Trump's Tylenol guidance for pregnant women: Parents react with mix of concern and gratitude

Parents of autistic children on Long Island reacted with a mix of gratitude and concern over the Trump administration highlighting a possible connection between autism and the prenatal use of acetaminophen, the active ingredient in Tylenol.

Some praised the promise of additional funding for research into autism's causes and attention on the disorder, which affects an estimated 1 in 31 children at the age of 8 in the United States, according to the Centers for Disease Control and Prevention.

Others were angry with President Donald Trump’s tone and message — which went well beyond his own health officials' guidance — that pregnant women with pain and fever should not take Tylenol unless they are unable to "tough it out." 

The research is divided as well, with some studies saying there may be an association between pregnant women who took acetaminophen and autism in their children but stopping short of saying it is a cause. Others have concluded there is no correlation between the two. Almost every national medical society has said it remains the safest pain reliever for women to use — with caution — during pregnancy.

"It kind of bothers me because ... [Trump] didn't seem to have a lot of information supporting what he was saying," said Patti Verity, of Mattituck, whose 34-year-old son, Kyle, has autism. "If they stop taking that, what are they going to do?" 

Meanwhile, the president's strong words against pregnant women using Tylenol could leave some who took the drug while pregnant feeling guilty, Verity said.

"I’d like to think that most women are smart enough and see that there is really not a lot of evidence," said Verity, who didn’t recall taking the pain medication during her pregnancy. “At least some of them are going to feel guilty and a lot of them are going to wonder."

Verity said while it’s important to keep autism in the spotlight, "I’m not sure they are shining the best light." 

She likened research into the complex world of autism to a puzzle.

"You put it together one way, it looks like one thing and you put it together another way, it looks like something else," Verity said. "We just don't know enough."

Evelyn Ain, of Oyster Bay, who has spent years advocating for autistic students to get better educational services, said the announcements about more research, warning labels and messages to doctors were "amazing."

"This is going to completely open the doors wide open to further conversation," said Ain, whose 25-year-old son has autism. She helped found the group Autism United and started the magazine Spectrum, focused on families with autism and other developmental disabilities. "No one has been talking about any progression of the disease in 20 years."

Ain said she thinks warning labels and research should also focus on any impact acetaminophen may have on young infants, noting her son often spiked a fever after getting his childhood vaccination and was treated with the drug.

Fevers are a common side effect of vaccination, according to the Children’s Hospital of Philadelphia’s Vaccine Education Center. They also serve as evidence that the child’s immune system is responding to the vaccine and building immunity.

John Gilmore, of Long Beach, who heads the Autism Action Network, said Trump "has pointed us in a revolutionary new direction."

Gilmore, whose son Luke, 25, has autism, said most of the research on autism has focused on genetic causes rather than environmental factors. He has been a strong opponent of vaccine mandates.

"This will just be the first of what will be a steady stream of dramatically different findings on autism, the environment and vaccines," Gilmore said.

Major medical groups, including the American Academy of Pediatrics and American Medical Association, have noted that studies over decades and widespread scientific consensus have concluded there is no link between autism and vaccines.

John Beyer said he and his wife, Amy, tried many therapies when his son, Greg, 33, was diagnosed with autism as a child. Because it is a complex condition likely caused by both genetic and environmental factors, he dismissed early claims from the White House that they would find the cause of autism in a matter of months as "hype."

"As a parent, you search high and low for the cause and the cure," said Beyer, a longtime advocate who lives in Port Washington. "To still get distracted by this Tylenol claim without any substantive data behind it really, as a parent, disgusts me."

The couple has spent years raising awareness and funds for autism research and services. Beyer said scientists all over the world are trying to understand autism and work on treatments. The focus should be on other factors rather than a possible link to acetaminophen that already has been studied and found not to be a direct cause of autism.

"If they find the cause or the cure for this, more power to them," Beyer said. "I’d love to be wrong."

By Lisa L. Colangelo

lisa.colangelo@newsday.com@lisalcolangelo

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.