Uncertainty is a major theme of The Politics of Autism. In the concluding section, I write:
A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.At The Journal of Autism and Developmental Disorders, Julie Lounds Taylor and Leann Smith DaWalt have a brief report titled "Postsecondary Work and Educational Disruptions for Youth on the Autism Spectrum."
This study examined vocational/educational disruption in the 2–3 years after high school for 36 youth with autism spectrum disorder (ASD). Data were collected three times from parents: during youth’s last year of high school and two times after high school exit. Data were coded into categories indicating any versus no disruptions in postsecondary vocation/education, and group differences in individual (behavior problems, IQ, adaptive behavior, autism severity, stress reactivity) and family (parent depression, anxiety, quality of life; family income and climate) factors were examined. One-half of youth had experienced a postsecondary vocational/educational disruption; parents of those with a disruption had more depressive and anxiety symptoms and lower quality of life while their son/daughter was still in high school.From the article:
Adding to the growing literature on vocational outcomes for adults with ASD, the present study documented significant vocational and educational instability in the lives of young adults in the years immediately following high school exit.Fifty percent of the sample faced disruption within three years. These disruptions were significant, including job loss and expulsion from college.
Research and services should focus not only on the factors that promote obtaining employment or PSE positions, but also on understanding and developing interventions aimed at addressing the factors that promote sustaining these activities. [emphasis added] The role of the family has been virtually ignored in studies that examine employment outcomes for adults with ASD; yet, our findings suggest that families may provide supports and scaffolding needed for these adults to sustain employment and PSE. When families are distressed, they may not be able to provide these intensive supports, and disruption occurs. Future studies should more directly examine the link between parent functioning and their ability to provide support to their adult offspring with ASD. It may be that one avenue to promote their vocational/educational stability is to better support their parents. Importantly, these investigations should include both negative and positive indicators of parental/family functioning, as both were related to disruptions in our analyses.