After U.S. Secretary of Health and Human Services Robert F. Kennedy Jr. remade a key federal autism panel, some of the nation’s most influential researchers and advocates are creating a competing one.
Earlier this year, Kennedy announced a new slate of members for the Interagency Autism Coordinating Committee, or IACC, a congressionally mandated panel comprised of government officials and members of the autism community that has set the country’s autism research agenda for the past two decades. None of the 21 members selected had ever previously served on the committee and many are known for promoting the discredited idea that autism is linked to vaccines or advocating for treatments that lack evidence.
The new group known as the Independent Autism Coordinating Committee, or I-ACC, is being formed as a direct rebuke of the reshaped government panel and includes several former members of the federal committee, according to the Autism Science Foundation and the Coalition of Autism Scientists — a group of more than 300 researchers in the field — which are behind the effort.
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The I-ACC will be modeled after the federal IACC, bringing together scientific experts and stakeholders in the community to create a strategic plan for autism research to guide non-governmental research funders. The new committee will also report annually on key advances in the field. Meetings will be held on the same schedule as the federal IACC so that the new group can respond quickly to any recommendations that they say are not backed by science.
“The newly constituted Kennedy-appointed IACC represents a complete and unprecedented overhaul, with no continuity from prior committees and a striking absence of scientific expertise,” said Alison Singer, president of the Autism Science Foundation, who is a member of the new I-ACC and a former member of the federal panel. “It disproportionately represents a tiny subset of families who believe vaccines cause autism, while excluding the overwhelming majority of advocates and experienced autism researchers who support evidence-based science. The new I-ACC will ensure science, not misinformation, guides autism research.”
The 12-member I-ACC includes Joshua Gordon and Tom Insel, who are both former directors of the National Institute of Mental Health and past chairs of the federal IACC. In addition, there are representatives of the American Academy of Pediatrics, the Autism Society of America and the American Academy of Child and Adolescent Psychiatry as well as a former congressman, autism researchers, a parent and a self-advocate.
The Autism Science Foundation will be the administrative secretariat for the new independent committee.
“Autistic people and their families deserve answers about the best types of care for autistic people and the best ways to prevent the disabilities that autism can cause. We need a national research agenda that supports this goal,” said David Mandell, a professor of psychiatry at the University of Pennsylvania who is a member of the Coalition of Autism Scientists’ executive committee and the new I-ACC as well as a former member of the federal IACC. “Kennedy’s reconstituted IACC is clearly designed to promote an agenda antithetical to evidence-based policy and practice. We hope that the I-ACC will offer an antidote.”
The first meeting of the newly formed I-ACC will be March 19 at the National Press Club in Washington. The federal IACC is scheduled to meet that same day as well at the National Institutes of Health in Bethesda, Md. There are opportunities to submit public comment to both groups.
