By Robin Respaut
Aug 27 (Reuters) – A U.S. advisory committee on autism is set to propose that federal agencies nearly double investment in research and initiatives focusing on medical care, housing, aging, and other priorities to support people with the condition and their families.
Members of the Interagency Autism Coordinating Committee, a federal advisory panel appointed by Health Secretary Robert F. Kennedy Jr. this year, will meet on Thursday to discuss their new strategic plan to reshape federal priorities in autism.
The draft plan, made public on the IACC’s website last month, suggests boosting investment by the National Institutes of Health, U.S. Centers for Disease Control and Prevention, and other agencies to $747.4 million annually from $390.4 million to address a sweeping array of issues impacting people with autism and their families.
Current federal spending, relative to the economic burden of autism, is less than other diseases, such as Alzheimer’s and asthma, the draft plan says.
The IACC provides non-binding guidance to the federal government regarding autism-related priorities.
Kennedy, a longtime anti-vaccine activist before joining the Trump administration, for years pushed a link between vaccines and autism, which scientists say has been thoroughly refuted by studies examining millions of children over many years.
The committee’s draft strategic plan does not mention vaccines or studying a link to autism.
OVERARCHING PRIORITIES, FOCUS ON PROFOUND AUTISM
The detailed plan has two overarching priorities: urgently improving medical care and research for people with autism; and supporting autistic people across their lifespans, especially those with complex needs.
“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, chair of the IACC and a Harvard Medical School instructor. “We wrote the plan to correct that inequity.”
Kennedy, who has made autism a signature issue for the U.S. Department of Health and Human Services, has pursued new studies on autism through a $50 million NIH project. He has also commissioned studies reexamining autism and vaccines.
Kennedy has highlighted the plight of autistic individuals with the highest need for support throughout their lives. About one-third of the advisory board are parents of profoundly autistic children.
Fogel, who is the parent of an adult child with profound autism, said many of the plan’s priorities apply across the autism spectrum, including those with lesser support needs.
“There’s a significant portion of the autism community who are highly dependent on care and who are really struggling,” she said, describing their needs as urgent and significant.
The proposed plan calls for agencies to move quickly to improve assessment and treatment of gastrointestinal disorders, sleep disruption, seizures, speech and motor impairment, and mental health conditions for autistic patients, and to invest in new research in these and other areas.
The plan also proposes new federal funding to study neurodevelopmental regression, a condition estimated to occur in 30% of autistic children characterized by the loss of previously developed skills or milestones.
RISING AUTISM PREVALENCE
The prevalence of autism has risen rapidly in recent decades to an estimated 1 in 31 children aged 8 in 2022 from 1 in 150 in 2000, according to the CDC, partly due to improved screening and a broader definition of the condition. The agency estimates 26.7% have profound autism.
Yet the prevalence of adults with autism is unknown. The draft plans calls for the federal government, for the first time, to estimate the prevalence of autistic adults.
The nation has insufficient capacity to offer safe housing and professional caregivers to those with the highest needs, the plan says.
“The aim is to stop relying on unsupported families as the system’s hidden infrastructure,” it says.
(Reporting by Robin Respaut; editing by Caroline Humer and Bill Berkrot)
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