\Focusing too intensely on early biological markers, early testing and early diagnosis is a symptom of America’s focus on what causes autism or puts people at risk for it. Two years ago, the Interagency Autism Coordinating Committee found that in 2018, 6% of all U.S. research dollars given toward autism research went to screening and diagnosis, 44% went to understanding the biology of the disability and another 19% went toward better understanding the risk factors. Another 13% was devoted to researching “treatments and interventions.”
After all that, only a meager 6% went to services for autistic people, and just 3% went to “lifespan issues” — even though autistic people are adults far longer than they are children and we should all support the idea of autistic people living long, happy lives.
Earlier diagnosis is not inherently bad, nor is a focus on biology inherently wrong. Those avenues of research can help find solutions to the impairments autistic people face.
But they are only the first step toward building a better world for autistic people. As much as neurotypical people tend to find autistic people’s tendency to be single-mindedly focused on a topic annoying, it is they who seem incredibly focused on the biology of autism and how to detect it early, rather than creating a system that supports autistic people throughout life. And here we are giving them plenty of hints that we have other priorities.
I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu