HJR 228 requested the Virginia Departments of Education, Health, and Mental Health, Mental Retardation, and Substance Abuse Services to study the services available for children with autism and pervasive developmental disorders (henceforth referred to as "children with autism spectrum disorders"). As lead agency responsible for the study, the Virginia Department of Education (VDOE) contracted with the Virginia Institute for Developmental Disabilities (VIDD) at Virginia Commonwealth University (VCD) to complete the study. The study commenced October 1, 2000 and concluded July 31, 2001.

A Study Group composed of representatives from four state agencies was formed to guide the overall design and implementation of the study. An Advisory Panel was also created to provide input to the study's design, review and provide feedback on the instrumentation, and offer interpretations and recommendations based on the study's findings. The panel included membership from a variety of stakeholder groups (i.e., parents, school personnel, technical assistance providers, medical treatment providers, community services board staff, early intervention providers, disability organizations) representing the diverse regions of the state.

Data were gathered through surveys, group discussions, focus groups, informal interviews, existing databases, and a review of the research literature. All procedures and instrumentation used in this study were approved by the VCU Institutional Review Board (IRB) and by VDOE. The design of the study sought to obtain input from multiple stakeholder groups, including parents of children with autism spectrum disorders, special education teachers, related services personnel (e.g., speech and language therapists, behavior therapists, psychologists), special education administrators, treatment providers (i.e., individuals who provide services outside the school setting), Local Interagency Coordinating Council (LICC) coordinators, Community Services Board (CSB) mental retardation (MR) directors, statewide technical assistance providers (i.e., The Autism Program of Virginia, Training and Technical Assistance Centers, Virginia Autism Resource Center), the Advisory Panel, and the Study Group.

Study Area 1: The Characteristics, Number, and Location Of Children with Autism Spectrum Disorders

The Virginia Department of Education (VDOE) is the only agency that is mandated to collect information about the number and location of children with autism spectrum disorders in Virginia. These data are limited to children between the ages of 3 and 22. While information is available about the number and location of children with disabilities between birth and age two, these data do not specifically identify children with autism spectrum disorders. In addition, no agency is required to maintain records on the characteristics (e.g., type of autism spectrum disorder, presence of other disabilities) of children with autism spectrum disorders.

Existing data from VDOE indicate steady growth in the number of children with autism spectrum disorders over the last decade. Most children who are identified with an autism spectrum disorder are elementary school-aged and are spending less that 60% of their day in the general education classroom. Overall, there appears to be a need for a comprehensive strategy for tracking the number, location, and characteristics of children with autism spectrum disorders in Virginia.

Study Area 2: The Availability of Teachers and Other Special Education and Treatment Professionals

Survey respondents indicated that the availability of teachers and other special education and treatment professionals for children with autism spectrum disorders vary widely across Virginia. Although most parents were able to obtain an initial diagnosis of autism spectrum disorders from a professional within their locality, the majority experienced difficulty locating service providers following their child's diagnosis. This challenge in locating qualified personnel was acknowledged by special education administrators, LICC coordinators, and MR directors. Inadequate numbers of professionals exist to serve children with autism spectrum disorders in many areas of Virginia.

Despite difficulties with sustaining sufficient numbers of qualified professionals, most direct service providers (special education teachers, related services personnel, treatment providers) indicated that they have access to other professionals in their school/office who have expertise in the area of autism. Although the number of professionals available to provide services to children with autism spectrum disorders appears limited, those professionals who are employed in this capacity frequently have access to other service providers with similar expertise in their locality.

Study Area 3: The Level of Expertise Found in the Various Areas of Virginia

The findings from Study Area 3 suggest that the level of expertise of professionals working with children with autism spectrum disorders is questionable. Substantial numbers of professionals (somewhat less than 50% across stakeholder groups) reported that they questioned their training and qualifications to work with children with autism spectrum disorders, as well as their knowledge about educational and medical approaches for working with this population. On the whole, a majority of respondents within each stakeholder group reported that they had adequate training in their specific area of endorsement/expertise, but had less confidence in their training specifically for teaching/serving children with autism spectrum disorders. Few professionals indicated that they received adequate preparation to teach children with autism during their pre-service training program and many indicated limited satisfaction with both their access to inservice training and the usefulness of the training they received.

Study Area 4: The Adequacy of the Available Services for Children with Autism Spectrum Disorders

Taken together the data collected among the various stakeholder groups suggest that there is a good deal of variability in the adequacy of available services for children with autism. While these data do not suggest a clearly positive or negative atmosphere in the state regarding the adequacy of the available services, substantial portions of the various stakeholder groups reported a lack of adequacy of available services. For example, just over half the special education administrators surveyed reported that parents of children with autism spectrum disorders have requested services that their school division/program was unable or chose not to provide. Only little better than half of special education teachers, related service personnel, and special education administrators agreed that children with autism spectrum disorders receive the types and amount of services they need at school. Lastly a large majority of special education teachers, special education administrators, and related services personnel indicated that general education classrooms are not staffed appropriately to meet the needs of children with autism spectrum disorders. Parents' responses to all of these questions varied tremendously. Somewhat higher ratings were given regarding the staffing of special education classrooms. In summary, these data show wide variability in responses, possibly indicating a variation among schools, school divisions, and geographic regions of the state. Other variability may be due to age of the child and the disability level (i.e., mild or severe).

Study Area 5: The Efficacy of the Various Treatment Approaches

Preliminary findings suggest that few approaches offer substantial empirical evidence to support their effectiveness. Of the approaches reviewed, applied behavior analysis provided the most substantial number of empirically based studies. The benefits of early intervention, positive behavior supports, and augmentative communication were also well documented. For two of the approaches, chelation therapy and SCERTS (Social Communication Emotional Regulation and Transactional Supports), no literature was located to indicate that the approach had been scientifically investigated. Most other approaches were supported by a limited amount of research. In some cases the approach (e.g., inclusive education) had been extensively researched but information on its specific benefits for children with autism was limited. Controversial approaches identified in the literature include auditory integration training, facilitated communication, and secretin. Given the current debate surrounding the efficacy of practices for educating children with autism, researchers are increasingly supporting the use of multiple educational approaches that are based on the individual needs of the child (Heflin & Simpson, 1998; Smith, 2001). Additional research is needed to extend our understanding of the effectiveness of all approaches for children who fall across the autism spectrum.

Surveys conducted with parents, special education teachers, related services personnel, and treatment providers (i.e., non-school professionals) in Virginia provided an array of perceptions regarding the efficacy of the approaches studied. All of the 20 approaches were perceived to be effective by at least some of the respondents. Since these data rely on perceptions rather than empirical evidence, they provide valid information about the experiences of stakeholders in Virginia but not about the efficacy of the approaches. Data from these surveys support the need for multiple approaches and the selection of approaches based on the individual needs of the child.

Challenges in Serving Children with Autism Spectrum Disorders

Professionals identified several challenges in providing services for children with autism spectrum disorders. Although many of the themes that emerged were similar across stakeholder groups, the relative emphasis placed on each theme varied considerably among groups. The one challenge that all groups cited as a primary challenge was a "lack of information, trained teachers/professionals, services, resources, and time." The overall themes that emerged clustered around the following challenges:

• Lack of information, trained teachers/professionals, services, resources, and time
• Meeting diverse student needs
• Coordination of services and cooperation among professionals
• Lack of knowledge about autism
• Negative attitudes and conflicting expectations
• Obtaining an accurate diagnosis
• Funding streams that do not cover autism
• Providing/funding the intensity of services requested
• Determining effective approaches

Strategies for Improving Services in Virginia

Parents and professionals were asked to identify steps that could be taken by the Commonwealth of Virginia to improve services for children with autism spectrum disorders. Toward the conclusion of the study, members of the HJR 228 Advisory Panel and Study Group met to review the preliminary recommendations generated across all stakeholder groups and to identify those stakeholder recommendations that they believed would make the most significant impact on improving services for children with autism spectrum disorders in Virginia. These recommendations are listed below.

• Provide more training for individuals working with children with autism spectrum disorders. This training should promote eclectic, research-based approaches that reflect best practices. Educate parents about the various treatment approaches, services, and resources available.

• Across all disciplines, provide university course work that addresses the needs of children with autism spectrum disorders. Professionals should be adequately prepared to work with this population upon exiting their pre-service training program.

• Train treatment providers to accurately diagnose children with autism spectrum disorders. These providers should possess the skills to identify children at a young age so that children can receive appropriate early intervention services.

• Make community services (i.e., those not provided by the school) more available, accessible, and equitable across the state. Disseminate information about these services.

• Require insurance companies to cover services, therapies, and treatments for children with autism spectrum disorders.