Autism community fears RFK Jr. would set back decades of progress

NBC News

29-01-2025

For decades, the scientific community has worked to dispel a thoroughly debunked theory that vaccines cause autism and finally shift its focus to find true potential causes.
But now, autism advocates say they are fearful that if Robert F. Kennedy Jr. is confirmed as health and human services secretary, it could undermine years of progress in unlinking autism and vaccines, while potentially diverting precious research dollars to a theory already discredited by hundreds of studies worldwide. They warn he would wield vast influence over who sits on committees and steer policy.
And some condemned Kennedy's past rhetoric around the disability, calling it stigmatizing and insulting.
Alison Singer, founder of the Autism Science Foundation, said she welcomes an examination into potential causes of autism, but focusing on vaccines could be dangerous for children.
'A new crop of parents will be afraid, who may believe that vaccines could harm their children, potentially cause autism, and those parents might withhold life saving vaccines from their children,' Singer said.
She said the concern is that 'funds are spent re-examining what we know does not cause autism, and are directed away from looking in new potential areas of what's causing autism. There's so much that we need to fund when it comes to autism research.'
Kennedy is scheduled to begin his Senate confirmation hearings on Wednesday. He's expected to face tough questions about the misinformation he has promoted around public health over the years, including his claims about vaccines.
Kennedy, who founded an anti-vaccine nonprofit and grew into one of the most prominent anti-vaccine activists in the world –– a crusade from which he and associated groups have made millions of dollars –– has prominently advanced a false contention that vaccines cause autism.
'I do believe that autism comes from vaccines,' Kennedy asserted to Fox News in 2023.
He went on to say that his position was misunderstood; he just wants to test the science behind them. But it's Kennedy who rejects the science in front of him, critics say.
'Are we [also] reviewing the question about whether the earth is flat? This is settled science,' said Rep. Kim Schrier, a Washington Democrat who previously worked as a pediatrician. 'We already looked into vaccines. They don't cause autism, but let's look elsewhere. And elsewhere might be genetics. It might be the fact that now we're putting a lot more kids under the umbrella of autism who never would have fallen under that umbrella before … It could be a lot of things, but bringing up settled science is only going to undermine confidence in vaccines, decrease immunization rates and put the entire population at risk.'
As the head of HHS, Kennedy would hold massive sway on the direction of health policy in the United States. He would lead number agencies, including the Food and Drug Administration, the Centers for Disease Control and Prevention and the National Institutes of Health. President Donald Trump's pick for the CDC, former Florida Rep. David Weldon, is further fueling fears because of his own past statements doubting vaccine safety.
Colliding with history
Kennedy often begins his argument that vaccines cause autism by spinning a narrative that he didn't know severely autistic children when he was growing up, and he doesn't know any at his age now. The increased incidence, he concludes, coincides with the prevalence of childhood vaccinations.
'I bet you've never met anybody with full-blown autism your age,' Kennedy told podcaster Joe Rogan in 2023, launching into a script he often uses in public appearances. 'You know, head-banging, football helmet on, nontoilet trained, nonverbal. I mean, I've never met anybody like that at my age, but in my kids' age now, one in every 34 kids has autism. And half of those are full blown.'
However, people with developmental disabilities were for decades institutionalized — and, in Nazi Germany, worse — or otherwise kept out of the public eye, a far cry from the integrated schools many public systems attempt to achieve today.
The practice of institutionalizing children with disabilities was particularly prevalent in post-war America, and often in facilities with poor conditions.
One example of the gap between public understanding of kids with disabilities came in 1965, when Kennedy was about 11 years old. His father, then a U.S. senator from New York, denounced the treacherous conditions at Willowbrook State School. In one of the most shameful exposés in U.S. history, disabled children were found to be living in filth, amid abuse and overall horrific conditions, sparking nationwide outrage.
'I think all of us are at fault and I think it's just long overdue that something be done about it,' Robert F. Kennedy Sr. said at the time of Willowbrook.
Zoe Gross, director of advocacy with the Autistic Self-Advocacy Network, noted that the autism diagnosis was still evolving in the '60s. She held up Willowbrook as an example of how those with developmental and other types of disabilities were once hidden from society.
'If you look at the video of the conditions that the people in Willowbrook were in, you'll see the people that RFK Jr. describes as having been missing through his childhood. And you'll see where they went, where they were forced to go,' Gross said.
Ignoring science
Autism diagnoses have risen from about 1 in 150 children in 2000, to 1 in 36 today. In that period, the definition of who is autistic broadened considerably, capturing a dramatic span of abilities. It now ranges from individuals who live independent lives, to individuals who are nonspeaking or who face serious medical challenges like seizures.
Researchers point to a strong genetic link to the complex disorder and have said there's much more research needed to determine what, if any, environmental factors play into it. Autism Speaks, one of the nation's largest autism research organizations, is one group that has called for more research into the role that factors like exposure to chemicals and parental age potentially play.
'We know autism is highly heritable, so the most needed research is on how genes and the environment interact. Genetic variations may lead to changes in underlying biology, making those individuals more resistant or susceptible to different exposures,' Singer, from the Autism Science Foundation, said. Those exposures could include toxicants, like insecticides or plasticizers; pharmacological, like medications; and possibly sociological, such as low socioeconomic status or not receiving adequate medical care, Singer suggested.
'Genetics research is far ahead of environmental research mostly because we don't have good ways of measuring what we are exposed to in the environment,' she added. 'That needs to improve. We also need to understand how environmental factors affect DNA structure and DNA expression.'
In Kennedy's conversation with Rogan in 2023, he contended that it was others who ignored scientific studies in the field.
'And everybody will say, 'Oh, there's no study that shows autism and vaccines are connected.' That's just crazy. You know, that's people who are not looking at science,' Kennedy said.
Others say that a refocus on vaccines as a cause for autism could divert funding from needed areas of research. Because of the last vaccine scare, some facets of autism research are behind, including how to help autistic individuals who have sleeping complications, gastrointestinal issues, bathrooming delays or seizures or whether there's a link between autism diagnoses and the development of Parkinson's later in life, Gross said.
'Our concern is, it's already so difficult to direct funding to these understudied topics,' she said. 'We don't want to see vaccines become a stranglehold on funding and choke off this very limited funding that these really critical questions are already getting.'
Parental concerns about a tie between vaccines and autism spiked after a 1998 study by Andrew Wakefield deeming a link between the MMR shot and autism. It was later found to be fraudulent and retracted years later. Among the issues, Wakefield failed to disclose financial conflicts of interest in the study.
In the intervening years, fears swept through the world of intellectual disabilities, not just prompting vaccine hesitancy but steering research dollars toward potential links between vaccines and autism. That put the community behind on research-based treatments for autism and interventions, advocates say.
Hundreds of studies done across decades and around the world have found vaccines to be safe.
These studies followed fluctuating theories about what in the vaccines may be potentially unsafe. The predominant hypotheses shifted from blaming the Measles-Mumps-Rubella (MMR) vaccine to homing in on the preservative thimerosal that is used in some vaccines to looking at the volume of vaccines children are given at one time. Each of the theories was tested and dismissed in scientific studies, which included research comparing the incidence of autism among vaccinated children to those who had not received certain vaccines.
Despite those findings, Kennedy supports the theory that ingredients in vaccines or the battery of vaccination schedules have triggered the rise.
In a 2023 podcast interview, Kennedy was asked if he thought any vaccine was effective. His response: '​​I think some of the live virus vaccines are probably averting more problems than they're causing. He then added: 'There's no vaccine that is safe and effective.'
A spokesperson for Kennedy did not respond to a request for comment.
Stigmatizing language
Trump himself suggested late last year on NBC News' 'Meet the Press' that in choosing Kennedy to lead HHS, he wanted him to look at the discredited link between vaccines and autism. Trump previously told Fox News — more than once — that he personally knew a family who 'had a beautiful child' before receiving a 'monster shot' of vaccinations then 'got very, very sick, now is autistic.'
Among the concerns in the autism community is that the kind of language both Trump and Kennedy use to describe the complex neurological condition is disparaging.
'He uses this belief that vaccines cause autism to spread a very stigmatizing and negative image of autism, where he says, for example, someone has a vaccine and their 'brain is gone,'' Gross said of Kennedy. 'And by saying their brain is gone, he means they're autistic.'
Gross, who is autistic, was referencing a 2015 remark by Kennedy in which he compared vaccinating children to the Holocaust. He later apologized for his remarks.
'They get the shot, that night they have a fever of 103 [degrees], they go to sleep, and three months later their brain is gone,' Kennedy said then. 'This is a Holocaust, what this is doing to our country.'
Gross called it 'fearmongering,,' stating: 'The idea behind making this link is that it's better to die of pertussis as a baby than to live as an autistic person.'