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.
In this study, we assess the quality of intervention research that focuses on autistic youth who are 14–22 years old. We found 193 different studies on this topic, and carefully reviewed them. Most of these studies tested strategies that were behavioral. This means that they used procedures like prompting and rewards to change participants’ behavior. We found that the majority of studies had problems that make it hard to determine whether or not the intervention worked. The problems related to how researchers designed their studies, and how they measured the study outcomes. We also found that researchers rarely tried to find out if the strategies they studied had unintended negative effects for participants. Because of these issues, we make suggestions for how researchers might design better studies that will let people know how well the strategies worked.
