Services Utilized by Adults with Autism Spectrum Disorders

Background: Until recently, the focus of autism research has been primarily on children. A study recently published in the UK suggests that the prevalence of autism in adults mirrors the prevalence of autism in children at approximately 1 in 100. As with children, adults with autism require services and supports to address the disability associated with autism. Research suggests that quality of life for adults with autism is directly related to the services they receive rather than to the characteristics of their disability; however, little is known about the types and patterns of services these adults use. Objectives: to 1) describe the types and quantity of services used by adults with autism and their families, 2) evaluate the perceived effectiveness of these services, and 3) determine gaps in services identified by adults with autism and their families. Methods: The ASERT (Autism Services Education Research and Training) Needs Assessment survey was mailed to more than 30,000 individuals and families of children with autism spectrum disorder in the Commonwealth of Pennsylvania. The survey asked questions about services currently received by individuals with autism and their families. For the current study, we included surveys completed by adults (18 years of age and over) with autism, or a family member of an adult with autism. Results: Data collection is ongoing. To date, 69 adults with autism and 233 parents of adults with autism completed the survey. Individuals with autism about whom the survey was completed ranged in age from 18 to 67 years and encompassed individuals with Asperger's disorder, autistic disorder, and pervasive developmental disorder – not otherwise specified. Respondents reported numerous services that adults with autism are receiving, including college support, vocational support, behavior management, and mental health counseling. Seventy-eight percent of adults with autism who were currently enrolled in a post secondary education program described needing special support. All 78% were receiving one or more types of educational support services, the most common being test-taking assistance. Only 16% of respondents with autism reported being actively employed. Twenty-three percent of respondents reported receiving some type of vocational support, including vocational training, supported employment, and career counseling. Many families reported receiving services for their child's behavioral symptoms. The services most widely used included support for anxiety (50%) and aggressive behavior (30%). Forty-eight percent of people with autism used mental health counseling and 60% received case management services. The most common services reported as needed but not received were social skills training (42%), career counseling (30%), and vocational training and supported employment (both 28%). Conclusions: Survey results to date suggest a complex array of service needs among adults with autism and significant gaps in access to services. Of particular interest were the significant number of adults in higher education settings and the large number using services to address issues related to anxiety and aggression. Of particular concern were the low number in any type of employment and the high numbers without access to social skills and vocational supports.