Even before the 2024 presidential election, Claude Willan and his family feared that Donald Trump would return to the White House. Particularly, it made them worry for their boys, both of whom have a diagnosis of autism spectrum disorder.
In July, he got a job at Durham University in the United Kingdom and his family emigrated. And that came before Trump nominated Robert F. Kennedy Jr., who had spent years promoting the idea that vaccines cause autism, to be his secretary of Health and Human Services.
“As a preschooler, our older son got excellent services,” Willan told The Independent. Willan had lived in the United States for 17 years and had spent the last two in Philadelphia while a professor at Rowan University in New Jersey. Pennsylvania provided five free therapies a week, including occupational therapy and gross fine motor play therapy and two speech therapies.
But staying here proved to be too much of a risk for Willan and his family as Trump and Kennedy have spent much of their first months in office talking about the need to research the “autism epidemic.” On Monday, the two made an announcement linking autism with the use of acetaminophen, a pain reliever and fever reducer commonly known by the brand name Tylenol, during pregnancy.
Willan said he fears that autistic people will be subjected to a registry.
“There’ll be financial incentives so that eventually it will be that to keep your autistic kid at home with you, you’ll need to be very rich and white and a boy in America,” he said over Zoom. “That’s a worst-case scenario, but I think there’s enough of a chance of that happening to take it seriously.”
But Willan is not alone in this. One father in Colorado who is neurodivergent himself and asked to speak on the condition of anonymity, said he is fearful of getting his children screened. His eldest child has an individualized education plan, known in schools as an IEP, for attention deficit hyperactivity disorder, but the father said he fears getting him screened for autism.
“It’s really tough being an autistic parent of an autistic child, just because, like, I know what’s going on with him, I have this whole life experience of like, you know, struggling with it … until I’m finally, like, as an adult at 33 finally, like, put the pieces together,” the father told The Independent.
“It’s kind of like what’s best for him may not be getting supports he actually needs — getting him the autism diagnosis and having whatever those doors open to,” the dad said.
“What’s best for him now is to kind of hide it.”
I can’t help but think of my own experience as an autistic person. I was fortunate. My family began the formal diagnosis of me for what is now considered Asperger’s syndrome, which would be folded into the larger autism spectrum disorder (ASD) diagnosis, in the 1990s.
This came right as the diagnostic criteria expanded and improved services thanks to legislation like the Individuals with Disabilities Education Act, something that caused the number of cases of autism to spike, but led some, like Kennedy, to postulate that America had experienced an autism “epidemic.”
I joke that my mom is too young to be a refrigerator mother — the stereotype of the cold, unloving mother whom society blamed for their children becoming autistic — but too old to become a crunchy, anti-vax mommy blogger.
I was even more fortunate given that most kids didn’t know what autism was. Still, I heard the “r-word” thrown around casually. In fourth grade, the special ed program I used was called RSP. One classmate called it “really stupid people.” To this day, I don’t remember what the initials actually stood for.
But this next generation of autistic people will not be as fortunate.
They will likely face worse stigma and blame than any other generation. If any mother mentions their child is autistic, their peers and friends on social media will subject them to ridicule or ask if they took Tylenol during their pregnancy. Trying to relieve pain will be equated with being a bad mother.
The father in Colorado told me that they are not even considering a screening for their younger child.
“We’re just like, she’s manageable, she’s not having quite the struggles that her older brother is,” he said.
“And you know, again, it’s like it’s probably not what’s best for her, but with the unknown in the near future or the long-term future, it’s kind of like our precautions are like leaving it internal to our family by not getting a paper trail, not giving them database entries to run through grok or whatever.”
Going through the diagnostic and screening process is arduous in and of itself. It often requires hours of evaluation and can go on for more than a year. But it often means the world because having that piece of paper gives students access to supports for IEPs in school and accommodations elsewhere.
“I had chosen not to get him tested for autism previously because he was, quite frankly, exhausted from the months of other tests he’d endured,” one mother in New Jersey told me. “We had just started considering getting him tested late last year and I’m so glad we didn’t move forward.”
Of course, we do not know what will happen. The least-bad scenario will be that Kennedy and Trump will use this simply to promote misinformation about the numbers around autism. I personally remain skeptical that this will lead to a mass-scale rounding up of autistic people.
But you do not need to believe that autistic people will go to internment camps to worry about their fate. My biggest fear is that the Trump administration will use this as a rationale to promote bunk cures around autism. It will also lead to a rollback in progress for autistic people.
“I have had parents have discussions with me about worrying about making the decision for their child to come in and get an evaluation, and then for that information to be on any record or public record or submitted elsewhere for the government,” said Dr. Anne Krasno, the clinical director at the University of California Santa Barbara’s Koegel Autism Center, said.
“And so there can be this really difficult tension that the parent is holding between wanting to get help and support for their child, and then also the increased perceived stigma around autism.”
Back in Durham, across the pond, Willan said that his older son doesn’t get as many provisions as he would once he started going to school.
“Our younger son gets some provision as well,” he said. “They’re both getting more than they would get, yeah, but less than they need.”
We don’t know the full consequences of Trump and Kennedy’s fear-mongering. And we might never. If parents skip their children being diagnosed, we will likely have an entire invisible and lost generation of autistic people.
These ghost autistic people will be the legacy of RFK Jr. that haunts America for generations.
