In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.
RFK Jr. has stacked it with his own type of people.
Allison Parshall at Scientific American:
A “shadow committee” of autism researchers and science advocates met in the nation’s capital for the first time on Thursday.
Called the Independent Autism Coordinating Committee (I-ACC), the group rapidly came together as a response to Secretary of Health and Human Services Robert F. Kennedy, Jr., overhauling of the federal government’s Interagency Autism Coordinating Committee (IACC), which provides guidance on autism research. Kennedy’s 21 new appointees to the committee include several who have promoted a disproved connection between vaccines and autism and who have promoted non-evidence-based and potentially dangerous therapies for the condition.
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The federal autism committee now has a “striking absence of scientific expertise,” said Craig Snyder, policy lead at the Autism Science Foundation, during the rival group’s meeting on Thursday. “It disproportionately represents the small subset of families who believe, contrary to scientific consensus, that vaccines cause autism while excluding the overwhelming majority of autistic individuals, families and advocates who support evidence-based science.”
The independent group plans to review autism science and recommend research priorities to improve the lives of autistic people—something that many of its members worry the federal committee will no longer prioritize.
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.In 2019 the federal committee began to include a larger number of autistic people as members. Now the federal group has less representation from autistic people than before, and the independent group has only one autistic member. Neither group includes representatives of autism self-advocacy organizations.
“At present autistic people are losing ground on political representation,” says Ari Ne’eman, co-founder of the Autistic Self Advocacy Network and a health policy researcher at Harvard University. “I don’t think either [group] can be meaningfully said to represent our community at this moment.”
