Most people have never heard of the IACC, or the Interagency Autism Coordinating Committee. It was established under the Children’s Health Act of 2000 and re-authorized most recently under the Autism CARES Act of 2024. It’s housed within the United States Department of Health and Human Services (HHS), coordinating autism research, services, and policies across various government agencies, including the NIH and the CDC. At first glance, it seems like exactly the kind of group you’d want prioritizing autism research and awareness. But as the line between science and politics starts to fade, many are increasingly worried about whose motives and perspectives are actually fueling decisions in federal autism policy right now.
A New Committee Almost Overnight
Back in January, RFK Jr. announced 21 new public members to the IACC – none of whom have ever served on the committee and most of whom support the widely debunked narrative that vaccines cause autism. This wasn’t the normal, gradual turnover a federal advisory committee usually sees. Some individuals used the term “overhaul” to describe this huge replacement of the committee.
One of the new members is Dr. Tony Rogers, a Fellow at the Brownstone Institute for Social and Economic Research. In a 2021 Substack post titled, “The Political Economy of Autism,” Rogers writes, “Unfortunately, in the debate over toxicants that increase autism risk, all roads lead back to vaccines…we are in the midst of the most horrifying physician-caused catastrophe in human history.” Another new member, John Gilmore, founder of the Autism Action Network, describes his son as “vaccine injured,” and has pushed for more vaccine-focused research within the committee.
Not everyone on the new committee shares that view. Dr. Sylvia Fogel, a psychiatrist and instructor at Harvard Medical School, was named chair of the IACC in January. In an article in The Harvard Crimson, Dr. Fogel says, “I think the available data that we have certainly for the MMR and thimerosal [vaccines] does not support a link, but I also know that systems biology and personalized medicine and specific individual vulnerabilities really deserve more investigation.” Dr. Fogel is also the mother of two children with autism, one of whom is nonspeaking with profound autism and complex co-occurring medical conditions. She has emphasized that her interest in the space is deeply personal, not just professional.
Another Committee Forms
In March, a group of scientists, former IACC chairs, and advocates, including Dr. Helen Tager-Flusberg, a longtime autism researcher and former IACC member, formed their own initiative in response to the IACC: the Independent Autism Coordinating Committee, or I-ACC. The group presents itself as a science-based alternative to the existing federal committee. Their meeting schedule follows that of the IACC with the goal of quickly responding to any recommendations not supported by science-backed research and evidence.
Why This All Matters
Autism now affects roughly 1 in 31 children in the most recent cohort tracked, up from 1 in 150 in 2000. Approximately 70% of children experience delayed entry into early behavioral interventions. 54-94% of individuals with autism develop co-occurring mental health conditions in their lifetime. The statistics are there and there are plenty more just like these. The numbers themselves speak volumes regarding the need for support and awareness.
The IACC published their draft 2026-2028 Strategic Plan on July 20th. The plan highlights their priorities for the next two years in the field of autism research. For comparison, the last comprehensive strategic plan from the IACC, from 2023, compiled into about 250 pages. This new plan marks 336. In several LinkedIn posts, Dr. Fogel writes as both a clinician and a parent, encouraging people to read the draft plan rather than react to headlines about it. She frames her approach as informed by input from committee members, decades of prior public comments, her clinical background, and her personal experience as the mother of two autistic children. She points to the Executive Summary on the draft as the best entry point before diving into the detailed recommendations.
Initially, the committee only gave the public four days for potential feedback. People were furious. Judith Ursitti, President of the Profound Autism Alliance, wrote, “For caregivers of people with profound autism, who frequently can’t even get a shower for themselves every four days, this timeline created a barrier to participation.” With demands coming left and right, the HHS postponed the comment deadline to August 20th.
My Initial Thoughts
One of the first lines in the Executive Summary reads: “Autism can no longer be addressed adequately as either a research topic or a single service category.” In terms of the research, it’s been approached by understanding causes and mechanisms and then publishing findings. In terms of the single-service category, autism is addressed via one specific type of therapy like early intervention or special education. I appreciate that the plan acknowledges that neither framing alone captures the span of the needs and supports that individuals with autism and their families are asking for. At the same time, every individual with autism has different needs, and so focusing on one category will only help a slim portion of the neurodiverse community.
The plan’s answer to the “how do we actually deliver on this” question is NAPTI, the National Autism Precision Therapeutics Initiative. NAPTI’s goal is filling the gap between scientific discoveries and real-world solutions. A “National Autism Coordinator” would pull together all of the relevant participating agencies and track progress: the NIH would run day-to-day operations, the FDA would co-lead on the science side, the CDC would support surveillance, and other agencies would plug in when needed, including ones you wouldn’t expect, like the Department of Defense’s own autism research program. The IACC does acknowledge that this wouldn’t be a new institute or department but rather an effort to combine pre-existing networks.
Maybe I’m an optimist, but I think cross-agency collaboration like this is a genuinely good idea. Each network has a different perspective to offer. I think by taking advantage of those different viewpoints is very beneficial. Success comes from diversity of perspectives. If NAPTI operates the way it’s described, as well as the individual agencies themselves, I think it could actually be beneficial.
What I don’t love is the language. NAPTI’s entire structure is built around clinical validation and biomarkers. Even the name leads with “Therapeutics.” It phrases autism as something to diagnose and eventually cure, rather than autism as a different way of having your needs be met by the world around you. However, one of the plan’s first concrete ideas is conducting comparative-effectiveness research on drugs prescribed for things like irritability, anxiety, and sleep disruption, plus a real-world registry tracking safety and outcomes. To its credit, the plan is careful to separate medicating a co-occurring condition from medicating autism itself and it specifically calls for deprescribing guidance when a medication isn’t actually helping.
I also got stuck on how the plane proposes to measure success. The plan writes, “Every domain reports against the same three tiers: Recognition, whether a need is identified; Access, whether an identified need is met by a service actually delivered rather than authorized on paper; and Stabilization, whether the delivered service produces durable function, safety, and participation.” There are nine of these “domains” that are organized around the arc of an individual’s life, starting with early diagnosis. The way I interpreted this was how the IACC is going to “score success.” In other words, they want to be able to access the same three questions across different domains/topics. For example, in terms of Recognition in the diagnosis domain, one would ask, “Was this child screened?”. I admire the initiative of trying to standardize accountability this way. But, realistically tracking whether a delivered service actually produced a lasting result feels a little out of their reach. They do name one accountability tool: an “Autism.gov IACC Implementation Dashboard,” with quarterly milestone updates and annual agency attestations.
My last comment I want to discuss is they call autism a “federal enterprise problem,” a term from the business and technology sectors. The term has more of a bureaucratic connotation. It’s a term you would use in modernizing technologies rather than advocating for disability rights. The social model isn’t entirely absent but I feel like it is subordinate in the draft rather than completely present.
My suggestion would be to have someone who actually identifies as autistic on this team. A core motto in autism advocacy is, “Nothing About Us Without Us.” I think the only way for these initiatives to work is to actually build a community with the people you are trying to help.
If you want to read the draft yourself or submit a comment before the August 20th deadline, it’s available at iacc.hhs.gov. You can also email IACCPublicInquiries@mail.nih.gov.