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.
An estimated 5.4 million autistic adults ages 18–65 years lived in the US in 2020 (https://www.cdc.gov/ncbddd/autism/features/adults-living-with-autism-spectrum-disorder.html.) As described above, given that current unemployment rate estimates are based on Department of Education reports of 864,000 children who received services under the autism code (https://nces.ed.gov/fastfacts/display.asp?id=64), 111,400 autistic adults nationwide who received services in the DD system for 2014 (Roux et al., 2017), plus the 1400 persons employed by Neurodiversity@Work companies – a total of 976,800 individuals – most of what we know is based on approximately 18% of US autistic adults of working age. To understand the true and comprehensive autism employment picture, we need to “find” the remaining 82% and better understand their employment status. This may further illuminate us about what does (if they are happily employed) and does not work (if they are sitting at home on their couches), and what might lie between these (e.g., otherwise developing skills and find purpose through internships or volunteer work).
We then need to understand their characteristics with respect to service and support needs, ages/developmental levels, cognitive strengths and challenges, autism symptoms, vocational aptitudes, prior work experience, and work preferences. Research is then needed that illuminates how these factors are associated with successes and challenges in diverse jobs. This holds the potential to help us to better identify, adapt, and carve different jobs to optimize the work success of autistic persons. Industrial Organizational Psychologists might be good research partners in such targeted “precision” vocational planning efforts. Randomized clinical trials and other research that continues to advance what is known about the efficacy of interventions and services favored by autistic individuals and their families, as well as research about interventions and services that help employers and co-workeers to understand and work well with autistic persons.
As outlined above, there have been multiple small trials of employment interventions to help autistic adults, however, they either are administered in clinic or school settings which have highly trained staffs and clear referral streams [e.g., (Oswald et al., 2018; Wehman et al., 2014; Wehman et al., 2017)], exclude individuals with mental health issues, rely on lengthy training without the promise of a job, and/or do not incorporate consumer or other stakeholder perspectives in job design, placement, and follow-on support. Furthermore, there is not a clear pipeline of teen interventions that prepare autistic individuals for adult life including employment. Finally, although there have been promising adjuvants that can be used in employment, they have not been well integrated with existing interventions. In sum, the autism field still lacks a scalable, stakeholder-centered, and empirically-validated supported employment model that can serve the wide range of autistic adults and even pre-adults. To date, there remain very few well-validated interventions and services to train employers and co-workers, although some resources exist (e.g. https://www.ocali.org/project/employee_with_asd).