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 Drexel University, Frank Otto reports:
A quarter of adults with autism who use developmental disability services are not working or participating in other structured activities during the day, with only 14 percent holding a paying job in the community, according to the A.J. Drexel Autism Institute.
Since 2015, the Institute has produced a National Autism Indicators Report. The past two reports showed that adults with autism have difficulty transitioning into jobs. This year’s version, “National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood,” delved into the lives and needs of adults with autism who use developmental disability services — an estimated 111,000 nationwide.
“Billions are spent each year on services for people on the autism spectrum,” said Paul Shattuck, PhD, associate professor in Drexel’s Dornsife School of Public Health and director of the Autism Institute’s Life Course Outcomes program, which produces the annual reports. “Relatively little is spent trying to understand the types and amount of services people need, as well as the services they actually end up getting or the outcomes of them. This latest National Autism Indicators Report continues our tradition of publishing dashboard-like statistics about how life is turning out across the course of these people’s lives.” [emphasis added]
For the third year of the report, Anne Roux, a research scientist on Shattuck’s team, led a group that looked at data from 3,500 adults who used developmental disability services and took the 2014-15 National Core Indicators Adult Consumer Survey. This is a survey used by some states to monitor the effectiveness of their services.
In addition to the distressing information on lack of work and activities for most recipients the research team found that 25 percent did not believe they were getting the full services they needed.
“This dovetails with our team’s earlier reports on the ‘services cliff’ that transition-age youth encounter when they leave special education but have difficulty accessing services they may need to become employed, continue their education, or live more independently,” Roux said.