A group of scientists and autism experts are finally fighting back against the U.S. Health and Human Services Secretary, Robert F. Kennedy Jr., and what they describe as his autism misinformation and misinformed policy campaign.
How? They’ve announced they are creating a new national advisory panel, to be called the Independent Autism Coordinating Committee, following the health secretary’s January overhaul of the federal health department’s advisory Interagency Autism Coordinating Committee (IACC), which included the replacement of most of that committee’s previous members.
Kennedy refilled the IACC with 21 new members, many of whom critics say align with views and medical approaches not supported by the weight of scientific evidence, including unproven theories about autism causes and vaccine links to autism.
Leaders committed to the science of autism
The new advisory group is loaded with recognized leaders in the field, including two former directors of the National Institute of Mental Health. It aims to ensure evidence-based autism research continues to guide policy in the U.S. To do that, the group says it will develop a coordinated, science-based autism research agenda, track progress on research including genetics, environmental factors, diagnostics, treatments, services, and interventions, and report annually on major developments in autism research.
As the mother of a son with autism, I cannot shout “HURRAH!” loudly enough.
Parents and people with autism deserve guidance from those committed to real science and treatment or prevention approaches backed by solid evidence. They do not deserve rumor-mongering and quackery.
I’ve been following Kennedy’s autism rhetoric for many years now, including his past promotions of cod liver oil, nutritional supplements, and chelation as treatments for autism. Such “alternative” hooey gives families false hope at best. At worst, it can cause children to suffer unnecessarily.
By the way, studies have found no clinical-trial evidence that chelation improves autism symptoms or behavior — and reviews warn of serious risks that can outweigh any proven benefit.
Words speak volumes
Kennedy Jr. has made many proofless claims about the causes or treatment of autism. Parent-to-parent, I want to share a few of them — and the science that refutes them:
Kennedy said: “The phrase ‘vaccines do not cause autism’ is not supported by science.”
What the evidence says: Large population studies and meta-analyses involving more than a million children have found no association between vaccines and autism, including the measles-mumps-rubella vaccine.
Kennedy said: “The whole thing about ‘vaccines have been tested and there’s been this determination made’ is just a lie.”
What the evidence says: Multiple epidemiological studies examining vaccine exposure and autism diagnoses have consistently found no increased autism risk among vaccinated children, including a nationwide study tracking more than 650,000 children.
Kennedy said: “This is coming from an environmental toxin.” (referring to autism prevalence)
What the evidence says: Research shows autism risk is strongly influenced by genetic factors, and studies indicate environmental influences alone are unlikely to explain changes in autism prevalence.
Kennedy said: Autism is a “preventable disease.”
What the evidence says: Reviews of autism research describe it as a complex neurodevelopmental condition with strong genetic contributions, making it inaccurate to characterize autism broadly as preventable. (Review)
And, most recently:
Kennedy said: “There’s two studies that show children who are circumcised early have double the rate of autism… It’s highly likely because they are given Tylenol.”
What the evidence says: Research using sibling-comparison methods and other controls has found no causal link between acetaminophen exposure and autism, and scientists say observational studies alone cannot establish causation.
My family, and yours, deserve better
We need an independent group of real scientists and advocates who believe and support evidence-based information to speak truth to power in Washington, D.C. Here are those stepping up to provide those voices:
Dr. Joshua Gordon and Dr. Tom Insel, former directors of the National Institute of Mental Health; Joseph Joyce, president and CEO of Autism Society of America; former federal committee members Dr. David Mandell from University of Pennsylvania, Autism Science Foundation President Alison Singer and Dr. Helen Tager-Flusberg of the Coalition of Autism Scientists; Dr. Kristin Sohl of the American Academy of Pediatrics (AAP); Dr. Matthew State, scientific director of Aligning Research to Impact Autism (ARIA); Dr. John Walkup of the American Academy of Child and Adolescent Psychiatry (AACAP).
I, for one, will be looking to the new Independent Autism Coordinating Committee, and certainly not to Mr. Kennedy’s yes-man in-house advisors, to offer future guidance to my kid.
