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.
Mojgan Gitimoghaddam, Natalia Chichkine, Laura McArthur, Sarabjit S. Sangha & Vivien Symington have an article at Perspectives on Behavior Science titled "Applied Behavior Analysis in Children and Youth with Autism Spectrum Disorders: A Scoping Review." The abstract:
This manuscript provides a comprehensive overview of the impact of applied behavior analysis (ABA) on children and youth with autism spectrum disorders (ASD). Seven online databases and identified systematic reviews were searched for published, peer-reviewed, English-language studies examining the impact of ABA on health outcomes. Measured outcomes were classified into eight categories: cognitive, language, social/communication, problem behavior, adaptive behavior, emotional, autism symptoms, and quality of life (QoL) outcomes. Improvements were observed across seven of the eight outcome measures. There were no included studies that measured subject QoL. Moreover, of 770 included study records, only 32 (4%) assessed ABA impact, had a comparison to a control or other intervention, and did not rely on mastery of specific skills to mark improvement. Results reinforce the need for large-scale prospective studies that compare ABA with other non-ABA interventions and include measurements of subject QoL to provide policy makers with valuable information on the impacts of ABA and other existing and emerging interventions.
From the article:
Most of the current literature surrounding ABA-based interventions lacks investigations into the QoL of children with ASD and instead focuses on aberrant behaviors (Reichow et al., 2018; Whitehouse et al., 2020). A recent meta-analysis found that, upon analyzing five articles of higher scientific credence, none conducted investigations into the changes with respect to QoL for the children or parents (Reichow et al., 2018). The present scoping review likewise found no occurrences of subject QoL measures in the sample analyzed. Overall changes in QoL for children living with ASD is of the utmost importance, as QoL is “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (WHO, 1997, p. 1). The continued lack of research into long-term effectiveness of ABA treatments is an ongoing concern and should be a focus of future research to help measure QoL (Whitehouse et al., 2020) and also to investigate any possible adverse effects (Rodgers et al., 2020). For example, recent literature investigating adults with ASD who participated in ABA treatments when they were young has shown increases in incidences of posttraumatic stress disorder (PTSD); this is an emerging field of research in adults with ASD and should be further investigated through long-term studies (Kupferstein, 2018).