The Interagency Autism Coordinating Committee, which has advised US health secretaries on federal autism efforts for 25 years, completed a 336-page strategic research plan that has drawn criticism from autism scientists and advocacy organizations. The committee was substantially restructured by health secretary Robert F Kennedy Jr in January, with several newly appointed members having previously promoted controversial and scientifically disputed autism treatments.
The plan proposes nearly doubling annual federal spending on autism services to $760m, with $270m allocated specifically for research. Among its research priorities is $15m directed toward studies of folate biology and leucovorin, a vitamin B9 derivative. This allocation has raised particular concern among scientists who note there is limited evidence supporting the therapy’s broad efficacy for autism, though the FDA approved leucovorin in March for the rare condition cerebral folate deficiency. A committee member, Dr Dan Rossignol, operates a medical practice that provides leucovorin to autistic patients and holds equity in a company developing folinic acid therapies, raising questions about potential conflicts of interest.
Autism advocacy groups have expressed alarm about several plan components. Proposed “supported-living models” described as “farmstead or campus-based communities” have raised concerns about potential institutional confinement, while calls for “rigorous testing” of fecal microbiota transplantation represent experimental procedures without established safety or efficacy profiles. Helen Tager-Flusberg, an emeritus professor at Boston University and founder of the Coalition of Autism Scientists, characterized much of the plan as “fringe science that is absolutely not ready for prime time.”
The Department of Health and Human Services stated that autism affects one in 31 children, with more than a quarter having profound support needs. While some aspects of the plan, including lifetime support services and focus on individuals with high support needs, have received cautious welcome from scientific bodies, the proposal’s direction represents a significant shift from established research priorities. If adopted by the Trump administration, the plan could substantially influence federal autism research direction for years ahead.
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