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 the Journal of Autism and Developmental Disorders, Katherine Pye, Hannah Jackson, Teresa Iacono & Alan Shiell have an article titled "Economic Evaluation of Early Interventions for Autistic Children: A Scoping Review." The abstract:
Many autistic children access some form of early intervention, but little is known about the value for money of different programs. We completed a scoping review of full economic evaluations of early interventions for autistic children and/or their families. We identified nine studies and reviewed their methods and quality. Most studies involved behavioral interventions. Two were trial-based, and the others used various modelling methods. Clinical measures were often used to infer dependency levels and quality-adjusted life-years. No family-based or negative outcomes were included. Authors acknowledged uncertain treatment effects. We conclude that economic evaluations in this field are sparse, methods vary, and quality is sometimes poor. Economic research is needed alongside longer-term clinical trials, and outcome measurement in this population requires further exploration.
From the article:
The impacts of autism in early childhood lie well beyond the scope of one sector of society (Lavelle et al., 2019). Several authors noted that costs and outcomes are borne by the family unit, healthcare payers, education, social care–and society as a whole (Rodgers et al., 2020; Williamson et al., 2020). This was reflected in the breadth of perspectives taken in the included analyses. Notably, in at least one study (Williamson et al., 2020), cost-effectiveness findings differed according to the perspective that was adopted. Such a difference could determine who bears the costs relating to a program, including whether or not it is publicly funded. Perspective therefore appears important in this field, and researchers should continue to adopt more than one perspective when completing economic analyses.
Behavioral interventions were by far the most researched programs in this review. This finding is unsurprising in light of recent reviews of effectiveness literature (Trembath et al., 2022). Behavioral interventions have been implemented and published for half a century, and their grounding in data-driven methods is well-suited to empirical research. Other (non-behavioral) approaches have some support in the autistic community but lag well behind behavioral programs in terms of academic evidence, and they have rarely been included in economic research to date. Unfortunately, because economic evaluations have often (necessarily) been performed using the data available, they have been limited to behavioral interventions and narrow child outcomes – and not necessarily the neurodiversity affirming programs or outcomes that might be preferred by some members of the autistic community.
