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.
For children with autism, there are several competing forces at play that could potentially impact their futures. In an effort to help these children lead the most productive and successful lives, legislation mandating coverage of applied behavior analysis (ABA)—the current gold standard of treatment for autism—is making this valuable treatment accessible to all.
ABA is a systematic approach to teaching new skills such as communication, social interaction, and pre-academic and daily life skills, and reducing behaviors that may interfere with learning or present danger, using behavioral principles such as positive reinforcement. But the rapid explosion in demand for ABA and infusion of private equity into the industry raises concerns about the limited number of providers and the quality of services they deliver. In 2021, more than 50 private-equity firms held or previously held a majority stake in an autism service platform. And there are questions about how to transition from today's fee-for-service model to one focusing on patient-centered care, which is key to making quality a top priority, even in the face of economic pressures....
Getting lost in the fray is how providers can ensure patients achieve the best clinical outcomes. By changing the focus, the industry has the opportunity to set the stage for value-based care arrangements. This approach is one in which funding is based on outcome rather than the traditional fee-for-service model, which is the current payment structure for ABA with most health plans. However, even if the industry can agree on changing the focus, a critical component is still missing.
The current void relates to generally accepted methods of measuring or predicting outcomes for individuals with autism receiving ABA treatment and standards for determining treatment dosages.
