On Tylenol causing autism: A Spokane mother’s concern with Trump’s claim

Holly Goodman didn’t take Tylenol during her pregnancy with her son, Isaac.

“I never took acetaminophen because I had fertility issues and I was so worried I was going to miscarry again, right? So I never took a thing. I was eating organics. I was doing all the things because I was so wanting this child,” she said. “And guess what? He had autism.”

Goodman was not arguing that her experience could be applied to that of all parents of autistic children, but rather was intending to highlight that there are a number of genetic and environmental elements at play when it comes to a child’s development.

Sunday, she learned that President Donald Trump and Health Secretary Robert F. Kennedy Jr. planned to announce that acetaminophen, the active ingredient in Tylenol, is associated with increased risk of an unborn child developing autism if taken by a pregnant woman.

“So, taking Tylenol is not good, all right? I’ll say it. It’s not good,” Trump announced Monday. “For this reason, they are strongly recommending that women limit Tylenol use during pregnancy unless medically necessary.”

Goodman’s son Isaac died in his sleep just a few weeks shy of his fourth birthday, inspiring her to create the Isaac Foundation in Spokane – a nonprofit support organization for families with autistic or developmentally delayed children. She has two living sons, Cooper and Caleb, both also with autism. When Isaac was diagnosed, Goodman said she was filled with guilt over the thought of having done something wrong, only finding some peace years later.

“I’ve really been able to give myself grace in the sense that there are genetic factors that are at play. There’s environmental factors that are at play,” she said. “There’s not one single cause of autism, and so it’s hard because there’s going to be some parents out there that are going to listen to this – moms that gave birth – that are going to say, ‘Oh my God, this was my fault.’ And that breaks my heart, because that’s a lot to hold on to when you’re raising this loved one.”

Coming months after a cabinet meeting promise by Kennedy to determine at least some of the causes of autism by September, the announcement has been met with concern from many involved in autism education and research.

The Food and Drug Administration released a statement to physicians after Trump and Kennedy’s speech, noting that while some correlative studies show a link between autism and mothers taking acetaminophen, there is no proven causal relationship.

“The association is an ongoing area of scientific debate and clinicians should be aware of the issue in their clinical decision-making, especially given that most short-term fevers in pregnant women and young children do not require medication,” the statement reads.

While grateful for the national attention given to autism spectrum disorder in the wake of the administration’s search for a cause, Annette Estes, director for the Autism Center with the University of Washington , has “a concern that people are going to become confused and wonder who they should trust and where they should go for their information about their health.”

Acetaminophen is one of few pain medications doctors advise women can take safely while pregnant, Estes said.

Further, Estes said she has concerns that “focusing in on something as narrow and as poorly researched as Tylenol – that seems to be missing a lot of the potential progress we could be making.”

There are a handful of studies investigating Tylenol’s connection to autism, she said, but the low number of studies and generally inconclusive consensus between them makes her think there isn’t enough data to make public health statements. She shared a similar sentiment when it comes to leucovorin, an essential B vitamin which the FDA will be moving to approve as a treatment for autism.

“All of us who work with autistic people know that it just doesn’t make sense that you could just do one small intervention that’s on the medical level like this and make a giant difference in a kid’s life because we know that we’re talking about development, and we’re talking about development over time,” Estes said. “This is not something that just happens with a little medical something, like a vitamin.”

In her personal research into the genetic causes of autism, Estes said that hundreds of genes are associated with autism, each with varying severity, along with a similar number of nongenetic factors such as premature birth or drug use while pregnant.

“None of these things are 100% that if you have X then you will definitely end up with autism, because it’s just a very complicated, multifactorial outcome,” she said .

Goodman said knowing a cause for the disorder is not as helpful for those who’s “ship has sailed” already.

“It doesn’t help me to know what caused Cooper and Caleb’s autism. What I needed to know is that there were programs out there that are well-funded and supported by our legislation so we can give them all the opportunities that they deserve because right now, it’s very dismal,” she said. “Especially now, because there’s even other cuts in other areas that are going to impact our loved ones. So (supported programs) is what I would like to see.”

In July, the Trump administration cut billions in grant funding to universities researching health and science, including at least five awards for autism research.

Apart from strictly health care, Goodman said that she “can just see all the million memes” about Tylenol causing autism that will be made following the announcement, “and it’s just really hurtful.”

Family members at the Isaac Foundation sometimes say “if there was something I could do to improve their quality of life so that this isn’t so hard for them, I would do it in a second,” Goodman said, also saying she would love to improve the quality of life of her profoundly autistic son, Cooper. However, Goodman also cautions about the dangers of trying to “fix” a whole group of people: her other autistic son, Caleb, is “very capable,” able to drive cars, have hobbies and make friends.

“For some, autism is hard and they’re so uncomfortable and they’re injurious in so many different ways. Their world is very limited,” she said. “But for others, they have a beautiful life. They’re loved. Their world is complete, although it may be small, and they’re living their best life, and so I think we have to be real sensitive to that, too.”

She said that in some cases, mild neurodivergence is “what creates individual differences for each one of us,” comparing it to the way that she isn’t any ‘less than’ for having dyslexia.

More than anything though, Goodman doesn’t want other parents to believe they caused their child’s condition following Trump and Kennedy’s proclamation.

“My biggest fear is that parents just feeling like they have some culpability in the fact that their child has autism,” Goodman said. “If you’re feeling like that is hitting you hard, reach out to people and find your support network.”