In The Politics of Autism, 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.Autism Speaks reports on comments by Dr. Paul Shattuck at IMFAR:
“There have been many calls to ‘move the needle’ on adult outcomes,” he said. “But we still need to build the gauges to see if adult outcomes are truly improving over time.”
By what few measures are available, he said, it appears that, overall, young adults on the autism spectrum are doing poorly despite historic expenditures into research and interventions.
By way of example, Dr. Shattuck noted the “National Autism Indicators Report” that his team released earlier this month. (Autism Speaks Vice President of Adult Services Leslie Long served on the report’s advisory panel.)
The report found that nearly 18,000 people with autism used state-funded vocational rehabilitation programs in 2014, more than double the number five years earlier. But only 60 percent of these people left the program with a job. And 80 percent of these worked just part-time at a median weekly rate of $160, putting them well below the poverty level.
In part, he proposed, we’re doing so poorly in supporting the transition to adulthood because such a thin sliver of autism research funding is going toward lifespan issues such as developing effective supports to improve success in employment and community integration.
The recent “Portfolio Analysis Report,” by the Interagency Autism Coordinating Committee (IACC) put that sliver at just 1 percent of total autism research expenditures in 2012, Dr. Shattuck noted. (See graphic below.)
“I don’t have all the answers,” he said. “But the fact that there are cries to move the needle on adult outcomes in the context of tiny outlays in support of adult research reminds me of a quote attributed to Henry Ford: ‘If you always do what you’ve always done, you’ll always get what you’ve always got.’ The only way we can move the needle on outcomes is to first move the needle on funding for a research agenda that prioritizes services and life course questions.”
Adding to the urgency, Dr. Shattuck said, the Workforce Innovation and Opportunity Act, passed last year, requires all states to dedicate at least 15 percent of their vocational rehabilitation budgets to programs for transition-age youth (teens and young adults).
“So here we are embarking on a huge policy experiment, with state governments spending huge amounts of money, but with little guidance and no plan for measuring whether any of this effort is having the desired impact of improving to lives,” he warned.