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NIH: Researching the Needs of Autistic Adults Must No Longer Take a Backseat
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Sponsor: The Autism Site
Funders of autism research need to stop treating the needs of autistic adults as an afterthought.
Tell the National Institutes of Health (NIH), our biggest funder of autism research, to provide more funding into researching lifespan issues.
Research on lifespan issues — things that concern adults on the spectrum — has historically been severely understudied. According to the Interagency Autism Coordinating Committee’s 2013 report on autism research, only one percent of research funding was granted to lifespan issues, [1] making it the most neglected area of autism research.
The priority of most funders? Looking into the biological mechanisms behind autism (32 percent in 2013). While this is an important area of study, it is not what the autism community needs most.
According to a poll on The Autism Site Blog that consisted of 473 votes, most responders (28 percent) thought research on lifespan issues needed to take priority. [2] Biological factors came in dead last, with just under 10 percent of voters favoring this area of research. Many other advocates outside of this poll also believe that we need to focus more on lifespan issues in our autism research ventures. [3]
This is not surprising. Society is facing a wave of autistic adults who are aging out of the system, but we don’t have the information we need to help them survive and thrive. No wonder one of the biggest fears of parents centers around the future: “What will happen to my child when I am gone?” they wonder and hardly dare to think about.
This needs to change. The National Institutes of Health (NIH) has historically been the United States’ biggest funder of autism research; as such, they are in the best position to help us sort out this issue. If they truly care about helping autistics, they need to step up to the plate and prioritize what the autism community itself really needs.