RFK Jr's Interagency Autism Coordinating Committee
A diminished representation of autistic people and members with alarming positions will not benefit autistic people.
RFK Jr.’s Interagency Autism Coordinating Committee had a meeting today.
I say RFK Jr.’s Interagency Autism Coordinating Committee, because he chose new members for the IACC, just like he did for ACIP.
“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.”
IACC must do better for autistic people
And like he did for ACIP, he hand-picked people who seem aligned with his agenda that vaccines are associated with autism.
RFK Jr. has created, as the Autistic Self Advocacy Network describes it, an “anti-vaccine IACC roster.”
RFK Jr’s Interagency Autism Coordinating Committee
Let’s take a look at the new RFK Jr’s IACC members.
Sylvia Fogel - chair of the IACC and works with the Autism Discovery Coalition
Lisa Ackerman - The Autism Community in Action = TACA, formally Talk About Curing Autism
Elizabeth Bonker - Communication 4 ALL
Laura Cellini - Elucidate ASD and the Autism Discovery Coalition
John Gilmore - Autism Action Network (was founded by parents of vaccine-injured children and was originally called A-CHAMP or Advocates for Children’s Health Affected by Mercury Poisoning) and the New York chapter of the Children’s Health Defense (founded by RFK Jr) organization
Krystal Higgins - National Autism Association - pushes unproven biomed treatments by MAPS providers (formally DAN! doctors)
Daniel Keely
Caden Larson - Children with Autism Deserve Education
Elena Monarch - Lyme and PANS Treatment Center
Liz Mumper - MAPS
Bill Oldham - The Autism Community in Action = TACA, formally Talk About Curing Autism
Jennifer Philips - Make A Stand 4 Autism
Honey Rinicella - MAPS and the Autism Discovery Coalition
John Rodakis - N of One: Autism Research Foundation
Daniel Rossignol - Rossignol Medical Center - MAPS
Tracy Slepcevic - Healing Autism
Katherine Sweeney - MAPS
Ginger Taylor - a co-founder of the Canary Party, which seemed to recruit and fund political candidates that promoted their anti-vaccine agenda, including that vaccines are associated with autism; she also maintains the list at HowDoVaccinesCauseAutism DOT org
Lisa Wiederlight
Walter Zahorodny
Recognize any of the names or the organizations with which they are associated?
It is a who’s who of anti-vaccine influencers and organizations who push unproven biomedical autism treatments.
And unlike previous years, there are very few actually autistic members on the IACC.
“ASAN is greatly concerned about the diminished representation of autistic people on the IACC. Our understanding is that of the 21 public members, all newly appointed, only three members are autistic – the bare minimum required by the Autism CARES Act. The immediate past IACC consisted of seven autistic members, one-third of the public membership.
ASAN also notes several alarming positions held by public members. We are concerned this will lead the IACC to recommend areas of focus for autism research that will not provide benefit to autistic people, if not endanger us, and negatively impact public health.
Several members have a long history of endorsing, promoting, and some practicing discredited and unsupported medical interventions for autism, including hyperbaric oxygen therapy (HBOT) and chelation. Several autistic people have died due to HBOT and chelation. Other interventions, such as leucovorin have no immediately obvious health risks but lack the scientific evidence necessary to support its usage. A list of non- evidence-based treatments are cited. The IACC, NIH, HHS, or any part of the administration should not endorse or promote any treatment for autism or co-occurring conditions without substantial evidence base and rigorous safety testing.
Several members have a long history of supporting a variety of discredited positions about vaccines. Studies have found people with intellectual and developmental disabilities are often at higher risk of infection and severe outcomes from vaccine-preventable diseasesue to living in congregate or residential facilities or co-occurring immune conditions. Eroding vaccine confidence puts us at risk.
Several public members of the IACC have an exclusive or near-exclusive focus on causation and so-called “cures” that is extremely out of step with the research priorities of the autistic community. Autism heritability is ~80%,11 with other elements of causation predominantly related to factors like parental age, maternal obesity, and maternal infections during pregnancy.12 Increases in autism diagnosis are largely understood to be due to increase in access to screening and diagnosis, improved diagnostic tools, and methodological changes in studies measuring prevalence. We are here and we’re going to keep being around. Research focused on autism should primarily support autistic people who are alive. We are best supported by research with the goals to alleviate symptoms of co-occurring conditions that cause pain or discomfort, improved tools tosupport communication and independence, and improved services that further independence and enable autistic people to live in our communities.
We encourage the IACC’s entire membership, federal and non-federal, to set aside past personal beliefs, rely on science-backed evidence, and focus on research areas that best support autistic people. We stress that research this body recommends researchers pursue must be conducted in a manner consistent with best ethical practices. We have seen concerning practices out of HHS and CDC this past year we encourage the IACC to avoid. Human subjects research into practices that are ineffective or known to cause harm to autistic individuals should not be endorsed or encouraged by this committee. In the past year, we have seen concerning actions out of HHS and CDC to this effect, and we encourage absence.
The autistic community deserves an IACC that will prioritize its needs, not reopen old debates. We hope you heed these words.”
ASAN Public Comment
What about the fact that several of the new members support the use of facilitated communication?
Before you jump on RFK Jr. for that, read what folks who are actually autistic have to say about facilitated communication and how it has helped them…
Still, it is clear that RFK Jr.’s IACC will promote research that will do little to support autistic children or adults or their families.
More on the IACC
How Anti-Vaccine Influencers Observe Autism Acceptance Month
ASF Statement on Changes to the Interagency Autism Coordinating Committee (IACC)
RFK Jr.’s Picks for a Key Autism Panel Include Advocates for Bizarre Theories
RFK’s Overhauled Autism Committee Is Even Worse Than It Looks
Independent autism committee that challenges RFK Jr’s overhaul draws criticism
As the administration focuses on autism, many in the community say they need support, not a ‘cure’
Believing in Nonspeakers and the Right to Communicate: An Interview With Dr. Vikram Jaswal