A group of 12 scientists, advocates and policymakers has formed its own autism research advisory committee, following the dramatic reshaping of a federal advisory committee earlier this year. The two groups each aim to influence the future of autism research by offering recommendations to federal agencies about which areas to prioritize. And with dueling meetings scheduled for later this month, the stark differences between the two groups are likely to be on display.
The new group, called the Independent Autism Coordinating Committee, or I-ACC, formed this week in response to the U.S. Department of Health and Human Services’ new roster of the Interagency Autism Coordinating Committee (IACC) in January. The majority of IACC has little research expertise, as The Transmitter previously reported, leading some autism researchers to express concern.
The I-ACC is a collaboration between the nonprofit Autism Science Foundation and the scientific advocacy group Coalition of Autism Scientists. It aims to “sustain autism research progress,” as described on its website. The group formed on Tuesday, as first reported by The Washington Post. The I-ACC is set to meet for the first time on 19 March—on the same day and at the same time as IACC.
The new committee does not see a problem with that overlap, says I-ACC member David Mandell, professor of psychiatry at the University of Pennsylvania Perelman School of Medicine. “My feeling is that what comes out of that IACC meeting is likely to be—at least a big chunk of it—contrary to established science, and that there will be relatively little room for people with opposing views to present them in a meaningful way,” he says.
“The federal IACC will continue to fulfill President Trump’s directive to bring autism research to the 21st century and support breakthroughs in autism diagnosis, treatment and prevention,” said Emily Hilliard, U.S. Department of Health and Human Services press secretary, in a statement to The Transmitter.
If IACC does offer opportunities for critical comment, the independent group may decide to hold future meetings at a non-conflicting time, Mandell says. But for now, the new group plans to offer programming that counters Health and Human Services Secretary Robert F. Kennedy Jr.’s current autism research agenda, Mandell says.
“I’m excited to be part of a group that can be proactive,” he says, one that can say, “‘Here’s where we should be focusing.’”
Mandell spoke with The Transmitter about the new independent committee’s plans.
This interview has been lightly edited for length and clarity.
The Transmitter: What concerns do you have about the current IACC?
David Mandell: They continue to focus on vaccines as the cause for autism. Some members have promoted not just untested treatments but treatments that have proven ineffective and are dangerous, like hyperbaric oxygen or chelation.
TT: What do you want other autism researchers to know about your group, the I-ACC?
DM: Our goal is to propose a research agenda designed to support high-quality autism science that advances our understanding of the causes, treatments and supports for autistic people. Researchers can help us by continuing to do the good autism research that they are doing and hopefully share what we share—even if they disagree with us. Really smart people disagree about the best way to proceed and what our priorities should be. And if they disagree, I hope they’ll let us know. Because we want this to be shaped by the constituents it’s designed to support.
TT: Who do you see as the audience for the I-ACC’s recommendations?
DM: The original IACC was started as an adviser to the Secretary of Health and Human Services. And so, whether RFK Jr. wants it or not, I think our audience should be leaders within the HHS. But we can also think about it the same way we do open letters to leaders in the government. The audience, then, is anyone who has a stake—whether it’s autistic people, their caregivers, clinicians, researchers or people in policymaking positions. And also private funders.
TT: What will success look like? And will that be difficult given that you don’t have any influence on the budget or an official role in government?
DM: Of course we will have little voice or sway when it comes to federal funding priorities. One metric of success will be what private organizations are funding, and whether that is consistent with what we are saying is important in research. A second metric is whether we offset the worst excesses of the official IACC, in terms of being a source for media to have information that goes counter to some of the untruths that may come out of that IACC. And whether a new administration, 1,052 days from now, will be able to hit the ground running with a thoughtful set of recommendations for what the most impactful autism research will be.
TT: What do you plan to discuss at the first meeting?
DM: Some of it will be procedural: How are we functioning? Who are we reporting to? How do we ensure that our process is open and that any conflicts are identified publicly? Who is missing from this group? And a big chunk of the agenda will be spent deciding which critical research questions we should be focused on. People around that table have very different research backgrounds.
TT: Do you have any advice for researchers who are trying to decide which meeting to tune in to?
DM: If you have the stomach for trying to push back at the IACC meeting, God bless you. Otherwise, you can look at the minutes from both meetings side by side and decide which has the potential to advance the cause of autistic people more.
