Formal Language
Yesterday, the Interagency Autism Coordinating Committee (IACC) met for the first time under the second Trump Administration. The IACC did not meet at all during 2025 despite being required to by law. Since then, HHS Secretary Kennedy has replaced the Committee’s public membership with handpicked allies with a range of fringe views on autism. ASAN is concerned about the outcomes of the meeting and the impact that they would have on the autistic community. The misguided, anti-science beliefs of Secretary Kennedy’s IACC do not align with the best interests of the autistic community.
At the meeting, the IACC recommended several policy changes to HHS. This includes formally adopting the term “profound autism” for use in research and policy. ASAN has long been critical of this term, which subdivides autistic people into those who are considered “too disabled” for community living and those who aren’t considered “disabled enough” for services and supports. We would have told this to the IACC if given the opportunity. Unfortunately, the IACC’s recommendations were drafted in secret before the IACC had ever met publicly and with no public input.
The IACC did not publish the recommendation materials or a meeting agenda for yesterday’s meeting until last Friday evening – less than two weekdays before the IACC’s first meeting and long after they stopped accepting comments for yesterday’s meeting. Several federal members stressed the lack of time to review these materials and to get input and approval from the rest of their agencies. Members also raised that yesterday’s process to consider these recommendations is highly unusual and potentially illegal. It is unclear who drafted these materials or who selected the topics these recommendations are about. There were no working groups established by the full committee to develop these recommendations and they are not the product of the full committee, because yesterday is the first time they have met. We want to stress that the IACC voted on these recommendations without comprehensive federal review, without public input, and despite questions about whether they were produced legally.
The IACC is supposed to publish its agenda and materials at least a week before the meeting. It did not do this. The agenda that it posted on Friday did not tell us anything meaningful about yesterday’s meeting and did not give us an opportunity to comment on the committee’s proposals. Despite our hopes that the IACC would provide an opportunity for inclusion, Secretary Kennedy’s HHS is clearly continuing to make policy about us without us, and may be breaking the law by doing so.
Going forward, we are holding the IACC accountable for their actions and working to ensure that autistic voices are heard within research and policy making decisions.
Plain Language
IACC stands for “Interagency Autism Coordinating Committee”. We call them the “IACC” for short. The IACC is a group of people chosen by the government. The IACC helps decide what autism research the government will pay for. For more information about the IACC, click here: https://autisticadvocacy.org/2026/02/interagency-autism-coordinating-committee-iacc/
The IACC met yesterday, on April 28th. This was the first IACC meeting since Trump became President in 2025. Since Trump became President in 2025, all the members of the old IACC got replaced. The new members of the IACC have a lot of wrong ideas about autism.
ASAN is worried about the new IACC. Their bad ideas could make the government change how they treat autistic people. This would hurt the autistic community.
At the IACC meeting, the IACC voted on changes they thought the government should make about autism. One thing they voted on is that researchers and policy-makers should look into “profound autism”. They said “profound autism” should get listed as a new kind of autism for research and policy projects.
But saying some autistic people have “profound autism” hurts the autistic community. It splits up the autistic community into people who are “profound” and “not profound”. Usually when people talk about “profoundly autistic” people, they mean:
- autistic people who need a lot of support every day
- autistic people with intellectual disabilities.
- nonspeaking autistic people
This is the same way autistic people get split up using functioning labels, like “low functioning” and “high functioning”. Functioning labels hurt autistic people. To read more about functioning labels, click here: https://autismacceptance.com/book/functioning-labels-and-support-needs/
The people who want to split the autistic community are not doing it because of what science says. They are doing it because of what they believe about our rights. They think that “profoundly autistic” people are too disabled to have rights. And they think “not profoundly autistic” people are not disabled enough to get the services and supports they need.
ASAN has said for a long time that saying “profound autism” hurts autistic people. But ASAN never got a chance to tell the IACC that. Instead, the IACC secretly decided what their first meeting would be about. Disability rights groups never got the chance to share what they think.
The IACC did not put out a meeting agenda for yesterday’s meeting until last Friday night. That was less than two weekdays before the IACC’s first meeting. By then, the IACC was not taking public comments for the meeting anymore. That means everyday people did not get a chance to give feedback about the agenda.
The agenda also did not say what the IACC would be talking about. But when they sent out the agenda, the IACC also sent out other materials. These materials talked about the things they would vote on during the meeting. This is not supposed to happen. The IACC is only supposed to decide what they will vote on during the meeting itself. Instead, the IACC decided what they would vote on before the meeting happened.
We do not know who wrote the materials that the IACC voted on yesterday. We do not know who picked what they would vote on. We know the whole committee did not work together to write the materials like they are supposed to. We know this because the whole committee never met together until yesterday.
Some IACC members who work for the government said that they did not get enough time to look at the materials. They did not have time to talk to other government workers about the materials. So they could not vote at the meeting. They said that the way the IACC voted yesterday was not how government committees are supposed to work. They said the way the IACC voted yesterday might be against the law. The other members decided to vote anyway.
The IACC is supposed to send their agenda and materials at least a week before the meeting. But they did not do this. They did not give people a chance to share what they think about the meeting agenda and materials. Because of all this, ASAN thinks the IACC may have broken the law.
ASAN hoped that the IACC would be a good place for autistic people to be part of government decisions about autism. But the IACC is making policies about us, without us. Going forward, we will keep telling the IACC that they need to do better, and follow the law. ASAN will keep working to make sure autistic voices are heard in research and policy-making decisions.