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The Nonprofit Leader's Guide
When Science Whispers And Headlines Shout: The Facts on Tylenol and Autism
Recent headlines suggested a link between acetaminophen during pregnancy and autism or ADHD, sparking fear and second-guessing. We dig into what the studies actually say, why association is not causation, and how large sibling-based analyses change the picture.
Boundless Medical Director Dr. Cynthia Ripsin and State Director of Behavioral Health and Education Services Kendra Hill join host, Scott Light, to talk plainly about fever risk in pregnancy, the role of safe treatment, and how sensational messaging and media coverage can backfire when it pushes parents away from evidence-based care.
Our conversation walks through how we answer one of if not the hardest question we hear as of late: Did Tylenol cause my child’s autism? The short answer is no. The fuller answer starts with listening. We trace how people heard the news, clarify the language used in studies, and rebuild trust by explaining methods and what robust population data can and cannot prove. Along the way, we confront confirmation bias, the pull of social media, and the lasting shadow of long debunked vaccine-autism claim.
This episode also explores identity and support: why some people embrace difference over disability, why others face real disability from co-occurring intellectual or language challenges. Plus, how to respect both realities. Then we examine new treatment chatter around folinic acid, separating legitimate uses from overhyped generalizations. Our goal is practical and compassionate: help families make safer choices, understand study quality, and navigate care without shame or blame.
If clear, steady guidance is what you need amid the noise, you’re in the right place with Boundless. Subscribe, share this with someone who’s worried, and leave a review to help more families find credible, compassionate advice grounded in evidence.
Welcome everyone to the Nonprofit Leader's Guide Podcast brought to you by Boundless, where we explore the intersection of policy, practice, and people's lived experiences. I'm your host, Scott Light. So today we're actually bringing you a special episode that delves into one of the most talked-about and perhaps misunderstood public health announcements of the year. In September, the federal government suggested there may be a link between acetaminophane, commonly known as Tylenol, taken during pregnancy and then later diagnoses of autism or ADHD in children. Here at Boundless, our clinical leaders take their role of bringing accurate and supportive advice to Boundless families and the community very, very seriously. The headlines have been explosive. The science, yes, it's complicated. And for families, well, sometimes they're left wondering, what does this all mean for me or my loved one? Should I be worried? Should I be doing something differently? So that's where our clinical leadership comes in. So we're going to try to unpack a lot here with Dr. Cynthia Ripson, medical director, who has a focus in care for people with autism and neurodevelopmental differences. Also, Kendra Hill is here, State Director of Behavioral Health and Residential Treatment here at Boundless. Welcome to you both.
unknown:Thank you.
SPEAKER_02:Good to be here.
SPEAKER_00:Dr. Ripson, why don't we begin with you? That government announcement, they use the word association rather than causation.
SPEAKER_02:The announcement suggested that people who take a acetaminophen during a pregnancy will have an increased risk of having their offspring have autism. There's been a number of studies that have looked at that, and none of them have conclusively determined that. And a very large study coming out of Sweden of about two and a half million children and their and and the pregnancy related to their birth has determined that that's not an actual cause. It may be an association, but it's not a cause. And it's important to know that there's a difference between an association and a cause. Things can be associated, but not necessarily one causing another. And in this case, there is an association when you simply look at the raw data. But when you look deeper and you see could there be something else causing individuals with autism and having STM and fin as well, and the cause that they identified that they believe identified is that when you look at the siblings of people in the stud the original study, that helps explain the difference. Okay. And that's a little bit tricky to understand, but the difference is that we know that there is likely some, there is definitely some genetic influence in autism. And there are also probably some underlying environmental influences as well. So when you take the sibling of someone that has autism in this study and you compare it and you say, okay, acetaminefin falls off the table, and there and so we know that the problem's not the acetaminophin. There potentially are other environmental factors that could be complicating a pregnancy that could that could increase the incidence of autism, but not acetaminophine.
SPEAKER_00:Did did that announcement in your mind again from a medical doctor's point of view, do you think it was confusing for the general public?
SPEAKER_02:Oh, I think it was very confusing because it actually they actually came out and said, do not use acetaminophen during pregnancy if you can absolutely help it. Um what we know is that women who have fever during pregnancy have an increased risk of neurodevelopmental disorders. Uh neural tube defects is actually the biggest one that we know about. Okay, that's the in improper closure of the neural tube that can cause problems. We know for an absolute fact that women who have unmanaged fever during pregnancy, especially early pregnancy, will have that, can have that outcome. But fever by itself is important, so we need to treat the fever. So you don't want fever. And they've actually done a couple of smaller studies that have shown that for women who have had an infectious illness and with fever during early pregnancy and taken acetaminophen, they actually have a reduced risk of neurotube defects, which means treating the fever is probably a good thing to do.
SPEAKER_00:Kendra, let me come to you and again want both of your perspectives here. When Boundless families see and and take in headlines like these press conferences, statements from officials in DC, et cetera, et cetera, what do you see right away in terms of calls, concerns, or maybe even panic? And I say even panic, maybe question mark there, um, from families that are served here at Boundless. What do you see?
SPEAKER_01:Sure. What we see has been some parents reaching out with some almost shame or guilt, feeling like it's their fault that their child has autism. Um and so, yes, these sort of headlines are hurtful in that way that not only is it not proven, um, but then it creates a a false sense of guilt that the parents don't need to be taking on, but they are.
SPEAKER_02:Um 100% that's a blame the victim kind of a thing. If it in fact there had been an association, there is there or a cause and effect uh which there's not. But had that been the case, that's a blame the victim situation because women are told to take their illnesses seriously during pregnancy, and the safest medication that they're told to take is acetaminophane. None of the research current or before that has ever proven that to be otherwise. So it's really, really unfortunate this came out. But I but I agree. It's really causing a lot of a lot of shame and a lot of guilt and a lot of worry in in women.
SPEAKER_00:Aaron Powell When a patient or a parent comes in and they say, let's just break this down. Let's break this down at the conversational level. They say, Did did Tylenol cause my child's autism? What do you say?
SPEAKER_02:I can say without a doubt that Tylenol did not cause your child's autism. I can 100% say that, but I want to move for move even further into it and say, but why do you think it might have? And then I can understand the perspective of where the individual got information. Then we go further and say, okay, so let's listen really carefully to what it is that you heard and then break down each step of that way. Um what we don't ever want to do in a situation that's so emotional is to just go, oh, never mind. This, you know, forget it all. We're just take my word for it, it's fine, right? We really want to allow what what we say in in c in uh primary care is begin the conversation with curiosity. Okay, so ask where did the information come from and get specific so people really feel heard, and then you can move into what we believe is the truth, right? And that can really help people.
SPEAKER_01:Yeah, just to follow up on that, I think going at that, how did you hear it, what was the language they understood of it, because a lot of people I think did hear it and think that that meant it caused autism. And and to your point, that wasn't the language that was in the article, but very much the messaging that could be conveyed or or interpreted from it. And so clarifying that language and then what that language in the research means and helping them to understand that.
SPEAKER_02:I really think I've been in practice for a long, long time. And I really think part of the problem that we have is that we receive information in sound bites, right? And so um, if I think back to my early days, um, especially in medicine, but even just as an individual in the community, our news broadcasts were very, very different. You would sit and you would listen and you would hear an entire story before they would move into the next story. And so often so much of what we have is social media, small little small little bits and pieces. Right. And that can become frustrating because um then you're not sure who's hearing what. So, yeah, so really allowing the person to speak and to say what it is that they actually heard, and then ask them what their thoughts and feelings are about it, and then move into what we see are the facts, and then if the facts seem still disputed, then to kind of continue that conversation.
SPEAKER_00:Boy, you teed up seriously the very next question that I had here, because I I and I wrote it just like this in this world of 15-second social media posts that many people view as credible news these days, um, does nuance get lost? And and of and I say that probably rhetorically because we we know it does.
SPEAKER_01:Yeah, between social media, the quick sound bites, headlines, the way things are summarized, there is so much depth that is lost in our in our news and the way we absorb it. And so to really dig into the facts and dig into the sources is very challenging without being very intentional and knowing where to go and how to find that.
SPEAKER_02:Let me give you an example. So I can give a headline that would say, um, man dies of shark bite in his living room, right? That could be a very true statement, but the truth behind that statement would be the man was bitten by a shark two weeks later. He had an infection that he hadn't been identified and he ended up dying, and his wife found him in his living room, right? But the actual start of that, that's actually a true statement. He died in his living room, he got bit by a shark bite. So it's really important to fill in those blanks.
SPEAKER_00:I heard somebody say, again, in this world that we're living in, with a lot, let's be honest, a lot of folks out there playing the role of journalists and and they're not. But I heard somebody say these days people wake up instead of looking for information, which they got from traditional news, we'll call it, umpteen years ago, instead of waking up and looking for information, a lot of people now wake up and seek confirmation. Confirmation of what they already think. Do you both see that in this world that you're in?
SPEAKER_02:Yeah, 100%. I see that. And even as a as a clinician, as a physician, I have to really guard myself against that. Because as I'm looking through information, I oftentimes will go, oh, I see, I thought that was right, and I'll move in that direction, instead of trying to really remain a really objective observer and see both sides of everything so I can be that objective observer that that patients really need.
SPEAKER_01:Yeah, definitely. I think, and you know, technology doesn't help us, right, in that way, because it it captures where we lean and then it puts more of that in front of us. And so it's easy even easier to have that confirmation bias as opposed to that exploratory, curious seeking all of the information because of the way technology is set up, then it forces us to have to really be intentional about being objective and digging deeper.
SPEAKER_00:Can one or both of you share a moment, maybe over these last several months where, again, been a lot of headlines about autism where you sat down with that family or sat down with that parent, talked about the research, they asked you some questions, and then they left here reassured?
SPEAKER_02:Because we see so many, care for so many people with autism here in Boundless, um, I have frequent um conversations regarding autism and vaccines. And so I've had pretty recent conversations with parents who their children are getting into their teenage years and they need another set of vaccines that we typically give in the teenage years. And the parents uh will say, geez, I've heard that vaccines have caused my child's autism, and I just really don't want to get any more vaccines for him. And so we can have that curiosity conversation, where did you hear it? And so often when it has to do with autism and vaccines, it's that early age vaccines that children get that parents have become convinced because of misinformation it caused their autism. And so we can unpack that a little bit and explain to them where it comes from. And then they and I remember I recall a specific incident where the parents said, okay, then I think it is okay for us. I always kind of thought maybe there was a connection, but maybe there's not a connection to his autism and his and his vaccine.
SPEAKER_00:And we covered this in a couple of episodes ago with you right here in this very same studio, Dr. Ripson. Let's maybe be even more emphatic about uh vaccines and what the science tells us today.
SPEAKER_02:Yeah. So um in the the biggest one is in 1998, a a study came out in the Lancet Journal, which had been a pretty respected medical journal that said um that there was the there was a cause of the MMR vaccine, measles, mumps, rubella, and autism. And decades later, about two decades later, finally they uncovered the fact that these were actually um rogue scientists and got paid for that information. They actually lost their license for having done what they did. They had tested or supposedly tested only 12 people. Some had already had autism before they got the MMR vaccine, but they convinced the journal that it was a legitimate study. Um so it turns out that it did, there was absolutely no evidence that the MMR vaccine causes autism, but it had made such a splash when it came out, and it's so often, I think it's because parents wondered what on earth happened. My child seemed to be doing fine at age one, even at age two, not too bad. And then they here they are at three years old, and suddenly they're not really able to talk like their peers. And the the one thing they thought about is maybe it was that vaccine we gave them, and then this journal article came out. Now they're convinced. And so even in 2025, there are still people that are convinced that that was those were not rogue scientists. So they it it really gripped the community, the really the world, because it's all of us want to know what causes autism, right? We're looking for something so that we can prevent it, quite honestly.
SPEAKER_00:Aaron Powell Let me ask you both this. Can you share some reasons why families prefer to think of an autism diagnosis in terms of difference instead of disability?
SPEAKER_01:Sure. I think the language around disability in nature says, no, you don't have the ability to do something, right? And with individuals with autism, we know it comes in many different forms, presents differently for every individual that we work with. And that in the midst of the autism, there are many abilities. And there are so many unique traits that are make them amazing in their own way. And so to say that it's a disability, I think undermines the unique abilities and unique characteristics that they inherently have as individuals. And so love the language of difference as opposed to disability.
SPEAKER_00:Okay. Love that.
SPEAKER_02:When you work with individuals with autism, you understand that there is the diagnosis of autism. There is a diagnosis of intellectual disability, which can be anywhere from mild to severe to profound. Okay. And then there's a language disorder. Some people have autism and early on have a minimal language disorder that they're able to manage, but they have no intellectual disability at all. And they can actually, the, the, um, I think people who want to look at autism as a difference instead of a disability are probably not experiencing it as a disability. They're experiencing because it's amazing that some individuals with autism have amazing creativity, able to, able to think about things in ways that many of us are not able to do so. And that makes it, in some people's cases, it's they make it almost a superpower. They talk about being a superpower. But those individuals who are saying this is a difference, not a disability, likely do not have a disability. They likely do not have the intellectual disability or they don't have us any uh challenging language disorder. So that the autism, they still have autism, but the autism is not causing them to have a disability. That's the way I look at it from a clinical perspective.
SPEAKER_00:When the science, let's say, has its own volume level, but then it's drowned out by social media and the bullhorns that that let's be honest, a a federal government has, right? An administration has.
SPEAKER_02:Right.
SPEAKER_01:I would say it goes back to the curiosity and objectivity. We all come into our work, into our professional life with our own beliefs and our own values. But at the end of the day, we need to be leaning into what objective truth do we know? What evidence do we have to support that? And how do we do the best work we can to support people based off of what we know today? Knowing that, yeah, hopefully science will give us more answers down the road. And in the meantime, we will be as objective and curious as we can.
SPEAKER_00:Well, let's look down the road here just a little bit. Do you think an announcement like this that we've been talking about that teed up this whole episode, will it drive more rigorous research or does it risk misdirecting energy in the appropriate research?
SPEAKER_02:I think it's definitely risked misdirecting energy. I think that the the uh impetus for research in autism is there already. There are scientists across the country and across the world who are doing amazing work with autism research. I think it's become frustrating for them to see that. It's really become frustrating for us as clinicians to see it. And it does, it sort of takes away some of the wind from their sales when they're really doing really great research.
SPEAKER_00:Are you worried about research?
SPEAKER_01:I tend to think the opposite side, where I believe, or I'm maybe hopeful, that the uh curiosity or belief that this is not accurate will inspire more people to donate to research and to get more involved in advocacy around that research in hopes that that will spark further research to to dig deeper and and help get to the truth.
SPEAKER_00:Let me pick up on your word advocacy there. So, what can providers like Boundless, what can providers all over the country, all over the world, do to advocate for good science while also supporting families out there?
SPEAKER_02:Keeping the conversation open and um just making sure that we're not um narrowing our focus on things. And let me give you an example of this um that kind of ties into what we were just talking about. So the uh announcement also came about uh the use of a derivative of folic acid of uh called leucovorin. Leucavorin and folinic acid are the same um chemical. And there have been some studies that suggest that leucovorin is a treatment for autism. Um, and that is an overstatement of some research that has that happened a number of years ago. Um, so there is a deficiency in uh some people have a deficiency in their brain, and that deficiency is called cerebral folic um folate deficiency. When they have that deficiency, it can interrupt language and can do it can also have some memory impairment and some other problems with it. We've known for decades that when you give people leukovorin and they have this deficiency, it can help their language impairment, it can help their memory. It's absolutely something we know. We also know that people that take cancer medications will have a reduction in their folic acid. If you give them leukovorin or folic acid, that can improve that, and so that can improve some of the symptoms they get from their chemotherapy. We know all of that science. Um, the fact that someone has a language disorder doesn't mean they have autism, but people with autism have a language disorder. So there's some suggestion that potentially using locovarin in people with with autism could help. So that research came out of a journal called the Journal of Personalized Medicine, I think something like that. Probably not a real highly respected journal. And it came out in about 2021 with people with autism that this may be a this may be a fix for people with autism. It would have been jumped on very quickly had it been a hundred percent legitimate science, but it doesn't necessarily mean that there might not be a kernel of truth in there, right? So when people ask us, and we have been getting calls to the to the facility to say, when am I going to be able to get Luke of Orange for my person, we say, well, not yet, because we're not sure if exactly who that will work with, but we need more science behind it. So we don't want to again shut down the conversation, but we want to let people know that there may be a kernel of truth behind this, and we'll keep watching for that kernel of truth. But until then, we're not going to give you a medication if we don't think it could work for you.
SPEAKER_00:As we start to wrap things up, let me ask you both this. What is one thing you want families to know about the work that you do and and how to find the support that these families need?
SPEAKER_02:The model that we use in our clinic is that we take time with patients to listen and to really listen and to really hear them. That model will continue regardless of anything else. Um, as we listen, we understand what people actually need, and then we can help them get the needs that get their needs met.
SPEAKER_01:I would say that our approach is to be non-judgmental and to meet them where they're at and support them in the ways that the individuals need, that the families need, and that yeah, we are not labeling or judging them or blaming them for any of the the things that they're coming to us with or the needs that they're having, um, and really just work to come alongside them and support them through whatever they're needing help with and helping to to build skills and increase autonomy and independence and relieve stress for caregivers is really the the focus of the work that we're doing.
SPEAKER_00:Staying open, staying curious. That's that's kind of a good mantra, kind of every day to go into it, right? Um, this has been a good conversation. Thank you both for joining us.
SPEAKER_01:Thank you. Thank you.
SPEAKER_00:We know that science is always evolving. Families deserve that guidance. We've talked about that, um, and that guidance should be clear and compassionate and grounded in what we do know, not just in what we fear. So again, thanks to our two guests today. As always, we'll share links to some background reading in the show notes. And if you found today's conversation useful, please share this episode with your colleagues, with family members, friends out there who might be wrestling with these very same questions and concerns. Keep tuning in to hear some timely advice and support from our colleagues and our leaders here at Boundless and throughout the entire health and human services sector. Again, thanks for joining us, and we'll see you next time on the Nonprofit Leader's Guide Podcast.