And now she 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 Monday, as President Donald Trump and his health secretary, Robert F. Kennedy Jr., launched a broad offensive against the mainstream understanding of the condition, including telling pregnant women to resist using Tylenol, despite 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 $50 million to study the causes of autism, with Trump and Kennedy both pointing toward 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 Monday 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 Monday 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.
On Monday morning, 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.”
Jonathan Gardner, the man who texted his mother to ask about her Tylenol use, 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 toward people with autism, which Trump on Monday 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 years old, and providing other support for people with disabilities.
“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 middle school.
But Russell Lehmann, 34, who works as a disability advocate at UCLA, said he would appreciate a treatment to reduce some of the behaviors that he exhibits, such as sensory overload or the need for a rigid routine.
Lehmann said he had to drop out of his middle school because he did not receive the support he needed for his autism, an experience he described as isolating. But while he appreciates more money for research, he was dismayed by the way that Trump and Kennedy talk about autism.
“Personally and professionally,” he said, “it’s very disheartening.”