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Sunday, October 15, 2017

Perspectives on Transition Outcomes

The Politics of Autism explains that autism services can be complicated, creating difficulties for autistic people and their families.  Uncertainty another major theme of the  book.  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 Autism, an article titled "Parents’ and Young Adults’ Perspectives on Transition Outcomes for Young Adults with Autism," by Collette Sosnowy, Chloe Silverman, Paul Shattuck.

The abstract:
Existing research shows that young adults with autism spectrum disorder have poorer outcomes than their peers with other developmental disabilities in the key areas of independent living, postsecondary education, and employment. However, we understand little about how young adults with autism and their families understand and value outcomes and whether these indicators match their goals and aspirations. We interviewed parents (n = 21) and young adults with autism spectrum disorder (n = 20) about their experiences with the transition to adulthood to understand what they consider to be desirable outcomes and how they seek to achieve them. Understanding these perspectives will help identify areas of need as well as disconnections between service objectives and the goals of young adults and their families. Participants described outcomes as more complex and nuanced than current conceptions and measures account for. They defined and evaluated outcomes in relation to their or their child’s individual abilities, needs, and desires. These findings provide important insight into challenges to and facilitators of desired outcomes, which has implications for programming, service delivery, and policy.
Back to the cliff. From the study:
The finding that young adults and parents see services and supports as inadequate is not surprising, given the significant drop-off in services after high school. This study suggests that services that are currently available may be inadequate in part because they do not align with young adults’ and parents’ priorities and do not offer the kind of help they need to support the transition to adulthood. Overall, both parents and young adults made it clear that supports and services needed to be flexible enough to meet individual needs and be more comprehensive, continuous, and integrated in order to be most useful. However, few services and supports work this way, and it is a challenge for the field to address this need.