We reported on the prevalence and correlates of service use among a nationally representative sample of post-high school youth with ASD. Rates of service use ranged from a low of 9.1% for speech therapy to a high of 41.9% for case management. These rates are lower when compared to estimates for high school students with ASD from the first wave of the same study, six years earlier, when all youth were still in high school: 46.2% received mental health services, 46.9% had medical services, 74.6% were getting speech therapy, and 63.6% had a case manager.19
The estimates are not perfectly comparable because the post-high school sample does not include all the youth from the first wave, as some had not yet exited school and some were lost to follow up. Nonetheless, the differences clearly support the general conclusion that exiting high school is associated with a steep drop in service receipt.
Notably, 39.1% of all youth received none of these services. Compared to white youth, the odds of no service use was 3.3 times higher among African-American youth despite there being no corresponding disparity when services were examined individually. This heightened risk for total service disengagement among African-American youth suggests a need for targeted prevention and outreach. This finding also highlights the importance of examining broad patterns of service disengagement, in addition to the use of individual services, when devising systems for monitoring service equity, as the latter strategy may miss important disparities.
There was no association between need and service use when we examined verbal ability and attention deficit disorder. Functional mental skill was the only need factor consistently related with outcomes, with more able youth being less likely to receive case management or medical services and more likely to be receiving no services. The particularly strong link between functional mental skills and case management may be due to the fact these services are often provided for adults via state mental retardation and developmental disabilities (MRDD) departments. Qualifying for adult MRDD services in many states requires demonstrable functional impairment in addition to a diagnostic label. In particular, many Medicaid home and community based services waiver programs require a level of care determination that emphasizes functional impairments and self care skills.
Youth from lower income households had higher odds of receiving no services at all and of receiving no case management. Multiple factors beyond merely a reduced ability to privately purchase services may be underlying this association. Services may not be located in neighborhoods where poorer families live and transportation to reach distant services may be expensive or prohibitively time-consuming. Poorer families may also have reduced access to information resources, such as Internet access, where they can learn about available services.
The socioeconomic and racial disparities in service engagement documented in our study clearly indicate a need for further research into access barriers, the development and evaluation of equitable service delivery models, and targeted policies to promote access among underserved populations. The Federal Interagency Autism Coordinating Committee (IACC) is responsible for establishing autism research priorities and updating them annually. The 2010 report had two sections of recommendations for research related to services and adults, however no explicit mention was made of addressing racial or socioeconomic disparities in service use among adults.27
We recommend that future revisions of IACC research priorities include explicit calls for investigating racial and socioeconomic disparities in service access and individual outcomes among adults with ASD.
This study has some limitations. First, the sample is representative of youth who had been enrolled in the special education autism category at baseline and may not be fully representative of all youth with ASD in the general population in so far as some may be served in other special education categories. Second, respondents' knowledge and recollection of service use and related factors may not be perfect. The use of self-report to measure health care utilization may lead to underreporting, the most common problem with this form of data collection.28
If it were feasible, direct examination of health and services records might yield different prevalence estimates. Unfortunately, there was no way of verifying the reports of respondents by checking medical records. Third, the study does not include an indicator for state location precluding the potential analysis of important state-to-state differences in policies that can influence service use and related outcomes.5, 29-31
Finally, these are cross-sectional associations and therefore causal attributions are not possible. Once all the NLTS2 youth have exited high school and the data become available, future research should examine longitudinal trajectories of service use in order to discover risk factors for service discontinuity.
Several strengths of the study counterbalance its limitations. First, the national representativeness of the sampling design makes findings highly generalizable and relevant for policy and practice. Second, in contrast to most prior research in the U.S., the size and diversity of the sample allowed us to examine disparities in service use by demographic factors including ethnicity, race, and socioeconomic status. Third, the data is very recent and presents an up-to-date picture as compared to the handful of extant studies of young adults with ASD, many of which are over a decade old.
The number of youth labeled with ASD and entering young adulthood will continue to rise in the foreseeable future. The National Institutes of Health Strategic Plan for Autism Research has flagged research on services and adulthood as deserving increased attention. This study represents an important step in the process of building a foundation of evidence that can help improve services and foster independence and health among youth with ASD.