The Interagency Autism Coordinating Committee, a 25-year-old federal advisory body, has completed a 336-page strategic plan for autism research that has prompted significant criticism from the scientific and autism communities. The plan, which was formally adopted earlier this week following public consultation, proposes nearly doubling federal spending on autism services to $760m annually and allocating $270m specifically for research.
Autism researchers and advocacy groups have raised alarm about several elements of the roadmap, warning it prioritizes unproven therapies over evidence-based genetic research. A major point of contention involves $15m earmarked for studying folate biology, particularly leucovorin, a vitamin B9 derivative. Scientists note there is limited evidence supporting leucovorin’s effectiveness for autism beyond a very small patient population with cerebral folate deficiency, for which the FDA approved it in March. One IACC member, Dr. Dan Rossignol, operates a medical center that prescribes leucovorin to autistic patients and holds equity in a company developing folinic acid therapies, raising questions about potential conflicts of interest.
Health Secretary Kennedy restructured the IACC in January, replacing established experts with advisers who have previously promoted controversial autism treatments including chelation therapy and industrial bleach. The plan also proposes government testing of fecal microbiota transplantation and supported-living models described as “farmstead or campus-based communities,” which autism advocacy groups fear could resurrect institutional confinement practices. Helen Tager-Flusberg, an emeritus professor and founder of the Coalition of Autism Scientists, characterized much of the plan as “fringe science that is absolutely not ready for prime time.”
While some aspects of the roadmap, including its emphasis on lifetime support and focus on individuals with high support needs, have been welcomed, the overall direction concerns researchers who view it as potentially diverting resources from promising genetic research directions. The plan’s adoption could reshape federal autism research priorities for years to come if endorsed by the Trump administration.
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