A few days after former President Donald Trump won reelection, Morénike Giwa Onaiwu’s fourteen-year-old son asked his mom: Was there a way to erase the fact that he’s autistic from his medical records?
“It was like a knife to my soul,” said Giwa Onaiwu, a Black autistic writer and advocate in Houston. “From the time that they were young, I didn’t want them to grow up with any stigma about who they are. I knew the world that they were gonna face. So I’ve always tried to tell them, your skin is beautiful. Your brain is beautiful. They’ve never been ashamed to tell anyone that [they were autistic].”
While erasing the teen’s diagnosis isn’t possible and Giwa Onaiwu isn’t sure where their teenager soaked up this shame, they’re also not surprised at the question. They, like many autistic people, worry that the United States is primed to return to an era of autism misinformation with the potential ascension of Robert F. Kennedy Jr. into public office.
When Trump nominated the vaccine critic and former environmental lawyer to lead the Health and Human Services agency, his choice rippled through the autism community. For the last two decades, Kennedy has defended and popularized the debunked idea that vaccines cause autism. He’s called autism an “epidemic.” Advocates and scientists are frightened at how mainstreaming these myths could alter how the country treats autism and funds research to inform our understanding of the condition.
“The belief that vaccines cause autism isn’t just factually wrong,” said Zoe Gross, Director of Advocacy at the Autistic Self Advocacy Network. “If you’re saying vaccines cause autism and therefore, people shouldn’t get vaccines, you are also saying it’s worse to be autistic than to die of measles. That’s not a belief that autistic people are happy with.”
Chances are you know someone with autism. In the United States, it’s only slightly less common than having red hair. And many people in the community feel strongly about the Kennedy nomination. Anger, dread, fear, resolve — the collective mood is grim.
“My primary concern is that he’s going to take autism information and support back to a dark age that we haven’t experienced yet. It’s gonna be worse than anything we’ve been through before,” said Shannon Des Roches Rosa, senior editor at Thinking Person’s Guide to Autism.
The community frets because it has a lot to lose. Activists have worked hard to destigmatize autism since an infamous 1999 study suggesting a link between the condition and vaccines.
Public policy and popular understanding of autistic people has dramatically shifted in recent years as more researchers investigate measures to improve a person’s quality of life, rather than simply autism’s origins. If Kennedy pivots the field back to vaccines, he’d be relitigating settled science, according to Zach Williams, a psychologist and neuroscience doctoral candidate at Vanderbilt University School of Medicine.
“Our gripe with vaccines ended 20 years ago, and we’re sick of it. We have no desire to continue that debate,” said Williams, an autism researcher himself. “The fact that people have resurfaced it with the covid vaccine made every single autistic person I know just groan again. It is the bogeyman of our community that people continue to be anti-vaccine.”
In the 2000s, the autism community was rife with misinformation and dangerous therapies, often sparked by Kennedy’s writing and speeches. The resulting stigma left its mark on autistic people’s mental health. Placing Kennedy and his anti-vaccination views into one of the county’s most powerful public health positions sends a clear message to autistic people about how the world feels about autism, said psychologist Monique Botha.
When the Durham University professor interviews autistic people, the legacy of the disproven link between vaccines and autism has been a recurring theme. One person told Botha, “People would rather their children have a potentially fatal disease than end up like me.”
Rosa knows firsthand how an uncertain information landscape can affect autism care. As the parent of an autistic adult, she fell for pseudoscience when she first started researching treatments that didn’t help her son. A similar ecosystem could develop if Kennedy were to lead HHS, which she called a “a nightmare scenario.”
“It’s an information clusterfuck, an information snafu, almost an autism information Squid Game. How do you find someone with the right information?” she said.
Finding the right information about autism means funding and disseminating research. But it would be relatively easy for Kennedy to curb such efforts. He has already vowed to fire 600 NIH employees on his first day in office, and he could also nix existing research, though that would take more time, said Dora Raymaker, co-director of the Portland State University Academic Autism Spectrum Partnership in Research and Education.
Raymaker is also a research associate professor, meaning they are dependent on federal funding to do their job. In 2019, a previously-funded research project into psychosis was ready to start, but Raymaker and other advocates blamed Elinore McCance-Katz, Trump’s appointee to Substance Abuse and Mental Health Services Administration for refusing to reup the project.
“The entire thing fell apart two weeks before it was supposed to start,” said Raymaker.
One of the main ways the federal government interfaces with autistic parents, children, and researchers is through the Interagency Autism Coordinating Committee. The committee helps the HHS Secretary define federal priorities on autism research, and if Congress passes the Autism CARES Act of 2024, the committee will have to sketch out a strategic plan for how to spend hundreds of millions of federal research dollars on autism.
In recent years, the committee’s composition has more accurately reflected the diversity of autistic experiences, including adults, women, people of color and people who are nonverbal or have intellectual disabilities. More focus has been placed on research that investigates an autistic person’s quality of life. If Kennedy is in charge of HHS, he could handpick a leader for the Office of National Autism Coordination, which directs the IACC. How that might impact the future of federally-funded autism research is anybody’s guess.
“There’s many research priorities of the autistic community that are really underfunded and to tip the balance more towards causation would make that underfunding worse,” said Gross.
Still, Raymaker thinks Kennedy is starting out on “weak ground” and that there is a limit to the damage he could do to HHS research and programs into autism.
“You can’t unspill the milk. You can’t suddenly make a connection between autism and vaccines that literally isn’t there,” they said. “The federal government has control over what it plans, what it will fund, but they don’t have any control over what you find.”
Botha disagrees, and points to the past as proof.
After The Lancet published the infamous 1999 paper, the autism research field had to reckon with the flawed science. Stronger, more inclusive science emerged from its ashes, said Botha. There’s no silver lining about returning to that era, because disinformation has replaced misinformation that could easily go global.
“Regardless of whether anyone else in the world wants them to, the U.S. is seen as a leader. They’re seen as the thing we should be aspiring to. By taking those steps, it also emboldens all these movements in other countries.”
The global implications of this misinformation are always top of mind for Giwa Onaiwu, a first-generation immigrant whose family hails from West Africa, from Nigeria and Cabo Verde. They’re trying to chart the best future for their son. A place where he doesn’t have to spend his teenage years worrying how an autism diagnosis could haunt his future.
“Do we need to send you to some cousins in Western Europe? Do we need to send you to the great auntie you’ve never met in Canada? Do we need to try to send you to Cabo Verde or Nigeria?” said Giwa Onaiwu. “I’m trying to think about what their adulthood will look like, because I can’t, I don’t know what the future will hold.”