Missouri IndependeNT: Missouri autism specialists say White House assertions on cause, treatment need more research

Missouri autism specialists say White House assertions on cause, treatment need more research

by Steph Quinn, Missouri Independent
October 1, 2025

David Tomber-Young, 9, of St. Louis, has always been musical and expressive. 

According to his mom, Lizzy Tomber, he can sing the theme song to his current favorite movie, “K-Pop Demon Hunters,” from memory, including the parts in Korean. And when he watches movies, he has a knack for imitating the actors’ facial expressions.

But David, who along with his three younger brothers has been diagnosed with autism, struggles with some aspects of verbal communication, like answering open-ended questions and talking about the past.

Tomber said David has had “really huge progress” since he began taking a medication prescribed by his doctor in May: leucovorin.

“Before, you would really have to be like, number one or number two, and kind of give him a couple of choices,” Tomber said. “Right now, he’s talking more at school and, I think, talking about what he did last weekend or what he wants to do tomorrow.”

Leucovorin was at the center of statements by President Donald Trump and top federal health officials on Sept. 22 about the causes and treatment of autism spectrum disorder. Officials endorsed the use of leucovorin, which is used to treat side effects of chemotherapy, as an autism therapy. They also asserted a link between autism and pregnant mothers’ use of acetaminophen – the active ingredient in the pain and fever reducer Tylenol.

Specialists across Missouri urged caution around the claims from the White House last week, advising parents to consult their doctors and underlining the complexity of factors that influence autism.

Doctors said that scientific research on Tylenol and autism is inconclusive, while noting the importance of treating maternal fevers and pain.

“Your specific health care needs are best addressed with your physician,” said Dr. Benjamin Black, medical director at the Thompson Center for Autism and Neurodevelopment at the University of Missouri. “You want to appropriately treat illnesses and fevers during pregnancy, and whatever that needs to look like in your pregnancy is a discussion to have with your care provider.”

Leucovorin is a form of vitamin B9 that limited studies have suggested can boost verbal communication in individuals with autism. The “hypothesis,” said Dr. Gregory Cejas, co-director of the Washington University Autism Clinical Center, is that some people with autism have an autoimmune reaction that prevents the uptake of folate in the brain – and that leucovorin can help.

“I think what we don’t know,” Cejas said, “is that a true hypothesis? So we have to test that more. We have to, I think, do bigger studies on those things.”

Tomber said that while she thinks leucovorin, along with speech therapy and his teachers’ support, has helped David, it isn’t a “miracle drug.” Two of Tomber’s younger sons, who are mostly nonverbal, tried leucovorin and stopped due to possible side effects.

“They’re obviously frustrated that they can’t communicate, that they can’t get their point across,” Tomber said. “If I can give them a tool to do that better, of course I’m going to do it.”

‘We don’t want to put blame on our families’

Jenny Shank, of St. Louis, said Trump’s assertions pulled her back to her self-doubt in the early days of her now 17-year-old daughter’s diagnosis with autism.

Trump urged pregnant women to endure pain and “fight like hell not to take” Tylenol, except in cases of high fever.

“As a woman, I think you go back so many times,” Shank said. “Even though you’re so grateful for your child and you wouldn’t change them, you still go back and you think, ‘Was it this? Was it that?’”

Cejas said that as researchers work to learn more about autism, it’s important not to “put blame on our families.”

“I think a lot of parents ask me, ‘Is it something that I did?’” Cejas said. “And my usual answer is no, there’s nothing that you did specifically. There is no way to predict anything that you did in your pregnancy or otherwise that led to this point.”

Michelle Trupiano, executive director of Beacon Reproductive Health Network, formerly the Missouri Family Health Council, said misinformation, including around Tylenol, sows uncertainty and distrust.

“It just causes confusion for folks that is going to trickle down into continued confusion for patients over who they can trust, who they can go to for accurate information,” Trupiano said.”

Zachary Moser, administrator at the Dent County Health Center in rural southwest Missouri, said his office doesn’t plan to make any changes following the president’s remarks on Tylenol.

Moser, who is also a pharmacist, said a letter published Monday by the Commissioner of Food and Drugs offered a “reasonable” and “substantially different” message from Trump.

“It just uses the common sense principles that we use in medicine all the time,” Moser said. “Use the lowest dose for the shortest amount of time as possible. That applies to everything we do.”

The letter ended by describing acetaminophen as “the safest over-the-counter alternative in pregnancy” to aspirin or ibuprofen, which “have well-documented adverse impacts on the fetus.”

As of Friday, Moser saw some chatter about Tylenol online but had not yet been approached by many in his community for guidance on taking the medication. 

‘No single medical treatment’

Black, the medical director from the Thompson Center, said that because autism can’t be traced to any single cause or pathway in the brain, “no single medical treatment will be the answer for all patients and families.”

Though leucovorin appears to present minimal risk, Black said, there are no safety studies specific to patients with autism, and tests for the type of folate deficiency the drug may treat can be expensive or rely on scant data.

For now, Black said he is taking “a relatively cautious approach” to leucovorin.

Shank said that she will likely ask her daughter’s doctor about leucovorin. She wishes she could take away some of her daughter’s struggles, but she isn’t looking for a cure. 

“I don’t think that autism is something that needs to be cured,” she said.

Looking back on her family’s journey, Shank said she wants parents of children with autism to feel empowered to reach out to other families, because “most other families, they get it, they understand.”

“Go out of your comfort zone to fight for your child and advocate for them and create opportunities for them,” Shank said, “and give them the tools they need to succeed.”

YOU MAKE OUR WORK POSSIBLE.

SUPPORT

Missouri Independent is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Missouri Independent maintains editorial independence. Contact Editor Jason Hancock for questions: [email protected].