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S3/Ep 14: Beyond "Wait and See," The Science Mainstream Medicine Isn't Telling Autism Families
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When Dr. Theresa Lyons' daughter was diagnosed with severe autism, doctors told her to manage expectations. As a Yale-trained computational chemist, she had other ideas. In this episode, Dr. Lyons breaks down the gut-immune-brain connection, the 20-year gap between research and mainstream medicine, and why the answers families are desperate for already exist. They're just not reaching them yet.
Now helping families in 18 countries through her program Navigating AWEtism, she joins us to unpack the peer-reviewed science behind gut health, environmental toxins, acetaminophen risk, and why cutting-edge research takes 20 years to reach your doctor's office — and what to do about it now.
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Transcript
Introduction to Guardians of Hope and Mission
00:00:00
Speaker
Welcome to season three of the Guardians of Hope podcast. We are a community of parents, educators, health, legal and tech experts dedicated to positively impacting children's lives. The thoughts and opinions of my guests are not my own. This is a platform for sharing. Welcome everyone.
00:00:15
Speaker
When Dr.
Dr. Lyons' Autism Journey: A Personal Story
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Theresa Lyon's daughter was diagnosed with severe autism at age three, doctors told her what they tell most parents. That's just autism.
00:00:27
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The message was clear, manage it, accept it, but don't expect much to change. But Dr. Lyons wasn't just any parent. She's a Yale-trained computational chemist with PhD and years of experience in pharmaceutical research and drug discovery.
00:00:46
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So when the medical establishment offered little beyond wait and see, she did what scientists do. She went to the research. And what she discovered changed everything.
00:00:58
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Now there's usually a 20-year lag between when cutting-edge research is published and when it gets implemented into mainstream medicine. By leveraging her scientific training, Dr. Lyons was able to cut out those 20 years for her daughter, and the results were profound enough that her doctors encouraged her to start helping other families.
Founding Navigating Autism: Bridging Research and Parenting
00:01:20
Speaker
Today, Dr. Lyons runs Navigating Autism, spelled A-W-E-tism, emphasizing the awe-inspiring capacity of these children.
00:01:31
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where she translates the latest autism research into actionable steps for parents in over 18 countries. Her work addresses what mainstream medicine often dismisses, the gut-immune-brain connection, metabolic dysfunction, nutritional deficiencies, and environmental factors that impact autism, all backed by peer-reviewed science.
00:01:55
Speaker
Dr. Lyons, welcome. Thank you so much for bringing rigorous science to families who desperately need answers. Thank you. It's a pleasure to be here. Hello to everyone.
00:02:07
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All right, well, let's get started. I have a lot of questions
The Gut-Brain Connection in Autism
00:02:10
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for you. So I wanna start with um many parents hear that autism is neurological, not digestive from their doctors, yet you are seeing profound changes when gut health is addressed.
00:02:25
Speaker
Can you explain the science behind why gut dysfunction shows up as a neurological symptom? What gut issues should parents be looking out for in their autistic children? And what are the first steps they should take? I know it's a lot, but we can go step by step here. yeah Definitely. Okay. so the gut is super important, right? Because we're taking our food.
00:02:51
Speaker
And that's where everything is going. That's the start of everything in our body. So we really need a optimal functioning gut. And our body is all connected. So even though for the past couple of decades, we really isolated things and side load organs and specialists. And you know if you if you have a migraine, you go to the migraine specialist, not even the neurologist. right There's usually even a specialist of the specialist.
00:03:18
Speaker
And many times we really just think the problem is localized, but it's an entire body. So the gut is often called the second brain. So it's technically the enteric nervous system. So our gut is its own nervous system. And our gut and our brain communicate through the vagus nerve mainly. And when there starts to become inflammation in the gut,
00:03:49
Speaker
then this is where you can start to trigger other symptoms in the body opposed to just, you know, something relating to the gut. um So GI distress might be something we're thinking of, a constipation, diarrhea, and those are all common in kids with autism. um But gut inflammation can also correlate with mood changes. And so that's something that many parents don't necessarily think about. Inflammation is definitely a root cause of a lot of issues in the body, especially when you're dealing with someone who has autism.
00:04:26
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So, um, Let's see. Maybe say the second question again. My second question was what gut issues should parents look out for?
00:04:37
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Gotcha.
Effective Management: Focusing on Key Issues
00:04:38
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Okay. So the gut issues, like I was talking about, was starting to be diarrhea, constipation, bloating, irritability. A lot of times with autism, parents will see kids like...
00:04:50
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hanging on furniture in weird ways or leaning on the stairs. So what they're trying to do is put pressure on their gut, which might be causing them some discomfort. So they're trying to put pressure on it to to alleviate any of that pressure there. um The other thing about the gut and health and neurology is just to understand that in the gut, that's where about 70 to 80% of the body's immune cells are. So when you have a disruption in your gut, and let's say it's with the microbiota, mainly in the large intestine, this dysbiosis can actually
00:05:34
Speaker
shift things so they can shift the gut barrier which means then things will go through the gut that otherwise would have been kept in the gut and excreted. So when certain molecules go into the body then you can start to have systemic inflammation. So you might have started with an issue that was in the gut.
00:05:54
Speaker
Different molecules are now getting out of the gut, going into the rest of the body, causing inflammation there, and it can keep going and going. Now pair that with someone maybe who is also eating gluten or or something that is really irritating to their immune system. And you can really compound a lot of issues.
00:06:17
Speaker
Okay. um what are some of the steps that parents should take? and Like, for example, what did you do with your daughter when you, or if you found any of these issues?
00:06:30
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um There was a lot of things I did with my daughter. and The thing with autism is that what I did and what worked and what didn't work,
00:06:43
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is not necessarily the same, you won't have the same results with another child. So the important thing when when you have a child with autism, first is to understand that any of these symptoms don't have to just get worse with life, right?
00:07:00
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And they can get better. And so it's really important to have that determination and that understanding that autism symptoms are not static. right Yes, they can get worse if you don't do anything. They can get better. Yes, they certainly can. um So it's really important to have that as the the basis. And then from there, it's about identifying what would make the most meaningful difference in either this child's life or in family life.
00:07:31
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And that will vary. right So someone can be diagnosed with autism who is able to speak. And someone can be diagnosed with autism that is not able to speak at all.
00:07:43
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And so the focus of those two families would be very, very different. So I would suggest for the family to get very clear on, okay, three things, not everything, right? Because there might be 10 things that really need focus. But if you try to focus on 10 things at once, you'll basically...
00:08:00
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Just have too much noise, too much going on to really make any progress in any one of those focus areas. So pick three. it could be sleep. It could be inappropriate laughing in the middle of the night. It could be mood swings. It could be constipation. and You can start to see maybe there's an increase in irritability.
00:08:20
Speaker
when a child is constipated. And maybe when they're constipated, you're getting more calls from school, right? So constipation might be something to really focus on. So it really depends on on the child and what would really make a meaningful difference in that child's life and also the family life.
00:08:35
Speaker
Okay, fair enough. Thank you for that
Evidence-Based Interventions for Autism Symptoms
00:08:38
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information. um Let's say a parent just received an autism diagnosis and lots of family are here. They are completely overwhelmed by the abbreviations that come with it OT, PT, ABA, IEP. Then we talked about dietary interventions, um functional medicine. in your experience, what are the low-hanging fruit interventions that have the strongest scientific backing and can make the most difference? What can make the most difference?
00:09:12
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You want to align with what your child needs the most. most So we could just take that constipation example, right? So With constipation, you might see different behaviors. You might see toe walking, you might see the irritability, you might see problems sleeping. And you know those problems might increase ah the longer someone hasn't pooped. And then on the day they poop, You might be like, oh, I always know whenever he poops, then that day is a great day and the next day is a great day. But then we start having the problems again. So you've already mapped out what the issue is. And now it's about resolving it, right? So constipation,
00:09:55
Speaker
No one should be living their life with constipation, right? Autism or not. So what happens often is when someone has an autism diagnosis, then a lot of things just get said, oh, well, that's autism. Oh, they have trouble potty training.
00:10:10
Speaker
That's just autism, you know, sensory needs. Oh, they can't walk into a department store, you know, the lights and everything. Yeah, that's just autism. So a lot of things get written off as just autism. So as a parent, if you have any of these concerns, you really want to make sure that your child is getting adequate medical attention.
00:10:29
Speaker
So we can look at castipation and in two ways, right? So you can give immediate relief if you go to maybe your general pediatrician who's not an expert in autism. They're they're not really the doctor to ask any autism questions, but castipation questions, yes. And so they might say, well, there's nothing you can do. That's just autism. Or they might say something like,
00:10:51
Speaker
okay, how about some Miralax? you might have more of an integrative pediatrician that might say, okay, maybe some magnesium, um vitamin C. Let's start giving things to alleviate whatever this constipation is.
00:11:07
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So you do that and conventional medicine is great. It gives you a solution for in the moment. But if you stop that, if you stop the Miralax, if you stop anything else, right? what's going to happen? Constipation is going to come back, right? And all of those resulting behaviors. So that's conventional medicine. And then there's functional medicine. So functional integrative medicine, that's when doctors are really looking at What is the root cause?
00:11:33
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So what is causing this constipation? Is it the dysbiosis? Is there a gut infection? Is motility in the gut impacted? Right. So they're really starting to ask why. Why is there constipation? You could take that a step further. Is it because the child is not getting adequate hydration?
00:11:52
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certainly can happen, is it because the child has no fiber, right? Maybe they're just eating cereal and I don't know, pizza and stuff like that, right? So they might not be getting adequate fiber.
00:12:05
Speaker
So it doesn't necessarily have to be something so drastic as a gut infection. It certainly could be something as obvious as lack of hydration or the way they're eating. Now, sometimes kids are picky eaters because of different deficiencies or because of different gut infections. So there's a lot of possibilities. So it's really important to work with people who are experts and who know how to look at the different angles and figure out what is the actual root cause. And so then a parent can focus on that root cause, resolve it,
00:12:40
Speaker
And then when they stop that conventional medicine approach, then the child won't have that constipation as an issue. And if the constipation isn't there, right, and we had an understanding of, okay, if they don't poop for two days, then they start missing sleep. And then on the third day, we start having problems at school and there's toe walking and irritability and there's, you know, a 50% increase of meltdowns, right? you You can quantify all of this information by just taking data.
00:13:08
Speaker
And so these these are important approaches for parents to take, right? Constipation is not necessarily controversial. There are very set standard ways of how to deal with constipation and what can cause constipation. So this is the important way for parents to think about the health of their child in the sense of how can I provide relief now, right? Everybody needs relief, but then long-term, what was the reason? and let's work on resolving that.
00:13:40
Speaker
Okay.
The Role of Acetaminophen in Autism
00:13:41
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Thank you for that, Dr. Lyons. Now, I want to switch gears a little bit and talk about something a little controversial. um There's been major attention in the last couple of months from the current administration linking acetaminophen use during pregnancy and early childhood to autism um Tylenol, you know, has been named as a contributing factor, but you are a Yale trained scientist who reviews autism research daily. Can you help us separate what's happening here between the science and the politics and maybe shed some light to educate like the audience a bit?
00:14:25
Speaker
Sure. So with acetaminophen, the controversy is coming from when someone takes acetaminophen, it really interacts with the liver and depletes a lot of glutathione, which is what the body needs for detoxification. And that is not disputed too much, right?
00:14:46
Speaker
The fact that Tylenol, acetaminophen does that. What there is dispute over is how is that related to autism? So that, i can't say there's absolute science one way, right? So there's definitely information on on both sides. So the way really to think about it, because as as a parent, it's like, okay,
00:15:10
Speaker
I think I've also been told I should give my child Tylenol a vaccine or, you know, what do I do? Does Tylenol, do I not use Tylenol at all? So the way to think about it is just like,
00:15:25
Speaker
when antibiotics was used a lot, right? Everyone started using antibiotics. And then we discovered and learned that, oh, wow, okay, it kills the bad stuff, but it also kills the good stuff. And that is one aspect of gut dysbiosis, where it can come from.
00:15:42
Speaker
When you have that The doctors then said, okay, right, we've learned, it took a few years. The doctors, usually when you take an antibiotic nowadays, they tell you, okay, take some kind of probiotic as well, right? And why is that? It's because the strategy is, okay, we know we're gonna kill some good stuff along with the bad stuff, which is why the antibiotic is needed. So let's just be a bit proactive and start populating good stuff, right? So a similar approach could be taken for acetaminophen, right? So if you think you're going to have to take acetaminophen and you're becoming pregnant, right, one thing you could do is understand your glutathione status. Right. So you certainly can have a good understanding. There's different tests you can take that would give you a good picture of glutathione, your detox abilities. That's great information to have being pregnant or not. Right. then, you know, like, OK, hmm.
00:16:43
Speaker
I really shouldn't take Tylenol, but maybe I should actually focus on replenishing my body so it can have proper levels of detoxification. And then if you do take Tylenol at any point in your life, then you can also be proactive just like we do with antibiotics, right? So we can be like, okay, we'll take a Tylenol, but then maybe we'll take some glutathione. Maybe we'll take some NAC. Maybe we'll do some things to to help with inflammation in another way, right? So there's many things that can be done. So it's not as if a mom has to choose between having a high fever or taking Tylenol, right? There's there's definitely a lot of area in the gray. And the other thing really to think about too is there's other things like ibuprofen,
00:17:31
Speaker
So Tylenol isn't the end all be all. So there are options and it's really important to have that conversation with your doctor as to, okay, should I be concerned? Should I not? How can I tailor it to me to make sure that if I need it, I can take it or I have other options. So that's where you really want to have that dialogue and that conversation and that forethought of, all right, if I need this, how am I going to incorporate that?
00:18:01
Speaker
who Yeah,
Environmental Toxins and Autism Impact
00:18:03
Speaker
no, that's fair. And um I wanted to talk about another factor um that is environmental in nature. So your research coverage includes air pollution's impact on autism risk. even at ah levels that are considered safe?
00:18:22
Speaker
For parents who are pregnant and worried, or for those who already um have children who may be autistic, what should they understand about the environmental factors?
00:18:34
Speaker
Environment plays a huge role in all of our lives and also in autism. So toxins is one of the source where the body will have inflammation, right? So if we have a toxin, we have something that's an irritant, um our body will start to become inflamed. And inflammation really is a ah root cause of so many health issues, including many that are related to autism. Not every child with autism, they do not all have an issue with inflammation as as the root cause. But it certainly is ah a topic that parents really want to understand fully their child and really take a look at their own environment, the environment that the child's in. And if there is any toxicity, so mold exposure, air pollution, they can really work with a functional medicine doctor to focus on, okay, let's do a test to measure, right? So this is not all ambiguous and let's just decide to detox for some reason. You really want to have science and you want to use lab tests to guide your decisions. So there's plenty of different tests to look at.
00:19:48
Speaker
toxins, so toxins from the environment, to glyphosate, so many toxins, mold toxins, that can all be quantified with different lab tests. So if a parent has a concern about toxins specifically, always do a lab test so you know whether or not that actually is an issue.
00:20:09
Speaker
And if it is then you want to do an intervention that really focuses on that. And then retest to make sure that the issue has been completely resolved or that sometimes when parents do interventions and they're doing a detox, um the numbers don't change, right? And maybe the behaviors change a little bit, but parents then start to say, okay, wait, I know toxins are a problem and I know we're doing, you know, maybe binders and maybe the sauna and all these different interventions, so we should see a change. So the parent has taken out the guesswork, but then they might not see too much of a change and they do the test again,
00:20:50
Speaker
Sometimes levels are exactly the same. And after analysis, sometimes it's because the child is continuing to be exposed to that toxin. So it's really important. First step is to make sure that the child is not continuously being exposed to that toxin. And that happens a lot with moldy environments and mold exposure.
00:21:11
Speaker
who Thank you, Dr. Lyons. Okay, I have one more question for you. And, you know, I'd love to hear your experience.
Optimism in Autism Treatment: A Research Perspective
00:21:20
Speaker
um If you could leave parents with one thing, um especially those newly diagnosed and terrified, Or those who've been fighting for years and are exhausted. what do you want them to know? um What does real like realistic evidence-based optimism look like in autism based on your experience?
00:21:44
Speaker
So the research shows in 2023, research study done by Boston Children's Hospital showed that 37% of kids with an autism diagnosis lost that diagnosis, meaning they did not need speech therapy anymore, occupational therapy or physical therapy or you know extra supports in school. they could just go on and and live their life the way they wanted to. And it's important to hear that for the parent who's at the start of the journey, right? Because if you're at the start,
00:22:19
Speaker
and the doctor tells you there's nothing you can do, this is lifelong, nothing's really gonna change, more than likely it's probably gonna get worse. As a parent, you're not gonna be proactive.
00:22:30
Speaker
You're not gonna even expect things to improve. So it's really important to understand what's possible for a child with autism. And even if they retain the autism diagnosis, they can still have an amazing life. So the important thing is always to focus on what are these health issues that are really causing such a problem And how do we resolve them? How do we alleviate them? How do we make it better so that it's not really impacting life so much?
00:22:56
Speaker
And for the parents who have been on this journey for a long time, they might know that that stat, right? So when I, when my daughter was diagnosed, that number was 10%. And so now more than a decade later, the research shows it's 37%, right? So that, that number is increasing. um It's really important to maintain a focus. So I see a lot of parents who try many, many things and they just try this and try that and try that.
00:23:30
Speaker
And that's where a lot of exhaustion comes from. And then that's when parents are like, ah, just didn't work. Right. But you want to spend the time to think about, okay, what are the issues for my child?
00:23:42
Speaker
list them out, three top ones. And then almost even on a separate piece of paper, okay, what addresses those? Okay, that's where we need to start focusing so that you really align what the child needs with evidence-based practices that show impact. And also keeping in mind that many doctors will say, oh, that's just autism, but just don't listen to them.
00:24:11
Speaker
Thank you, Dr. Lyons. Okay, real quick before I let you go, um tell us a little bit about your organization, navigat Navigating Autism, and how people can reach out to you or find more information about it.
Navigating Autism Platform: Science-Based Parental Guidance
00:24:24
Speaker
Sure. So navigating autism is a platform that we have created based upon the navigating autism matrix. So I worked with parents in 22 countries now, and we've been able to understand what are the seven categories that parents really need to focus on, right? Autism is so complex. It's so different child to child.
00:24:47
Speaker
And there's so much to focus on um that it's just even hard to to be organized with all of this. So we have the Navigating Autism Matrix, which breaks things down in seven categories. And then our platform teaches parents the science, the cutting edge science that are related to each of those categories so they can learn, OK, is this is relevant to my child? Yes or no? If yes, then let's focus on it, resolve. If no, then all right, let's go to the next thing. And so it really helps with pacing as well as motivation. So we also have board certified health coaches that help parents stay motivated and stay in that mindset of, OK, I'm going to figure it out.
00:25:30
Speaker
I'm going to figure it out because this is ah a long journey. It's not something that really gets resolved in, you know, like 10 days or a month or you know something along those lines. It's it takes a lot of diligence. So we have this platform that really takes a lot of the complexity of autism and streamline streamlines it into something that's really doable for a parent.
00:25:54
Speaker
Fantastic. And what's your website? I'll link it below. Sure. So you can find us at navigatingautism.com and autism is spelled A-W-E-T-I-S-M. And also have a YouTube channel for over 10 years. So if you're interested in any of the science that I was starting to talk about, there's a lot more videos on my YouTube channel where we really go into the science.
00:26:19
Speaker
Thank you. all right. Well, it was so great to have you on and talk about the science behind the diagnosis and the treatment. So I appreciate your time. Thank you.