News and Knowledge

A study published in the journal Autism at the end of March asserts that federal funding for autism research has not followed recommendations made by the Interagency Autism Coordinating Committee (IACC). In 2017, the IACC in its advisory role recommended allocating more funding to research studies focusing on treatments/interventions, evidence-based services, and lifespan issues. Based on a review of research funding between 2017 and 2019, the study found that federal funding had primarily been allocated to biological research.

The IACC, which is made up of representatives of federal agencies that serve the autism community, autism researchers, and public members drawn from the autism community, provides recommendations to the U.S. Department of Health and Human Services on how to spend money on autism research and other initiatives as part of the IACC’s Strategic Plan. Typically, the IACC meets twice a year to hear from experts to discuss a variety of topics relative to autism. One of its roles is to make recommendations to the secretary of Health and Human Services as part of the Strategic Plan, which it updates annually.

Brittany Hand, Ph.D., the study’s senior author and assistant professor in Ohio State University’s School of Health & Rehabilitation Sciences. and her fellow researchers mined the databases of the three largest U.S. federal funders of autism research: National Institutes of Health, Department of Education, and Centers for Disease Control and Prevention. From 2017 to 2019, they found 342 federally funded grants totaling just over $159 million for autism research. As noted in their study, between 2017 and 2019, the largest amount of federal funding went to the biology of autism (32.59%) and treatments and interventions for autism (22.87%) while only 5.02% was awarded to research on services and only 2.52% for lifespan issues, both identified as high funding priorities by the IACC in 2017.

“This research is consistent with other studies that show that most autism research funding is dedicated to biological research,” said the study’s senior author, Brittany Hand, Ph.D., assistant professor in Ohio State University’s School of Health & Rehabilitation Sciences. Based on the research team’s analysis, Hand reported in an Ohio State University press release that the “…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.”

That assertion led OAR to reach out directly to the IACC regarding the question raised and the IACC’s process for making recommendations. In a conversation Mike Maloney, OAR executive director, had with Dr. Susan Daniels, director of the National Institute of Mental Health’s Office of Autism Research Coordination, which manages the IACC, Dr. Daniels affirmed that:

• The recommendations related to research are advisory and made in the context of the budgeting section of the IACC Strategic Plan, which is reviewed and updated annually.
• The recommendations, which represent the consensus of the IACC, are made in part by representatives of the member agencies. In other words, there is an element of built-in agency buy-in to begin with.
• The timeframe from IACC recommendation to implementation to funding to completed research (two-year grants) is four to five years.
• Based on the NIH’s 2017-2018 research portfolio released in May 2021, there is clear evidence of attention to the lifespan issues the study found lacking.

Status of the IACC

Some in the autism community have questioned the status of the IACC since it has not met since July 2019, as noted in a March article on the DisabilityScoop website, and the public members’ terms expired in September 2019. Between the pandemic and the more recent change in administrations, the process of appointing new members has been delayed. According to Dr. Daniels, the IACC is working to get new members appointed, and she anticipates that the IACC will meet again this summer. As before, it will include public members and the opportunity for public comment as well.

Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.