Autism specialists dismiss Tylenol connection during House panel

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(The Center Square) - Spurred by claims from the Trump administration that acetaminophen use by pregnant women has been linked to autism, the House Democratic Policy Committee hosted medical professionals to understand the science.

The panelists roundly dismissed claims by Secretary of Health and Human Services Robert F. Kennedy Jr. and lamented the trajectory of the Centers for Disease Control and Prevention under his stewardship.

“I was really excited over the last year to see autism and autism research to get more attention,” said Dr. David Mandell, an epidemiologist specializing in autism at the University of Pennsylvania. “But this is absolutely not the attention it needs.”

Mandell called the connections drawn to acetaminophen “reckless pronouncements” made in order to meet the administration’s self-imposed deadline of discovering the cause for autism by the end of September.

Those connections came from researchers at Harvard’s School of Public Health who found that acetaminophen exposure increases risk for both autism and ADHD. Mount Sinai called the connection to neurodevelopmental disorders strong enough to warrant warnings for expectant mothers.

During a news conference earlier this month, President Donald Trump said the Food and Drug Administration will be directing physicians to warn patients that taking acetaminophen, the active ingredient in Tylenol, during pregnancy “can be associated with a very increased risk of autism."

“For this reason, they are strongly recommending that women limit Tylenol use during pregnancy except when medically necessary,” he continued.

Mandell said the conclusions made by the administration were not from new research, but rather, it was a “bad literature review” of existing research “that a college freshman would not get a good grade on.”

Research into autism has been ongoing for decades since the condition was first identified. Many say the recent uptick in diagnoses cited by Kennedy and others who have trained their focus on the autism spectrum is largely a result of that research and greater public understanding of the disorder, not necessarily an increase in its prevalence.

One example of that is Dr. Rueben Brock, a psychologist from Washington County specializing in autism and ADHD in children who himself was not diagnosed with the disorder until he was in his forties.

“There is a general lack of understanding of what autism is and what it looks like,” said Brock. “There are autistic people in politics. There are autistic people in medicine. There are autistic people in academia. They are doing the research. They are doing this work, and we actually understand this on a fundamentally different level, right? And if you put those folks with lived experience and expertise at the front of the pack, we are far less likely to be misinforming the public.”

His point underscored one aspect of the larger conversation around autism - the fact that the disorder is a spectrum. Brock emphasized that while some autistic people like himself or Rep. Abigail Salisbury, D-Braddock, who disclosed her own adult diagnosis of autism during the discussion, are capable of living with minimal supports at Level 1 on the spectrum, there are non-verbal adults who need 24/7 care at Level 3.

It is those adults, it would seem, that Kennedy has highlighted when he said that autism “destroys families” and that many people living with autism "will never pay taxes,” adding, “They'll never hold a job. They'll never play baseball. They'll never write a poem. They'll never go out on a date.”

Experts say wanting answers for what causes the disorder is logical, especially if environmental factors exist, but it isn’t as simple as pointing to one drug like acetaminophen.

Mandell elaborated on what is definitively understood about the disorder, namely that there is a genetic component. This is demonstrated by studying identical twins, fraternal twins, and siblings from individual pregnancies which account for variations in both genetics and the fetal environment. If one identical twin is autistic, there is a near total chance the other will be too. With fraternal twins who experience the same developmental influences - like medications the mother takes - but have different genetic makeups, that chance drops to 30-40%. For other siblings, the chance of both having autism is closer to 20%.

He noted that often women who go on to have children with neurodevelopmental delays report pain and headaches during pregnancy regardless of whether they treat it with medication, meaning the connection to painkillers is likely not causal.

Panelists also noted that drug studies aren’t conducted on pregnant women because it isn’t ethical to test their effects on unborn babies. Instead, they study the general population to gather data. Because they aren’t studied, most drugs - including Tylenol - are not explicitly recommended for women who are pregnant, and many are explicitly cautioned against.

Unlike acetaminophen, other pain relievers like ibuprofen and aspirin are known to cause severe birth defects. Fevers during pregnancy, doctors say, are dangerous to unborn babies and pose a greater risk than Tylenol when left untreated.

“They put out so much junk that basically, it sucks up all the oxygen in the room, and the actual truth has almost no oxygen to burn to actually, you know, diffuse it,” said public health scientist and epidemiologist Dr. Eric Feigl-Ding.

Feigl-Ding said that anti-vaccine groups and those trying to link autism and acetaminophen are like “hammers looking for a nail to blame Big Pharma.” He said he himself had gone up against Big Pharma about dangerous drugs, but acetaminophen simply isn’t one of them and, as a very cheaply available generic, doesn’t turn a profit. Its power as a fever-reducer, however, he said does save pregnancies.

“It's like, we're back in the old, you know, war mentality of might makes right. The might of the microphone in which someone controls the airwaves, and the media waves makes it somehow more right than others,” said Feigl-Ding. “And I'm really sad that, you know, a lot of women are being deceived by this, because I've heard many people are just not going to take Tylenol anymore, and I think it's really to the detriment of children.”

Catarina Barker and Morgan Sweeney contributed to this report.