US President Donald Trump speaks at an event about autism in the White House with Health and Human Services Secretary Robert F. Kennedy jnr. Photo / Tierney L. Cross, The New York Times
Sitting on the couch a few weeks ago watching television, Jonathan Gardner saw something that made him text his mother immediately.
“Weird question,” he typed. “Did you take Tylenol at all when you were pregnant with me?”
He had seen a news report about a scientific review finding a possible correlation — though not a causal link — between the use of acetaminophen during pregnancy and a higher incidence of neurodevelopmental disorders.
Gardner, 22, a local advocate in East Bridgewater, Massachusetts, was diagnosed with autism before he turned 2.
His mother, Nancy Gardner, replied that she didn’t take acetaminophen — the active ingredient in the painkiller Tylenol — during pregnancy.
And now she was worried that a focus on the decisions of mothers would create unnecessary guilt for parents.
“It’s no one’s fault” when a child has autism, she said in an interview.
That’s something that many people with autism and their families were repeating yesterday, as United States President Donald Trump and his health secretary, Robert F. Kennedy jnr, launched a broad offensive against the mainstream understanding of the condition, including telling pregnant women to resist using Tylenol, despite conflicting evidence and a lack of proof it causes autism.
“Don’t take it,” Trump said in a White House briefing where he also delivered flawed medical remarks about vaccines and other science on autism, including urging women to “tough it out” when in pain rather than using acetaminophen. “Fight like hell not to take it,” he said.
The Administration pledged to invest US$50 million ($85m) to study the causes of autism, with Trump and Kennedy both pointing towards a possible connection with childhood vaccines.
No link has been found despite decades of study, and mainstream scientists overwhelmingly agree that autism is a result of a complex mix of genetic and environmental factors that can’t be attributed to a single cause.
Likewise, medical groups quickly rebutted the President’s warnings about Tylenol, defending acetaminophen as a safe treatment for fever in pregnant women, although it is not recommended for long-term use.
Karen Kossow, 47, of Boise, Idaho, is a mother of two children with autism.
She took Tylenol during both of her pregnancies to mitigate the pain from Ehlers-Danlos syndrome, a connective tissue disorder.
She said urging pregnant women to avoid the painkiller when no link to autism has been proven could be harmful.
“Having a fever while you’re pregnant can be dangerous,” she said. “Having pain while you’re pregnant can be dangerous.”
Kiara Coleman, whose 12-year-old son Keenan has autism, said she did not take Tylenol when she was pregnant, but she thinks it’s important for mothers to know about the potential risks that could come with medication during their pregnancy.
“I just feel that doctors in general need to let parents know: ‘Hey, I know you’re in pain, but I wish I could give you something that’s not going to hurt you or the baby’,” she said.
The Food and Drug Administration was far more circumspect than the remarks made by Trump and other top health officials, issuing a letter to doctors that noted, accurately, that “a causal relationship has not been established” between acetaminophen and autism.
It stated that the matter is “an ongoing area of scientific debate”.
Several people with autism said in interviews that while they support more funding for autism research, they have trouble trusting the Trump Administration and are worried about its messages that contradict health experts.
“This Administration seems to care a lot about autism as a supposed epidemic,” said Colin Killick, the executive director of the Autistic Self Advocacy Network. “It does not seem to care much at all about autistic people.”
The messages about Tylenol can be especially confusing.
Emily Sokolowski, who most recently worked with the Autism Society of America, saw it firsthand this week when her brother Adam, 32, who has autism, tested positive for Covid-19.
Yesterday, when their mother suggested he take Tylenol to ease his symptoms, he was reluctant because of what he had seen online. “I can’t take Tylenol,” he told her, according to his sister. “It’s going to make my autism worse.”
Gardner said it made him nervous that officials seem to be looking for “something to blame without data and proof”.
He added that some comments from Administration officials — including Kennedy, who said in April that autism “destroys families” — have led to increased stigma towards people with autism, which Trump yesterday called a “horrible, horrible crisis”.
“There is definitely much more fear about autism,” Gardner said, adding that the Administration was treating it like a terrible disease, “instead of an intellectual disability”.
Jordyn Zimmerman, 30, an autistic woman who communicates through augmented methods instead of speaking, said she would rather see the Administration focus on expanding such technology, which she did not have access to until she was 18, and providing other support for people.
“When the Administration focuses on things like this,” Zimmerman said in an email interview, “it draws attention away from the things we actually need.”
Lizzy Graham, 36, agreed.
“Autism doesn’t need a cure,” said Graham, a social worker supporting children with autism in Maryland. She was diagnosed when she was in intermediate.
Russell Lehmann, 34, who works as a disability advocate at UCLA, said he would appreciate a treatment to reduce some of the behaviours that he exhibits, such as sensory overload or the need for a rigid routine.
Lehmann said he had to drop out of a school because he did not receive the support he needed for his autism, an experience he described as isolating.
While he appreciates more money for research, he was dismayed by the way that Trump and Kennedy talk about autism.
“Personally and professionallyit’s very disheartening.”
This article originally appeared in The New York Times.
Written by: Sonia A. Rao
Photographs by: Tierney L. Cross, Eric Helgas
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