What If Autism Isn’t Always Lifelong? A Scientist-Mom Shares Autism Science and Hope | Dr. Theresa Lyons

About this Episode

What if the story you’ve heard about autism is incomplete—and changing? On this episode of The Brainy Moms Podcast, Dr. Amy and Sandy dive into the science with Dr. Theresa Lyons, an Ivy League-trained researcher and autism parent who translates complex studies into clear, practical steps. Our conversation challenges the “lifelong and fixed” narrative about autism, explores why some children no longer meet diagnostic criteria over time, and shows how a health-first approach might unlock progress in speech, behavior, and learning.

We talk about digestive health and constipation. We discuss the FRAT test and why a child can have “normal” blood folate while the brain is still starving for it. That’s where folinic acid (leucovorin) comes in, supported by multiple trials showing benefits in speech, social connection, and motor control, with manageable side effects and thoughtful dosing.

We also tackle hot-button topics with nuance: vaccines, detox capacity, glutathione, and acetaminophen. Two kids can face the same exposures and have very different outcomes based on genetics, immune status, and liver function. And we address the “autism cure” debate with care—respecting identity while refusing to accept avoidable pain, insomnia, or self-injury as inevitable. 

This conversation gives you a roadmap grounded in both evidence and empathy. It’s outside the scope of what mainstream media talks about. It might ruffle a few feathers. But we’re okay with that. At The Brainy Moms, we like to hear from lots of voices and we like to consider all possibilities. It challenges us and it challenges you. Join us! Subscribe, share with a parent who needs hope, and leave a review to help more families find practical answers.

About Dr. Lyons

Dr. Lyons is an international autism educator, an Ivy League scientist, and autism parent. She’s the founder and CEO of Navigating Autism, a groundbreaking platform that transforms the overwhelming complexity of autism science into clear, actionable steps for families. With a PhD from Yale and a deeply personal mission, she has worked with parents in over 21 countries, bringing evidence-based strategies that change lives. She uses her unique blend of rigorous science and real-world experience in giving parents what they’ve never had before: clarity, confidence, and a roadmap for progress. 

Connect with Dr. Lyons

Website: https://awetism.net/

Read the research study Dr. Lyons quotes in this episode about 37% of kids whose autism diagnosis does not persist over time:

Harstad, E., Hanson, E., Brewster, S. J., DePillis, R., Milliken, A. L., Aberbach, G., Sideridis, G., & Barbaresi, W. J. (2023). Persistence of Autism Spectrum Disorder From Early Childhood Through School Age. JAMA Pediatrics, 177(11), 1197–1205. https://doi.org/10.1001/jamapediatrics.2023.4003

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Read the transcript for this episode:

NOTE: This transcript was auto-generated by an AI assistant that thinks it’s smarter than we are. It’s not, but it has more free time than we do, so we gave it a low-stakes job. It probably spelled a few things wrong, but we’re okay with that. We’d rather spend our time interviewing cool guests!

Dr. Amy Moore: 0:01

Hi, smart moms and dads. Welcome to another episode of the Brainy Moms Podcast, brought to you by LearningRx Brain Training Centers. I’m Dr. Amy Moore here with my co-host, Sandy Zamalis. And before we introduce our guest today, I just want to remind you sign up for our free newsletter at theBrainyMoms.com where you can get really cool resources and tips based on the episodes and topics that we cover on the podcast. And now our conversation today is with Dr. Theresa Lyons. Let me tell you a little bit about her if you don’t know who she is yet. Dr. Lyons is an international autism educator, an Ivy League scientist, and autism parent. She’s the founder and CEO of Navigating Autism, a groundbreaking platform that transforms the overwhelming complexity of autism science into clear, actionable steps for families. With a PhD from Yale and a deeply personal mission, she has worked with parents in over 21 countries, bringing evidence-based strategies that change lives. Today, she’s going to share her unique blend of rigorous science and real-world experience in giving parents what they’ve never had before clarity, confidence, and a roadmap for progress. Welcome, Dr. Theresa Lyons. Thank you very much for having me.

Dr. Theresa Lyons: 1:23

I’m excited to be here.

Dr. Amy Moore: 1:25

I’m always super cautious about um having autism experts on the show. I’m really picky about autism experts and ADHD experts. Obviously, ADHD since that’s my specialty. And um I don’t I don’t want to get into an argument on air if I disagree with right. So um, but there’s so much controversial um in autism, especially in terms of treatment. Um and now, you know, in the last three months, causal um influences, there’s so much controversy. And so I I’m just thrilled that you are a scientist and you dissect the research and um understand how to interpret it. And um I think uh you’re just perfect for this conversation. Thank you.

Dr. Theresa Lyons: 2:17

Well, that makes me different than most autism experts, because most autism experts usually have an opinion and then they build everything around that. So they have an opinion for cause or what you should do or stuff like that. And that that is not how I approach autism. Um, because uh it’s you’ve got to understand all of it and then what is relevant to your specific child. So yeah, I’m I’m not opinion-based, I’m fact-based, and you know, like let’s talk about the facts, and then the parent listening can say, okay, is that relevant for my child? That’s that’s really the way I I talk about autism.

Dr. Amy Moore: 2:57

Yeah, I love that because confirmation bias is so real, right? And I I think that not just in dissecting research, but in general, right? When we have an opinion, then obviously we seek out other people who share that opinion and um anything that we can find that supports that opinion, and you know, not everyone understands how to read research, right? If that was not what your training is, um, then you don’t necessarily know how to dig into it and dissect that. And um so for you to go um from okay, here’s the body of research, and I’m gonna distill it down into what it says. And now what do we do with it? How does that inform our interventions? Yeah. Right? How does that inform how we interpret potential causes, which we know are multifactoral?

Dr. Theresa Lyons: 3:55

So exactly, yeah. And and not every child is is impacted the same way from the same thing. Uh it just gets then that’s where it gets complex, where people are like, oh, autism is is so complex, it’s it’s complex if you try to apply it to everybody. Right. That’s that’s where you get all those errors and oh, I don’t understand, and why didn’t this work? It autism just doesn’t work that way.

Dr. Amy Moore: 4:20

Yeah. Well, and I think that when you understand that there’s diverse ideology, right, which is hard to wrap your mind around. Yeah. Especially when you are when you are trying to help your child, right, then you’re dealing with, well, did I cause this? Did I do something? Did I expose my child to something? Did I, you know, did I make the wrong decision about vaccines? Did I, you know, breathe um polluted air during pregnancy? Right. You’re you’re trying to find a and that’s that’s I think that’s our tendency as humans is that we need an explanation.

Dr. Theresa Lyons: 5:02

Right. Yeah. A lot of times that holds people back or that actually clouds their judgment when they think it definitely is this, and you use science and different lab tests and stuff, and you realize, well, no, it’s not. So you you really need to have that open mind. And I could say I blamed myself for quite a while of like, oh, what did I do? What did I eat? What did I not eat? You know, it was all like I felt like it was my fault. But uh it that kind of thinking I think is important to have, but to continue on. So not to stay stuck in that, because then that really inhibits taking action.

Dr. Amy Moore: 5:43

Right. Yeah, absolutely. So, you know, I have three children, um, they’re all adults now, but you know, we I used to joke that we had a living, breathing psychology lab um in our home because we had an alphabet soup of uh diagnoses. And um, you know, my husband doesn’t have any, and I do. And so it it was we would joke, well, mom passed this on to me, or this is mom’s fault that my brain is like this, or you know, I wouldn’t have this if it weren’t for mom and her ADHD and her celiac and everything else, right? And um, and so at some point you have to say, yeah, it sucks that you got bad genes from your mom, but here are the things that we can do now, right, to kind of minimize the impact of that on your symptoms and how it’s showing up. And so we’ve I think we’ve done a really good job with what we put in and on our bodies and you know, so what we eat, what we don’t eat, what we choose to treat, what we don’t, right? And so um I think information is power.

Dr. Theresa Lyons: 6:58

Yeah. And the thing with genetic information as well is just because there might be some genetic differences, that doesn’t mean like game over. There there are things to do there that you just might need something different than someone else whose genetic makeup is is differently. So um it really is important to keep that combination of genetics and environment. And you know, there’s epigenetics and just all of that. So it is important to have that wide view, otherwise you can miss stuff or think you’re limited when you’re really not.

Dr. Amy Moore: 7:36

Absolutely. Yeah. So I’m excited to get into all of that. We’re gonna get super nerdy. That’s right. We are gonna get nerdy today.

Dr. Theresa Lyons: 7:46

No problem. There’s nothing wrong with it. There’s nothing wrong with being nerdy or not being nerdy. That’s right. We’re gonna be deep in it.

Dr. Amy Moore: 7:55

So my my husband is he’s actually a surgical nurse, but he is a bigger nerd than I am. So he dissects medical research as a hobby. I’ll walk by and he’s watching another YouTube, you know, video on you know, the cellular level impact of autophagy or whatever, right? I’m like, it’s your day off.

Dr. Theresa Lyons: 8:25

He would love this conversation for sure. He must well, if he’s in surgery and stuff, he really loves the inside of the body, the inner workings. Yeah.

Dr. Amy Moore: 8:35

Right? Yeah. Like he’s not the type that you would go, you know, what’s this rash on my arm? I don’t know. He’s not looking at the outside of the body, right?

Sandy Zamalis: 8:43

Like Um, before we jump into the um all the details of what you’re gonna share with us today, um, why don’t we start with a little introduction from you about how you became so passionate about autism and autism research. I can do that in two words.

Dr. Theresa Lyons: 9:02

My daughter. Okay. Very simple. Um it just so happens that I have a PhD in computational chemistry from Yale University. I worked in the pharmaceutical industry on drug design, and then switched over to more the marketing and business side. So understanding how information really flows and how doctors form their practice and how doctors are educated. And then my daughter was diagnosed with autism, and I was asking the specialist, okay, now what? What do we do? And um, the answers were really bleak. They’re like, uh, it’s lifelong, it’s probably gonna get worse, not really better. And um, there’s really not too much you can actually do. And so for me as a researcher, I worked in a variety of different therapeutic areas, and as a consultant, I had to come up to speed really quickly with different therapeutic areas. And so I just did that for autism. And the things that I learned, I thought, oh, this is completely different than what I’m hearing over here. So that’s where the passion came from, where it’s like, I need to know the right information, the quality information. I can’t just get, you know, second and third, fourthhand knowledge. I really need to go to the source.

Dr. Amy Moore: 10:26

Yeah. So when you say, oh my goodness, this is different from what I was originally told, uh, summarize that a little bit. Like what was different? What were you finding in general when you started researching it all?

Dr. Theresa Lyons: 10:42

Sure. So the main thing that I found that was different was there were publications all throughout the decades of autism research showing that autism is not lifelong for everybody. So when my daughter was diagnosed, that percentage was about 10%. So there’s scientific literature, quality literature showing that at the time, 10% of kids with autism lost their diagnosis and they called it an optimal outcome. And I thought, okay, what would what exactly does an optimal outcome mean? I even spoke with the researchers so I could really understand this because this was entirely different than than what I kept hearing from different doctors. And so optimal outcome back then was, you know, kids, they didn’t need speech therapy anymore, no OT, no PT, no, no extra therapies at school, no TA, all of the things that you’re associating with autism. They’re able to go on and live their life, do what it is that they want to do. And so that really got me curious first off, and then um really made me dive deeper into the research. And over the years, so just an update on that kind of research, uh, in 2023, a publication was um released showing that 37% of kids with autism lost their diagnosis. They’re no longer calling it an optimal outcome anymore, right? Because that percentage, it keeps growing and it’s quite large now. So the scientists, and this hasn’t caught up in mainstream media yet, but the scientists are really talking about autism as being non-persistent autism. And then there still is a core of persistent autism. So it could be lifelong for uh a subset of people. But it’s really important to know that number, 37%, because as a parent, you are gonna make entirely different decisions. You’re gonna question things differently if you know that 37% lose their diagnosis. By what age was what did the research say? So they were following them over a few years. There’s no cap on when an autism diagnosis can be lost. So that’s really important for parents to know. When um the 2013 research, that was research that was followed over two years. So that that was really intense. I thought I was like, wow, in two years, how how did these kids lose that diagnosis in two years? Um, the 37%, they were tracking them over several years. So it it they didn’t quantify the time as and there’s also no cutoff, right? So the researchers aren’t saying that, okay, if you don’t resolve things by age seven, then too bad. That’s that’s not in the research. Although that is something that many people feel, and a lot of parents feel that pressure, like I’ve gotta resolve things in my child before they turn five. And that’s based on um, you know, how our brain matures, and a lot of times um, the old research shows that IQ doesn’t really change much after five or seven years old. But there’s actual publications in the autism population that shows IQ does not stabilize around five or seven, that IQ can continue to increase much later than it would for someone without autism. So there’s all kinds of scientific research just showing that there’s there’s really not a limit on when certain things can happen.

Dr. Amy Moore: 14:21

Okay. So did this research show that losing an autism diagnosis was just the natural progression of the condition, or did it show that there were um interventions associated with um what was the term? Um persistent for not for non-persist.

Dr. Theresa Lyons: 14:47

Yeah. So um the research shows that parents are doing things, right? But um they haven’t quantified, let’s say, necessarily a formula. So I would have loved for this research in 2023 to um, you know, provide average vitamin D status, you know, like, okay, what were their B12? What was their homocysteine, right? What were, you know, certain metrics of health? Um, they didn’t do that. I’m hoping that will really be these next steps in research. Research takes a long time. I think it’s really good now that um losing the diagnosis is not um so mysterious anymore. Uh it’s not something that is, you know, happened so infrequently, right? So it is occurring so much that you really have to change the terminology. And um, all of this is getting buried in the science, right? So it’s not really getting talked about too much with mainstream doctors and whatnot. Um, in the research in 2023, they again didn’t quantify certain aspects as to, you know, what moved the needle the most for these different kids. One thing that was noted, which was contrary to what many people believed, was that as the children’s health started improving, the parents decreased the amount of interventions like ABA. So that is completely different than what most people think is what should be done. So insurance pays for ABA, and many people say that’s that’s the only thing you can do for autism, right? So these parents, as their children were improving, they were decreasing what mainstream media says is the only thing that works. So that was definitely a surprising but important bit of research uh for parents to know.

Sandy Zamalis: 16:36

Yeah. Yeah. What let’s let’s kind of start at the beginning, uh, especially if we’ve got some listeners that are maybe new on this journey. Um, what are some things that a parent needs to really ask for or look into? Because it sounds like from what you’re saying, there’s a lot of factors that go into autism. And so we need the kind of that breadth of what we should be looking at, what kind of diagnostics um would be helpful for a parent to be able to make informed decisions.

Dr. Theresa Lyons: 17:08

What could you share with our so the the difficulty comes even from getting a diagnosis? So a diagnosis is based on observation. There’s no urine test, stool test, blood test, MRI. There’s nothing that you can do lab-based that will come back and you get a piece of paper and it says autism in the range or anything like that. So the difficulty first is getting a diagnosis. There’s long wait lists, and the way the diagnosis is made is observations. So we usually get an assessment from physical therapy and occupational therapy and um speech therapy and you know, something school-based and psychological. And then that paperwork all goes to a specialist, so a pediatric neurologist or developmental pediatrician, and then that’s really who makes the autism diagnosis. And you really want to get in front of someone who has deep clinical expertise, specifically in autism. And sometimes those wait lists can, even in the US, be upwards of a year. So you might have these concerns and you might be on a wait list, but then there’s still time. And what parents can do, whether they have the diagnosis or not, is really start to look at their child’s overall health. That’s a really important place to start. Um, we talked about MTHFR, right? So that might be something if is has been important for the family, that might be something to pursue and understand. But there’s different aspects of health in general that are non-controversial. But so many times, if a child is a picky eater, right, there’s going to be nutrition deficiencies. And how do we resolve that? And are we going to give kind of supplements or how much of what should we give? So working with a dietitian, doing like a three-day diet analysis. These are all things that can be done to answer that question of in general, does my child have good health? Whether a lot of times what happens is you get that autism label, and then suddenly it’s okay to have poor health. And that’s really unfortunate.

unknown: 19:21

Yeah.

Dr. Amy Moore: 19:21

So I think that’s really important that you’re saying, okay, this isn’t just about treating what we think of as the autism symptoms, right? So the communication issues, the repetitive behaviors. We you’re talking about looking at the whole child and their physical health, maybe some of their genetic, you know, markers that we need to be aware of because that could influence the type of food or supplements that we expose them to, right? Like this is more than just saying, okay, they. Need therapy for their social communication issues. Right. They need right. We need to just accommodate the repetitive behaviors. Right. This is about optimizing their their gut health, their brain health. And what what we’ve seen in research is that some of those the ability to communicate can improve, right? When we look at this from an epigenetic perspective.

Dr. Theresa Lyons: 20:29

Yeah. And and what happens is many times when kids get that label of autism, then you know, you say, Oh, my child’s constipated, and you go to pediatrician or you go to some doctor, and they say, Yeah, that happens with autism. It’s just autism, right?

Dr. Amy Moore: 20:47

But yeah, like some mirror lacks, right? That’s what they tell you to do.

Dr. Theresa Lyons: 20:51

Yeah, if you get that. So, so there are a lot of and and parents’ intuition is just like, oh, that doesn’t feel right, right? And so it’s important for parents to listen to that intuition, but it’s just as important to make sure that child is getting appropriate medical care, whether there’s an autism diagnosis or not. So if you wouldn’t have your other child who does not have autism, if being constipated and just giving them Mirlax is a solution for the rest of their life, if that doesn’t work for you, then that’s where you need to start to focus on because constipation, right, impacts so much about learning, right? If you’re constipated, how are you going to feel comfortable in your skin to sit there and learn in school? You might have trouble sleeping then, right? You might have trouble with different motor control, right? So a lot of times tiptoe walking sometimes has contributed to being constipated. And so there are all these things that constipation just sounds like, oh, it’s so benign, right? But there’s real impact in that child’s life. So it’s important to understand why. Mirlax is okay for the short term. If you’ve got to provide instant relief, you’ve got to do what you got to do, right? You could do that with magnesium, you could do that with vitamin C. There are certainly other options, but um, you know, providing high dose of vitamin C doesn’t really resolve the issue either. It gives you that short-term relief, and then it’s like, all right, let’s figure out what the long-term causes and resolve that so then you don’t have to think about constipation again.

Dr. Amy Moore: 22:26

Yeah. And and gut issues are super common in autism.

Dr. Theresa Lyons: 22:34

It’s up to 80% of kids with autism have uh some type of GI problems.

Dr. Amy Moore: 22:40

And is is that um autoimmune related? Is this because there’s a high association of celiac disease in autism, or is this a functional issue in the gut?

Dr. Theresa Lyons: 22:52

Uh all of the above. And that’s that’s what makes autism complex. So I can’t just give one answer. Sometimes gut issues are um, there’s different opportunistic infections. And so the gut issues stem from opportunistic infections, which are a result of something else. So this is where it’s really important to understand how the gut is connected to everything. And you have to have that open mind as to um this is an opportunistic infection, with m which means it’s not the root cause, but it’s definitely something that needs attention and focus. Otherwise, um, you know, you’re you’re leaving your child very uncomfortable and unpleasant in many ways.

Dr. Amy Moore: 23:41

Sure. So I know that, you know, when when you’re constipated or you have slow motility, things like small intestinal bacterial overgrowth can occur. That is true. Yep. Which can be painful.

Dr. Theresa Lyons: 23:56

Correct. And can contribute to gas and bloating, which then when a child eats something, causes even more, which then, if they have trouble speaking, right, how do they tell you they’re in pain? In very odd ways and in ways usually not preferred, right? So these are when kids like hang over furniture, right? They put their stomach on onto something. They might um uh put themselves on the stairs in an awkward way. They might lash out, be irritable, right? And you might get bad behavior reports from school, like, oh, you know, they were they’re after lunch, they they were really dysregulated, right? And it’s like, uh, is it dysregulated? Or is there, you know, small intestinal bacterial overgrowth that is contributing to gas? And these again are are just so many ways where kids with autism are not fully understood. And the attention that would help them is going into maybe behavior approaches rather than really at that root cause.

Sandy Zamalis: 24:58

Yeah. I’m glad you brought up root cause because I think probably one of the most controversial topics on this is vaccinations, right? And gut health and, you know, mercury and vaccines and all that kind of stuff. Talk to our listeners about that a little bit. What do what does the research say about the impact of vaccines and autism? And do they go together at all? Um, is it sort of still working itself out because research is you know slow moving in this area?

Dr. Theresa Lyons: 25:31

Um so vaccines, the research on vaccines, it’s it’s hard to get a clear answer based on research, right? And so vaccines, uh I can say that I’ve worked with parents who whose kids have never been vaccinated and still had autism. I’ve worked with parents whose kids seems that the vaccine is really what caused a lot of the issues, right? The government has the vaccine injury program where they do pay out money to parents whose kids were injured by vaccines, right? So I don’t think there’s a debate as to whether vaccines can harm someone’s health, right? There’s a government program that pays out. You obviously have to, you know, have medical records and things like that. Um, but then when you try and extrapolate it and say vaccines cause autism, that’s where you know you might have a parent who didn’t give their child any vaccines, and then they say, well, how do you explain my kid? And that’s when trying to find one thing that explains all of autism is just it’s quite frankly impossible because it’s it’s yeah, it’s not that simple. And I’ve worked with parents in 21 different countries. The vaccine schedules have been different, the manufacturers have been different, the ingredients have been different, you know, timing and everything. So for some kids, does that really cause harm in their bodies? Yes, for sure. Does the government know that? Yes, they do. They have a program that pays out based on that. But when governments make decisions, they’re trying to make decisions for the global good of kids and the society. So it really becomes if a parent has a concern about vaccines, right? You’ve got to listen to your intuition. And you can say, all right, is this something we just don’t want to do? Is that allowed in the state? Some states have taken that right away. So parents either have to move or really they have their choices limited. And then the other thing is you can start to understand your child’s body more to see, okay, would they handle vaccinations okay? Let’s look at, you know, any type of um genes relating to detoxification. Let’s look at information about their glutathione status, right? Let’s look at um their liver health. Let’s look at their immune system, right? So doing something like the frat test will give information as to if there are antibodies in their brain that are preventing folate from being utilized. If the frat test comes back as positive and a parent has a concern about vaccines, they might really follow that intuition and say, okay, before we do a vaccine, how about we really understand what is causing the immune system to turn on itself like that? That might be the best first step to do before giving a vaccine. And if you’re working with a pediatrician’s office who is like, absolutely not, you need the vaccine, then maybe that’s not the right pediatrician for them. So this is where there becomes a lot of thought that has to go into this. But it’s important for parents to follow their intuition and to know that they do have choices. And some states have removed that choice. But it’s really important to think about this globally.

Dr. Amy Moore: 29:03

Can you give our listeners some um basic understanding about the frat test and the auto antibodies and what it tells us and why it’s important?

Dr. Theresa Lyons: 29:14

Sure. So this is the controversy, and I could explain the controversy with it too. So about three months ago or so, uh, RFK Jr. and President Trump um approved Leucovorin to treat some of the core symptoms of autism. And this was earth-shattering because there had never been anything approved by the FDA before that really addresses core symptoms. There are true two drugs approved that really help with mood and kind of uh stabilizing and basically relaxing someone. This is Leukavorin is really targeting the actual core symptoms, specifically of speech. So clinical trials were started over 20 years ago, and in total, there were five clinical trials studying Leucovorin, which is prescription folinic acid, which is vitamin B9. It’s been used for over 50 years. It’s generic, it’s been used over 50 years in oncology, not as an anti-cancer drug, but um with different oncology medications. Um, you need more um B vitamins, right? So with B9 specifically. So that’s the history on it. So it’s something that doesn’t have a large negative side effect. Oh it’s usually more just only upside, right? B9, if you take too much of it, you pee it out the next morning. No, no problem there. So the clinical trials were studying leucovorin, so increasing folate specifically in the brain, and what that impacts. And what they would do in the clinical trial is they would do a blood test to see if the child has these antibodies in their brain. And they’re not sure why these antibodies are forming for every child. Um, dairy seems to be a large trigger. So if a child has these positive antibodies, usually the recommendations from a very good doctor would say, okay, you’ve got to stop dairy for the next at least year or two. So you don’t want to give anything that causes the body to attack itself more. So you can start getting more granular than that. But that’s the general recommendation. And um what these antibodies do is they block the folate from being utilized. So methylfolate is what most people can take when they want to improve um their folate status, right? And um when there’s antibodies, they they block um the different pathways that folate gets into the brain. So leucovorin is folinic acid, it’s still bioavailable, but it it enters the brain in a in a different way. So what you’re trying to do is ensure that the brain has adequate folate for things like speech. And that is what most kids um most parents recognize in kids as how things are changing. So there’s also things like uh motor control, which increases in many kids when they they start to respond to Lucovorin. Um, socialization, right? So there’s more connectedness, um, and and speech. So a lot of parents their kids go from non-speaking to speaking.

Dr. Amy Moore: 32:33

So I’ve I’ve heard it described like if you are producing these antibodies, it’s like putting glue in the lock that allows folate to go through this door, through the pathway. But folinic acid is like using the back service entrance. So it’s getting the side door.

Dr. Theresa Lyons: 32:53

Yeah, yeah, yeah.

Dr. Amy Moore: 32:54

The side door. Okay, the side service entrance. Okay.

Dr. Theresa Lyons: 32:57

Side door. Yeah. Just the side door.

Dr. Amy Moore: 32:59

Okay.

Dr. Theresa Lyons: 32:59

It’s not inferior.

Dr. Amy Moore: 33:01

So, you know, like, you know, it just comes in in a different part in the pathway, right? Yeah. So it just takes an extra step or two.

Dr. Theresa Lyons: 33:09

Correct. It does. Um, and the important thing is to have the folate available in the brain. So it doesn’t really matter. And this is where you get into um, what is it that the child needs, right? So it would be great if they didn’t need any special intervention there. But um, when they have the antibodies, it’s really important that the brain still gets the folate. And the tricky thing here is that if you did a blood test to test for the levels of folate in the blood, they will either be normal or slightly elevated. So if you just did like a regular blood test, you’d be like, oh no, folate is fine for my kid. They have plenty in their blood, right? But it’s the antibodies that actually block it. And that’s why sometimes the folate levels, if you measure just in the blood, will be slightly elevated. It’s because the body can’t use it up. And so it’s really important to do the right test so you really get an understanding of what’s going on with you know your child.

Dr. Amy Moore: 34:11

So the frat test actually tells how much is actually available for use or being used or capable of being used?

Dr. Theresa Lyons: 34:22

It tells you if there’s antibodies. So it’s it’s a very simple test, and it, you know, it’ll say antibodies for blocking, positive or negative, for binding, positive or negative. So it’s it’s it’s you either have them or you don’t. It’s very cut and dry that way. Um, I will say the controversy, there’s still controversy, right? So the controversy is in the progression of science. So there are some doctors who still, and I think there’s some medical organizations that came out against the prescription of Leucovorin and saying there’s not enough evidence-based, right? Everyone throws that term around. There’s not evidence, there’s not evidence, right? So normally there’s there’s been five clinical trials that have been done around the world, not just in the US. However, those studies have been 100 patients or less. So that’s usually how things go, right? So you do these small clinical trials, you get positive information, you get an understanding of dosing and timing, right? So each of those clinical trials are following the kids for three months. So it’s really important for parents to understand this is you don’t just give a pill and then the next day or in one week you expect everything to be completely different. That’s definitely not the way it works. So you have these five clinical trials, and then usually the next step would be all right, let’s do five more clinical trials at least, but let’s have a thousand patients or you know, ballpark around there. So you’re increasing your sample size so you can really say, okay, we have confidence and this is you know helpful for that. Um, the FDA approval came before any of these large clinical trials have been done, but I think that’s just because the downside is relatively small and the upside is so great, right? If you have a child going from non-speaking to speaking, and the only downside that could happen would be aggression or irritability or problems with sleep. And if that happens, parents need to say, okay, am I giving the leukovorin too late in the day, right? That’s not good. Am I um giving too much too quickly, right? Let me just ease up on the dose a little bit, give a couple of days, and then you can continue on increasing it. So the downside is really, really small. And that’s probably why the FDA felt confident giving approval for it. But that is the controversy. So many doctors are prescribing it, but some are not saying we want to wait another 10 years, right, to get that research. And some parents are like, why would I wait 10 years? My kid might be 15 in high school, whereas they’re in preschool now. So these are the kinds of things parents need to think about. But doing the frat test answers the question, right? Is Lucovorin needed? Just do the frat test. It’s really simple.

Dr. Amy Moore: 37:11

So can we talk a little bit further down the pathway um into detox and glutathione? And speaking of controversy, how does uh acetaminophen come into play? Um if acetaminophen reduces glutathione, and we need that for detox, is that is that relevant here in autism?

Dr. Theresa Lyons: 37:37

Definitely. So detoxification is important if a child has been exposed to different toxins, and especially if there’s genetic difficulty in detoxing, right? So two children can be exposed to the same level of toxin, but one could have a profound impact negatively, and the other one, you there would be no difference whatsoever. So understanding detoxification is certainly important with autism. Um, and I at that same news conference, you know, the recommendation was that uh pregnant women do not take acetamedapin. And um these are all you know discussions to have with the doctor because a high fever during pregnancy is also not beneficial. So unfortunately, a woman would have to choose between, oh, is this a bad decision or a bad decision, right? Like, so it’s too, it’s like a lose-lose, which is never good. Um, so some doctors are really helping women understand their toxic load before getting pregnant, understand the importance of taking something like glutathione or NAC, which is a precursor to glutathione. And then just like, you know, sometimes you have to take an antibiotic, it’s not ideal, but sometimes you have a choice between an antibiotic and an infection. And so you might take an antibiotic, but then what else do you do? You say, all right, let me make sure I eat some yogurt, let me take a probiotic, right? And these are commonly prescribed by doctors who are prescribing the antibiotics. So yeah, make sure you eat some yogurt, take a probiotic, that kind of thing, you know, because gut health is important. Same thing with acetamedaphins. So if it is absolutely necessary that a woman take it or a child, right? Many times pediatricians tell parents after a vaccination shot, hey, take some six, take some Tylenol, right? Maybe it would be, let’s give some glutathione before getting pregnant. Let’s check the glutathione status level, let’s check the level of NAC in the body, right? So there’s things that you can do along with if you have to and you have no other choice to take acetamedaphen. So there’s there’s just a lot of awareness that I think it’s important to understand from all this discussion with Tylenol and to know that you do have choices.

Dr. Amy Moore: 39:58

And it’s nuanced, right? It sounds like it this is not a black and white. I I think what would have been more helpful at that news conference is um to have a scientist explain uh the mechanism of action there. Yeah.

Dr. Theresa Lyons: 40:14

Like in what we next time. Next time.

Dr. Amy Moore: 40:20

Right, exactly. Like why it’s a little a little concerning, or what might happen, or what we can do to mitigate the potential um, you know, negatives um to taking it.

Dr. Theresa Lyons: 40:32

So yeah, I what happens is the side, like so with Luca Vorin, it’s not as if this is new, right? For for people who are really entrenched in autism. Um, I have one of my videos, someone put a comment on it recently, like, you made this video eight years ago, you know, and it was like, yeah, I did, because this this isn’t new. What is new is the this discussion around health and and what really is health. That’s the new part. So I’m I’m very happy that this kind of discussion is happening, even though it’s controversial and some people get, you know, really fiery on either side. But I think overall what it’s doing is it’s it’s having us reflect more on our health and also having a better understanding that autism isn’t static, right? It’s not this lifelong diagnosis in which nothing can change whatsoever. So I think that’s really been the benefit of all of this controversy.

Sandy Zamalis: 41:30

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Dr. Theresa Lyons: 44:02

Yeah. And and that’s the thing. And and that’s why I think it’s so great that there is some of this controversy because it’s it’s changing the dialogue and it’s having people really think about, okay, what what is what is health? And when I go to the pediatrician, right, am I just gonna follow what they say, or am I gonna go in there with questions? And am I gonna choose a pediatrician that is open-minded and willing to have a conversation? Or am I gonna just stick with someone who’s gonna tell me, no, this is what we do. And if you question it, you’re out. You know, there there definitely are doctors like that. And is that someone you want on your team? So it’s it’s really about making sure you’re working with the right people. Whether your child is is healthy, right? Before we’re talking about even before anything might happen. Um, this is the way we want to think about health in general.

Dr. Amy Moore: 44:53

Yeah. Okay, so I have a couple questions, just some um trends that I’ve heard on social media uh that I would just love for you to speak, right, speak to based on uh the research. So um all right, the prevalence of autism has shown a dramatic rise from one in 10,000 children in 1970 to one in 31 in 2025. So that is an increase of 32,000 percent. So is that because uh like in 2013 when we switched from the DSM four to the DSM five, and um there was because originally you could not be diagnosed with ADHD and autism. So it was either or. Um, so if you had you had to choose one, um, but then the DSM V allows you to have a dual diagnosis. So is that part of the reason why we’re seeing more autism diagnoses? Because we don’t have to choose uh between ADHD and autism, because a lot of those symptoms do overlap. Um, or is something else happening to cause this rise?

Dr. Theresa Lyons: 46:09

It’s a combination of a lot of different things, right? So you have the um diagnosis criteria changing that you spoke about. You have um there’s no longer an Asperger’s diagnosis, right? So uh Asperger’s what used to be an Asperger’s diagnosis is level one autism. Um, so there is certain things about diagnosis that are changing, but the environment is changing and health in general and different diagnoses in general have been increasing, right? So it would be kind of odd if autism was staying the same or decreasing while everything else was increasing. And genetics certainly do play an impact, and but it can’t explain everything, right? Genes don’t change that fast. Um, but epigenetics does, and so you can influence genes based upon the environment. So again, you you have all these different factors, and I haven’t read a particular study that really can concretely pinpoint this is the reason. Um, so it definitely is unsettling in that sense, but it’s also comforting to know that the autism diagnosis doesn’t have to be lifelong for everybody.

Dr. Amy Moore: 47:28

Yeah. So along that line, the other uh trend that we’re seeing on social media is um based again on that same uh news conference um where uh you know RFK Jr. wants to help find a cure for autism. And so then what we’re what what happened on social media was this explosion of people saying, we don’t need a cure for autism. You’re saying that there’s something wrong with our child. And I will tell you, I had a very visceral response to that trend. Um, because I know even though I call myself an ADHD warrior and I own the label of being an ADHD warrior, what I wouldn’t give for an ADHD cure, right? Because it is a struggle every day, all day. The emotion regulation piece alone is a struggle. So of course I would want a cure. I would think that families who have children with autism or adults who have autism would want a cure to make their lives easier and to lessen that struggle. It isn’t diminishing your worth as a person to say, I want to help cure you. What are your thoughts on that trend and that kind of explosive response to this desire to find a cure?

Dr. Theresa Lyons: 49:02

So I will say I went through that as a parent way back, you know, we’re talking over a decade now. And um so my daughter was around three. And um when I started on like just reading up on autism, just in mainstream, I came across that same thing where it’s like this is who we are, and autism is who the person is. And if you try to change autism, you’re trying to change who the person is. And that, you know, I had to think about that for a while and say, okay, like what is it that I’m trying to do here? Am I trying to change my daughter so that somehow my ego is not hurt by her having a different way of life? You know, I went through all this analysis of why I am doing this? Am I doing it to improve her life? Yeah, there were certainly a lot of barriers and certain things. And so what I did was I just asked her, right? So it’s like everyone has to make their own decisions. So I put her in a high chair, she was three, and I got a big piece of white paper and I put it down on the tray on the high chair, and I got these finger paint, you know, Crayola and these yellow tubes and stuff, and then I just put a bunch of squirts of of paint on on the paper, and I said, listen, if this is how you are and who you are, I can love you. But if you want me to help you in any way, you’ve got to let me know. So just give me some kind of sign as to what I should do. And she she took her hands and kind of like moved things around and then picked her hands up and looked at me, which was unusual at that time. And she had never really made any artwork whatsoever. And it was the most beautiful heart. And so from then on, I knew for my daughter that she wanted me to help her with her health, help her engage in life the way that she wanted to, right? So that’s a decision for people to make on their own. I don’t think it’s right to force that decision onto anyone because if you say, I need to fix you, and if someone has taken that autism diagnosis and internalized it to be a characteristic rather than a diagnosis, then that’s where it gets very offensive, right? I understand that. Don’t don’t fix me. That’s that’s not for you to say. So there needs to be an understanding of when when someone says a cure, it might relate more to the focus on the symptoms, right? So it might be good to understand that, you know, constipation, diarrhea, gas, bloating, self-indurous behaviors, right? Um headbanging, um, punching walls, um, extreme emotional dysregulation, where you might be kicking your parents, biting them, right? All of these things are what autism is. And so if someone says, hey, listen, that is how I want my life to be, okay. So we shouldn’t be telling them how to live their life, but they should know and have the information that if they ever don’t want to have some of those symptoms, some of those behaviors, that there are options and you could look at health. And then the important thing is really to understand why we are saying that there should be two tiers of health access and levels of health. So if you have autism, then it’s fine to never be potty trained, right? Sometimes that happens. There, there sometimes kids will go to the doctor and they they haven’t been able to be potty trained at night. And the doctor says, Oh, that’s just autism, you know, it the the body sometimes, you know, you just can’t get it to do what you want. That’s just what they’re gonna do. So diapers for the rest of their lives. So is that something that shouldn’t be addressed? So it really comes down to what is it that that person associates autism with, and then what does that person want to do? So for my daughter, she made it very clear. She she gave me a heart, and actually, in my my YouTube videos behind me, uh, a lot of my YouTube videos, there is this this big fingerprinted art. So what I did was I I took that and I had it blown up and framed um because it was my North Star. I knew that my daughter wanted me to help her with her health, and she also knew I loved her regardless of what what or whatever she did.

Dr. Amy Moore: 53:32

I love that story. Well, we are out of time. Uh, this has been such a fast conversation. Oh my goodness, yes. Wow. I feel like we’re just getting started. I know. Um, so we would love it if you would come back and do two with us.

Dr. Theresa Lyons: 53:51

Certainly.

Dr. Amy Moore: 53:52

Would you be willing to do that?

Dr. Theresa Lyons: 53:53

My pleasure. Absolutely.

Dr. Amy Moore: 53:55

Okay. Uh, because I think there’s so much more uh that we can talk about. Um, so much more of your brain that we can uh glean expertise from, and that um it would be such a blessing to our listeners. Um, so great. We will just plan uh to have you back for a part two so that we can learn more from you. Um but that is all the time that we have for you to um today, listeners. Thank you so much, uh Dr. Theresa Lyons for being with us, for sharing your expertise, for blessing our listeners um with your knowledge. Um, listeners, we love it that you choose to spend this hour with us every week. We are going to put links uh to Dr. Lyons in our show notes so that you can find her and her work um and find out more about how to work with her. If you want more from us, um, again, please sign up for our monthly newsletter at theBrainymoms.com. We’re on social media @TheBrainyMoms. You can find Sandy on TikTok at the Brain Trainer Lady. That is all we have for you today. We hope that you feel a little bit smarter after spending this hour with us. We’ll catch you next time.