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The Interagency Autism Coordinating Committee (IACC), which today held its first meeting since Robert F. Kennedy Jr. took over at the U.S. Department of Health and Human Services (HHS), voted on four recommendations, all of which passed.
The committee, which coordinates nearly $2 billion in federal funding and helps shape research, services and policy across the government, voted on:
- Proposed Safety Measures and Policy Objectives to Address Urgent and Critical Risks Associated with Wandering and Elopement.
- Proposal to Adopt the Term “Profound Autism” with Functional Criteria for Research and Policy.
- Proposed HRSA Clinical Guidance on Structured Review of Systems, Reduction of Diagnostic Overshadowing, And Clinical Safety Assessment for Individuals with Autism Spectrum Disorder.
- EPSDT Clarification Regarding Clinical Assessment, Co-Occurring Conditions, and Safety Risks for Children with Autism Spectrum Disorder.
The committee will send its recommendations to Kennedy. The recommendations aren’t binding, but according to STAT, the group “wields significant power.”
The meeting brought together 20 public members and federal representatives from more than 20 agencies.
‘Diagnostic overshadowing’ — when doctors dismiss medical issues in patients with autism
Today’s meeting opened with a clear message from families of autistic children: Doctors need to take co-occurring medical issues seriously.
New member Daniel Keely, who was non-verbal until the second grade, captured that frustration early in Tuesday’s meeting. “Have you ever thought of implementing a reporting system for caregivers when doctors do not listen?” he asked.
Keely raised the issue during a discussion of diagnostic overshadowing — a phenomenon that occurs when doctors dismiss medical concerns as “just autism,” non-speaker Caden Larson said.
That concern ran through the entire meeting.
Ginger Taylor, the mother of an autistic son, said many families feel autistic children are treated as “less than” when it comes to care. Others said that mindset leads doctors to overlook real medical problems in autistic patients.
IACC Chair Dr. Sylvia Fogel agreed. She called diagnostic overshadowing something “I see over and over again” as an assistant in psychiatry at Massachusetts General Hospital.
Mother ‘took matters into my own hands’ after doctors failed to help
The discussion focused on what families are seeing firsthand.
Public input drove much of the agenda. Ahead of the session, the committee received 259 written comments from people with autism and parents, clinicians, researchers and advocates. Eighty-three focused on causes of autism, spanning genetic, environmental and biological factors.
That interest carried into the room.
At least 16 public members are either autistic or are the parents of autistic children. Many speakers described autism as a “whole-body” condition — not just behavior. They pointed to links with the immune system, metabolism, mitochondrial function and gastrointestinal health.
From there, the focus turned to what happens when those issues get missed.
Jennifer Philips said she “took matters into my own hands” after doctors dismissed her daughter’s medical problems. She warned that this can lead to “medical neglect.”
She also called for clearer diagnoses, describing an “outcry from families who have witnessed the disappearance of their children as they knew them.”
Laura Cellini shared a similar experience, but with a different outcome. After her child regressed as a toddler, doctors identified immune deficiencies and other conditions. Treating those issues helped, she said, underscoring the need to focus on root causes.
Dr. Elizabeth Mumper agreed. She said clinicians should think in terms of multiple “autisms” and pay closer attention to gut, immune and mitochondrial problems. Pediatricians often lack training to identify these conditions and need better screening tools, she said.
‘I was treated like I was cognitively impaired all my life’
Non-speaking advocates added another layer, describing how communication barriers can hide underlying problems.
Elizabeth Bonker said non-speakers are “misunderstood and underestimated.”
Katie Sweeney said she lives that reality while caring for her 28-year-old non-verbal son. After he gained a way to communicate, he told her, “The time before talking was hell. I was treated like I was cognitively impaired all my life.”
Larson shared a similar experience. “Before I was able to communicate, I was trapped in silence until I was 20 years old,” he said. “Learning to spell changed everything for me.”
He said doctors often dismiss issues like gut problems “as just autism,” instead of treating them like they would in any other patient.
He and others also pointed to rising autism rates, calling it “a tsunami.” He stressed the need to identify causes and “stop the tsunami.”
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‘We need a willingness and openness to rethink the systems we have built’
The discussion also addressed what happens after childhood.
Families said support often drops off once children become adults. HHS National Autism Coordinator Diana Diaz-Harrison pointed to both the “joy and daily challenges of loving and caring for someone who requires 24/7 around-the-clock support.”
Sweeney said the system isn’t built for that reality. “They are kids for 20 years, and adults for 60-plus more,” she said, urging better long-term solutions. “We need a willingness and openness to rethink the systems we have built.”
Written comments also highlighted the needs of people with “profound autism.” Fogel said the term appeared in roughly 35% of submissions. Many commenters said this group — people who need near-constant support and may have limited or unreliable speech — is underrepresented in research, policy and media.
Other commenters pointed to safety risks, especially wandering or elopement. Families described individuals leaving homes, schools or care settings without warning, often unable to communicate their needs or recognize danger.
They said the issue can quickly become life-threatening and called for better prevention, tracking tools and emergency response systems.
Despite concerns ahead of the meeting that the discussion might center on “debunked” claims, including vaccine links, that issue stayed on the margins. A few speakers raised it, but it did not drive the conversation.
During a brief oral comments session, attorney Aaron Siri called for more research on vaccines. He said no studies have been presented that disprove a link between vaccines and autism. He noted that the Centers for Disease Control and Prevention finally updated its website to acknowledge that fact.
Tracy Slepcevic echoed Siri’s concern. “I feel that this is a subject that deserves to be addressed and an actual study deserves to be done for these families,” she said.
Watch the IACC meeting here:
Related articles in The Defender
- RFK Jr.’s New Autism Advisers Set Sights on ‘Many Unanswered Questions’
- ‘Parents Have Waited for 30 Years’: NIH to Study Causes of Autism
- ‘Honesty at Last’: CDC Says ‘No Evidence’ to Support Claim that Vaccines Don’t Cause Autism
- 1 in 31 Kids Had Autism in 2022 — Up From 1 in 36 in 2020
