On Monday, President Donald Trump and Secretary of Health and Human Services Robert F. Kennedy Jr. finally made their long-anticipated announcement advising pregnant women not to take Tylenol. They made this announcement even though the evidence of a link between autism and acetaminophen, the active ingredient in Tylenol, is thin and the biggest study about the two showed that “use during pregnancy was not associated with children’s risk of autism, ADHD, or intellectual disability in sibling control analyses.” Even his own FDA’s statement Monday that acetaminophen “can be associated with a very increased risk of autism” carried significant caveats, including that “a causal relationship has not been established.”
On top of making this sweeping claim without proof, Trump —alongside Kennedy, Food and Drug Administration Commissioner Marty Makary, National Institutes of Health Director Jay Bhattacharya and Centers for Medicare and Medicaid Services Director Mehmet Oz — added lie after lie. He said that autism doesn’t exist in Cuba (it does and it has at least nine autism schools, and one study showed that Cuban teachers know as much about autism as their peers in other countries). And he repeated the debunked claim that vaccines lead to autism.
Beyond the blatant misinformation and willful ignorance, perhaps the biggest danger is how, within just one news conference, Trump and his administration have virtually erased 30 years of work to promote autism acceptance. For much of the past century, autism suffered from profound misunderstanding. People blamed autism diagnoses on everything from unloving “refrigerator mothers” to vaccines. Only in the past few decades, largely thanks to the rise of autistic self-advocates and their loved ones, has society moved much more toward acceptance.
But Trump’s words erased this progress. He spoke, for example, about how one of his employees “lost” her son when she gave him a vaccine, developed a fever and then became autistic. These words treat autism as a sort of a loss in a certain way. They treat autism as a sentence worse than death and that mourning prevents their parents and loved ones from showing their children the love they need.
“When you describe persons having been destroyed, it means you’re breaking them off, they’re gone,” Colin Killick, the executive director of the Autistic Self Advocacy Network, told me in an interview before the news conference. “We have full, meaningful lives that are worth living, and we need to be listened to.”
But the fact of the matter is that parents have an autistic kid and they need to be focused on the kid they have in front of them rather than the kid they wished they had.
The words of those around Trump were little better. “If you’ve seen a kid with autism, with severe autism, it’s hard to watch,” Makary said. “Kids get frustrated, they get angry, they can be crying because they want to speak and they can’t speak. It’s hard to watch. And it may be entirely preventable.”
Nobody denies that autistic people who need substantial help with daily activities, especially those who do not speak or who have intellectual disabilities, face major risks. One study showed that autistic people with intellectual disabilities have about 2.8 times the mortality rate compared to people without those diagnoses. But by saying that autistic people’s worst episodes are “hard to watch,” the Trump administration is inherently devaluing autistic people.
Makary’s claim that autism might be “easily preventable” is especially risible when there is limited scientific evidence that leucovorin, the drug the Trump administration is touting, helps a small subset of autistic children. Just as the FDA caveated its press release about acetaminophen, Kennedy’s HHS cautioned that leucovorin is “not a cure” and “may only lead to improvements in speech-related deficits for a subset of children with ASD.”
In peddling this as a potential treatment, Trump, Makary and Kennedy are giving loved ones of autistic people false hope. It also will essentially write off assistance for autistic people for whom leucovorin will not work.
“I worry about what happens when these miracle cures fail to materialize, right? And families are left with these autistic children who they’ve been told are damaged goods?” Killick asks. “Because we’ve seen the result of these kinds of rhetoric around autistic people’s lives not being worth living. It’s filicide.”
I wish that I could say that Killick is exaggerating. But stories abound of parents who kill their autistic children because they are “overwhelmed.”
Already, the language from the White House is striking fear in autistic people. Liliya Wheatcraft, an autistic psychiatrist who lives in the United Kingdom, has two autistic children who are American citizens. But her eldest son said that he would never go back to the United States.
“My 16 year old said, ‘Well, I don’t know, but I certainly don’t wish to go there anytime soon,’” she told me over the phone. “There is some really dangerous rhetoric in the speech that made me honestly concerned about ever returning to the U.S. because I might be concerned for my friends.”
When I wrote my book “We’re Not Broken” in 2021, I mentioned Kennedy’s anti-vaccine nonsense only in passing and mentioned Trump’s past references because I figured it was in the rearview and his successful Operation Warp Speed of the Covid-19 vaccine must have changed his mind.
I was naive. Trump, Kennedy and his entire administration are rolling back decades of progress and hard work by autistic people to shift the narrative from fear to acceptance. And whereas in the past, anti-vaccine sentiment was a venture only for cranks, it now has a bigger megaphone in the form of the presidency. We will need decades to repair the damage.
This article was originally published on MSNBC.com
