Uncertainty is a major theme of The Politics of Autism. Here is how I start chapter 3:
If we can land a man on the moon, why can’t we cure autism? Frustrated parents may ask that question, remembering that when John F. Kennedy committed the United States to go to the moon, NASA scientists and engineers figured out how to get there. Ever since Neil Armstrong stepped off the lunar module in 1969, politicians have held up the Apollo project as a model for solving all kinds of problems. But autism is not rocket science. Contrary to the usual meaning of that expression, I hardly suggest that autism science is simple; rather, it is more puzzling than rocket science.
When the moon program was getting under way, there was consensus about the fundamental terms and facts. Although the engineering details were challenging, the basic math and physics behind the mission dated back to Isaac Newton. Autism is different. As we have already seen, it is a contested concept with many uncertainties. Just picture an Apollo program in which experts saw different kinds of moons in different parts of the sky and were not quite sure about the laws of motion.
Research on outcomes, especially among adults, is shockingly sparse.
Largely through the efforts of autistic self-advocates, families of autistic youth transitioning to adulthood, researchers, and concerned caregivers and policy makers, there is increasing recognition that autistic adults face unique challenges and that the supports and services available to them are often inadequate or inaccessible.1 Across the globe, we are hearing about the urgent need to do a better job of reducing barriers to the full social, economic, and political participation of autistic people in society.2–4 As government employees who oversee programs that provide research grant funding, we want to highlight the importance of rigorously designed research that evaluates the impact of interventions and policies on the people they are meant to help. The availability of valid reliable tools to evaluate the impact of interventions and policies is absolutely critical but is often overlooked. ...
We describe three U.S. federal funding programs here that can support the development of outcome measures, but it is important to note that there are other research funding sources within the United States and internationally12–15 that could support such efforts.
- The Autism Research Program (ARP), under the Department of Defense CDMRP, is focused on supporting research that will lead to better outcomes to ultimately improve the lives of individuals on the autism spectrum.11 To reach this goal, the ARP developed a four-faceted strategy11 that includes funding high-impact research to address major knowledge gaps in autism research, invest in projects with potential for immediate implementation, invest in projects with potential for broad dissemination, and focus on novel ideas that fulfill the needs of the autism community and maintain high scientific rigor. One of the program's strategic goals is to fund research centered on addressing the needs of autistic people into adulthood. Since 2013 the ARP has invested in research aimed at determining key factors of success in the transition to independence and developing interventions that promote successful transition. The ARP will continue to make investments in this area of research, as addressing the needs of autistic individuals into adulthood remains one of the four strategic goals of the program.
- The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) funds applied research and development, including autism-related research, that address the following mission: “To generate new knowledge and promote its effective use to maximize the full inclusion and integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities of all ages.”16 NIDILRR funds research and development that supports full inclusion and integration into community and society in three outcome domains: health and function, community living and participation, and employment. NIDILRR supports measurement development in all of these domains. NIDILRR is housed in the Administration for Community Living, U.S. Department of Health and Human Services.
- The National Institute of Mental Health (NIMH) supports a broad range of research on autism, including studies of the brain and other biological aspects of autism, research to refine and improve diagnostic tools and outcome measures, and developing effective treatment and services tailored to important life stages of people on the autism spectrum. Areas of emphasis include improving access to care and supports and optimizing capacity for independent functioning and community integration for children, transition-age youth, and adults on the autism spectrum. With attention to differences across communities, care settings, and systems, intervention strategies must be designed for rapid adoption and implementation on a broad scale. NIMH is a part of the National Institutes of Health, U.S. Department of Health and Human Services.
