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.
Katerina M. Dudley and colleagues have an article at The Journal of Autism and Development Disorders titled "Understanding Service Usage and Needs for Adults with ASD: The Importance of Living Situation." The abstract:
With the increasing prevalence of adults with autism spectrum disorder (ASD), research examining the service experiences of this population is greatly needed. The current study investigated service use, unmet needs, and obstacles to service access for a large sample of adults with ASD. After accounting for various demographic factors known to impact service usage and needs, living situation was a significant predictor of service use, needs, and obstacles to services. Adults with ASD living with family reported less service use, higher unmet need, and more obstacles to accessing services. With more than half of this adult sample living with family, results have clear public policy implications to support the increasing population of adults with ASD living with aging caregivers.From the article:
Compared to adults with ASD who lived with family members or lived independently, it may be unsurprising that adults with ASD who lived in supported residential settings, such as supervised housing or group homes, received more services given the array of services offered and delivered through their supported living facility. However, the size of the gap in service access, combined with the clear indication that more services are needed by adults with ASD living with family caregivers or living independently, is staggering. A surprisingly large percentage of families whose adult lived at home (60%) reported needing more services. This result remained even after controlling for a variety of adult and caregiver factors known to impact service usage and needs.