For the first time in over a year, a key panel tasked with helping to direct nearly $2 billion in federal autism funds was supposed to meet, but now the gathering has been abruptly called off and it’s unclear why.
The U.S. Department of Health and Human Services said that a meeting of the Interagency Autism Coordinating Committee, or IACC, that had been planned for March 19 would be canceled. The agency did not respond to questions about why.
“The IACC will not meet later this month. Further information will be shared as available,” said Andrew Nixon, a spokesman for the agency.
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Mandated under the Autism CARES Act, the IACC is designed to bring together government officials and members of the autism community to advise the secretary of health and human services and coordinate federal activities related to the developmental disability.
The meeting was expected to be the IACC’s first public gathering since January 2025.
The delay comes as the panel, which traditionally drew little attention, is now facing intense scrutiny. In January, Secretary of Health and Human Services Robert F. Kennedy Jr. announced a new slate of 21 members, including several known for promoting the discredited idea that autism is linked to vaccines or advocating for treatments that lack evidence. Kennedy declined to appoint anyone who had previously served on the committee and excluded representatives of prominent autism advocacy and research groups like Autism Speaks, the Autism Science Foundation and the Simons Foundation.
Alarmed by the shift, the Autism Science Foundation and the Coalition of Autism Scientists — a group of more than 300 researchers in the field — said last week that they would establish a competing panel dubbed the Independent Autism Coordinating Committee, or I-ACC. The new group, which includes many former members of the federal panel, said it would schedule its meetings to coincide with those of the government committee.
Alison Singer, president of the Autism Science Foundation and a member of the I-ACC, said the independent committee will proceed with its planned meeting on March 19.
“Our committee members have decades of scientific experience and are ready to get to work,” Singer said. “We don’t need more prep time. We are driven by a sense of urgency because this work can’t wait.”
Sylvia Fogel, a psychiatry instructor at Harvard Medical School and the parent of a child with profound autism who was selected to chair the federal IACC, said the group still intends to meet.
“Please know that we are actively working to reschedule the meeting and will share the new date as soon as possible,” Fogel posted on X. “I recognize the urgency of the issues facing the autism community, and I understand this delay may feel discouraging.”
Jackie Kancir, executive director of the National Council on Severe Autism, said many members of her group advocated for greater attention to the needs of those with profound autism when the Autism CARES Act was renewed in 2024. More recently, they submitted public comments to the IACC and were eager to see how the remade committee would address their concerns.
“Families — already holding the weight of safety nets that have systematically collapsed upon their shoulders — sacrificed and exerted great energy into advocating for improvements to the Autism CARES Act of 2024. Fifteen months later, they are still waiting for the first public meeting of IACC to hear how — or if — their efforts had a meaningful impact,” Kancir said. “The committee charged to direct nearly $2 billion in autism research funding must be expected to show up also, without delay.”
