One point that autistic people like myself have been hammering since the rise of the autism rights movement is that charities devoted to the condition focus on the wrong thing. There's a huge emphasis on preventing or even "curing" autism, even though we're nowhere near being able to do either, and many autistic people resent the idea that their psychological differences are in need of "curing."
And a new report finds that this problem isn't going away. In fact, it's getting worse.
The report found that autism funding in 2011 and 2012 was heavily tilted toward researching the underlying biology and risk factors contributing to autism, and away from ways to help actual autistic people.
A mere 7 percent went to researching services for autistic people, and 1 percent to researching the needs of autistic adults:
The report was issued by the Office of Autism Research Coordination (OARC) and the Interagency Autism Coordinating Committee (IACC), a branch of the federal Department of Health and Human Services (HHS) that coordinates federal autism policy. They included not just funding from federal agencies (the National Institutes of Health being the biggest, but the CDC, EPA, National Science Foundation, and more as well) but from private organizations like the Simons Foundation and Autism Speaks.
The government and foundations spent about $300 million on autism research in 2011, and $332 million in 2012, with about 78 percent coming from the federal government and the rest from private foundations. Jus 30 percent — $100 million — went to biology in 2012, and another 17 percent to risk factors.
The trendlines are concerning as well. While research into the biology of autism has been shooting up…
…services research remains far behind:
It's hard to know what's worse: If services research suddenly jumped in 2010 only to fall far and quickly in 2011 and 2012 (as the original data suggests) or if it's always been considerably below other priorities (as adjusted data, correcting for exaggerated 2010 figures, shows).
The original data is screwy because OARC started counting non-research projects, like teacher training and professional education, in the research analysis. Without that creative accounting, services research spending was always low.
The relatively high funding of "treatment" research is encouraging until you dig deeper. A third of treatment funding went to "development of animal models that can be used for understanding molecular and neural pathways that can be targeted by interventions"; this is much closer to core biological research than research into services. Only 10 percent of treatment funding went to evaluating the effectiveness of community-based services in assisting autistic people.
If anything, the numbers are worse if you just limit yourself to NIH. As the Autistic Self-Advocacy Network, a leading autism rights group, notes, "In 2012, services-research was 1.82% of the NIH investment while research on adults reached a historic low of 0.9% – less than one percent."
In a statement, Ari Ne'eman, president of the Autistic Self Advocacy Network, declared that the numbers "show a shocking lack of interest in aligning scientific investment in autism research to the priorities of the most important stakeholders: autistic people ourselves."
Of course, there's nothing wrong with learning more about the biology of autism, and there's nothing wrong with trying to figure out how to treat or reverse its more debilitating effects (like self-harm) and co-morbid conditions (autists are at elevated risk of epilepsy, for example). In a perfect world, there'd be plenty of funding for each of these areas.
But given the government and foundations' limited budgets, many autism advocates have argued that this funding would be better spent researching how to help autistic people alive now. That could bring more immediate, tangible benefits to people on the autism spectrum.