Post Federal IACC meeting statement from Alison Singer, President of the Autism Science Foundation 

  • The IACC met for the first time in 2 years, but strayed from its legal mandate to produce an actionable plan for autism research
  • The Autism Science Foundation agrees with the committee’s broad goals around profound autism, wandering, and co-occurring conditions
  • The IACC’s new definition of profound autism controversially excludes IQ measures, which would leave out a large share of the most vulnerable individuals
  • The meeting likely violated FACA rules by circulating final documents and expecting members to vote on them without providing input

New York, NY — April 28, 2026 —Today, the federal Interagency Autism Coordinating Committee (IACC) met for the first time in 2 years. I agreed with many things that IACC committee members said. Autism is a crisis. We need better care, better access to care, better supports, better services, and better research. Our kids with profound autism need medical help. I agree with formalizing the use of the term “profound autism” as a “whole of government” term. The Autism Science Foundation has advocated for this for years. Wandering has always been recognized as an important issue at the IACC. Studying co-occurring medical conditions is also critical because autism often does not occur in isolation; many autistic people also experience additional health conditions that can strongly affect daily functioning, quality of life, and support needs. 

But this committee is created by law, to do a specific and important job. That job, as per the Autism CARES Act, is to “develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research”; not to, as IACC chair Dr. Sylvia Fogel stated today, “take the lived experience and urgent concerns of the community and translate them into policy for HHS to consider.” While that goal is laudable, by law, the committee must develop a research plan with action steps for how to get the research done. That is why scientists who do research have always served on this committee; because they are able to help translate the goals into actions. So, while I agree with the goals the committee members outlined, the committee needs to move beyond describing the symptoms and challenges of autism and actually write a research plan to accomplish these goals, as the law requires. 

Profound Autism:

I have fought for many years to create a separate category for profound autism to clearly distinguish people with autism who have the highest support needs so that we can properly plan to meet those needs. I served on the Lancet Commission, which published the first definition of profound autism, and am the senior author on the Delphi study that Dr. Fogel referenced today. IQ measures were included in both the Lancet and Delphi definitions of profound autism because IQ serves as a proxy for people who need extensive help with daily living, who need supervision to ensure safety, who have limited independence in adulthood, and who need long-term caregiving and support. The Delphi study included over 130 participants, and over two-thirds (68%) agreed that IQ should be included in the definition of profound autism. There was discussion of what the IQ cut-off should be, but there was clear agreement that it should be included. 

The IACC’s new definition of profound autism excludes IQ measures, stripping the term “profound autism” of the severe cognitive impairment that defines this population. In fact, based on the CDC study that Dr. Fogel cited today (Hughes et al, https://autismsciencefoundation.org/wp-content/uploads/2023/04/CDC-Profound-Autism-Statistics_ASF-Copy.pdf), 42.7% of people who met criteria for profound autism, met it solely on the basis of having an IQ under 50. 

That paper reports that among those classified as having profound autism:

  • 42.7% qualified by IQ < 50 only
  • 38.1% qualified by nonverbal/minimally verbal only
  • 19.3% qualified by both IQ < 50 and nonverbal/minimally verbal

Similarly, the argument that IQ be excluded because it is too “resource intensive” is “ unreliable” and requires “motor planning”, calls for increased investment in better measurement tools, not exclusion of individuals with the most profound needs. 

Excluding IQ does not serve the interests of the profound autism community; it serves only the interests of a very small subpopulation of people who support facilitated communication, like Spelling to Communicate (S2C). Many proponents of S2C, several of whom serve on the federal IACC, resist including IQ in the definition of profound autism because they believe IQ tests underestimate nonspeaking autistic people. A central S2C claim is that autistic people who appear severely impaired may actually have high intelligence. The problem is that S2C has never been validated empirically. Dozens of studies have discredited facilitated communication, and no study has documented independent authorship under controlled conditions. There is concern that facilitated communication hijacks the authentic voices of profoundly autistic people, replacing them with the views of the facilitators. We need much more validation evidence before we accept that S2C is reliable. That is why the Autism Science Foundation has called for additional research on S2C.

The IACC as a Deliberative Body:

There was a lot of confusion and discussion about Federal Advisory Committee Act (FACA) rules and whether they were violated at this meeting. Materials were written, marked final, and distributed to committee members outside of the public view. This violates FACA rules, a point raised by several committee members who represent the federal government. This IACC is not being treated as a deliberative body. Instead, the committee got final materials and was expected to vote on them without providing input. This undercuts the very purpose of having an advisory committee.

In my 12 years as a member of the IACC, we never received final documents; we received materials for discussion developed by working groups, which were usually amended after broader discussion and deliberation. We voted at subsequent meetings, not at the meetings where materials were first presented. It is worth noting that none of the current public members have prior experience serving on the IACC, and, based on their comments, lack awareness of standard FACA operating and voting procedures.

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ASF Media Contact:
C.J. Volpe
Autism Science Foundation
cvolpe@autismsciencefoundation.org