Live Q&A: Is Tylenol really dangerous? An ADHD news roundup

ADHD just keeps finding itself in the news. It can feel like a lot for those of us who have it or care for someone who does. 

Recently, Hyperfocus host Rae Jacobson sat down with a couple colleagues at Understood.org for a livestream to discuss the news and take community questions. Her guests were Dr. Andy Kahn, a licensed psychologist, and Dr. Keona “KJ” Wynne. 

Together, they chatted about the controversy surrounding Tylenol, what we really know about the cause of neurodevelopmental disorders, and how to talk to your kids about scary or misleading messages in the news.

On this week’s Hyperfocus, we’re sharing that conversation in full. 

Related resources

• Fact-checking the MAHA report’s claims about ADHD 

• A history of ADHD medication 

Timestamps

(01:10)  Does Tylenol use during pregnancy cause neurodevelopmental disorders?

(15:32) Is ADHD being overdiagnosed?

(28:35) Are too many kids taking stimulant medications? 

(41:01) How can we talk to our kids about scary or misleading media messages?

Episode transcript

Rae Jacobson: There's so much happening in the news right now. Big headlines about whether taking Tylenol during pregnancy can cause ADHD or autism, questions about the safety of food dyes, and so much confusion around how ADHD is diagnosed and how the medications used to treat it are prescribed. It's a lot. And it can be really hard to know where to turn for reliable answers.

But today we're here with two of our experts who are going to answer your questions to help you make the best decisions for your family. I'm Rae Jacobson, host of Understood's "Hyperfocus Podcast," and I'm joined today by two experts, Dr. Andy Kahn, a licensed psychologist who focuses on ADHD, learning differences, and autism, and Dr. Keona Wynne, who we call KJ, a PhD, Harvard-trained researcher and Understood senior research manager.

A few reminders before we get started. We're going to answer as many questions as we can, but we can't provide medical advice, and we also won't be able to answer specific questions about individual cases.

Let's get started. Are you guys ready?

Dr. Andy Kahn: Let's go for it.

Rae: All right.

(01:10)  Does Tylenol use during pregnancy cause neurodevelopmental disorders?

So, one of the biggest recent headlines is about Tylenol after the Trump administration recently announced that using Tylenol during pregnancy can cause autism and ADHD. So I want to start with this. KJ, does Tylenol use during pregnancy cause autism, ADHD, or other neurodevelopmental disorders?

Dr. KJ Wynne: No, Tylenol use during pregnancy does not cause autism, ADHD, or other neurodevelopmental disorders. I know that some studies have found an association between Tylenol use during pregnancy and neurodevelopmental conditions, but this is by no means causal.

I'd like to take a moment to explain the difference between an association and causality. When we say that something's an association, we mean that these things track together. Think about eating ice cream and shark attacks. Both happen when it's hot. Both might even happen near a beach, but it does not mean that ice cream causes shark attacks.

Rae: Thank God.

KJ: Yeah. Um, it means that there might be something else that's unmeasured or difficult to measure, like the temperature outside, that's more responsible or might better explain why these two things are tracking together. That's very different than when something's causal, which means that it causes the next thing to happen. The best example is that when you touch a hot stove, you burn your hand.

Rae: That makes a lot of sense. But before we dive deeper, I want to talk about the causes of ADHD because this study at the center of this news comes from really reputable institutions like Harvard or Mount Sinai. These are places where commonly taught to trust. Now you're telling us we should be cautious about this study. Can you help me understand that a little bit more?

KJ: So the researchers from Harvard and Mount Sinai looked at a bunch of different studies that were published about Tylenol use during pregnancy and neurodevelopmental outcomes. One of the reasons to be cautious is because many of these studies measured how women would take the Tylenol differently. And the authors of the study say that themselves.

For example, one study measured Tylenol use during pregnancy by asking the doctors. We think about this as prescriptions. Another study looked at how much Tylenol byproduct was left over in a woman's umbilical cord blood. And yet another looked at, or asked women to remember how much Tylenol they used when they were pregnant. As you can see, those are very different ways of asking how much Tylenol did a woman use during pregnancy, which makes it very difficult to reach a firm conclusion.

When I examined that study, one of the main things that I took away was that the authors found that about 60% of the studies found an association between Tylenol use during pregnancy and neurodevelopmental outcomes. And the remaining 40% found no association, mixed results, or even that Tylenol use during pregnancy resulted in a lower likelihood that a child would have a neurodevelopmental outcome.

So, I really wanted to dig into this and better understand, so I did some further reading, and one of the studies that I read was out of Sweden. And in this study, it tracked 2.5 million children whose mothers took Tylenol and some moms who did not take this medication. What the authors found was that compared to women who did not take the Tylenol, the children of the women, um, who did take the Tylenol were more likely to develop a neurodevelopmental outcome.

But if you remember what I said about things tracking together, the researchers wanted to understand, "Well, is this just tracking together, or is it a real association?" And so whenever they tested to see if it was tracking together, what they found was that genetics likely better explains why we see that association. So from that, they were able to conclude that Tylenol use during pregnancy is not associated with neurodevelopmental outcomes.

Rae: So once they looked into it more, they found a better explanation for what they had found in the study.

KJ: Yes.

Rae: That makes a lot of sense. So, but then what do we know about the actual causes of ADHD or autism or other neurodevelopmental disorders? I understand it's a long word.

KJ: It's a long word. It gets me too.

So we know that, and research has consistently found that neurodevelopmental disorders are often about 60 to 90% genetic. This means that there are changes in the DNA that result in this consistent pattern of differences in the body, in the brain, and in how people behave. Scientists and mental health professionals like Dr. Andy have worked very hard over a series of years to group these patterns into discrete boxes, as much as we can. And those boxes often have titles, and we know it as ADHD, autism, and other neurodevelopmental disorders.

Rae: Got it. Andy, you work with people who are all across the spectrum of neurodiversity. How does news like this affect the people that you work with? How does it affect our community?

Andy: Well, I mean, on the surface of it, it's confusing people tremendously. When I meet with my clients and their families, a lot of what they're asking me is, "Did I do something that made my child autistic or have ADHD?" And it's hard enough trying to navigate how to help your child, how to be an effective parent, and how to navigate these different neurodevelopmental disorders. Same for me. Yeah.

So in these situations for parents, a lot of the conversation is, "What is it that we're doing that impacts our children?" And in echoing KJ here, this is not a causal thing. When we look at information, one of the things that we do in therapy a lot is looking for the best sources. So for a parent, they're not going to do what KJ's done. They're not going to do what Understood has done and try to independently evaluate the research.

So for parents, what I'm typically guiding them to is, you've got to look at resources like the American Academy of Pediatrics, which has said clearly in response to this report, there is not a causal link here. Taking Tylenol during pregnancy is safe and is appropriate. And considering all of the potential pain, the things that people go through during pregnancy, having the ability to treat those symptoms when you're bearing a child makes a huge difference in the stress levels of maternal health and the things we're seeing in the day-to-day.

So for my families, it's really important to say, "What's the source of truth here? How do we get good independent information?" And part of the challenge is, when you see a report like this hit the media, it's getting a lot of attention. And sadly, it's probably getting more attention than the reports from the American Academy of Pediatrics. So for professionals like me, we keep guiding people back. "Where is the source of truth? Who's independent? And where that information is coming from?"

Rae: It looks like we have another question from the chat, and I'd be okay to just jump in and offer it to you guys. Um, this is sort of for you both. What role does heredity play? How did the studies look at this? Did the studies look at that?

Andy: Thank you. Yeah, there's a lot to this, and I think that the other other part of this, when we talk about heredity, we talk about heritability, the the terminology, um, is that it's complicated. It's what we call multifactorial, meaning that there are a lot of different factors. It's not just one gene, it's a cluster of genes potentially. There are environmental and other factors that come into play. And we don't know all of the bits and pieces that that really lead to causation.

The other part of this, and it echoes my previous answer, was that for some parents when they hear that it's inherited, they start to experience shame and guilt. And when I'll say to parents, "You don't experience shame and guilt when we talk about your child inherited an eye color or a hair color." This is something that is part of our wiring, and it is in turn part of the genetic program in our bodies. And because we inherit it, there's really not much we can do.

But being, you know, careful about how we treat ourselves as parents, when we work with our children, and being able to give parents grace and say, "This is not something you've done. This is something that occurs that is part of our programming, and merely just living our lives with that neurodivergence is what this is about, not really looking at blaming." And in some cases, causation in the moment with your child who's identified isn't necessarily going to provide any relief from anyone to say, "Oh, I know what caused." Well, your child has ADHD, we're going to help you navigate and help them thrive.

KJ: Yeah, there have been several studies that have looked at heritability. Heritability is a word. Yes, I was looking for it. Thank you. Another really big, like word with a lot of consonants in it. Um, but yeah, there have been several studies that have looked at heritability, and they found that neurodevelopmental disorders are incredibly heritable. Um, I believe one study found that it's around about 74%, so we're firmly in that 60 to 90% range.

There's been a ton of different ways researchers have gotten creative about understanding heritability. This means like looking at parents and seeing if the parent has ADHD, how likely is it that the child would have ADHD? It means looking at ADHD genes in the entire family. So maybe only one person expresses ADHD symptoms, but the rest of the family have the gene changes that would make them, um, more likely to express ADHD even though they do not. Um, and it also has been looking at sibling studies. And so there's a ton of different study designs where essentially researchers look at family systems to say how many people in this family system display the gene changes or the behaviors that we know as ADHD.

Rae: Thank you. I want to pivot a little bit because one of the other things that we've heard a lot about lately, or not as lately as the Tylenol studies, but more recently is food dyes. And one of the focuses of the Make America Healthy Commission, which put out the report that we've been discussing so much last April, they decided that they were going to phase out food dyes from food in part because they claim there's a strong link between these dyes and ADHD.

This has also, I know, been a source of guilt for a lot of parents who have let their kids have candy with red dye in it or something that feels like a little bit more, you know, colorful than you might necessarily think. Andy, could you help us understand that a little? What's the truth there?

Andy: Sure. So, and again, we talk about the strong statement here is that the data has been existing for a lot of years that there are some associations specifically with red 40 and some signs of hyperactivity and inattention that are temporary, that occur when that body is processing these dyes. What we've seen in the research that is supported clearly is that there's a high variability in how kids respond to food dyes in general.

There is no evidence in the current literature that it is causing ADHD or causing other differences. The challenge here is that some of this is intuitive, right? We can go back to the '70s and talk about the Feingold diet, where Feingold talked about eliminating things like preservatives, additives, food colors, and things of that nature, and actually talked about having a diet that was supposed to cure or treat attentional challenges.

The reality is eating foods that are as natural as you can afford, local, foods that you can get that aren't necessarily going to have a lot of additives is something that's great when you can get it and if you can afford it. But generally speaking, eating foods that are widely available to you isn't something that is making your kids necessarily sick. The other important part of this though is that because it's so individualized, when I work with my families, we talk about using things like a food log.

Let's say for a week or two, you document what your child is eating and pay attention to how they're behaving during those times. If you notice there's patterns associated with certain foods, then you can have a conversation with your physician about, "Should I be looking at altering my child's diet? Should I look at removing casein?" like what we find in the proteins in milk or for some people who are gluten reactive. These are things that when you feel sick can make you feel uncomfortable and affect how you function in all ways. So I think there's a a common sense aspect of this is that there is some evidence in some places, and this was a European study that talked about red 40.

But in general, there's a lot of individuality here. So when we have a strong voice, lots of media behind it, we have to then go back to the source of truth and science. And right now the science doesn't support that there's a causation. But the nice part about it is we can do different things for our families as we can afford and as we converse with our physicians about it. Because for some people just eating a healthier diet is going to help them in general. May have nothing to do specifically with ADHD or autism.

Rae: So a lot of it comes down to individuality, making sure you're doing the best thing for your family within your reach, and common sense.

Andy: Absolutely.

Rae: So one of the reasons that things like food dyes have come up so much is that there is a greater focus on ADHD in general, especially in children. And one of the big ideas behind this is that there are too many kids being diagnosed with ADHD and therefore too many kids taking ADHD medications. Is ADHD overdiagnosed in the first place?

Andy: So, in my experience, the answer is unequivocally no. What I've learned over the 25 years of my practice is that we've historically done a really really bad job identifying and capturing the sheer number of people who actually have ADHD. When we think about women and girls, the symptoms that they've exhibited in a lot of cases might be a little more subtle than what we've seen in boys. And not having access to the broad enough definition of ADHD, which has occurred over the last 20 years, access to increased service providers and assessment devices has made the process more accessible.

So in that sense, we're seeing more people have access to good assessments and a better view of what ADHD really looks like. The other part of it is that there's a reduction in stigma. People are more willing and able to talk about ADHD. The explosion of ADHD conversations on TikTok and social media, particularly during the pandemic, was highly associated with starting the conversation. And as a psychologist, it's really important for me that we have these conversations. We talk about what these differences are and how they affect people.

So I think in that sense, no, I I don't think it's overdiagnosed. I think we're seeing people catch up. People who have had ADHD for a long time who weren't really sure what it was and how to get help for what was different for them are now actually being identified and seeking treatment.

Rae: Got it. And we have a question from the chat, but I want to kind of hear from KJ first before we move to it because there's a lot of research behind this. Are we getting better at diagnosing ADHD or is the rate of people who have ADHD increasing?

KJ: Yeah, evidence shows that we are getting better at diagnosing people with ADHD, which is one of the reasons that we see the rate of ADHD increasing. Here's a way to think about it that I like to think that works for me. Um, think about squares. We know that a square is a rectangle, um, but we didn't know that at one point in time. And it was through better understanding squares and rectangles that we, um, regroup them together.

Um, we know that squares have four sides. They have four corners, and they have 90-degree angles. And once we deepened our understanding, we understood that they were also rectangles, even though they looked different at face value. And this echoes exactly what Andy just said, especially in groups like women, um, people of color, people from rural communities like I'm from. We may look different at face value, but once we deepened our understanding, then we saw that they had the same characteristics.

Rae: It makes sense. It makes sense. I like squares and rectangles, and as someone who doesn't always process spatial relations, that well, I appreciated your description. Thank you. To the question from the chat, was there something in the report that implied or wasn't there something in the report that implied that kids need more exercise or to play outside more? Is that implying that ADHD or the rise in ADHD diagnosis is related to video games? Or is it directly saying that kids are unhealthy and need more exercise, and if they had more exercise, they wouldn't have ADHD? Andy, do you want to kind of take a crack at that?

Andy: Yeah, that's such a nuanced question because I think that in terms of, when we think about ADHD, what I look at working with my families, we think about the whole child. And a child who has ADHD may benefit from activities that have movement, that get them outside, that get them in environments where they can express and use their energies. If you think about someone who has difficulty in focus, attention, and in some cases even controlling their energy levels, being in a chair, being in an interior space for long periods of time may not be what feels best to regulate their body and their emotions.

Is that purely an ADHD thing? Maybe not. I would say that having worked in classrooms for so many years, getting kids to get up and move and and express their energy levels is sort of a universal benefit. So I don't see this as something that is caused. There's no evidence in the literature that video games and screen time are causing ADHD. What we see is that kids who are dysregulated, who are involved in high stimulation activities, may struggle to regulate themselves if they have a lot of time in that.

So for families, it's about common sense. If your child isn't socializing, your child is not physically healthy, is not getting the exercise they need to feel comfortable in their own bodies, then adding that to their daily life rituals and routines is only going to improve their sense of health and welfare. So for families, it's about a balancing act of how much time you spend in certain activities. And remember, when we think about adult activity levels, when we are trying to keep ourselves fit, adults have to exercise. And I drop the air quotes because when we were kids, we just played. We would get out and run around. We'd chase each other. It wasn't about being an athlete. It was about being active and having fun and running and screaming and yelling.

And I think that when it comes to a lot of our activities now that are seated or internal in terms of in the house, I do like to see my kids get more activity and be able to be more active. But that's more about regulating their bodies and energy than it is purely about ADHD.

Rae: Thank you. That really helps me understand. We have one more chat question. Um, you mentioned that one of the reasons that we're seeing a rise in ADHD diagnoses is that more women and girls are being diagnosed but that it looks different in women. Could you talk a little bit about how it looks different?

Andy: Sure. Sure. So again, there's a lot of individual aspects of this. But when we think about ADHD, the stereotype of ADHD is sort of that little boy who is hyperactive, who is on the move all the time, and is obviously not engaged in attending and doing the day-to-day activities. The inattentive form of ADHD is usually much more subtle, and we see this a lot more in women and girls, in that they may be internally distracted, sitting silently in space but their brains are going to all kinds of different things, or that they are hyperactive internally in terms of their thinking. There's thinking about 10,000 rapidly moving things, but not really being focused on what's going on around them.

What we've seen so much with girls is the idea that when they're young, we have this certain image of what it is to be an appropriately behaved female in American culture. So in terms of faking and and showing that they get it when they don't, or in the case of what we call it, trying to show that we know what we're what we're doing in an environment, when in actuality, we're just trying to figure our way through. And masking can have a lot of impact. One of the big issues in getting early and appropriate diagnosis is that the longer you go without being diagnosed and served and treated, the more likely you are to have emotional challenges like anxiety and depression.

And so much of what has happened with women and girls is that they get diagnosed with anxiety and depression and other differences as they get older. And then as they realize over time, well, I was depressed because I couldn't do what I needed to do with my intellect. I wasn't successful. I was anxious because when I was being called on, I was distracted, and I was embarrassed. And all the things that people do to mask and sort of guard from that has led to this whole generation or multiple generations of women and girls not getting the support they need. So we're getting a much better view of what ADHD really looks like, and because of that, we're seeing the big increases in diagnoses and having great conversations about what we can do better for women and girls.

Rae: As a woman with ADHD, I appreciate that, and I'm glad to see the progress. We have one more question from the chat, and KJ, I'm going to throw this one to you. What does the evidence say about the statement, quote, "Everyone has ADHD these days," unquote?

KJ: Oh, well, the evidence does not agree with the statement that “everyone has ADHD these days” end quote. Um, we know that the prevalence of ADHD is around, I believe about 6%, correct me if I'm wrong, Andy.

Andy: Yeah, it's in that neighborhood.

KJ: It's around 6%, so that means that the remaining 94% do not have ADHD. Um, but I know that as Andy was talking about, regulating energy is something that we all are trying to do better. Um, our attention is divided between our devices, and so that might be one of the reasons a person might make a statement like that, but that statement is not supported by evidence.

Rae: Gotcha. So just because you're distracted by your phone doesn't mean you have ADHD.

KJ: It does not.

(15:32) Is ADHD being overdiagnosed?

Andy: Yeah, there's another part to that too, which is that ADHD is also a spectrum disorder, meaning that ADHD exists in varying amounts and degrees in people. So someone who might be a little a little distractible but really struggling with executive function, organizing, planning, executing tasks may sit on a different part of the spectrum. The ends of the spectrum fall into the neurotypical range, which is any one of us can be distracted or have difficulty focusing because something is stressful in our lives or like you were saying KJ that we're distracted by our devices because we've become so overwhelmed with notifications and all of the things that the technology can can do to grab our attention that people will will normalize and say, "Hey, yeah, we're all a little ADHD."

I also would hear people say, "Oh yeah, I'm all, I'm a little OCD," when talking about being sort of particular about liking certain things, not being truly obsessive and compulsive. So I think that that's one of the downsides of the destigmatization of ADHD is that because people are so accustomed to it, they all sort of see themselves on the spectrum in a manner of speaking, when in actuality this this 6 to 8% of folks who really need the support are are really the real group of who this is representing.

Rae: I can attest to that. We have another question from the chat. ADHD is diagnosed more in the US than in other European countries. Why do you think this is? KJ, what do you think?

KJ: Yeah, so comparative studies are finding that the ADHD, uh, is increasing in other countries, as diagnosis improve. And so it's not so much a matter of like the US being totally different. It's more of a matter of other countries improving their infrastructure and changes as they develop and grow. So, I wouldn't, I wouldn't say it quite like that. Um... Could you repeat the question? I want to make sure I answered it fully.

Rae: The question is, ADHD is diagnosed, I think, more often in the US than it is in countries in Europe. Why do you think this is?

KJ: Why do I think this is? Yeah, I think that the prevalence rate is about the same in the United States as in other countries. Um, so it's diagnosed about the same. What might be different is the amount that is publicized, the stigma around it, and how we think about it. Um, so in other countries, especially in countries like Sweden, there's a more robust system for treatment where people can go through, and get the care. It’s less about how many people actually have ADHD and more about the culture around it, the way that we discuss it, some of the research, and some other reporting.

(28:35) Are too many kids taking stimulant medications?

Rae: We're going to shift gears a little here and start talking about ADHD medications. Um, this one is sort of an, it's tricky because it's come up a lot that the MAHA Commission suggested that too many kids are being given stimulant medications. So, is this true? Are too many kids taking ADHD medication?

Andy: All right. So, caveat number one, I'm a psychologist, I'm not a medical provider. What I've seen in my experience is that as we're seeing, as we discussed before, an increase in people being diagnosed, it only stands to reason that if you're diagnosed and you're seeking the gold standard of treatment, which may include things like medication, psychotherapy, behavioral training, that we would see more people seeking medication and taking medication.

So I think that a lot of this depends on the perspective of the reporter. I think the MAHA report has a belief that too many people are diagnosed and that in turn, too many people are getting stimulants. And I think that that at its core isn't true. I think that we're seeing that statistically, you know, 70 to 80% of people who are accessing medications are having success. And when we see recommendations from the American Academy of Pediatrics and a lot of the organizations that talk about the research, that medications are being used in a very appropriate way right now.

And I think it can be a great part of a treatment protocol for folks as long as we're understanding, "Medications provide an opportunity for a person to learn, to attend, to access, and to do the things that are hard for them naturally when they're not on medication." Medications aren't for everybody. For some people who have less severe symptomatology, they may find that using behavioral interventions or parent training can be enough to help them learn and create initial strategies. 

And in other cases, folks who are taking meds may not take them as they get older, as they find that they've developed skills and strategies that help them and no longer need medication. But the key here is ADHD is a lifelong difference. So as people think about how they're going to treat it and engage with it, I've not seen any evidence of over-treating or too many stimulants being used. I just think that the increase in diagnostics, um, are being matched with the increase in treatment.

Rae: In some ways that's a really positive thing.

Andy: I think so.

Rae: So KJ, one of the other things that's in the report, um, that was concerning is that they suggested the MAHA report suggested that there's no evidence that ADHD medications help kids long-term. Is it true that stimulants don't improve long-term outcomes?

KJ: No, that's not true. Stimulants do improve long-term outcomes. There's a recent study that also came out of Sweden that looked just at this. The study included about 150,000 people, and they compared people who started stimulants within three months of learning about their ADHD diagnosis to those who did not start stimulants so quickly.

What they found is that those who started stimulants were less likely to die by suicide, to get into a car accident, to engage in criminal behavior, and even less likely to misuse substances. So that is some strong evidence that stimulants are very beneficial for long-term outcomes.

Rae: We have a question from the chat, and I'm going to kick this one also to you KJ. I've heard that stimulant medications are similar to methamphetamine. Are stimulants addictive? Do you grow dependent on them?

KJ: I actually think that's a question for Andy.

Andy: I'll take it. So, again, I'm not, I'm not a physician, but the research has shown very clearly that while some stimulant medications are in the amphetamine class, what we're finding is appropriate prescribed use of stimulant medications actually decreases the likelihood of people becoming addicted to substances and using them in ways that are unhealthy.

The reality here is that when people are taking medications as prescribed, there are positive benefits that come from these kind of meds. It is one of the great things about stimulants for an ADHD brain is it allows the brain to release additional norepinephrine and dopamine, which are things that are in less supply in the ADHD brain or not actually received by the neuro, sort of the the neurotransmitters aren't being accessed the same way as we're seeing in folks who don't have ADHD. So, we're not seeing evidence that this is something that causes drug addiction or leads to misuse. And in most cases, they're not addictive substances.

There is a case where if you're taking these medications regularly and you're needing to come off of them, you will need to taper off of them with physician support because your body becomes accustomed to them and you can have side effects when you come off of them. So in that sense, the body is responding, but this is not addiction like someone who's taking methamphetamine in the community recreationally. It's a very different thing, and it's used very differently.

Rae: To kind of keep rolling with that, you have worked with families. You don't prescribe, but you've worked with families who have kids or patients who've been on stimulants for a long time. What have you seen with your patients in terms of long-term outcomes?

Andy: You know, with my clients who are taking meds, the long-term outcomes have been great. The conversation when people start medications in the therapeutic process is always thinking about what tools you're providing, starting with your child, to help them access and engage with their daily lives and to thrive, to be able to access the skills and abilities to be successful and to unleash sort of what they have capabilities in.

And so much of what we see in ADHD is the blocking of people's ability to do things that they could naturally do had the ADHD not been a factor, not blocking organization, executive function, and their ability to attend and focus. So, over the long haul, my clients have been really successful in engaging in their therapeutic process. On the other side of this, many of my clients will often talk about in the long term whether or not they want to stay on their medications into adulthood. And this is a really common conversation in the clinical setting, which is, you know, "I don't, I don't want to use meds as an adult. I want to try to do this on my own."

And my response is always, "If we're practicing and learning skills while you're on your medication and integrating them into your daily lives, then trying to have a trial off of medication can be really effective." But for other folks, they may find that long-term use of meds is really the best course of action, the same way someone with diabetes is going to stay on their medication because it's healthy for them to do so. And we approach it from the same mindset when we talk to physicians and get good medical advice.

Rae: It makes sense. I have another question from the chat that kind of goes along with that, and it may not be something that either of you can answer, but can stimulants become less effective over time or stop working?

Andy: Yeah, that's a good question. So, KJ, you want me to cover it? So...

KJ: Yeah, that would be a little bit outside of my wheelhouse.

Andy: Sure. Again, I'm not a physician, but in the sense of stimulant medications, we have to keep in mind that any medications over time can reduce in their effectiveness for a variety of reasons. Primarily, if we're giving stimulant medications to children, they're growing, maturing, gaining weight. And what we might see is that their bodies require a higher dosage of a stimulant medication over time. And for some folks, the effective dose of the medication may need to be tweaked and altered over time. So in some cases, yes, it may become less effective.

For other folks, they find that there's a sweet spot in their medication use. The thing that we always think about in terms of meds is that medications are always going to be used with something effective like therapy and skill building. And for a lot of folks, making sure they're doing both simultaneously, medications don't cure ADHD. They provide support for people to access what they need to learn while they're managing their ADHD. 

So in that sense, I think that there is a natural part of taking any medication where you may have a reduction in effectiveness over time, depending upon your body's metabolic process, becoming accustomed to it. And again, it's a neurological process. The body is always trying to seek homeostasis, which is the balance of what it does naturally and what you put into it. So sometimes the body will adjust to meds and they need to be tweaked with good medical advice.

Rae: Got you. So you said you've worked with a lot of people who've been on stimulants for a long time. Are they all very, very short? Because the next thing that was in the MAHA report is concerns that stimulant medication use means that children don't grow as tall, that it affects height. KJ, is that accurate? Is height loss associated with ADHD medication?

KJ: So height loss is associated with, um, ADHD medication. But the degree of that loss is something that researchers are still very much investigating. There have been some studies that have found height loss is associated with about 1 centimeter, or ADHD prescription medication use is associated with about 1 centimeter of height loss, which is about the diameter of this penny.

And some studies has found that it can be up to one inch, which is about the length of this paper clip. So researchers are very much still trying to understand why this might happen. And some researchers want to understand, "Well, is ADHD medication use and height loss tracking together?" If you recall at the very beginning of this live Q&A. And so one thing that they did was investigate, "Well, is genetics responsible?" And so when they look to see, "Would genetics better explain the height loss we see associated with ADHD stimulant use," they found that it was, and they found, they said, "Oh, actually genetics might better explain this." And so, um, the research is still very much evolving.

One thing I will add though is that researchers found that stopping medication for a short period of time under the supervision of a licensed professional, um, can result in some height recovery or, um, regaining that 1 centimeter to one inch of height loss that some people may experience.

Rae: Got it. So there is some effect, but it varies, and the causes might not be what we think they are.

KJ: Absolutely.

(41:01) How can we talk to our kids about scary or misleading media messages?

Rae: Gotcha. I have a final question. Andy, if families have specific questions, we've talked so much about things being individual, about getting good information, about making sure that you're accessing things that will get you clear answers that will actually answer the question rather than sort of fear and creating confusion. If families have specific questions about their children's health, what should they do?

Andy: Yeah, it's a great question. And I think that this whole conversation is the result of this, which is there's a lot of information that's being generated from sources that aren't well-placed with literature. So for my families, there's a couple of things we talk about regularly. First and foremost, making sure they have good medical advice, whether it's the pediatrician or primary care, someone who is working for them to individually look at the research, what's going to best suit them and their differences, and how to support them effectively.

The other part of that is having access to clinical providers. I'm biased. I think people do great with therapy and behavioral supports. And I think in that realm, what we see is getting good evidence-based support makes all the difference in helping people feel in charge of their own outcomes, have better understanding of their differences, and being able to thrive and feel whole in who they are. You know, in terms of being really, really well-informed and well-supported. The bottom line here is having a good source of data and truth.

When we think about going to organizations like ours at Understood.org, we're an independent authority using people like KJ to do independent review of the research. We want to make sure that what our clients and what our folks in our audience are getting are the best information that helps them make decisions for themselves. And I think that when we look at the data that's out there, Understood, American Academy of Pediatrics, these are organizations that are independent and looking to use the evidence-based information to guide what we do. And that's where families have to start.

There's enough feeling of shame and concern for them. If they don't have good data and good sources to give them confidence in decision making, parents are going to struggle and they're going to be really stuck in, you know, information and social media and from places that don't have the evidence base but might be convincing or really well-produced pieces of media. And I think in that situation, giving people a good grounding in where the information is, evidence-based, expert-laden, and so much of that of what we do at Understood.org is so important and why this work is so valuable.

Rae: That's a beautiful answer to that question. And it actually leads me into a community question that we have from Debbie Rieber, who's the founder of Tilt Parenting, which is an online community for raising neurodivergent kids. And she sent us a really nice question because she sort of pointed out that parents aren't the only people who are absorbing this information, who might be hearing this.

What is the best way to talk with our kids or our teens about scary or misleading media messages linking ADHD and autism to things like Tylenol or food dyes and the fear that they might internalize this stuff as having something wrong with them or that this is a negative thing to be neurodivergent?

Andy: Yeah, it's so hard because for parents, having open and continuous conversation with your kids about their differences is really important and being able to say to them, I think one of my favorite things from growing up was, um, I would ask my dad a question and he would say, "You can ask me anything." And as soon as I know, I don't know what it is, I have someone good who I can speak to.

And I think giving kids confidence that you're going to seek good evidence-based information, that if something's scary, we're going to talk about it and giving them permission to understand themselves in a good, healthy, positive way is really important. And I think when messaging comes off as negative and as accusatory and is talking about, um, differences and treatments in sort of a way that's vilified, you want to be able to give your child confidence that we're using the best data, the medical information, and the psychological information that's out there that really has a lot of support.

And sometimes when there's a loud voice that is inaccurate, um, knowing that you're going to be there to advocate for your child, to be there to reassure and to support them. And that in these situations, just making sure there's regular opportunity for those questions and answers. And if you have good providers, it can also give you that extra support. As a parent, I can say there's a lot of times when my child would not want to listen to me. And if I had a trusted confidant who was going to have these sources of information, they were super valuable in my raising my child. And I see this when I work with kids all the time that parents will turn to me as a provider, and I'll have their backs and be able to share the data with them. And I think that's such an important part of this.

Rae: Absolutely. As a parent, I totally relate to that, and as a person who grew up neurodiverse. Yeah. KJ, do you have any closing thoughts?

KJ: Yeah, I mean, I just echo everything that Andy said, um, continue to engage with, um, trusted sources, people who are really deeply engaged in the research and are doing their best to convey to you the full picture. Um, continue to speak with your healthcare provider and continue to build really strong communities. I know that's who I lean on whenever I feel worried or unsure about the news. Um, I go, "How do you feel about this?" And typically people like to call me down and they just remind me that I'm doing the best that I can. And I think that we all need that reminder that we're doing the best that we can and we're making the best possible decisions that we can every day for ourselves and for our family.

Rae: I think this is a very encouraging note to end on. Thank you Andy, thank you KJ for joining us and for answering all these questions in such a lovely way.

Rae: "Hyperfocus" is made by me, Rae Jacobson, and Cody Nelson.

Our music comes from Blue Dot Sessions. Our research correspondent is Dr. KJ Wynne. Video is produced by Calvin Knie and edited by Alyssa Shea.

Briana Berry is our production director. Neil Drumming is our editorial director. Production support provided by Andrew Rector.

If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to hyperfocus@understood.org. 

This show is brought to you by Understood.org. Our executive directors are Laura Key, Scott Cocchiere, and Jordan Davidson.