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Members of the federal Interagency Autism Coordinating Committee (IACC) today voted to adopt a working strategic plan that Committee Chair Sylvia Fogel said is designed to make it easier to track what the government actually does — and whether it makes a measurable difference.
“We move with urgency now,” Fogel told the IACC during its second meeting of the year, before the vote took place.
That focus on action and accountability ran throughout the committee’s discussion of its plan for federal autism policy.
Fogel and IACC member Laura Cellini described it as a framework for tracking what federal agencies do, what they don’t do and whether their efforts produce results.
The real test will come after a plan is adopted, Cellini said.
The question for this committee “is not whether the plan was adopted,” she said. “It is what happens after it is.”
Mary Holland, CEO of Children’s Health Defense (CHD), who attended the meeting, called the plan “a step in the right direction.” Though she said there is still a long way to go, Holland praised the IACC’s “motivated members” for focusing on measurable action.
The plan seeks to coordinate federal efforts across autism research, diagnosis, treatment, education, disability services, caregiver support and other areas.
Claiming that autism is too broad and complex for any single agency to address, the committee calls for connecting “evidence to authority, authority to agency responsibility, and responsibility to measurable deliverables.”
IACC member Elizabeth Bonker, who has autism and communicates by typing, called the plan a “great leap forward for families who are looking for action.”
‘The plan is not an ending — approving it does not close a door, it opens it’
The committee’s focus on accountability was central to its discussion of how the plan was developed.
Before today’s full committee meeting, autism advocacy groups criticized the IACC for moving too quickly and giving the public too little opportunity to weigh in.
Fogel pushed back, saying the process was “efficient,” not secretive.
“Every change is visible, traceable and appears in a public document,” Fogel said. “That is transparency, not secrecy.”
On Wednesday, the Autistic Self Advocacy Network and 15 other autism advocacy groups accused the committee of “shutting the community out of important decisions about autism research and services.”
The groups also questioned whether the process complied with Federal Advisory Committee Act requirements and criticized the four-day public-comment period.
Fogel pointed to the volume of public participation. The committee received 5,265 comments over four months, more than it received during the previous 10 years combined, she said.
But Fogel said the comments also showed a longstanding problem: Families and advocates have repeatedly identified the same needs without seeing consistent federal action.
“Urgency is not new,” Fogel said. “Acting on it is.”
She stressed that approving the plan is only the beginning.
“The plan is not an ending — approving it does not close a door, it opens it,” she said, emphasizing the need to turn new research and findings into action, care and treatment.
Cellini made a similar point, saying the real test will come after the plan is adopted. She said the plan should produce changes that “stakeholders can feel and verify.”
The plan cites a 2024 Government Accountability Office review that found “federal autism coordination only partially followed leading practices for accountability.”
Previous IACC strategic plans generally failed to translate goals into “measurable objectives against which progress could be judged.”
The new plan says federal autism efforts have generated substantial activity but too little movement from research and other activities into “usable products.”
The IACC provides advice and recommendations to U.S. Health Secretary Robert F. Kennedy Jr. on federal activities related to autism. The recommendations are nonbinding.
Vaccine research emerges as a flashpoint
Vaccines became one of the most prominent issues raised during public comment, even though the word “vaccines” does not appear as a research priority in the draft plan.
“It was a glaring omission, glaringly acknowledged by the public comment,” CHD Senior Research Scientist Karl Jablonowski wrote in a live blog during the meeting. He cited about “1,500 comments specifically asking for vaccines to be included for considerations.”
CHD Chief Scientific Officer Brian Hooker offered a more nuanced assessment.
In his oral comments, he praised the plan for recognizing neurodevelopmental regression, mitochondrial and metabolic dysfunction, gut microbiome and motor-planning difficulties as areas worthy of greater attention.
He called the draft “the most significant federal autism document perhaps ever.” But he said its treatment of immune-mediated regression and environmental factors left a significant gap by not explicitly addressing vaccines.
The Centers for Disease Control and Prevention’s (CDC) “own website now states that the claim vaccines do not cause autism is not an evidence-based claim, and that studies supporting a link have been ignored,” he said.
Steve Kirsch, executive director of the Vaccine Safety Research Foundation, also called for vaccine-related research linked to sudden-onset autism.
He said the timing of some reported autism onsets following vaccination warrants independent replication.
“Thirty percent of onsets happen within one day of vaccination,” he said. “That isn’t random chance.”
Kirsch also said “the day of the week matters,” noting that sudden onset of autism is 50% lower on Sundays. “Genes don’t take weekends off, but pediatricians do,” he said.
He cited the McDowell triplets as “a stunning example of this effect.”
“Perfectly normal triplets became severely and irreversibly autistic within hours of each other, and it started just two hours after vaccination,” Kirsch said. “Nobody can explain why that happened, even though it’s obvious to anyone who hears the story.”
Kirsch urged the IACC to conduct its own analysis and make the underlying data public. “This is the single most important thing you can and should do,” he said.
Cellini acknowledged that the committee had received substantial public input on vaccines but said the plan was intentionally written without committing to any particular trigger.
“We are agnostic on triggers,” Cellini said. “We don’t want to close the door on any potential trigger.”
Jablonowski challenged that characterization. “It’s not agnostic if you completely avoid the V-word,” he said.
‘The plan needs to reflect where science is today’
The plan also calls for broadening the scientific questions that drive federal autism research.
It says 38.5% of the National Institutes of Health’s autism research portfolio focused on genetics and genomics, compared with 5.8% focused on environmental factors, based on an analysis conducted using a large language model.
Some committee members argued that genetics should no longer dominate the research agenda.
IACC member Tracy Slepcevic said genetics “cannot be the only lens through which we examine autism” and called for greater attention to environmental factors and other areas that have historically been underfunded or overlooked.
Alycia Halladay, Ph.D., chief science officer at the Autism Science Foundation, argued that researchers should not treat genetics and the environment as separate paths.
“The plan needs to reflect where science is today,” she said.
Fogel and Cellini stressed that expanding the research agenda does not mean abandoning genetics.
“This plan does not deprioritize genetics — it expands the focus into other areas,” Fogel said.
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Better diagnosis isn’t fueling ‘gigantic wave of autism’
The discussion also touched on a broader question that has persisted for years: Does the rise in autism prevalence reflect better identification, a genuine increase in autism, or both?
The IACC’s plan notes that autism was identified in about 1 in 31 children in the CDC’s 2022 surveillance year, compared with about 1 in 150 in 2000.
It says the increase reflects factors including greater awareness, expanded screening and changes in surveillance methodology, as well as any change in underlying occurrence.
Walter Zahorodny, Ph.D., rejected the idea that the increase can simply be attributed to better diagnosis. “This misconception has true consequences,” he said.
He said the “gigantic wave of autism” represents a true secular change and called for expanded research, healthcare and education infrastructure.
IACC member John Gilmore, founder and executive director of the Autism Action Network, called it “unimaginable” that researchers still cannot definitively say whether the autism rate is increasing.
Related articles in The Defender
- IACC Calls for New Federal Autism Policies, ‘Precision’ Medical Treatment and Better Long-Term Care
- RFK Jr.’s New Autism Advisers Set Sights on ‘Many Unanswered Questions’
- ‘Profound Autism’: Will New Definition Lead to Better Care, Research?
- Autism Committee Hears From Non-Speakers, Parents During First Meeting Under RFK Jr.
- ‘Bizarre, Creepy’: Kennedy Critics Form Shadow Autism Research Panel
- ‘Uncompromising and Relentless’: HHS to Study All Possible Causes of Autism, Including Vaccines
