Post-High School Service Use Among Young Adults With an Autism Spectrum Disorder
Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatrics and Adolescent Medicine, 165(2), 141-146.
Reviewed by ToniAnne Giunta,
Why review this topic?
With the prevalence of autism increasing, policy makers are working to improve services for children with autism spectrum disorders (ASD), including education of early warning signs and covering the cost for early intervention. There has been little effort, however, in planning for supports as children transition into adulthood. Special education enrollment of adolescent children with ASDs, aged 12 to 17 years, has increased from 15,480 in 1998 to 99,803 in 2007. The National Institute of Mental Health reported that availability of special education services is usually terminated at the conclusion of high school. Nationally representative data on prevalence and characteristics associated with services for young adults with ASDs are lacking. Such information is needed for several reasons: (a) to improve current services, (b) to improve access to services, (c) to recognize underserved populations, and (d) to help clinicians and family members better prepare adolescents with ASDs for adulthood.
What did the researchers do?
The researchers attempted to produce a nationally representative estimate of rates of services (i.e., psychological or mental health services/counseling, medical evaluation and assessment, speech or language therapy/communication services, case management) in young adults with ASDs during the years after high school. Characteristics that were associated with services were also examined. Data were retrieved from the National Longitudinal Transition Study 2 (NLTS2), conducted by SRI International for the US Department of Education. 920 young adults with an ASD enrolled in special education settings participated in NLTS2, with a subset of 410 young adults examined in the present study. The young adults’ parents/guardians were surveyed via a computer-assisted telephone interview, in which questions were asked about their children receiving any of the aforementioned services. Other characteristics examined in the survey included need and severity indicators, socioeconomic status, ethnicity and race, diagnosis of attention-deficit/hyperactivity disorder, and a functional mental skills scale (an example of a functional mental skill could be how well the youth tells times without help).
What did the researchers find?
For the 410 young adults in the years following high school, 35.0% received mental health services, 23.5% received medical services, 9.1% received speech therapy, and 41.9% received case management. In contrast, NLTS2 results reported that in adolescents still in high school, 46.2% have mental health services, 46.9% have medical services, 74.6% have speech therapy, and 63.6% have a case manager. Approximately 39.1% of exiting high school students did not receive any services. The odds of not receiving any services were 3.31 times higher in African American young adults and 5.96 times higher in families with incomes of $25,000 or less, compared to Caucasian young adults and families with incomes greater than $75,000, respectively. No case management was 5.88 times higher in families with incomes of $25,000 or less, compared to families with incomes greater than $75,000. Those with higher functional mental statuses had higher odds of no services and lower odds of case management and medical services. Need indicators and presence of attention-deficit/hyperactivity disorder did not correlate with the outcomes.
What are the strengths and limitations of the study?
It is expected that the number of adolescents with ASD transitioning into adulthood will increase in the future. Further research on improved services for these individuals is needed, and the present study provided an important first step in achieving this goal. The size and diversity of the group of individuals being assessed was representative of the national population, making the findings highly generalizable. This representative group made it possible to examine variables based on demographic factors (e.g., race, socioeconomic status). The data presented also represent the most recent findings in young adults with ASDs. The findings, however, have some limitations. Only students enrolled in the special education autism category as per the Individuals with Disabilities Education Act were examined. Students did not have to have an autism diagnosis as per the Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition) to participate in the research. Epidemiological research, however, has found that 99% of children in the autism special education category also meet the DSM-IV criteria. Additionally, policy-making differs from state to state, and the study did not take location into consideration. Perhaps the greatest limitation was the use of self-report as the data collection procedure. Such subjective reporting measures, which rely mainly on respondents’ personal knowledge and recollection, may lead to inaccurate prevalence estimates. Direct examination of the youths’ functional levels and services would have yielded more accurate information. Finally, the list of services examined was not inclusive of all possible services that could have been in use at the time of the survey (e.g., applied behavior analysis services or other type of educational/vocational services).
What do the results mean?
According to these results there is a decline in services (i.e., mental health services, medical evaluation and assessment, speech therapy, case management) in exiting high school students with autism spectrum disorders. Additionally, there is a need to examine patterns of service disengagement in regards to race and socioeconomic status. The researchers point out that access barriers, service delivery models, and policies to promote access must be examined in these underserved populations, and it is recommended that this can be done via revisions of the Interagency Autism Coordinating Committee.