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 Autism Speaks, Amal El-Nageh describes an effort to assess the quality of life of autistic adults.
JFCS of Greater Philadelphia is excited to share the results of our recent project, the development ofa quality of life assessment for adults with autism spectrum disorder (QLAA). This initiative was made possible through the generous funding provided by Autism Speaks’ Family Services Community Grant.
As many of us know, needed services and supports for adults with autism spectrum disorder (ASD) are lacking, and funding to develop these programs is limited. However, most service providers express a commitment to enriching the quality of life of those they serve. How do we decide where to invest limited funding? As service providers, how can we determine if our interventions are making an impact on individuals’ quality of life?
This project began when a professional team that works with people living with disabilities at JFCS sought an instrument to measure quality of life of adults diagnosed with ASD. After completing a thorough literature review, we were unable to locate an appropriate tool. Recognizing the need for this, we decided to take the initiative to develop the QLAA: Quality of Life Assessment for Adults diagnosed with ASD.
Implementation of a QoL instrument allows care managers and care coordinators to capture a holistic overview that includes the client’s perspective on his/her quality of life, resulting in comprehensive service to the clients that comprises the most appropriate combination of services and resources available.