Members of the Interagency Autism Coordinating Committee meet in 2014 in Bethesda, Md. (Isaac Kohane / Flickr)
A panel of federal officials, lawyers, and other stakeholders is set to set the government’s priorities for autism, but new research suggests that it isn’t.
The longtime Interagency Autism Coordinating Committee is tasked with advising the Secretary for Health and Human Services and coordinating federal activities related to developmental disorders. The panel regularly updates a strategic plan outlining what types of autism research should be funded.
As of 2017, the committee’s plan was that research into treatments and interventions, evidence-based services, and longevity issues should be given more priority. Traditionally, all areas received limited support. However, a recent study published in Autism magazine shows the spending is not up to par.
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The researchers examined autism research grants from the National Institutes of Health, the U.S. Department of Education, and the Centers for Disease Control and Prevention, the three largest state donors of this effort, between 2017 and 2019. They found 342 grants valued at more than $ 159 million.
Most of the funding – nearly a third – went to biological research, while less than 10% went to understanding services and lifespan issues, the study found.
“The IACC’s recommendations made no significant difference in the types of autism research grants that actually receive federal funding in the US,” said Brittany Hand, assistant professor at Ohio State University’s School of Health and Rehabilitation Sciences a senior author on the study. “If the IACC’s resource allocation advice is ultimately ignored by the federal funding agencies, what is the point if this committee continues to make budgetary recommendations?”
The results come as the status of the IACC remains in flux. The committee last met in July 2019 before all members’ terms expired in September of that year. No new members have yet been appointed.
Susan Daniels, director of the Office of Autism Research Coordination of the National Institute of Mental Health, which administers the IACC, said last September that her office was working to set up a new committee, but said earlier this year the process was progressing by switching to delayed got a new administration.
Now Daniels says that a new committee should be set up soon.
“The final stages of the appointment process are underway and we expect the first meeting of the new IACC to take place in the summer of 2021,” she told Disability Scoop. “COVID-19 and its impact on autistic people, their families and the autism community will be a top priority for the new committee.”
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