Use of Services among Young Adults with Autism Spectrum Disorders

In the United States, the number of students 12 to 17 years of age enrolled in special education with a diagnosis of autism spectrum disorder (ASD) increased from 15,480 in 1998 to 99,803 in 2007. Whether the increase is due to changing identification practices or a true increase in population prevalence, treated prevalence is increasing and, according to researchers, “implications of this trend for service systems are poorly understood.” There have been efforts on the national, state, and local levels to meet the needs of the growing number of young children identified as having an ASD. However, there have not been corresponding efforts to plan for ensuring continuity of support and services as children with an ASD age into adulthood. To date, research on services of adults with ASDs has been limited. The period following graduation from high school is recognized as a pivotal time in the transition to adulthood; a positive transition can set the stage for an adaptive adult life course, whereas a negative transition may lead to developmental, health, and social difficulties that persist into adulthood. Young people with ASDs are particularly vulnerable during the transition period following high school; they face challenges with communications and social interaction, and have greater reliance on others for aid and high rates of comorbid health and mental health problems, compared with the general population. The National Institute of Mental Health has noted that, “the termination of eligibility and availability of school-based services is particularly problematic for those with disorders that require intensive services that are principally delivered through educational settings, such as youth with autism spectrum disorders.” There have been few studies on the prevalence and patterns of service use among young adults with ASDs. Understanding which factors are most strongly related to service use can suggest policy targets that may have the most leverage for improving access. Researchers recently conducted a nationally representative telephone survey designed to establish population estimates of rates of service use among young adults with an ASD during their first few years after leaving high school; the survey also examined correlates of use. Results were reported in Archives of Pediatrics & Adolescent Medicine [2011;165(2):141-146]. Survey participants were parents and guardians of young adults (19-23 years of age) with ASDs. The primary outcome measures were use of the following services in the prior 2 years or since leaving high school: mental health services, medical evaluation and assessment, speech therapy, and case management. The researchers utilized data from the National Longitudinal Transition Study 2 (NLTS2), a 10-year prospective study being conducted for the US Department of Education that is following >11,000 youths enrolled in special education as they age into young adulthood. The ratio of males to females among youths represented by NLTS2 was 6:1 (a ratio consistent with the higher prevalence of ASDs among males in the general population); mean age was 21.5 years; 21.2% of youths with an ASD represented by NLTS2 were nonverbal and 34.5% had attention-deficit/hyperactivity disorder. Most (79.0%) lived with their parents; 91.5% had health insurance. Overall rates of service use were 23.5% for medical services, 35.0% for mental health services, 41.9% for case management, and 9.1% for speech therapy. Approximately 39% had not received any of these services. The adjusted odds of not receiving any services were 3.3 times higher for African American youths compared with white youths and 5.96 times higher for those with incomes of ≤$25,000 compared with those with incomes >$75,000. Limitations cited by the researchers include limiting the sample to youths who had been enrolled in the special education autism category at baseline, the possibility that respondents’ knowledge and recollection of service use may not have been perfect, and the fact that the associations are cross-sectional and, therefore, causal attributions are not possible. The researchers commented that “rates of service disengagement are high after exiting high school. Disparities by race and socioeconomic status indicate a need for targeted outreach and services.”