The confusion over Tylenol, pregnancy and autism

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0:37Exciting. Thanks. This is Sarah Weller. She's 40, lives in upstate New York, and she's due to give birth next month. She talked to my colleague Sabrina Molle about it. Do you know what you're having? That's going to be a boy. Like a lot of other pregnant women, Sarah tries to do what she can to keep herself healthy and give her baby a healthy future. And Sarah says she's a bit of a nerd. She likes digging into studies. So when she heard about some concerns around Tylenol being linked to autism, she looked into it. So when I first got pregnant, I had, of course, heard, you know, the stuff about Tylenol, you know, people's thoughts on that before.

1:20And I immediately went through and went down the rabbit hole of seeking out the actual scientific research. In the end, Sarah says she felt good about taking Tylenol when she needed it. But on Monday, President Donald Trump stood in the White House and had a different message for pregnant women. Don't take Tylenol. Don't take it. If you just can't, I mean, it's a fight like hell not to take it. He also said his administration had begun the process of issuing a new warning label for the active ingredient in Tylenol, one that would warn of a possible connection to autism. Now, Sarah does worry. Not for her health.

2:05She still stands by her decision. But for others who are pregnant and wrestling with this conflicting guidance. I worry that women are not going to do what they need to do to take care of themselves, to, you know, get rid of their pain so they can take care of themselves during a pregnancy. And I worry that autism, which is already so highly stigmatized, is going to be even more stigmatized or that parents, you know, whose children are autistic because of genetics are going to be blamed for something they did. This announcement from the White House contradicts established recommendations from major medical groups.

2:44But it's all part of the Trump administration's larger focus on autism. Dan Diamond is a White House reporter for The Post. He says Trump went even beyond the guidance of his own health experts on Monday when he attacked childhood vaccines and when they're given. I think what took the breath away from even some Republicans I talked to was the president's attack on vaccines, that he was just up there riffing about his beliefs on how many vaccines kids should get. And they pump so much stuff into those beautiful little babies. It's a disgrace. I don't see it. I think it's very bad. Looting debugged theories about the connection between vaccines and autism.

3:27And the fact that that was all happening in the same announcement from the White House, I don't think anyone has ever seen anything like that from the White House or a president before.

3:40From the newsroom of The Washington Post, this is Post Reports. I'm Elahe Izadi. It's Tuesday, September 23rd. Today, I speak with Dan about the science behind this new guidance on Tylenol and another announcement Trump made on Monday about a possible autism treatment, a drug called Leucovorin. We'll also go through where this leaves pregnant patients, children with autism, and what could come next for childhood vaccines.

4:15Well, Dan, thank you so much for joining me today. Thanks for having me back on Post Reports. We're happy to have you here, Dan. There is all this news coming out around public health and medication and coming out of this administration. And you are the person I want to talk to about this. Let's begin with the drug that the Trump administration is now cautioning pregnant women against using early on in their pregnancy. And it's one that, I don't know, I feel like most people have used at least at some point in their lives. What is Tylenol? It is a common pain reliever. It's probably the most common drug that I use as someone who struggles with various aches and pains.

4:57My wife was pregnant this year. She used it for her discomfort because there aren't a lot of drugs you can take while pregnant. We've given it to my toddler, an infant son, to help relieve their fevers. It is a go-to across the country. It's over-the-counter. It's easy to access. But it is a drug that has come in for scrutiny in the past, and there have been efforts to link it to autism before that have been ineffective. And Tylenol is the name brand for it, right? That's right. Acetaminophen is the key ingredient that is used in Tylenol and in other drugs. And we call it Tylenol in the States, but there are countries abroad that call it a different name.

5:34Okay. And what exactly did the Trump administration do on Monday with regards to Tylenol? The Trump administration took several steps to highlight what they say is the risk of taking Tylenol while pregnant and the possible implications for autism. Specifically, federal officials issued new warnings about taking Tylenol while pregnant, but also caveated that they couldn't prove it necessarily and that this is a matter to discuss with your physician. And Dan, why is Tylenol being singled out in this way? Where is this coming from? I think it's first worth noting that there have been studies for years trying to investigate a link between Tylenol and autism.

6:16And those studies had not found a connection. There was a major study in Sweden recently that found no link. And then a study that came out about a month ago, led by researchers at Mount Sinai, some folks at Harvard, other institutions signed on, went back through prior research and said that they were able to find a connection. Specifically, that there was a link between Tylenol and autism and ADHD. HD. This caught fire among some of the president's base, people in the Make America Healthy Again movement. Robert F. Kennedy Jr., the nation's health secretary, Laura Loomer, a well-known MAGA activist, tweeted about it a few weeks ago.

6:59And then the Wall Street Journal had a story on the possibility that Tylenol would be part of an ongoing effort by the administration to understand causes of autism. And I think all of that combined just helped this idea build steam. And in some ways it was self-reinforcing. Once the theory that Tylenol was linked to autism was out there, some people in the Trump administration grew more attached to it. Dan, you mentioned the study from researchers at Mount Sinai and Harvard looking at Tylenol and autism. Can you tell me a little bit more about what this study found? The study that the Trump administration is resting its Tylenol case on is essentially a review of past studies.

7:39And these studies did not necessarily find a cause of autism linked to Tylenol, more an association, which is very different than the recommendations that we might see from the federal government on other conditions. The Food and Drug Administration, in their letter announcing this, said, we can't prove that Tylenol is causing this. This is an association that has been picked up. It is not causal. The possibility that some researchers have raised is it's not the Tylenol that is causing autism in these children. It's the high fevers that the women had during pregnancy. And they were taking Tylenol to treat those fevers.

8:23So more study is necessary, researchers have said, even some of the researchers who worked on this broader effort. The idea that just a review of past studies would be enough to prompt a presidential press conference, new guidance from the Food and Drug Administration, there is nothing like this before that I've seen that measures up to this. Has the maker of Tylenol said anything about this? Yes. They've consistently pointed to research that their drug doesn't cause autism. There's a new message on their website. They have said, quote, the facts that over a decade of rigorous research endorsed by leading medical professionals and global health regulators confirms there is no credible evidence linking a sentiment of end to autism.

9:10And then behind the scenes, they've been lobbying pretty aggressively in D.C. in the past few weeks to try to stave off this outcome. Obviously, that didn't work for them. One thing that President Donald Trump said on Monday in this White House event is that there's no downside to doing this. There's no downside. Don't take it. You'll be uncomfortable. It won't be as easy, maybe. But don't take it. Dan, is that true? Like, what do medical experts say about that, about not taking Tylenol if you're pregnant? I've talked to researchers who have essentially said the opposite of what the president said about no downside.

9:49One researcher pointed out to me that high fever during pregnancy is highly correlated to neurological disorders, neural tube disorders specifically, such as autism. So if you take away Tylenol, that means pregnant women have fewer resources to reduce their fevers. And as she said to me, so guess what will happen? That could lead to more cases of autism. The American College of Obstetricians and Gynecologists called the move irresponsible. Here's a statement by that group's president. Stephen J. Fleischman, quote, the conditions people use acetaminophen to treat during pregnancy are far more dangerous than any theoretical risks and can create severe morbidity and mortality for the pregnant person and the fetus.

10:34So to translate that, what the head of the major group for OBGYNs is saying, Tylenol is safer and better than not taking Tylenol if you are a pregnant woman who really needs it. Hmm. So sorry, Dan, just so I'm clear, if you are pregnant and you have a high fever or a fever or an infection or pain, is Tylenol typically the medication that doctors recommend for you to take? Yeah, I mean, it's been the go-to. There are some other over-the-counter pain medications that are seen as riskier or even as total stay-aways. Drugs like Aleve or ibuprofen, maybe if you're pregnant, you can take that with guidance from a physician and only at certain points in your pregnancy, in the first trimester or third trimester, depending on the drug and what your doctor tells you.

11:26Pregnant women are generally advised to stay away from drugs like aspirin during pregnancy because it can harm the fetus. So Tylenol has been seen as really one of the only drugs. And again, we just experienced this in my house. My wife was pregnant this year. One of the only drugs you can take when you have fever, discomfort, various pains while pregnant. And Dan, I have to say, like, I know there, just from people in my life, there are some underlying medical conditions that would prevent someone from taking a pain medication or fever reduction medication other than Tylenol. Like if you're on blood thinners, for instance, like I know people in my life on blood thinners and they have to take Tylenol.

12:07Other medications are not options for them. And I'm also thinking about, you know, like you said, your wife, like this is an issue in your household and how difficult it already is to be pregnant and how, you know, oftentimes or sometimes you're already on edge trying to do the best you can by your own health and your child's health. and then throwing this into the mix. I mean, Trump also said, you know, if you can't tough it out, you know, go for it, but it's kind of on you. Like, where did that messaging leave you hearing that? I think this is just going to add to confusion during pregnancy.

12:43The FDA's own letter here was mixed if you read it. The top of the letter is a warning from the Trump-appointed FDA commissioner who says there's a considerable body of evidence about potential risks associated with acetaminophen. And then the bottom of the letter says there's no causal relationship established yet. You should look at using acetaminophen because the alternatives to Tylenol have, quote, well-documented adverse impacts. So it's just muddying what was already a very confusing and sometimes scary time, I think, for pregnant women and other people who have depended on Tylenol for pain relief.

13:23Dan, you know, we heard at the very beginning of this episode, Sarah Weller, she's pregnant. She said that she'll still occasionally use Tylenol if she feels like she needs it. But if you're listening to this and you're pregnant and you're now confused and worried, what would you recommend doing? Well, I'm not a doctor, so I think they should talk to one. Talk to your physician who will know the individual case and will be able to parse the medical literature far better than a president of the United States or even a Washington Post reporter.

13:59After the break, we talk about the second drug, this possible new treatment for autism and the administration's bigger autism agenda. We'll be right back.

14:20Dan, you were talking about this rush to make this announcement and zero in on Tylenol in a way that feels very unprecedented. Why was there such a rush to do this and do it in this manner? What has your reporting and your colleagues' reporting revealed about that? I think the place to start is not this week, not a few months ago, but years and years ago. President Donald Trump, then real estate developer Donald Trump, got very interested in the idea that autism was linked to vaccines or that there might be other environmental causes of autism. And he's spoken about having a personal connection here, knowing people in his life whose children, he has said, were affected by vaccines, became autistic.

15:06He connected, according to the president, about two decades ago with Robert F. Kennedy Jr., who had become a leading anti-vaccine activist and had been raising questions about why autism rates were going up in the United States. And for a long time, President Trump, in his first administration, now in his second, has wanted to delve into this question. Why are more kids autistic? Is there a way to control for that? Is there a way to treat that?

15:36Early this year, the president tasked his health team with coming up with answers on autism, new answers. And originally, I think this was supposed to be a multi-year event. They were going to start the research in September, some administration officials told me. And then Robert F. Kennedy Jr., the nation's health secretary, said in a televised cabinet meeting, we're going to have answers in September. By September, we will know what has caused the autism epidemic and we'll be able to eliminate those exposures. which is just an astoundingly short amount of time to uncover new details about a condition that has been with us for decades.

16:14So I think there's been a rush to try and prove by September, the month that we are now in, that the Trump administration has new answers, new data on the causes and potential treatment for autism. And Tylenol just kind of came along potentially at the right time. I think at this point, it's actually helpful to just step back and ask you, what is autism? Autism is a neurodevelopmental condition where some people have minor difficulties in understanding speech, language, communicating. Other people have more severe autism where they can't function independently. They need help to move around the house, use the restroom.

16:54It is truly a spectrum, which is how it is referred to. And the rate of autism in American children has increased, but some of that might just be we know how to recognize it better. There has been an expansion in how to diagnose autism. But even researchers who are of the belief that autism is primarily genetic and that the rise is driven by diagnoses acknowledge that there might be environmental factors too, that there might be something that has led to more American children being diagnosed with autism. And they have generally supported work, not just by the Trump administration, but by prior administrations to research those causes.

17:36Dan, I want to ask you more about this other medication, lucavorin, that the administration announced it would take some action on as a potential autism treatment. What exactly did they say? They honed in on a lesser known drug called Leucovorin, which is a form of vitamin B9, and it is often prescribed to cancer patients, patients who may need it to counteract the side effects of drugs that they're taking, and also possibly dealing with vitamin B9 deficiency. There have been some recent studies, small studies, that show that Leucovorin has real promise in helping autistic children who have language difficulties either speaking or understanding it.

18:24And our colleague Arianna Cha, one of the health reporters at the Washington Post, who's been covering the Trump effort on autism, had a great story this week on the fragile hope there, the belief and the desire that this could really help, but also the acknowledgement that we're very, very early. And the fact that the Trump administration embraced it so quickly shows how eager they were to trumpet something that is not proven. Yeah, what kind of evidence does there already exist that indicates it could help? There have been some small studies that have shown lucovorin can boost cognition. It can improve communication.

19:02Ariana has spoken with families who swear by it and say that this drug has made all the difference. But again, these are very small studies. Scott Gottlieb, who led the Food and Drug Administration and the first Trump administration has said, this is promising, but it's way too early. We need to do bigger studies before we can decide that lucavorin is a treatment for everyone. Dan, as we're talking about these medications, like really when we step back, this conversation on autism itself and the way it's being framed by this administration, I'm just wondering how advocates within the autism community feel about how this is all being discussed, how this is being framed.

19:43And if there's any sort of tension there in discussing autism in this way. It's mixed in the autism community based on people I've talked to, people who have spoken to my colleagues. On the one hand, there's excitement and hope that the power of the government is being pushed on this area where many parents, researchers, others have long wanted it. At the same time, autism research in the past was more carefully done, more openly discussed. And that's the kind of approach that autism leaders want to see, not something that is essentially a quick fix overnight that could backfire with misleading belief in drugs that may or may not be linked to autism after all.

20:30And I also think there are many advocates in the autistic community who are really nervous about what this health secretary, Robert F. Kennedy Jr., is doing and saying with relation to autism. He has been an advocate for more help for that community, and he's raised a number of questions about causes of autism, but he's often done it by drawing on false claims or things that have been debunked. So to have that person leading this new effort and investigation, it's hard for many people to trust what Robert F. Kennedy Jr. is saying when he stands behind a government podium. Secretary Kennedy, when he spoke about autistic people earlier this year, offended a lot of them, talking about how they were unable to function, unable to hold jobs, have normal lives.

21:19There are many autistic people who function in society perfectly well and say that they don't need to be fixed because there's nothing wrong with them. So there really is a spectrum when it comes to autism. Many people who live with the condition point to their ability to understand the world as something that they would never want changed. There are other people, especially parents of severely autistic children, who have desperately wanted answers and fixes, And those are the ones who are most eagerly anticipating help.

21:54Dan, one thing I don't want to, I don't want to leave without talking to you about our vaccines, because that feels like it's been the focal point for many months now within this administration. And this came up in this announcement on Monday, like the president spoke at length about vaccines. And on the vaccines, it would be good instead of one visit where they pump the baby loaded up with stuff. You'll do it over a period of four times or five times. When you were listening to him talk about the childhood vaccine schedule, like what stood out to you? Everything. thing. Public health people were already on edge and nervous about this news conference because of the unproven claims about Tylenol and lucavora.

22:46And everyone that I've talked to has been blown away that President Trump veered into his pet theories on vaccines. And I'm including people who were in the first Trump administration, some people who are in his current administration or Republicans on Capitol Hill, they don't want the president spouting off about vaccines based on his gut because the implications are so significant. We saw in the first administration when President Trump stood at a White House podium and talked about drugs like ivermectin as a potential coronavirus treatment, there were Americans who went out and tried to use ivermectin to treat their coronavirus to no effect or ill effect.

23:24So the president raising questions about common childhood vaccines, telling parents to start spacing out when their kids get the vaccines, based solely on his own beliefs. It's mind-boggling. And it's something that many Americans don't agree with the president on when it comes to questioning vaccines. Even Republicans who are Trump supporters do not believe that the MMR vaccine, the mumps, measles, and rubella vaccine that is commonly administered, they think that that is important, that it's life-saving, that people should get it. So to have the president talk about this, it's part of a broader initiative that he is overseeing to change Americans' relationship with vaccines.

24:06Dan, why does it matter that the president is saying things that are out of step with what even those experts that he has appointed and have within his own administration are ready to say? The president is arguably the most famous person in the world, certainly in America. He has millions of dedicated followers, people who believe what he says. as the truth. And even if the CDC or FDA, these acronym agencies are saying something different, the president standing behind a podium in a widely viewed press conference that is getting aggregated, that is going to have some impact. And whether it's saying don't take Tylenol or wait on vaccines, there are Americans who are going to listen to the president and not to their doctor.

24:49Dan, as you keep covering the Trump administration's approach to autism, what will you be paying attention to next? Well, the Trump administration's initiatives on autism aren't over. They have been working on this sweeping report by the National Institutes of Health that was originally seen as the centerpiece of their autism effort that was going to investigate dozens of different hypotheses about autism. Now, everything I've heard is that that report is serious, that there are career experts weighing in on it, that it has gone through the normal process, not like the rush process we just saw.

25:23So I am curious what that is going to deliver. And then on vaccines, it's sort of like a mask-off moment with the president, where it has been known for years that he has questions about vaccines. I remember during the coronavirus pandemic, talking to White House and other administration officials who said that the irony of President Trump overseeing Operation Warp Speed, overseeing this coronavirus vaccine effort, that we had the most anti-vaccine president in history overseeing the biggest vaccine effort in history. So I think now we have Trump kind of unfiltered in the second term, being able to push his deputies and speak more plainly about what he believes.

26:05Dan, thanks so much for joining and explaining all this. I really appreciate it. Thanks for having me.