A panel of federal officials, advocates and other stakeholders is supposed to set the government’s autism priorities, but new research suggests that’s not what’s happening.

The long-running Interagency Autism Coordinating Committee is charged with advising the secretary of health and human services and coordinating federal activities related to the developmental disability. The panel regularly updates a strategic plan outlining what types of autism research should be funded.

As of 2017, the committee’s plan indicated that more priority should go toward research looking at treatments and interventions, evidence-based services and lifespan issues, all areas that traditionally received limited support. But, a study published recently in the journal Autism indicates that spending is not following suit.

Researchers looked at grants for autism research between 2017 and 2019 from the National Institutes of Health, the U.S. Department of Education and the Centers for Disease Control and Prevention, the three largest government funders of such efforts. They found 342 grants worth more than $159 million.

The largest portion of the funds — nearly a third — was directed toward biological research while less than 10% went to understanding services and lifespan issues, the study found.

“The IACC’s recommendations haven’t made a substantive difference with regard to the types of autism research grants that actually receive federal funding in the United States,” said Brittany Hand, an assistant professor at The Ohio State University’s School of Health and Rehabilitation Sciences and a senior author of the study. “If the IACC’s advice on how resources should be allocated is ultimately ignored by federal funding agencies, what is the point of continuing to have this committee make budget recommendations?”

The findings come as the status of the IACC remains in flux. The committee last met in July 2019 before all of the members’ terms expired in September of that year. To date, no new members have been appointed.

Susan Daniels, director of the National Institute of Mental Health’s Office of Autism Research Coordination, which manages the IACC, said last September that her office was working to seat a new committee, but earlier this year indicated that the process was delayed by the changeover to a new administration.

Now, Daniels says that a new committee should be seated soon.

“The final stages of the appointment process are underway and we anticipate holding the first meeting of the new IACC 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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