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.
Much of education research is short-term. This is understandable, given the extraordinary cost of a highly intensive intervention or program and the long-term follow up of such a program. Recently, however, Tyler Watts, Drew Bailey, and Chen Li have suggested, in a new paper in the Journal of Research on Educational Effectiveness, that education research should aim further than short-term evaluations of interventions, and the authors lay out how such longitudinal follow-ups of carefully implemented interventions might be incentivized broadly in education research.
Though ideally one would first conduct a randomized controlled trial and follow up with groups of both treated and untreated individuals well into adulthood, this ideal is not possible with special education due to the specific parameters outlined in IDEA. In "Exploring the links between receiving special education services and adulthood outcomes,” a new paper in the journal Frontiers in Education: Special Educational Needs, Tomoe Kanaya, Brenda Miranda, and I linked up publicly available large-scale datasets which allowed us to use a one-to-one propensity score matching technique alongside a unique research design. This helped us figure out how students who qualified for IDEA at any point—compared to students who did not—fared on long-term outcomes well into adulthood ranging across areas spanning educational attainment, economic self-sufficiency, social engagement, and health.
Overall, we discovered that across the years studied, those who were identified under IDEA in some capacity did not significantly differ from those who were not identified under IDEA. In other words, special education services did not appear to be strongly related to a wide range of outcomes in adulthood. One exception is that we found that IDEA did matter for Hispanic students on some outcomes.The paper contains an appropriate caveat:
Furthermore, it is important to note that the data from the current study represent the special education practices and policies that were relevant for individuals born between 1980 and 1994. It is possible that subsequent modifications to IDEA, including stronger support for preschool special education services, the introduction of the autism category in 1990, and changes in learning disability diagnosis criteria in 2004 (34 C.F.R. §300), among other evolving changes, have altered which individuals qualify for services and how services are implemented. Future research could address these possibilities. Despite these limitations, the current study is a reflection of the current life circumstances of today's adults, and any examination of IDEA is a time-sensitive reflection of an evolving and dynamic set of services.