow to have an impact on the fundamental nature of autistic spectrum disorders (Rogers et al., 1986). Although the Pivotal Response Model evolved from behavioral research, it arrived at a similar
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Educating Children with Autism conclusion, that it is more efficacious to aim intervention at key autistic spectrum disorders deficits that will yield broad changes in collateral behaviors than to address individual behaviors in an isolated fashion (Koegel et al., 1999a). The approach of the Developmental Intervention Model is based upon the assumption that a child’s symptoms reflect unique biologically based processing difficulties that may involve affect, sensory modulation and processing, motor planing, and symbol formation (Greenspan and Wieder, 1997). Relationships and affective interactions may go awry secondarily, and intervention is aimed at helping a child try to work around the processing difficulties to reestablish affective contact. Behavioral Approaches By far, the bulk of autistic spectrum disorders intervention research has been conducted from the perspective of applied behavior analysis. An exhaustive review of 19,000 published journal articles revealed that there were 500 papers on applied behavior analysis and autistic spectrum disorders, and 90 of these were studies using single-subject designs to evaluate specific interventions for young children with autistic spectrum disorders (Palmieri et al., 1998). Rather than being tied to specific procedures, applied behavior analysis includes any method that changes behavior in systematic and measurable ways (Sulzer-Azaroff and Mayer, 1991). Historically, the behavioral approaches emphasized acquisition of discrete skills, and interventions were evaluated in terms of whether they produced observable and socially significant changes in children’s behavior (Baer et al., 1968). Traditional behavioral interventions impose structure in the form of distraction-free environments and presentation of opportunities-to-respond in discrete trials, and appropriate behavior is rewarded when it occurs. Technically sophisticated discrimination training procedures have been derived from years of research in applied behavior analysis. Lovaas’ Young Autism Project, Harris and Handleman’s Douglass Center, and Romanczyk’s Children’s Unit represent classic behavioral interventions, although all now use more naturalistic interventions as children’s basic skills improve. In an effort to improve the generalization of skills from teaching settings to daily use in the real world, comprehensive behavioral interventions have modified traditional applied behavior analysis techniques in a way that permits instruction in natural environments. The LEAP model was the first to recognize the importance of direct instruction in peer-related social behaviors, and that more natural instructional settings were required to accommodate the presence of typically developing classmates (Strain and Hoyson, 2000; Strain et al., 1985). Walden’s incidental teach-
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Educating Children with Autism ing approach incorporated the technical procedures generated by behavior analysis research into the environmental contexts in which social and communication behaviors typically occur for children without disabilities (McGee et al., 1997, 1999). Both the Individualized Support Program (Dunlap and Fox, 1999b) and the pivotal response model have emphasized the use of naturalistic procedures as a method to reduce stress on families. Conceptual Differences and Practical Similarities The conceptual differences between developmental and behavioral approaches to intervention are real, yet the gaps in practice appear to be narrowing. Developmental researchers may criticize behavioral approaches for failure to target the specific deficits associated with autistic spectrum disorders (Rogers et al., 1986), and it has been argued that this failure to select target skills within a meaningful developmental framework results in isolated skills that are difficult to transfer to other situations and skills (Rogers and Lewis, 1988). Behaviorists counter that the irregularity of skill development in children with autistic spectrum disorders decreases the relevance of careful adherence to normal developmental sequencing (Anderson and Romanczyk, 1999). However, developmental approaches to autistic spectrum disorders treatment have incorporated methods that recognize the needs of children with autistic spectrum disorders for high levels of structure, adult attention, and consistency. At the same time, behavioral interventions are increasingly being used to address complex social and communication goals in normal environmental settings. CONVERGENCE AND VARIABILITY OF PROGRAM DIMENSIONS Common elements among the early intervention models presented here include specific curriculum content, highly supportive teaching environments and generalization strategies, predictable routines, use of a functional approach to problem behaviors, carefully planned transitions across intervention settings, and active family involvement (Dawson and Osterling, 1997). Additional similarities include highly trained staff, adequate resources, and supervisory and review mechanisms (Anderson and Romanczyk, 1999). All ten model programs/approaches recognize the importance of individualizing interventions in a manner that meets the needs of each child and family. The similarities and range of variability of features across the models are summarized in Table 12–1 and discussed below.
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Educating Children with Autism TABLE 12–1 Features of Comprehensive Programs Program Mean Age at Entry (range), in Months Hours Per Week Usual Settinga Primary Teaching Procedure Children’s Unit 40 (13 to 57) 27.5 School (S) Discrete trial Denver Community Based Approach 46 (24 to 60) 20 School (I), home, community Playschool curriculum Developmental Intervention Model 36 (22 to 48) 10–25 Home, clinic Floor time therapy Douglass 47 (32 to 74) 30–40 School (S and I), home Discrete trial; naturalistic Individualized Support Program 34 (29 to 44) 12 School (I), home, community Positive behavior support LEAP 43 (30 to 64) 25 School (I), home Peer-mediated intervention; naturalistic Pivotal Response Training 36 (24 to 47) Varies School (I), home, community, clinic Pivotal response training TEACCH 36 (24 and up) 25 School (S), clinic Structured teaching UCLA Young Autism Project 32 (30 to 46) 20–40 Home Discrete-trial Walden 30 (18 to 36) 36 School (I), home Incidental teaching a(S) segregated classroom; (I) inclusive classroom
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Educating Children with Autism to interact socially. The Pivotal Response Model takes the position that inclusion is most easily accomplished when children are in preschool because this is the period when academic demands are lowest (Koegel et al., 1999a). Although the Individualized Support Program is philosophically committed to inclusive education, the reality of very limited inclusion options for children with autistic spectrum disorders leads to a pragmatic approach of providing intervention in the most natural settings available. Play Play skills are closely related to both social and communication domains, and the ten models vary considerably in how play is addressed. Thus, play is a major emphasis of the Denver approach (Rogers and Lewis, 1988). Teaching in the course of play activities is also intrinsic to the models that primarily use incidental teaching or other naturalistic instructional procedures (i.e., Individualized Support Program, LEAP, and Walden), and inclusive programs are most likely to target creative or interactive play with peers (McGee et al., 1992; Odom and Strain, 1984). In fact, most programs target goals related to recreation (e.g., Pivotal Response Training [Koegel et al., 1999a]) and leisure skills (e.g., Children’s Unit [Romanczyk et al., 2000]), which, for young children, involve toy play. A review of published curriculum materials and program descriptions suggests that basic functional play skills (such as stacking rings and putting pegs in a pegboard) are routine goals at the Children’s Unit, Douglass, TEACCH, and the Young Autism Project. Cognitive and Academic Skills Virtually all of the programs teach cognitive skills, although the distribution of treatment time to this area varies considerably. Cognitive growth is a major emphasis of the Denver, Douglass, TEACCH, and Young Autism Project models. Although cognitive abilities tend not to be a major curriculum priority in programs that focus on peer interaction skills (i.e., LEAP, Pivotal Response Model, and Walden), skills such as mathematics, reading, and writing are taught because academic preparation may help secure a child’s placement in a regular kindergarten classroom (Koegel et al., 1999a). Self-Help The behavioral programs use an array of procedures of demonstrated efficacy in teaching self-help skills. The developmental programs tend to place less emphasis on self-help skills, probably because self-help skills are not viewed as core autism deficits. Although there are relatively few published studies on self-help skills that are specific to young children with autism, virtually all of the selected model programs were found to track the development of independent daily living skills.
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Educating Children with Autism Behavioral Challenges To a growing extent, strategies for promoting engagement have become nearly synonymous with methods of preventing challenging behaviors (McGee and Daly, 1999), because the behavioral challenges presented by young children with autistic spectrum disorders are usually not of a severity to warrant more intrusive intervention procedures (see Chapter 10). However, the Young Autism Project acknowledged use of aversive procedures with children participating in a 1987 outcome study. In a recent replication, aversives were discontinued after the first few subjects (Smith, 2000b). In another replication of the Lovaas (1987) outcome study, there was speculation on the possibility that the absence of aversives could have accounted for less positive child outcomes (Anderson et al., 1987). At least five approaches (i.e., Denver, Individualized Support Program, LEAP, Pivotal Response Model, and Walden) rely exclusively on positive procedures for preventing challenging behaviors or for building incompatible appropriate behaviors. Because the Individualized Support Program model is a more short-term, problem resolution approach (Dunlap and Fox, 1999a), a comprehensive positive behavior support strategy has been developed to accomplish demonstrable improvements in relatively short time-frames (see Chapter 10). Motor Skills The Developmental Intervention Model places a major emphasis on motor skills, including motor planning and sequencing. Most of the programs teach age-appropriate gross and fine motor skills. The UCLA program encourages gestural and vocal imitation. The Denver Model emphasizes motor imitation and motor planning. Carefully Planned, Research-Based, Teaching Procedures Include Plans for Generalization and Maintenance of Skills The ten representative programs use a range of research-based teaching procedures. The behavioral programs use procedures based on principles of learning, but the format of instruction falls along a continuum of discrete-trial procedures to incidental teaching. At the ends of the continuum, the Young Autism Project has historically used discrete-trial procedures nearly exclusively (Lovaas et al., 1981), while Walden provides all instruction using an incidental teaching approach (McGee et al., 2000). The other five behavioral programs use a mixture of discrete-trial and naturalistic teaching procedures, although the Individualized Support Program (Dunlap and Fox, 1999a), LEAP (Strain and Cordisco, 1994), and the Pivotal Response Model (Koegel et al., 1999a) models use predominately natural context procedures, and the Children’s Unit most commonly uses a highly structured discrete-trial approach (Romanczyk et al.,
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Educating Children with Autism 2000). The Douglass Center’s treatment continuum moves children from discrete-trial instruction to eventual placement in a classroom that uses mostly natural contexts teaching formats (Harris et al., 2000). The trend toward use of naturalistic teaching procedures began as an attempt to improve generalization of skills to use in everyday life. Procedural comparisons of discrete-trial instruction and incidental teaching have indicated that, given comparable reinforcement procedures, acquisition occurs at approximately the same pace for both of the procedures (McGee et al., 1985). However, generalization or transfer of skills from the teaching setting to unprompted use in new settings or with new people is enhanced when skills have been learned through incidental teaching. Incidental teaching is a systematic protocol of instruction derived from principles of behavior analysis, and haphazard or unplanned instruction of any type is unlikely to produce acquisition in children with autism (McGee et al., 1999). A method called structured teaching is used at TEACCH (Marcus et al., 2000). Structured teaching shares features common to discrete-trial instructional procedures but also emphasizes instructional formats derived from the developmental literature and psycholinguistics, as well as some incidental teaching (Watson et al., 1989). The focus is on environmental structure, visual schedules, routines, organizational strategies (e.g., working from left to right), and visual work systems that help a child achieve independence in various skills. With respect to reinforcement, the TEACCH model works from the idea that task performance and task completion will be motivating for children if they understand a task that is at an appropriate developmental level (e.g., supporting the development of emerging skills) and that builds on individual interests. The TEACCH structured teaching approach focuses on helping parents and teachers adapt the environment while helping children to develop skills. The two developmental programs use somewhat different approaches, although both are delivered during play interactions between adults and children. The technical foundation for the Denver Model and the Developmental Intervention Model differ significantly from the behavioral approaches, yet each involves teaching in natural contexts. Meaningful differences, however, tend to center on the role of reinforcement in the instructional process. The use of discrimination training techniques is most common in both discrete-trial and incidental teaching procedures. Individualized Intervention Plans Are Needed to Adjust for the Wide Range of Children’s Strengths and Needs All ten programs give explicit attention to the importance of individualizing treatment; their methods vary. In general, the procedural
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Educating Children with Autism approaches tend to be entirely custom-designed for each child, while the “programs” provide for individual adjustments within an overall packaged curriculum. Transitions from Preschool to School Are Planned and Supported Most of the selected programs report specific preparation for children’s transition from intensive intervention into school programs. For example, Douglass reports a process that occurs across the child’s last 9 months prior to program exit. Transition preparation begins with staff visits to future schools to assess the match of child with placement and to determine specific skills the child will need to function successfully in the next environment (Handleman and Harris, 2000). Receiving teachers are invited to visit Douglass to get an understanding of the child’s intervention history, and follow-up consultation is offered to receiving classrooms. In some cases, children make transitions gradually, with either partialday placements or accompaniment by familiar staff. Nearly all of the programs report placement outcomes, although it is recognized that a child’s progress is not the sole determining factor in placement decisions. The range of children going to typical classrooms following intervention differs widely across the programs, with program evaluation data reporting a range from 15 percent of children treated at the Children’s Unit (Romanczyk et al., 2000) to 79 percent of the children from Walden (McGee et al., 2000). It should be noted that children at the Children’s Unit were selected on the basis of severity of problem behaviors. Programs that exclude or do not encourage children with autism and other severe difficulties have tended to have more uniform positive outcomes. The political climate and local policies are also factors that influence placement outcomes. For example, 35 percent of the first 20 children treated in the Denver Model went to nonspecialized schools or daycare centers with normally functioning peers (Rogers et al., 1986); however, today, those numbers would be higher, because Colorado now has a statewide policy of including the vast majority of children with disabilities in regular settings. The Walden program was able to replicate placement outcomes achieved in Massachusetts, an area in which inclusion was well accepted and promoted, when the program relocated to Georgia, where inclusion of children with autistic spectrum disorders was rare. However, the policies of the program itself also play a role. Walden, for example, recommends inclusion for nearly all children with autistic spectrum disorders, irrespective of level of functioning, due to a program policy emphasizing that all children with autistic spectrum disorders have social needs that require exposure to normal social behavior.
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Educating Children with Autism INTERVENTION STUDIES There is a need for well-controlled clinical outcome research on these and other models of service delivery. The available research strongly suggests that a substantial subset of children with autistic spectrum disorders are able to make marked progress during the period that they receive intensive early intervention, and nearly all children with autistic spectrum disorders appear to show some benefit. However, the research to date is not at a level of experimental sophistication that permits unequivocal statements on the efficacy of a given approach, nor do the data support claims of “recovery” from autistic spectrum disorders as a function of early intervention. There is no outcome study published in a peer-reviewed journal that supports comparative statements of the superiority of one model or approach over another. Rather, with a few exceptions, much of the current outcome information is in the form of program evaluation data or measures of children’s progress when comparisons are made before and after intervention without control groups or blinded assessments of outcome. Although many children have participated in the ten model programs, outcome data is generally based on small samples, and the small sample size has also prohibited analysis of the role of individual differences within children in the effectiveness of different models. The components of the ten program models discussed above are empirically grounded. Researchers working with each of them have published numerous peer-reviewed findings specific to the procedures developed in their programs, although the level of standards for intervention studies varies considerably across journals. In some cases, the programs originated as applied laboratories in which to develop and test intervention procedures, so research about the effects of specific procedures was the natural output. As reviewed in other sections of this report, this cumulative body of procedural research serves as evidence that early educational interventions do enable young children with autistic spectrum disorders to acquire a variety of skills. However, the quality and quantity of research that evaluates the overall efficacy of these models has lagged behind the procedural research. The paucity of outcome data may be due to the fact that early education programs for children with autistic spectrum disorders are relatively new. The ethical and logistical complexity of conducting clinical outcome research with young children is also a major contributing factor. Examples of the outcome data generated by the ten selected models to date are presented in this section; the models are covered in alphabetical order. The studies discussed were published in peer-reviewed journals; these journals vary widely in the experimental rigor of their review process. In several cases, published data were provided to augment program description information rather than as results of experimental tests.
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Educating Children with Autism Children’s Unit Although this program regularly collects a comprehensive set of both observational and standardized measures of child progress, outcomes have been reported primarily in non-peer-reviewed book chapters (Romanczyk et al., 1994, 2000). There have also been a number of controlled evaluations of the computer data systems, staff training efforts, and clinical procedures (Romanczyk, 1984; Taylor et al., 1994; Taylor and Romanczyk, 1994), but these are beyond the scope of the model outcome data considered here. Denver Model There are at least four peer-reviewed outcome reports on the Denver Model, including the evaluation of a comprehensive training model described above (Rogers and DiLalla, 1991; Rogers et al., 1986; Rogers and Lewis, 1988; Rogers et al., 1987). An evaluation of the progress of 49 children treated in the Denver Playschool Model reported better than predicted gains in all developmental areas assessed by the Early Intervention Developmental Profile and Preschool Profile (Schafer and Moersch, 1981), with the exception of self-help skills. The developmental assessment was based on ratings by classroom teachers obtained early and late in treatment (Rogers and DiLalla, 1991). In addition, impressive language gains were demonstrated on standardized language assessments (one of five commonly used instruments) conducted by the children’s speech and language pathologists. An earlier assessment of the progress of the first 31 children treated in this model revealed small but statistically significant improvements in symbolic and social and communicative play skills, as rated on an objective observational system by blind observers (Rogers and Lewis, 1988). Moreover, there were indications that the intervention had impacted the severity of autism, as measured in the Childhood Autism Rating Scale (CARS). Douglass Developmental Center There have been four peer-reviewed publications of data on the Douglass Center (Handleman and Harris, 2000; Harris et al., 1990, 1991, 1995). These studies include documentation of progress as measured on the Stanford-Binet (Thorndike et al., 1986), the Preschool Language Scale (Zimmerman et al., 1979), and the Vineland (Sparrow et al., 1984). The most recent report is on 27 children who entered intervention between the ages of 31 and 65 months (Handleman and Harris, 2000). After 4–6 years following termination of intervention, the children’s place-
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Educating Children with Autism ments were analyzed in relation to their entry data to determine whether reliable predictors of treatment outcome could be identified. Both IQ scores and age of entry into treatment were found to be predictors of long-term placement. Of 11 children who entered intervention before the age of 48 months, pre- to posttreatment IQ score gains averaged 26 points, and all but one child were in regular placements (seven with support and three without support). For those who entered intervention at or older than 48 months, the average IQ score gain was only 13 points, and only one child was in a regular class placement at follow-up. Developmental Intervention Model Greenspan and Wieder (1997) provide a detailed review of the case records of 200 children who had participated in the Developmental Intervention Model for 2 or more years. Based on clinical notes and scores on the Functional Emotional Assessment Scale, 58 percent had “good to outstanding” outcomes, 25 percent had “medium” outcomes, and 17 percent had “low” outcomes. Overall, this pattern of outcomes was better than that of a comparison group of children who entered treatment with the Developmental Intervention Model following treatment with traditional behavioral services. However, there was a major confounding element in use of a comparison group: their parents had been dissatisfied with their previous intervention. Ratings were also not blind to intervention status. A more in-depth examination of 20 of the highest functioning children detailed marked gains on the Vineland (Sparrow et al., 1984) and CARS (Schopler et al., 1988). Somewhat inconsistent with the outcomes reported by others, expressive language scores were reported to be above those for receptive language, and self-care skills were lower than communication and socialization abilities. Individualized Support Program The Individualized Support Program model has reported single-subject data on the first six participating children (Dunlap and Fox, 1999a). Although this report was in a peer-reviewed journal, only one of the children’s interventions was evaluated with an experimental design. Positive pre-post changes were reported on the Autism Behavior Checklist (Krug et al., 1980), and proportional change index scores (Wolery, 1983) were computed for pre-post scores on the Battelle Developmental Inventory (Newborg et al., 1984). LEAP The LEAP program’s effect on children’s cognitive growth (Hoyson
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Educating Children with Autism et al., 1984) and social interaction development (Strain, 1987) was compared with that of a comparison group treated at another autism treatment program, with results documenting more positive developmental progress by children in the experimental program. More recently, a summary of case reports of the long-term progress of the first six children in the LEAP program is now available (Strain and Hoyson, 2000), but without comparisons or controls. The children ranged in age from 30 to 53 months at the onset of treatment, and they scored in the moderate to severe range of autism on the CARS (Schopler et al., 1988). By the time of program exit, and continuing until the children were 10 years old, the CARS scores for these children fell beneath the cutoff for autism. Large decreases in noncompliance were demonstrated in videotaped samples of parent-child interactions, both at program exit and when the children were 10 years old. There were also clinically significant increases in the amount of time the children spent engaged in positive peer interactions, both at program exit and at age 10. Five of the six children spent their school careers in regular education placements. Pivotal Response Model The Pivotal Response Model has reported long-term follow-up on a total of ten children (Koegel et al., 1999b). The first six children had similar language ages at entry, but they differed in their levels of initiating interactions. At the time of follow-up, it was found that higher initiation levels at entry predicted less restrictive school placements, higher adaptive and language test scores, and more appropriate parent-child interactions. The next four children, who displayed low levels of initiation at the time of entry into intervention, were provided with specific training on how to independently initiate interactions. At follow-up, three of the four children trained in self-initiations had placements in regular education settings, as well as impressive outcomes on measures of language pragmatics, adaptive behavior measured by the Vineland (Sparrow et al., 1984), and lower levels of autistic behaviors reflected on the CARS (Schopler et al., 1988). As a group, the 10 children treated with Pivotal Response Training had very good outcomes, but the absence of experimental design leaves it unclear whether these improvements can be attributed directly to the program’s intervention; this is a difficulty that holds true for almost all of the data reported for the ten model programs. TEACCH Program evaluation information on the TEACCH model has included consumer satisfaction data from parents, trainees, and replication sites (Mesibov, 1997), as well as objective assessment of parent teaching skills
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Educating Children with Autism (Marcus et al., 1978) and child progress (Schopler et al., 1982). There have been a number of studies describing progress in follow-up samples of young children who received services at TEACCH (Venter et al., 1992), and substantial IQ score gains have been commonly reported for nonverbal children who were diagnosed at early ages (Lord and Schopler, 1989). However, these studies are not direct evaluations of treatment outcomes. Most recently, a 10-hour home-based TEACCH program training teachers to serve young children with autism was compared with a discrete-trial classroom without the home-based program (Ozonoff and Cathcart, 1998). The focus of intervention in both programs was cognitive, academic, and prevocational skills. Following 4 months of intervention, the group served in the TEACCH home-based program showed more improvement than the comparison group on imitation, on fine and gross motor skills, and on tests of nonverbal conceptual skills. UCLA Young Autism Project Although the UCLA program has generated the most rigorously controlled early intervention research published to date, there has been considerable controversy due to various methodological and interpretational limitations (Gresham and MacMillan, 1997). In the original report (Lovaas, 1987), 38 children with autism were divided into two treatment groups: half of the children received intervention for at least 40 hours per week for 2 or more years, and the other half received the same intervention for less than 10 hours per week. There was a second comparison group who received treatment outside of the UCLA program. Nine of the 19 children who received intensive intervention showed IQ gains of at least 20 points. Gains were far less for children in both of the comparison groups. The Young Autism Project has also reported the longest follow-up tracking of children with autism who have received intensive early intervention (McEachin et al., 1993). By age 13, eight of the nine high-outcome children from the Lovaas (1987) study continued to have high IQ scores, and they were functioning unsupported in regular education classrooms. In contrast, only one child who received less intensive intervention had a “best outcome.” Several peer-reviewed evaluations have been conducted of replications of the Young Autism Project (Anderson et al., 1987; Birnbrauer and Leach, 1993; Sheinkopf and Siegel, 1998; Smith et al., 2000b). The replication results have been generally positive but mixed. With fewer hours of intervention, some of the replication programs were able to achieve similarly high IQ sore gains; results were more variable on other measures. For example, the most recent replication (Smith et al., 2000b), which served both children with autism and children with pervasive developmental
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Educating Children with Autism delay-not otherwise specified, yielded improvements in IQ scores, but, there were no significant changes in the children’s diagnoses or their adaptive or problem behaviors (Smith et al., 2000b). Most critiques of the outcome research generated by the Young Autism Project do not deny impressive child outcomes (Mesibov, 1993; Mundy, 1993); the debate centers on methodological issues related to subject selection and assessment measures (see Chapter 15). One of the most controversial issues surrounding the program pertains to descriptions of the best-outcome children in the 1987 study as “recovered” or “normal functioning,” especially in light of the paucity of measures of social or communicative functioning (McEachin et al., 1993). Walden Toddler Program Pre-post data on the preschool and overall Walden programs have been reported in non-peer-reviewed book chapters (McGee et al., 1994, 2000), and an evaluation of the family program is described by McGee and colleagues (McGee et al., 1993). Therefore, only the outcome data published on the toddler program is considered here. A total of 28 children with autism began intervention at an average age of 30 months, and those who participated in the program for at least 6 months were included (McGee et al., 1999). Pre-post comparisons without other experimental controls provide the majority of data. Videotaped observations of each child’s ongoing behavior were obtained daily across the first 10 days and last 10 days of enrollment in the toddler center. Results showed that although only 36 percent of the children were verbal at program entry, 82 percent of the children were verbalizing meaningful words by the time that they exited the toddler program to enter preschool. In addition, by the time of program exit, 71 percent of the children showed increases in the amount of time that they spent in close proximity to other children, with only one child showing levels of peer proximity that were outside the ranges displayed by typical children. Summary of Intervention Studies As a group, these studies show that intensive early intervention for children with autistic spectrum disorders makes a clinically significant difference for many children. The most systematic evaluation data are associated with intensive intervention approaches. However, each of the studies has methodological weaknesses, and most of the reports were descriptive rather than evaluations with controlled experimental research designs. There are virtually no data on the relative merit of one model over another, either overall or as related to individual differences in children; there is very limited information about interventions for children
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Educating Children with Autism under 30–36 months of age. There is overlap in the levels of intensity with which the models are implemented, and the measures of outcome differ widely across interventions. In addition, as summarized in Figures 1–1, 1–2, and 1–3 (in Chapter 1), studies that addressed general aspects of interventions consistently had methodological limitations that were often even more common than in studies about interventions for narrower target areas (see Kasari, 2000). These limitations in part reflect the tremendous scope required in carrying out research concerning comprehensive intervention programs. On the whole, issues related to internal and external validity were addressed only minimally in about 80 percent of the published studies, with measurement of generalization outside the original setting occurring only minimally in 70 percent of the research reports. Given the difficulty and the cost in time and money of such studies, it seems most useful to consider alternative methods to addresses these concerns. The models presented positive and remarkably similar findings, which included better-than-expected gains in IQ scores, language, autistic symptoms, future school placements, and several measures of social behavior. Although possible changes in diagnosis are implied, these have not been systematically documented or supported with independent observations or reports. Considered as a group, these peer-reviewed outcome studies suggested positive change in the language, social, or cognitive outcomes of children with autistic spectrum disorders who received intensive early intervention beginning at young ages. However, only three of the studies (plus one follow-up) had comparison group data, and only one of the studies (Smith et al., 2000b) practiced random assignment of children to conditions, and this procedure was complex. Pre-post assessment measures reflected positive outcomes for the majority of children receiving intervention, and most children showed some progress. However, there was almost no information on the contribution of the other interventions and therapies in which the children participated. In sum, it appears that a majority of children participating in comprehensive behavioral interventions made significant progress in at least some developmental domains, although methodological limitations preclude definitive attributions of that progress to specific intervention procedures.
Representative terms from entire chapter: