Healthy Living by Willow Creek Springs
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Healthy Living by Willow Creek Springs
Navigating AWEtism with Science, Community, and Care with Dr Theresa Lyons
What do you do when the experts say “lifelong” and offer little beyond wait-and-see? We sit down with Dr. Theresa Lyons—a Yale-trained computational chemist and mom to a child once diagnosed with profound autism—who chose a different path: translate research into action and build a community that makes doing the right next thing possible. Theresa shares how she moved from drug discovery and global health to PubMed deep dives, contacting researchers directly, and assembling a care team that addressed real health load: gut function, immune balance, sleep, and sensory regulation.
Across our conversation, we break down why autism is still diagnosed by observation, which pitfalls to rule out first (like hearing issues in toddlers), and how “optimal outcomes” reframed what progress can look like. We dig into the gut–immune–brain loop, the mechanisms behind gluten-driven permeability, and why understanding the “how” turns diets and supplements from guesswork into targeted experiments. Theresa also spotlights a hot topic in the field—folinic acid (leucovorin)—and how folate transport issues and antibodies at the choroid plexus can make language gains possible for some kids. The message is not hype; it’s a method: find the mechanism, test the hypothesis, track the result.
We open the doors to the Navigating Autism platform, where families worldwide get structure, small-group support, health coaching, and access to functional testing options. Seven categories guide the journey—healthcare, diet, supplements, probiotics, education strategies, mindset, and celebration—so nothing essential gets missed and progress compounds. Teresa’s personal story, plus a moving family case, shows what can change when parents have a plan and a team. And her reframe from “autism” to “AWEtism” reminds us that determination and dignity are not soft ideas; they’re fuel.
If this conversation gave you clarity or hope, tap follow, share it with someone who needs it, and leave a review so more families can find science they can use. Your next step might be one small change—and we’re here to help you take it.
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Well, hello, and welcome back to the Healthy Living Podcast. I'm your host, Joe Grumbine. And today we've got a very special guest. Her name's Dr. Teresa Lyons. And uh Dr. Lyons works with families in more than 21 countries. And uh these are people that are looking for trustworthy science-based guidance on raising and supporting autistic children. And she's created a program of navigating autism, and that's spelled AWE. She focuses on helping families transform overwhelm into practical steps they can use, whether it's interpreting lab results, navigating school challenges, or finding out which wellness strategies actually have a scientific backing. Well, Teresa, without going any further into that, I just love to jump into a conversation. I want to welcome you to the show. How are you doing today?
SPEAKER_01:Thank you very much. I'm doing fantastic. Happy to be here.
SPEAKER_00:Wonderful, wonderful. So it sounds to me like your story came to you. Um, you know, yeah. Very true. Your case, it was pretty straightforward. Why don't you get into that a little bit?
SPEAKER_01:Yeah, it this totally came to me. This is all everything I'm doing right now, pretty much is nothing that I ever planned or thought about doing or anything like that. So I had uh my daughter, and she was about three and a half years old when she was diagnosed with autism. And um, at that time, I had never worked in autism before. I have worked in the healthcare industry. So I have a PhD in computational chemistry from Yale. I I'm I'm a chemist through and through. So theoretical chemistry, physical, like organic chemistry type. Um, and and that's what I was doing. So I was focused on on health, um, but never in the autism space.
SPEAKER_00:This is a whole different side of the spectrum there.
SPEAKER_01:Yeah, no, and I'm doing like drug discovery. So you know, I started, you know, understanding how molecules are interacting with proteins and you know, so very granular. And um then I did transition more and more onto the business side, so understanding marketing, and then I also worked for nonprofits in the healthcare space, um, working with developing countries and develop delivering healthcare to them. So I've I've been focused on healthcare my my entire career. Um, but then when my daughter was diagnosed with autism, that's when really everything changed.
SPEAKER_00:So, what brought you to um this diagnosis?
SPEAKER_01:My daughter was not developing um, it wasn't a surprise. Uh, so when she was uh diagnosed, it was of the more profound autism type. So not speaking, not pointing, not smiling, not playing. Um it it was it still was devastating, and I certainly needed a period to to grieve the changes as to kind of what life was gonna be. Um but that's that's that's how this all started with that diagnosis.
SPEAKER_00:So you went from sort of recognizing that something doesn't seem to be right to okay, now we know what it is, I gotta deal with it.
SPEAKER_01:Right. And so then with all this healthcare background that I have, I was just like, okay, so what do we do? You know, like what's what are our options? And and there there really was none. I was told, you know, this is a lifelong diagnosis. Um, things are really gonna get harder, not easier. Um, and there's there's minimal things to do. And it it just really wasn't a satisfying answer for for anyone to be told a loved one, like, this is it, you know, like there's nothing you can do. That's not many people are gonna just accept that.
SPEAKER_00:So, as a point of reference, um, how old is your daughter now? She's 15. Oh, okay, okay. So this is this is about 12, 13 years ago. Correct. Yeah, okay, perfect. All right, so things were a little different back then. Um and and I think that um my experience, not having raised an autistic child, but working with some um through our programs, there's become uh a very least a much um more profound recognition of the situation. You know, it's like weird. I don't like to call it a disease or anything like that. It's a it's a condition. It's uh, you know, now they call it neurodivergent. They've got all these terms that they use for what it is. Now it's a spectrum, it's like it's all these different things where you know, like back in the old days, they just say, you got this, and and now it's like, well, okay, well, you're somewhere in this range of things that can happen now. I think there's a lot more, I don't know, at least understanding of of the situation, maybe a little better.
SPEAKER_01:Well, the the issue stems from the diagnosis, so there is no blood test or urine test or MRI, there's no definitive piece of paper that has some kind of number tied to your child's body that says this is autism, exactly. And so then it's so like that's how it is. Yeah, it it gets yeah, it's it's very frustrating that way, and so that's why I think there are so many terms for it, it being autism, because it can look so differently, right? So, how do you use one word to describe many things? It's very difficult that way. Um so yeah, I think that's where a lot of the ambiguity comes from. When when you get a diagnosis for autism, it's based upon observations. So usually you have uh reports from like a speech therapist and an occupational therapist and a physical therapist, and you're looking at all the different delays and the difficulties um and what's really impacting life. That's really what makes an autism diagnosis is that it impacts daily living.
SPEAKER_00:Um and that's it's it's all based on observation, so that's well, and they also have to determine that like a lot of the if you will, symptoms of autism have are sensory, and so you have to determine that the senses are physiologically functioning, like you know, a child could have a uh a hearing impediment, and that could dramatically affect how they act that might have nothing to do with their processes, 100%. Yep, yeah, at the same time, they could have no problem and act like there's a problem, and you know, so at a two one two-year-old child where the communication isn't clear, you know, you don't have language the same way you do as a you know, eight or ten-year-old child, it's a lot more difficult to sort of figure out, you know, how yeah, it's it's very true.
SPEAKER_01:And the hearing aspect, like that's one thing. So, so many times doctors say, okay, let's try and rule things out before we just say it's autism, right? So hearing is one thing. And for for kids who are younger, there's different tests to do, and there's specialized um, you know, hearing labs to go into. Um, you can even get a procedure if the the child won't sit still or even like pay attention to certain things. Hearing tests can be done under anesthesia. So there are all these things to to do to kind of eliminate that because that is a hundred percent accurate. Sometimes it's a hearing issue, not necessarily a developmental issue. Um, and then the hearing gets resolved and it it ends up not being an autism diagnosis. But that's that's what doctors want to see beforehand before doing and giving an autism diagnosis. They they usually want to be very thorough, right?
SPEAKER_00:So now you've got this diagnosis, and basically they're like, Well, it's gonna suck to be you. I mean, like they're not really giving you like a uh a series of strategies, or you know, there's all these programs available, there's all these um, you know, mentors, or you know, there's not like all these resources for you.
SPEAKER_01:Yeah, it and it was really more like, especially because I'm coming from the healthcare industry where I was helping uh create um education programs for doctors to stay up to date in different oncology protocols, right? So, like if you have oncology, then it's you do certain tests, you identify certain markers, you go after them. Like there's a whole strategy and plan. And with autism, there wasn't. So then I started just going into PubMed because that's as a scientist, that's it's like, all right, let me know. There you go.
SPEAKER_02:Yeah.
SPEAKER_01:Yeah. Who's who's doing the research? What does the research set say? I'm not gonna wait 30 years because typically that's what it takes to go from you know, a PubMed article takes 30 years for it to trickle down to your like um general pediatrician's office or you know, specialist and things like that. No, not at all, especially when I have the knowledge, right? Like I know I have been doing this professionally in different therapeutic areas, so it was all right, let me let me just go to PubMed. And then I started building uh a healthcare team for my daughter based upon the doctors who were doing that research so that I could get in front of the people who knew what they were doing.
SPEAKER_00:So when you when you jumped into PubMed, I'm I'm uh overcoming a very aggressive cancer right now, and I've spent a lot of time in PubMed, and I'm educating my doctors about what needs to be done so that I'm getting the treatment I need. So I know exactly where you're at when it comes to that. You know, I'm the world's foremost expert on my condition because I want to live a long, long, healthy life. And going down that road, I wasn't gonna get there. And because they're like you said, they're 20 years behind time or more. And um, so tell me what did you discover? Like, you know, when you're dealing with PubMed, you're dealing with case studies, um, clinical trials, you're dealing with, you know, all ranges of science. You know, people go, oh, it's science, you know. You don't know what science is, it goes through all these different, you know, degrees of of trial and error and study and peer review, and and um, you know, there's all these many, many levels before it becomes accepted. Um, and so on PubMed, like you said, you can find a a wide range of of uh levels of science. So, what did you find?
SPEAKER_01:I would say the one of the first things that kind of really shook my perspective on on everything was um different studies throughout the year showing that autism diagnosis does not have to be permanent. Nice, yeah, and so then it is, yeah. Yeah, and so back back then it used to be called an optimal outcome. And so they would say um ballpark, it was around 10% of kids with autism lost their diagnosis and had an optimal outcome, meaning they didn't need any more speech therapy or OT or you know, help in school, and they were making friends and they're talking like they're just living their life.
SPEAKER_00:Yeah, 10%'s a good chunk, right?
SPEAKER_01:And then in 2023, so that that was the information that you know, real I latched on to and said, all right, 10. Like, you know, getting into Yale is harder than 10. So I can 10 is good, I can do that. That's I'm not afraid for that number. So then that's really what focused me and said, All right, there's I've got to put a lot of attention, I've really got to understand, because you know, that's a big change in my daughter's life. Um, so it was really getting to know the science. What are they doing? What are what are the the health issues that are you know causing different sensory issues? What are health issues that are causing um you know digestive issues, right? So just really understanding the issues my daughter was having. But then once you go down that scientific rabbit hole, you know you have to understand every perspective.
SPEAKER_00:There's a it's a lifetime's worth of learning in there. I mean, there's so many different nuances in the limited experience I have. I'm like, wow, this is just like endless. Manifestations of this of this condition can go, you know, wildly from a kid that can only eat, you know, red soft food to, you know, I mean, there's all these just like it goes in all directions, every which way, how it can manifest. And you're gonna have to have some kind of understanding, or at least of the at least of the the way that it happens, like maybe all the different manifestations you can collect into a pathway that says, well, this probably came from this, and then you can sort of understand how it got there.
SPEAKER_01:Yeah, so it's like weaving a tapestry of all this information. So just because you know, I'm learning something about sensory issues that many times are it's connected to digestive issues, right? Right, which then is connected to neurotransmitters, which loop in the brain, right? So it's like nothing was really isolated, and that was the thing where I really had to study and make sure I didn't say, Oh, well, she's not having this problem. I don't need to know about this.
SPEAKER_00:It was no, I need to know about right, yeah, yeah, yeah. Especially as we're learning more about the gut, and it's you know, widespread uh connection to everything physiological, you know.
SPEAKER_01:Yeah, and and even something so simple as like gluten, right? So, like really understanding the mechanism of action, not listening to like you know, what what I don't know, some article on like Yahoo or something like that, but like getting into the science, like let me really understand this, and understanding how gluten the mechanism of action, how it impacts everyone. And so, yeah, it does make the gut more permeable for everybody, right? And so the the gut becomes more permeable, things get let out into the body that normally wouldn't. The immune system comes and cleans it up, and typically in like 20 minutes or so, a healthy person can you know eat the gluten, uh, you know, have that immune kind of cleanup and nothing is impacted. But when someone has pressure on their immune system and it's being overworked for some other reason, then that's where something like gluten can really become problematic. And not just in the gut, but the central nervous system is highly protected, but gluten also makes that more permeable. So I looked into pharmaceutical companies who were studying drugs to pass the blood-brain barrier by tagging a molecule that looked like gluten. So pharma was trying to manipulate this and say, okay, we know how to make things more permeable.
SPEAKER_00:And that was like, oh, okay, I'm really understanding why something like gluten could have an impact on someone who has so much other like health issues going on, so it's just and then there's all these other lectins that are similar to gluten that can have a similar problem. And so there's yeah, I mean, you know, it keeps going on and on. So so let's jump into your your autism program. It sounds like um, you know, you've gotten you're getting an understanding of of what they're learning and these mechanisms that are you know having impact on the situation. And and so now you're like, okay, well, I gotta come up with a program. You're meeting the scientists that are involved, you're creating sort of a network, a team. Let's let's how how's it going from there?
SPEAKER_01:So it it snowballed into okay, I came up to speed on a literature, I identified really great cutting-edge doctors to work with. We had really good appointments, and we would kind of be able to have discussions, and then these doctors were the ones who said you really need to start educating others, right? And that was not my plan. And I was like, Oh, um, no.
SPEAKER_00:Doctor recognizes the value of you know, uh a program like that, that's powerful because usually they're busy going, shh, I don't know, I don't know, I got too many things I'm trying to do.
SPEAKER_01:Yeah, well, but but but again, my my academic and my business training all taught me how to interact with these really busy physicians, how to get them to give my daughter the best care. Uh, and so then they encouraged me to start teaching others. So I started with a blog, and then uh I have a YouTube channel, and that's actually 10 years old now. Um, and so what I would do was I would take these concepts um relating to autism and the science, and then I would just turn it into a simple video that would teach parents. And so it really started as let me just make this information as accessible as possible. And then parents wanted to start to work with me directly. Um, and so now what we have is called the navigating autism platform, and we have seven categories where parents can progress through and make sure they don't miss anything. So there's lots to do with healthcare, there's lots to do with diet and supplements, probiotics. There's also the parents' mindset because this is a long journey.
SPEAKER_02:Oh, yeah.
SPEAKER_01:Many parents are diagnosed with PTSD when their kids are in their teenage years just because of all the stress. So it's really important for us to work with parents and teach them that this is a stressful situation and how do you take care of yourself as well. Um then education. There's a lot of research going on in education and what's the best way to educate someone who has autism. So we work with parents on that, and then also celebrating. Um, so we have health coaches that work on the platform. We put parents into small group pods so they have that sense of community. They meet with their health coach, they have um chats throughout the month, and um, the parents can also order functional medicine testing through the platform, get the information, and then we teach them where to find good doctors. They choose who they want to work with, and then we also help them create agendas and how do you keep everything tracking and moving along? So that's what we cover in the platform.
SPEAKER_00:So it sounds like um, you know, anytime somebody talks about a program like this, community to me is really important. Um, I know that for a parent, you know, we've worked with a number of parents that are dealing with this, and you know, there's this sort of nobody understands, you know, I'm I you can't you can't possibly, it's like any major situation, whether it's cancer or autism or any major disease or injury, it's like so overwhelming. Like, how could anybody possibly understand what I'm going through? But the truth is many, many, many people share that same experience. And when you can bring those people together, it's really powerful. And uh, I always think that that's one of the actually that's the reason I do this podcast is to create this, you know, sort of all-encompassing, healthy, living-minded community where people can find a connection to whatever is their, you know, their issue or whatever it is they're trying to work at. And it works, you know, you build bring people together. Um, so you is this regional or is it virtual or both, or you don't know?
SPEAKER_01:It's virtual, so it's virtual, and we work all over the world.
SPEAKER_00:Nice. So you you you get somebody who's got a situation over in Georgia, and they might be talking to somebody in England or some anywhere in the world, and and still sharing a similar experience.
SPEAKER_01:Correct.
SPEAKER_00:Yeah, I love that. Definitely. And so, how many people um have been have are participating at any given time in this program?
SPEAKER_01:We can expand to to accommodate. So we don't have uh limits at all. Um, the learning is on the platform, so there's an element of self-learning, and then um interacting with the health coaches and me. I certainly love uh working with the parents on science. Um, so there's no capacity limit.
SPEAKER_00:So, how how is the science developing? Like, you know, I know that they're recognizing all different elements and you know, they're identifying maybe mechanisms. You know, the brain is such an amazing organ and and kind of almost uh insulting to just to call it an organ because it's so much more than that. And uh, you know, with neuroplasticity and all the different, you know, capabilities that the brain has to rewire itself and to heal itself and to correct problems, um, you know, what is the new developments with on that level?
SPEAKER_01:Well, specifically to the brain and kind of something that's been a hot topic now, uh, would be something called Leucovorin, which is the prescription um B9 and folinic acid. And the the reason why it's it's really uh profound that this has become such a hot topic is the sense that the reason why Lucovorin in certain kids with autism is so impactful and can increase speech so much is because there's antibodies in the brain that's blocking this vitamin from being utilized. And so that really we it goes back to the beginning of our conversation where autism, there's there's no lab test or anything to do, right? I think we're getting closer and closer to having some hopefully typical tests to do when you get that initial question of, oh, is there something going on with my child? So that's like where the field is going towards. Um, we're definitely not there yet, but it's good to see that doctors are starting to really understand and communicate the different issues that are going on in the body health-wise, that can really make a difference in the child's life and the parents' lives.
SPEAKER_00:I love that. So, how how is your daughter?
SPEAKER_01:She's great, she's in high school.
SPEAKER_00:Um, and she's yes, she's she's how how has this all of this work you've done, you know, how do you see uh I know it's not really a quantifiable uh question, but you know, how do you how much of an impact do you think you've had? Like had you not done all this work and discovered all these things, where do you think she'd have been compared to where she is now?
SPEAKER_01:She'd be in a very, very different place. Um, so if I didn't address a lot of her health concerns, um just her quality of life and and her life expectancy would be very, very low. So I it's compl it's a completely different life. I have no regrets whatsoever of all the time I spent in PubMed and and just the different life that I have now as a result.
SPEAKER_00:I was gonna say, I'm sure you've benefited dramatically from it as well. Definitely a lot of my guests I like to ask, you know, about a particular um story that was impactful. Obviously, your daughter and yours is the most impactful story to you, but aside from that one, can you share a story with us of somebody who your program has affected in a really dramatic way?
SPEAKER_01:Sure. There's many stories. Um, one that comes to mind is uh of a dad and his son. Um he you know wasn't speaking, it was really difficult, um, not sleeping at night. Um the child was very difficult, so no one really wanted to watch him. So the parents, both parents kind of had to come home from work at all different times. Um, and as they started resolving health issues, um it's a completely different child. He can get his hair cut, right? No problem. He's now in um Taekwondo. And so his dad, you know, sends me emails and saying, like, oh, look at what we're doing now. What do we do? Like, you know, and so they're just able to have those family moments that we all as parents kind of took for granted, thinking that was just guaranteed, and it it's not. So um, those tender moments are really important for you know, father, son, and for family.
SPEAKER_00:I love that. Well, Teresa, um, this is sort of that time I'd like to give you a chance to wrap everything up into sort of a parting thought and uh share with our listeners.
SPEAKER_01:Sure. So if if parents or grandparents, we also work with grandparents, if uh anyone is really wanting to understand how they can help their child obtain optimal health and really understand all the different cutting-edge research that's going on in autism, our platform is made perfectly for that. Um, you'll get community support, you get expert people to interact with, and um, you can also order the tests so that you can get an understanding of yourself as to what are the real health concerns. Um, and the platform for anyone in the US, we also accept flexible spending. So we make it as affordable and as uh easy as possible for parents to join and really get the support and information that they need.
SPEAKER_00:Wow, that's powerful. And uh maybe as important, how does somebody access this platform?
SPEAKER_01:Sure. So you can find me at uh navigatingautism.com. Um, you can also find me and autism. We didn't even get to talk about that. Why I spell it differently.
SPEAKER_00:All right, well, let's get yourself a chance to talk about that. You know, you you A-W-E-T-I-S-M.
SPEAKER_01:Yep, it's it's spelled differently. So I hated the word autism. I will hated seeing my daughter be in such agony and not be able to do anything in life, and it life was extremely difficult. So that word autism, I didn't even like saying it. I would say, oh, she's on the spectrum. Like I would just avoid it. And then as I started to learn the science, and as I got to see like how determined she was when she had, you know, like headaches and stomach aches, and she was still getting up and going to school, getting up, going on a little adventures with me. Like she wanted to be part of life so much that that's when I started to see the awe in that, where it's like, wow, she's just so determined. So I've got to do whatever I can so that she can do what she wants to do in life because she's working so hard at it. So that's when autism became the autism. And I looked at her so differently, and just yeah, so that's what I hope to also help parents see is just that powerful, powerful.
SPEAKER_00:Well, why don't you share that uh that website again so that way um it doesn't get lost in the in this great little story?
SPEAKER_01:Sure. So it's navigatingautism.com, so navigating N-A-V-I-G-A-T-I-N-G A-W-E-T-S M.com. And um, I also have a YouTube channel, so uh same thing, navigating autism. Uh, if you just put my name in autism, lots of things will pop up on YouTube and Instagram. Um, we also have another website that has more of a blog, and that's aw e t I S M.net.
SPEAKER_00:Beautiful. All right. Well, Dr. Lyons, it's a pleasure. And I I really have enjoyed this conversation. And my invitation to return and go deep into any of these topics is open. And I just want to thank you for being here.
SPEAKER_01:Sure. Thank you for having me.
SPEAKER_00:Awesome. This has been another edition of the Healthy Living Podcast. I'm your host, Joe Grumba, and I want to thank all of our listeners for making this possible. And we will see you next time.
