A U.S. advisory panel on autism has recommended nearly doubling federal funding for research and services to better support individuals with autism and their families. The Interagency Autism Coordinating Committee (IACC) adopted a new strategic plan on August 27 calling for an increase in annual investment from approximately $390 million to $760 million. The funding would be allocated to agencies including the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to address a broad range of medical, social, and supportive needs.
Appointed this year by Health and Human Services Secretary Robert F. Kennedy Jr., the IACC serves as a nonbinding advisory body to guide federal autism priorities. The committee’s plan emphasizes two main goals: improving medical care and research for people with autism, and providing comprehensive support across the lifespan, particularly for those with complex needs. The panel noted that individuals with profound autism, who require the highest levels of support, have been underrepresented in past research and planning efforts.
“Individuals with profound autism, or the highest support needs, were relatively underrepresented in previous strategic plans and notably underrepresented in autism research,” said Dr. Sylvia Fogel, IACC chair and Harvard Medical School instructor, who is also a parent of an adult with profound autism. She described the expanded focus as necessary to address urgent challenges faced by this segment of the autism community.
Some federal agency members of the committee abstained from voting on the plan, citing the need for further review and consideration of public comments. Among the parents and advocates who form part of the panel, many care for children with profound autism and supported the call for increased investment in research and services.
The strategic plan calls for accelerated efforts to improve assessment and treatment of co-occurring medical issues commonly experienced by autistic individuals, such as gastrointestinal disorders, sleep problems, seizures, speech and motor impairments, and mental health conditions. It also highlights the need for research into neurodevelopmental regression, a condition affecting an estimated 30% of autistic children that involves the loss of previously acquired skills.
“Families need research that tells clinicians what to look for, what to test, and what may be treatable,” said committee member Jennifer Philips, a parent of a profoundly autistic child who experienced regression at age two.
The prevalence of autism has risen notably over the past two decades, with the CDC reporting an estimated rate of 1 in 31 children aged 8 diagnosed in 2022, up from 1 in 150 in 2000. Improved screening and broader diagnostic criteria contribute to this increase. About 26.7% of autistic children are estimated to have profound autism. However, data on the number of autistic adults remain scarce. The new plan calls for the federal government to begin estimating the adult autism population for the first time.
Kennedy, whose past advocacy included promoting disproven links between vaccines and autism, is continuing to prioritize autism research at the Department of Health and Human Services, including a $50 million NIH project and ongoing studies examining autism broadly. The current strategic plan does not address vaccines or any connection to autism.