Tylenol and Autism: What’s True and What Isn’t

On Monday, the Trump administration linked the use of Tylenol with rising autism rates, but science doesn’t support that claim. Guest host Sydney Lupkin https://www.npr.org/people/825275572/sydney-lupkin talks to autism researcher Helen Tager-Flusberg https://www.bu.edu/psych/profile/helen-tager-flusberg/ about how autism is studied, the findings from decades of research, and what people–especially those who are pregnant–should do when they experience pain or fever. Plus, we dig into guidance behind using leucovorin to treat autism. Interested in more science behind the headlines? Email us your question at [email protected] mailto:[email protected]. Listen to every episode of Short Wave sponsor-free and support our work at NPR by signing up for Short Wave+ at plus.npr.org/shortwave http://plus.npr.org/shortwave. See pcm.adswizz.com https://pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences. NPR Privacy Policy https://www.npr.org/about-npr/179878450/privacy-policy

• 0:00Speaker 00

  This message comes from NPR sponsor Viori with the Halo Essential Wide-Like Pant. Receive 20% off your first purchase at viori.com/NPR on any US orders over $75 and free returns. Exclusions apply. Visit the website for full terms and conditions. You're listening to Short Wave from NPR.

• 0:21Speaker 01

  Hi, Short Wavers. Sidney Lepkin in the host chair today.

• 0:25Speaker 02

  Thank you very much.

• 0:27Speaker 01

  You probably heard the news this week.

• 0:29Speaker 02

  Effective immediately, the FDA will be notifying physicians at the use of acetaminophen. Is that OK? Which is basically commonly known as Tylenol during pregnancy can be associated with a very increased risk of autism.

• 0:59Speaker 01

  The president, flanked by Health Secretary Robert F. Kennedy Jr. and head of the Centers for Medicare and Medicaid, Dr. Mehmet Oz, said the common painkiller was to blame for rising autism rates. They said they would update the drug's label. And they also said they would work to update the approval for a vitamin B drug, Lucoverin, as a treatment for autism.

• 1:20Speaker 02

  That's one of the things that I'm very, very happy about. I mean, this was-

• 1:25Speaker 01

  But the lack of scientific evidence for this new guidance has experts worried.

• 1:30Speaker 03

  This has been the most devastating week of my career. I had no idea how extremist the perspective would be.

• 1:40Speaker 01

  Helen Tager Flusberg is a professor emerita at Boston University in the Department of Psychological and Brain Sciences, and she's the founder of the Coalition of Autism Scientists. Autism is a developmental disability caused by differences in the brain.

• 1:57Speaker 03

  It impacts the development. Of a child's cognitive, language, communication, and social abilities, and it often impacts their sensory processing, their sensory sensitivities.

• 2:13Speaker 01

  But it's a spectrum. The symptoms can vary. And when it comes to the cause, there are some things scientists know and some things they don't. For instance, we know that exposure to air pollutants and pesticides are linked to higher rates of autism in the population. But for any individual person with autism, it's impossible to say exactly what caused their autism. Today on the show, we'll unpack what this latest announcement means for pregnant people and families with autism. You're listening to Short Wave, the science podcast from NPR.

• 2:54Speaker 04

  Stay tuned for the following announcements and messages from our sponsors.

• 2:59Speaker 00

  This message comes from Schwab. At Schwab, you can get everything from self-directed investing to full-service wealth management, all in one place. No matter your investing goal, life stage, amount to invest, or know-how, you can invest your way with Schwab.

• 3:16Speaker 00

  This message comes from Midi Health. Most women never get real answers about their hormonal health. Midi is changing that with virtual care covered by most major insurances. Understand your hormones. Visit joinmidi.com to book your first visit today.

• 3:31Speaker 05

  This message comes from Doppel, a lead sponsor of Machine Gods. Social engineering attacks look trustworthy. A routine request, an internal email, a familiar face on a call. But Doppel sees through the disguise. The Agentic platform detects and disrupts attacks, trains employees to recognize deep fakes and deceptions, and investigates every fish to take down the campaign behind it. Doppel, dedicated to outpacing what's next in social engineering. Learn more at doppel.com. D-O-P-P-E-L dot com.

• 4:01Speaker 01

  So Helen, if we look at the official data coming from the Centers for Disease Control and Prevention about autism, we can see that 25 years ago, the prevalence was 1 in 150 children. But the latest count is that it's 1 in 31 children. So what's going on there? What context do we need to understand that?

• 4:23Speaker 03

  First of all, the awareness of autism has radically changed. 25 years ago, when people asked me what I did, many of them had never heard of autism. Now we take more subtle impairments in social communication or behavior differences. And even up until 10 years ago, if you had ADHD, you would not be allowed, according to the Diagnostic Manual, to have a second diagnosis of autism. And in this case, that's really surprising

• 5:05Speaker 03

  and of course going to make a huge difference because we know that in children, up to half of them may not only have autism, but also meet diagnostic criteria for ADHD. But I think most important, what we know has changed radically is the availability of services, diagnostic services and intervention services.

• 5:31Speaker 01

  So let's dive into sort of the research on acetaminophen and autism. Can you give us a sense of the landscape of the research that's out there linking the two or not linking the two?

• 5:46Speaker 03

  Okay, so we have well over 40 studies, I think, at this point, that are what we call observational. And we can also then try and link it to whatever data we have available on Whether mothers took Tylenol and how much Tylenol, when, if those data are available. And we can ask the question, so if we have, I'll be simplistic here. We have a hundred children diagnosed with autism. Okay, and sixty of those mothers reported having taken Tylenol during pregnancy and forty of them didn't.

• 6:29Speaker 03

  And then when we look at the patterns, we see that more of the children diagnosed with autism, their moms took Tylenol in pregnancy. It's not a huge difference, but it is there. And that's why we say there's a small association. But we cannot, from these kinds of observational data, make any claims about causality. But then we could take it a step further and ask the question, are mothers of autistic children more likely to be sick, to have those health conditions? Are they more likely to have pain?

• 7:12Speaker 03

  These might both be related to genetic predispositions or especially in and of itself, the more prone to poor health. That I think we know maternal health is an important risk factor, not just infections, but also other health conditions that they might have. So we see that these moms who are taking Tylenol may well be different in lots of different ways. So you can't take a simple one-to-one relationship and make any kind of causal connection.

• 7:56Speaker 01

  So one follow up question that I have is, you know, because acetaminophen is usually over the counter, does that make it a challenge to get good data? Because there's not always a medical record for a cash purchase at CVS?

• 8:14Speaker 03

  I think you hit on an extremely important point. Even the very best study can only rely on what mothers report. They all rely on sort of retrospective report. Maybe at the end of the pregnancy, mothers are asked, did you take Tylenol during your pregnancy? And the further away they are from the time when they took the pregnancy, the less likely they are to remember. The data we have on the actual use of acetaminophen is what I'd call noisy data. Okay, it's not the highest quality.

• 8:58Speaker 01

  Wow. So the other item that came up during this week's news conference was lukaviran or felineic acid as a possible autism treatment. But it isn't currently FDA approved for that. It's usually used to counteract the toxic effects of chemotherapy. And GSK, the maker of the original brand name product, says it will work on submitting a supplemental new drug application to get this added to the label. Is there any evidence that this can help people with autism? How hopeful should people be here?

• 9:30Speaker 03

  Okay, so I don't think anyone would think that it's going to be helpful for every individual with autism. That said, there have been a couple of small scale studies. And these small scale studies have had some promising preliminary findings. At this point, I can't tell you exactly which symptoms we could expect to see change if you put a child on lukaviran. I think the idea of giving a drug in, you know, for conditions that it wasn't originally thought, I mean, that happens all the time in medicine.

• 10:11Speaker 03

  But now the plan is for the FDA to jump over 27 intermediate steps, which they put in place for any other drug recommendation.

• 10:25Speaker 01

  So just to recap, you don't think that Lucoverone should be taken to treat autism?

• 10:30Speaker 03

  Not yet. I think what we do want are the kinds of clinical trials that the FDA typically requires before they provide approval for any medication. Now, you actually don't need a prescription. It's a folic acid. It's a kind of variant of a B vitamin. And you can buy it. And most especially, you can buy it through all the wonderful places and companies that sell supplements through the wellness influencers.

• 11:10Speaker 03

  And these are, you know, a significant part of the whole Maha movement. And that's why none of us cynics in the field was surprised to see that of anything, everything in terms of promising intervention, picking out Lucoverone was an easy target.

• 11:33Speaker 01

  Wow.

• 11:34Speaker 03

  I've been in this field for decades now, Sidney. We have seen this story play out so many times. You know, there's a small-scale study, promising findings for some new drug treatment for autism. Everybody clambers to have it. And then they actually run the randomized controlled trials, and there's no there there.

• 12:02Speaker 01

  Are there harms of taking it?

• 12:04Speaker 03

  So yes, since there's no guidelines at all on dosage for Lucoverone, if I was a mom and buying this tomorrow, I'd have no idea how much to give. I'd be relying on guidance from some other mom to tell me. Because physicians right now are not recommending Lucoverone as a treatment for autism.

• 12:29Speaker 01

  So going back to autism and Tylenol. During the press conference, President Trump also said there were no downsides to avoiding or not taking Tylenol. Is that the case?

• 12:41Speaker 03

  No, there are downsides to not taking Tylenol.

• 12:46Speaker 03

  If you're a pregnant woman and you are running a fever and you have a serious infection, the downside of not taking Tylenol is that you are prolonging the time that you are running a fever. And infection during pregnancy and stress during pregnancy, we do know increase the risk for autism well above the level of risk that's posed by the Tylenol. I'd also say the downside is women will turn to an alternative way to treat their pain and fever, and those alternatives are surely less safe than Tylenol.

• 13:32Speaker 01

  At the heart of a lot of this administration's actions, including around certain vaccines, is also this idea that autism is inherently bad. As an autism researcher, what do you think about that characterization?

• 13:47Speaker 03

  So certainly, back in April, Secretary Kennedy gave his first press conference, and the language that he used to describe autism was simply appalling. Yes, he's talking in some ways about people with profound autism. I study profound autism, and I'm under no illusions. It is very complicated. It can be very difficult. It's a huge challenge, especially for the individual who's profoundly autistic, but the impact on the family can also be huge.

• 14:24Speaker 03

  But at no time did he speak with any humanity or recognize the love that the family members have for their profoundly autistic person. And then we had a repeat performance yesterday, not only by Secretary Kennedy, but this time by President Trump. They simply don't see...

• 14:50Speaker 03

  These people with disabilities as having any humanity, as being loved by their family. But importantly, profound autism represents a quarter of the population. And the rest of the population are functioning at very different levels. And he was not speaking about them at all. But they too have autism. And so it's as if he's ignoring that there's enormous variability in the expression of this disorder. So, yes, it's very painful to see autism so misrepresented and represented in such a callous way.

• 15:32Speaker 01

  Helen, thank you so much for coming on the show.

• 15:35Speaker 03

  Oh, it's my pleasure.

• 15:40Speaker 01

  This episode was produced by Burleigh McCoy, edited by Brent Bachman, and fact-checked by Tyler Jones. The audio engineer was Patrick Murray. Beth Donovan is our senior director and Colin Campbell is our senior vice president of podcasting strategy. I'm Sidney Lepkin. Thank you for listening to Short Wave from NPR.

• 16:06Speaker 04

  Stay tuned for the following announcements and messages from our sponsors.