BILLINGS — A recent claim by President Donald Trump linking the use of acetaminophen during pregnancy to autism is raising concern among parents and medical professionals in Montana, who warn the claim lacks scientific support and could be harmful.
During a press conference last week, Trump, along with Health and Human Services Secretary Robert F. Kennedy Jr., described autism as an “epidemic” and referenced studies suggesting a potential link between prenatal use of acetaminophen, the active ingredient in Tylenol, and autism spectrum disorder (ASD). They blamed the drug for the rising rates of autism diagnosis.
Watch how a Billings mother reacts to Trump’s claim linking acetaminophen to autism:
Billings mother and doctors weigh in on Trump’s claim linking acetaminophen to autism
He also announced that the Food and Drug Administration (FDA) would issue new warnings to physicians and consider updating safety labels for the drug.
But doctors and medical researchers warn that the current body of scientific evidence does not support a causal connection between acetaminophen use in pregnancy and the development of autism.
“(Autism) really should be thought of as a condition affecting social communication interactions, but this can present in lots of different ways, so it can’t really be simply explained,” said Dr. Patricia Notario, a pediatrician at Billings Clinic who works closely with children with special needs. “There’s not one thing that we can, let’s say, blame for causing an autism spectrum disorder.”
For Catelyn Wilson, a Billings mother whose 8-year-old son, Elias, is on the autism spectrum, the conversations surrounding the disorder concern her.
“It kind of upsets me a little bit. I don’t like that a diagnosis my son has is villainized,” said Wilson. “They don’t need to be fixed. The idea of wanting to put a band-aid on something that makes somebody human and get rid of it, all of that scares me, frankly.”
Related: ‘We’re all humans’: Billings disability group responds to Trump’s autism remarks
Elias was diagnosed with autism and speech apraxia as a toddler. Wilson said her son lives a full life and enjoys Sonic the Hedgehog, Minecraft, and Legos just like any other child his age. She couldn’t imagine her son’s characteristics any other way.
“I just think that people with ASD look at the world in a really pretty beautiful way,” said Wilson. “I want to cry when I talk about him sometimes, but I think that Elias is an extremely loving personality.”
Isabel Spartz/MTN News
Wilson worries about the misinformation and potential harm surrounding the claims. As Wilson said she never took acetaminophen during her pregnancy, she worries that the statements about the drug could lead to unnecessary guilt placed upon mothers.
“I can’t imagine being pregnant or having a child, newly diagnosed with a baby, and sitting there thinking, ‘Did I give my kid autism?’ It’s putting the blame on the mom. You’re not at fault for any of it,” said Wilson.
According to Notario, autism is a complex disorder, known to be influenced by genetic and environmental factors, and cannot be pinned down to one cause.
“I think it’s important to know that decades of research have already gone into looking at causes of autism, potential treatments for autism, and what we have found so far is that it is a complex cause,” said Notario.
She and other doctors continue to advise patients with guidance from the American Academy of Pediatrics, which issued a statement last week that the president’s claims were “dangerous” and “misleading.”
“If there are recommendations that maybe come out that are not based on rigorous scientific evidence, that’s misleading, and that can be really dangerous for families,” said Notario. “They may, A, lose focus on what treatments are recommended, and B, potentially put their child at harm if we don’t have complete information about a potential treatment.”
Acetaminophen is one of the most commonly used over-the-counter medications for pain relief and fever reduction, and is commonly used in pediatrics to care for fevers or pain within the first six months of life. It has also been considered one of the only safe options for use during pregnancy by leading medical organizations, such as the American College of Obstetrics and Gynecology and the Society for Maternal-Fetal Medicine, for decades.
“The recommendations have been and remain that there is a benefit and safety to using acetaminophen in pregnancy,” said Dr. Jennifer Thompson, an OB-GYN at Billings Clinic. “We advise them that there is no study to date that shows a causal relationship between moms taking acetaminophen for pain or fever reduction and neurodevelopmental outcomes in their kiddos.”
Jae C. Hong/AP
President Trump also said that there was “no downside” to not taking acetaminophen during pregnancy, and that mothers should “tough it out” if possible. Thompson emphasized that untreated fevers during pregnancy can increase the risk of severe health risks in both the child and mother.
“If we don’t treat a fever, a mom has a risk of miscarriage, preterm labor, the baby can have neural tube defects or cleft lips. Untreated pain, as we know, can lead to anxiety, depression, alterations of maternal physiology and fetal physiology,” said Thompson.
Trump also suggested the FDA would approve leucovorin, a byproduct of folic acid sometimes used in cancer treatment, as a potential autism therapy. Notario said that while the medication has shown limited promise in small studies, the evidence is inconclusive and not strong enough to support widespread use.
“It has been studied, but in small studies and in studies that measured different effects and different doses, so not generalizable,” said Notario. “That’s what could be misleading, is if we point to leucovorin without really having strong scientific evidence, that could be harmful to families and to the children.”
Both physicians said more research into autism’s causes and treatments is welcome and necessary, but caution that any guidance should come from highly trusted, science-based institutions. They agreed that new mothers should have conversations with their providers first to see which options are best.
“It’s important when we think about autism spectrum disorders to realize that there are people behind these diagnoses, and that this does not have to be something negative,” said Notario. “We should be doing research on these topics, and we have been doing research, and we should continue to do more.”
“It’s really important that patients have access to the most up-to-date evidence-based information, and patients don’t have the ability to sort through all of that evidence themselves,” added Thompson. “It’s important for us as professionals to be up-to-date and to be able to give them that kind of information.”
For Wilson, the issue is about respect, accurate information, and thoughtful conversations.
“I’m not going to listen to somebody who’s never had to deal with the hurdles of ASD and telling me that I’m doing it wrong,” said Wilson. “I don’t like that there’s this mistrust with medicine right now. I’m going to always believe a healthcare worker over a government official at this point … I think it’s just causing panic and fear, and nothing good comes from panic and fear and chaos.”
While she recognizes that the disorder is experienced differently for everyone, she wishes funding could go towards diseases that could be possibly cured.
“If we’re going to put money into fixing cures, let’s throw that at cancer,” said Wilson. “Autism doesn’t shorten his lifespan. It doesn’t give him an autoimmune disorder. It doesn’t give him anything that’s going to harm him in the long run compared to these other things that we could put our money towards.”
Despite her concerns about the president’s claims, Wilson said she is proud of Elias and will continue to advocate for what is best for him.
“It’s very overwhelming sometimes,” said Wilson. “But again, it’s an incredible thing, and I’m happy to have a child with ASD.”
Related: Trump links Tylenol in pregnancy to autism despite contested science