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Tuesday, September 4, 2012

Outcomes Research

The big question for young people on the spectrum -- as well as their families -- is:  "What happens in 10, 20, 30 years?"  Unfortunately, the literature on outcomes, especially long-term outcomes, is sparse. The journal Autism has an article by Natalie A Henninger and Julie Lounds Taylor, "Outcomes in Adults with Autism Spectrum Disorders: a Historical Perspective."  The abstract:
In this review, we examine the ways in which researchers have defined successful adult outcomes for individuals with autism spectrum disorders (ASDs) from the first systematic follow-up reports to the present day. The earliest outcome studies used vague and unreliable outcome criteria, and institutionalization was a common marker of poor outcomes. In the past decade, researchers have begun to standardize the measurement of adult outcomes with specific criteria based on friendships, employment, and living arrangements. Although nearly all of these studies have agreed that the majority of adults with ASD have poor outcomes, evolving concepts of what it means to be an adult could have an impact on outcomes measured. For example, some researchers have suggested that taking into account the person-environment fit could reveal a more optimistic picture of outcomes for these adults. Suggestions for future research are discussed.