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Project DATA : Developmentally Appropriate Treatment for Autism

Project DATA : an inclusive school-based approach to educating young children with autism
Topics in Early Childhood Special Education, Fall, 2004 by Ilene S. Schwartz, Susan R. Sandall, Bonnie J. McBride, Gusty-Lee Boulware

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For educators, this is a challenging time to be working in the area of autism. Many will remember the 1990s and first years of this decade as the period when autism went from a rarely identified disability with a reported prevalence of 3 to 5 individuals out of 10,000 to the fastest growing category of disability, with current prevalence reported as 1 in 166 (Autism Society of America, 2004). Professionals working with infants and toddlers in early intervention programs have gone from rarely enrolling a child with autism to enrolling as much as 20% of toddlers with a diagnosis on the autism spectrum. Although great strides have been made in diagnosis, assessment, and intervention for children with autism, many unanswered questions still remain and much work needs to be done.

One of the most pressing challenges facing the field of early child special education is how to provide services to children with autism and their families that are effective, inclusive, developmentally appropriate, and acceptable to consumers (e.g., family members, school personnel). In other words, providing effective services for children with autism is where "the rubber hits the road" for early childhood special education personnel who believe in the importance of inclusive programs, developmentally appropriate practices, embedded instruction, and the use of instructional strategies that are evidence based. We need to ensure that these programs are inclusive and effective and that parents are never put in the position of having to make an either--or choice. This challenge is exacerbated by research evidence that is ambiguous, Internet sites that profess to have all the answers, and some practitioners who believe there is only one way to treat all children with autism.

It is within this context that we developed a model program for young children with autism, which eventually became Project DATA (Developmentally Appropriate Treatment for Autism). Our initial work was motivated by a community need for services for children with autism that reflected what we know about child development and current best practices in applied behavior analysis. We were motivated to develop a program that (a) integrated the best, most current practices from applied behavior analysis and early childhood special education and (b) resulted in the best possible outcomes for children with autism and their families. We were also influenced by some simple guiding principles, which served as the cornerstone of our program:

* Children with autism are children first, and any program must be a safe and nurturing place for children.

* Data-based decision making must be employed across all aspects of the program.

* Children with autism must have multiple opportunities to interact successfully with their typically developing peers every day.

* The program we develop must be acceptable to consumers and must fit in the social contexts of public schools.

With these principles in mind, we decided to work with our school district partners to develop a program that would help them provide effective, acceptable, and sustainable services to more children with autism. The purpose of Project DATA thus became to develop, implement, evaluate, and disseminate a program for young children with autism and their families that would be effective, sustainable, and responsive to the needs of consumers. This project emphasized actively integrating the strengths of early childhood special education and applied behavior analysis to create a comprehensive, effective, and appropriate program for young children with autism.

Over the last two decades, impressive progress has been made in some treatment programs specifically designed for young children with autism (Harris & Handelman, 1994). Although the outcomes achieved by these state-of-the-art programs are good and have been supported by data demonstrating positive child outcomes (Lovaas, 1987; McClannahan & Krantz, 1994; Strain & Cordisco, 1994), the services they offer are quite different from the "state-of-the-practice" services provided by most children with autism and their families (Dawson & Osterling, 1997). There are several reasons for this. First, most of the high-visibility programs are operated by private schools or universities without direct connections to public school districts (Anderson, Campbell, & Cannon, 1994; McClannahan & Krantz, 1994; McGee, Daly, & Jacobs, 1994). Often these programs are segregated (i.e., they serve only children with disabilities) or require children to "earn" their way into integrated or inclusive settings (Bondy & Frost, 1994; Handleman & Harris, 1994). Second, many of these programs are implemented by professionals who are not closely linked with the public schools, and the programs thus may lack the ecological or social validity that is required for eventual replication, adoption, and maintenance in a public school setting. Third, many such programs are run by professionals who are not experts in the areas of early childhood education or early childhood special education and thus overlook some important developmental information in regards to young children. Finally, most of these programs are firmly rooted in applied behavior analysis, with little or no input from other disciplines, especially those based in the public school. School district administrators, researchers, and advocates need to collaborate to increase the capacity of their districts to provide services for children with autism and their families and to ensure that these services draw on the existing best practices from a number of related disciplines. In one of the most influential reports on autism in recent years, the National Institutes of Health report on the state of the science in autism, McIlvane (1996) noted, "Although methods derived from applied behavior analysis were acknowledged as especially effective in treating autism, it was thought that incorporating perspectives ... from other disciplines might enhance the effectiveness and acceptability of treatment methodologies" (p. 150). This call for diverse approaches in treating autism in young children has been repeated by every authoritative review of the research (see the 2001 report by the National Research Council for the most in-depth review of services for young children).

Current research has suggested that there are many effective approaches for educating young children with autism (Bristol et al., 1996; Dawson & Osterling, 1997; Harris & Handleman, 1994; National Research Council, 2001; Siegel, 1996), which differ primarily in the amount and location of services. According to Dawson and Osterling, however, effective programs for children with autism share six common elements:

1. They include curriculum content that addresses the following:

* the ability to attend to elements of the environment (Koegel, & Covert, 1972; Pierce & Schreibman, 1994, 1995; Rosenblatt, Bloom, & Koegel, 1995);

* the skill of imitating others, both adults and peers (Carr & Darcy, 1990; Garfinkle & Schwartz, 2002)

* the use and comprehension of language (Garfinkle & Schwartz, 2001; Koegel, Koegel, & Surratt, 1992; Secan, Egel, & Tilley, 1989; Taylor & Harris, 1995);

* appropriate play with toys (Haring & Lovinger, 1989; Lewis & Boucher, 1995; Stahmer, 1995); and

* social interaction (Koegel & Frea, 1993; Krantz & McClannahan, 1993; Sainato, Goldstein, & Strain, 1992; Zanolli, Daggett, & Adams, 1996).

2. They include highly supportive teaching environments and generalization strategies (Dunlap, Koegel, & Koegel, 1984; Gaylord Ross, Haring, Breen, & Pitts-Conway, 1984; MacDuff, Krantz, & McClannahan, 1993; McBride & Schwartz, 2003).

3. They are conducted in learning environments that are predictable and routine (e.g., Lord & Schopler, 1994).

4. They employ a functional approach to behavior problems (Carr & Durand, 1985; Day, Hornet, & O'Neill, 1994; O'Neill, Horner, Albin, Storey, & Sprague, 1990; Schwartz, Boulware, McBride, & Sandall, 2001).

5. They provide a planned transition from the preschool to elementary school (Chandler, 1993; Fowler, Schwartz, & Atwater, 1991).

6. They emphasize an individualized approach to family involvement (Boulware, Schwartz, & McBride, 1999; Dunst, Leet, & Trivette, 1988; Koegel, Bimbela, & Schreibman, 1996; Krantz, MacDuff, & McClannahan, 1993; Lovaas, 1993).

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