Dr. Jennifer Avegno’s cellphone has been blowing up all week, with texts from other parents and colleagues asking, “What the heck? This doesn’t seem right,” she tells Yahoo.
The texts are in response to a Sept. 22 White House press conference in which President Trump and Health Secretary Robert F. Kennedy Jr. promoted unproven claims that taking acetaminophen — the active ingredient in Tylenol — during pregnancy raises autism risks.
Avegno is the director of the New Orleans Health Department. She’s also an emergency physician and mom to a 23-year-old autistic son. So she’s a go-to source of information for other families of autistic people, fellow doctors and her city at large. Avegno knew the press conference — and these questions — were coming. So she made sure to familiarize herself with the research so “I could say, ‘Yeah, this is not what the research says,’” explains Avegno. But Avegno suspects that many people will want to take U.S. officials at their word and avoid Tylenol. “I don’t want to throw the baby out with the bathwater” and tell people to disregard their top-ranking health administrators, says Avegno. “But there’s really a lot of nuances and problems with the study [linking Tylenol to autism], and there are a whole bunch of studies that refute it.”
She adds: “I really want to make sure that people understand what was said, why it was said and then maybe why it’s not the whole story.”
Autism is complicated, from its causes to what makes life more manageable for the millions of diverse people worldwide who have the condition and their families. Avegno and three other doctors, who spoke with Yahoo and who are also the parents of children on the spectrum, know this firsthand.
‘Simplistic thinking that causes a lot of damage’
When Dr. Peter Hotez’s daughter, Rachel, was diagnosed with autism more than 20 years ago, his wife, Ann, who is also a doctor, immediately wondered if she was to blame. “Her first response was, what did she do wrong during pregnancy?” Hotez tells Yahoo. In an effort to answer his wife’s questions, Hotez, who is a pediatrician and dean for the National School of Tropical Medicine at Baylor College of Medicine, began researching everything he could find about the potential causes of autism. The result was his book Vaccines Did Not Cause Rachel’s Autism and a career in vaccine science and public advocacy.
Now, history seems to be repeating itself, he says. Hotez worries that the White House’s press conference and the Food and Drug Administration’s forthcoming recommendation against using Tylenol during pregnancy tells women “you’re doing something wrong with your pregnancy,” and the president shaking his finger at pregnant women saying “don’t do this” is not helpful at all, he says.
There’s a lot that scientists don’t know about autism’s causes. Hotez is concerned that the White House’s announcement may make it seem as though there is a definitive link between autism and Tylenol, when that’s not the case, he says. The strongest evidence suggests that about 80% of autism cases can be traced to inherited genetic mutations, but in some cases, environmental exposures during pregnancy may interact with those genes to increase risks. There are a few exposures that show strong links to increased risks of autism, such as taking the anti-seizure drug, valporate, during pregnancy. Hotez says that he once spoke with Kennedy and suggested that health officials further study this and other possible environmental factors in autism. “Instead, he veered toward something far lower down on the list” of possible contributing factors to autism, says Hotez.
He views the presentation of the link between autism and Tylenol as “simplistic thinking that causes a lot of damage,” he says. “Directly, it causes damage because we don’t have a lot of safe medications for women who have fevers or are sick during pregnancy,” aside from Tylenol. And fever itself, he points out, can put developing fetuses at risk for severe congenital defects of the spine and face. “Indirectly, it takes your eyes off the prize” of discovering the real complex causes of autism and assisting affected families.
‘We’re going back 20, 30 years’
Alex Pham, 22, is your guy if you want to dive deep into obscure indie music or find out how to draw a fractal or fold an origami dragon. He also reviews studies to help health care providers learn how to better accommodate people with autism, like him. Already, he’s seeing claims about Tylenol’s links to autism crop up in conversations on the Discord server where he likes to chat with friends. “The idea definitely has legs,” he tells Yahoo.
For Alex, the biggest frustration with the claim that Tylenol could be a contributing cause of autism is not whether or not that’s accurate but “the continued sense I get that [officials think] that the worst thing a child can be is autistic,” he says. “That [a pregnant woman] would rather go through months of pain for no reason other than the chance of [not] having an autistic child.”
Alex’s mother, Dr. Hoangmai (Mai) Pham, is also frustrated by the focus on “cause and cure,” which “don’t help a person [with autism] live their best life,” she tells Yahoo. Pham, formerly an internist and health policy specialist with the Centers for Medicare and Medicaid Services, founded the Institute for Exceptional Care, which focuses on improving health care for people with intellectual or developmental disabilities. Pham and her colleagues wonder if the Trump administration has consulted the autism community about their needs. “It seems more like officials “have a hammer and are looking for a nail,” she says. “The thought [that Tylenol would be a significant factor in autism] was just eye-rolling. We’re going back 20, 30 years, to blaming mothers and potentially putting pregnancies at risk,” she adds. “There is so much opportunity cost in throwing out the red herring of Tylenol.”
‘As a parent, this saddens me’
Dr. Christopher Allen is a neurologist specializing in sleep medicine. He sees many autistic patients in his practice, and his eight-year-old son, Anthony, is on the spectrum. Allen knows all too well that, even with a scientific background, seeds of doubt can easily take root in the parental mind. Before Anthony’s diagnosis, “as a pediatric neurologist, autism was on my radar, but I was playing the role of dad at the time,” and didn’t fully register his son’s symptoms. “It’s funny how you can have blinders on as a parent.”
Anthony is full of light and kindness, Allen says, adding that his son will get upset if someone else is having a bad day or if he sees an unhoused person on the street. Allen considers himself “blessed and fortunate” to get to raise Anthony, but shares that he felt both relief and grief — and finally, acceptance — when he got his son’s diagnosis. Allen worries that the unproven claim that Tylenol is a cause of autism may disrupt that process for families — especially for mothers, who may see this as a new reason to blame themselves. “As a parent, this saddens me,” says Allen. “Not only are you giving us accusations without the data … it’s making it harder for parents and family members with autism. They’re trying to get to acceptance and doing what they can to help their child.”
As a medical provider, “It’s my job to do no harm … and to look at the data,” says Allen, who points out the study cited by the White House shows a possible correlation between Tylenol and autism — not that Tylenol causes autism. “I’m OK with people asking questions, wondering about correlation,” Allen says. “But the one thing I have not heard is support for families with autism.”
