Part 2 of Autism Parenting Strategies That Actually Work: What I Learned from Dr. Theresa Lyons

Autism support should focus not just on behavior, but on the child’s overall health, as underlying issues like gut imbalances, poor nutrition, and unmet medical needs can significantly impact learning, behavior, and communication. While traditional education approaches like ABA can help, children often learn best when their intrinsic interests and curiosity are engaged. A personalized, science-based approach, using proper testing rather than guesswork, is essential since every child is biologically unique. Progress may look different, but celebrating small wins and maintaining a strong, positive mindset is critical for families. Communication, in any form, can unlock a child’s hidden intelligence and dramatically improve care and connection. Although AI can provide information, real progress comes from guided action and human support. Ultimately, parents play the central role in assembling the right care team and advocating for their child’s health, with the goal not of a “cure,” but of achieving the best possible outcome and quality of life.

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Transcript

Mike Carr (00:05):

Well, welcome back. Last week we talked about how to help parents and grandparents determine if their autistic child is healthy. It could be related to diet. It could be related to have they had the proper health team in place to sort of diagnose what's going on with them. It could be related to exercise. It can be related to sleep. It can be related to supplements. Dr. Theresa Lyons is an expert in this space. She's a Yale trained scientist. She has a PhD and more importantly, or perhaps as importantly, she has a daughter with autism. So we're going to continue the conversation today and let her talk about what she's seen work for so many of the parents that she works with both domestically and around the world.

Dr. Theresa Lyons (00:44):

So educational approaches is really important. So a lot of times education is done first and it's like, okay, get the child into school, start these therapies, let's get ABA going. And sometimes it doesn't go well. And so this is always a decision for the parent to make. Sometimes it makes more sense to focus on health and resolve some of those issues. Because what I've found is that most people, children and people with autism are intellectually curious. They are smart. They are interested in different things and not just in a rigid kind of repetitive way. There's a lot of interest in life. But what happens is a lot of times their body holds them back from really engaging fully. So that's why a lot of times parents see their child like, oh wow, they're just learning so easily now after you've resolved some health issues. So educational approaches and there are many different ways to educate.

(01:41):

So ABA is your classic way and the motivation typically is extrinsic. So okay, do these 10 tasks and then I'll give you a break or do those 10 tasks and I'll give you the iPad for five minutes. So that's effective to a point. But then let's say somebody played their iPad all over the weekend and it's Monday and they're like, "I don't really care about iPad. It's just not motivating to me. " And taking a break, I actually want to learn so I don't really want to take a break. I just don't want to do these 10 things over again that I've done a hundred times already. So that's where sometimes there becomes issue with education. So it's how do we want to educate this person? How does this person learn the best and what is needed? So rope memorization is important for multiplication tables, for tying your shoe.

(02:29):

There's certain aspects of life that is repetitive like that, but then there are different educational approaches that are more intrinsic. So what does the child really like? How can we tap into their natural curiosity and really help them explore things that might hesitate a little bit? So creating that safe container, tap into their intrinsic motivation and then learning becomes very different. So there are several different ways to approach that. So education gets its own category.

Mike Carr (02:56):

So what's number six?

Dr. Theresa Lyons (02:58):

Probiotics. So gut health is really important. Again, it varies on the level of importance for each person, but it is pretty much universally important gut health. So that's category number six.

Mike Carr (03:13):

And when you think about probiotics, there's everything from kimchi out there that not everyone's going to like the taste of, right? Yep. Or Keffer, which is a drink that if it's flavored, maybe it tastes a little bit better versus supplements that you can actually take that are specifically targeted. Is there a particular type or form of probiotic that you feel is the most effective or the most universally received with the least resistance? Or again, does it just depend upon your child? It

Dr. Theresa Lyons (03:44):

Really depends upon the child. And in this case, you really want to understand what kind of gut infections that child has. Let's say a child has a Candida infection, which is common in kids with autism. And let's say it's a pretty intense infection. So there are different tests that you can do to measure and actually quantify the level of infection. And let's say this is an infection that really requires prescription antifungals. But let's say a parent is just trying things out to see, well, let me just try this. I've heard about Espilardi. Espilardi is an antifungal. Yeah, it's not prescription antifungal in the US, but it's an antifungal. So if a parent gives Espilardi to a child that has a high candida infection, typically that does not go well. So usually what you see is a lot of gas. You can sometimes see increase in self-injurious behavior if the person isn't able to communicate.

(04:37):

This is when you might see posturing. So you might see a child putting their gut on, let's say, the arm of a couch and kind of hanging off the couch or doing it on the stairs. A lot of parents see their kids pressing their bellies against the stairs. It's to relieve the pressure and the pain. So it really is important to use testing so that you don't make mistakes like this. And then a lot of times when parents do that, then they get, "Oh, they're so hesitant now I made things worse." And there's nothing worse than a parent who just made their child feel worse. Nobody wants to do that whatsoever. So then they get scared to do anything else. So it's really important to use science and logic and testing so that you understand what the issue is and then you use the right things to address whatever that health issue is.

(05:25):

Seventh is celebrating success. So parents of kids with autism, we're celebrating things that many other parents don't even think twice about or sometimes we might celebrate something and we share it with a friend and they're like, "Oh yeah, Johnny did that five years ago." And it kind of hurts. So it's important to have people around you who will celebrate all the work it took, even if it seems like it's something basic but it's not for autism. So it's easy to see what other people have and what other kids are doing and what you don't have. But then again, that gets you into the mindset of all those negative emotions and that's not what you want. So celebrating success and celebrating it with people who will celebrate with you is really, really important.

Mike Carr (06:13):

So if someone wanted to dive deeper into some of these categories or all of these categories, you mentioned a book that you wrote back in 2020, but we're now at 2026 I suspect there's a lot of content in that book that's still very relevant. Would you recommend that as a starting point or do you think there's a better place to start just to sort of get up to speed on, okay, I am interested in diet, I am interested in putting the right health team together. Who should those kinds of individuals be? All the other kinds of things you've talked about, where should we begin from a resource standpoint?

Dr. Theresa Lyons (06:49):

We've built a platform called the Navigating Autism Platform that guides parents through all of this. So we have board certified health coaches that really help with the mindset and celebrating success and they put parents into small groups and coach the small groups throughout the different twists and turns that come up. And we have the science broken down. So parents get access to all seven categories and then we have it broken down into levels so that parents can really focus on what's important and not be blasted with a ton of information and have to figure out what should I do first? What's the best way to go? And there's so much going on in life that we don't need more information. We really need that guidance and that strategy as to how do we navigate through this all successfully. And parents can order functional medicine testing on the platform.

(07:36):

That's additional cost. Some parents like to order tests more frequently than others, so that's up to the parents themselves and really make sure parents are guided and understand the science, understand the test results so that they have more confidence in making decisions.

Mike Carr (07:52):

So is the platform accessible through the web or is it an app on your phone? How wanted to get onto the platform? How do I do it?

Dr. Theresa Lyons (07:59):

Yep. You can go to navigatingautism.com. I spell autism differently. I spell it A- W-E-T-I-S-M and just sign up there. It's $98 a month. We try to make it as accessible for everyone as possible and it's also flexible spending approved. So that helps families who have that money and resources to spend through flexible spending and you sign up for it and then one of the first steps is go through and you take the ATEC so we can really understand where the focus should be for the child and we also want to measure success. So we have parents who go through usually six months at a time and we've started to measure the changes that they see in their child using the ATEC and get started with speaking to one of our health coaches and getting to know you and putting you in the right group. And then you get the information that is the science and really, okay, now what do I do?

(08:53):

Parents want to say, "Okay, what do I do? " And you can start wherever you want. Some parents are like, "I do not want to start with diet." Not everybody wants to do diet. When my daughter was young, I thought, "I cannot handle another thing. You cannot change the food that I need to eat. I don't want to cook a different way." I just couldn't handle it at that time, but of course it's important. So once I got myself grounded a little bit and got some momentum in others, then it's like, "Yeah, of course diet makes sense." Okay. So it's important for parents to understand there's not just one way of doing this, you have to start where you feel you're going to be successful. So for some parents that might be starting with a doctor. Some parents, it might be really celebrating success or their mindset to really get into that neutral place so that they can make decisions.

Mike Carr (09:37):

So with AI coming on stream and the developments there, are you guys thinking about or have you seen anyone that's sort of taking the best practices, the knowledge, maybe not across all seven of these categories, but hopefully a lot of them and they're almost building an assistant, a chatbot, someone that at two in the morning when your son or daughter's up because they won't sleep again and you just want to have a conversation, okay, here's the situation, the bot learns or the AI learns all your history. Is that something that you think is fraught with problems and you would never recommend that because you lack the nuances and the subtleties that are so important for medical professionals and coaches to understand real humans or is that something that you're pretty excited about and you think that's going to be part of the platform and part of perhaps what you guys might be doing in the future?

Dr. Theresa Lyons (10:26):

So I don't see it useful in the sense of anything besides maybe answering a question AI really hasn't proven the ability to help a human take action. You certainly can find out information in the middle of the night. I mean, I think we've all been there, two o'clock in the morning researching, researching, researching, but how much action do we take on the research that we do at two o'clock in the morning? It's usually not earth shattering and a lot of times the next day when we get a good night's sleep, we look at it and we think, "What was I even thinking?" Because it was two o'clock in the morning, hard to figure things out. So having information is important, but it's really utilizing it and having an impact in your child's life that is important. And with AI, it's not really there yet. I think it could be, but not in the next year or so.

Mike Carr (11:20):

Okay. So let's talk about gut health connection with the neurology and the function of the brain because it's not obvious if you've never thought about this before. Well, why do I care about ... Autism is the brain's got some problems during development and some folks have said, "Well, after your child's two or three years old, the brain's largely developed." If you don't have the synaptic connections, the neuron connections, the physical formation of the brain the right way, it's not going to be curable. So why would what I eat or what's going on in the gut or the microbiome have any impact on how my synapse is fire and how my brain works? Can you just give folks that have never thought about that before sort of a very quick, "Here's why this is so important."

Dr. Theresa Lyons (12:03):

So there's a lot of times dysbiosis, which just means bacteria are out of balance. So you have certain beneficial bacteria and there's certain pathogenic bacteria and fungus and a lot of different things in the gut. And when they get out of balance, how it can impact your brain is that these bacteria, they produce different molecules that the body utilizes. So non-controversial topic would be vitamin K. Vitamin K is produced in our gut when we have a certain balance of bacteria. That's beneficial, right? We need vitamin K. When bacteria are out of balance, then production of molecules that our body needs, it's not there. So there's different things like short chain fatty acids, which really are important for the gut and also for the brain. When that is produced at a much lower level, then you start to see different behaviors and that's one way that the gut can impact the brain.

Mike Carr (13:03):

There's been a lot of progress made in genetics and there was some research recently done or recent release that they've identified a particular gene that in some cases if that switch is on or off, it is highly correlated with autism and certain behaviors and the researchers are even now starting to work on therapies. And so the reason this is so interesting I think is there a cure for autism? And the answer to that question is not necessarily because your brain has already developed a certain way, but there might be some therapies or there might be an understanding if you do a genetic test and you understand certain flags that indicate, okay, this kind of therapy, this kind of medication, this kind of combination of functional versus traditional has made a real impact. What hope or what rounding do you want to give anyone that's listening or watching to this that don't think so much about a quote cure as much as about better understanding of your child, whether it's genetic or something else, is going to help you identify a lifestyle, a diet, an exercise regime, et cetera, that's probably going to improve their behavior, their ability to be independent and as a result, your family's life.

(14:19):

I mean, how would you characterize or comment on that?

Dr. Theresa Lyons (14:23):

So I don't use the word cure as well. So it's not a word that's used often relating to autism. So in the scientific literature, they call it an optimal outcome. And the latest research just from a few years ago at Boston Children's Hospital showed that the percentage of kids that they were studying, the study was about 215 kids who were diagnosed with autism. 37% of them a few years later didn't have that diagnosis. So they now are calling autism, they're saying that there's really two aspects to autism. There's non-persistent autism and persistent autism. So the science shows that no longer having an autism diagnosis is actual, right? It's not lifelong for everybody. And I think what the question is getting at is how do we think about that? So I don't say curing autism because the autism diagnosis based just on behaviors, which gives us no information on the molecular level as to what's going on.

(15:25):

So how am I going to cure something which hasn't even been established? I don't resonate with that word whatsoever. Optimal outcome, certainly that is a good phrase, but I think the way parents want to really engage with this possibility is, let me be sure that my child is healthy. And so you have to get very detailed because most of us take health for granted. We don't have motor planning challenges, don't have sensory issues, but whenever there is that aspect, then that's when the parents should start to say, okay, relating to health, what should I look at for sensory issues relating to health? What should I look at for speech issues? So it's really just understanding health and understanding that many people with autism are not getting the health care that they deserve. So it feels different to have to fight and argue for some things that seem basic, but I think that's really the important way for parents to think about autism in the sense of, okay, let me really get granular about my child's health.

(16:33):

Even though the diagnosis doesn't point me in the right direction at all whatsoever, I just have to accept that

(16:40):

It's my responsibility. I'm the parent and I have to figure out health-wise who needs to be on this team so that we can figure it out.

Mike Carr (16:47):

And you just said something that's super important. Unfortunately, parents, the school system is not going to solve this problem for you, at least that's been our experience. They may have your kiddo until they're 22, five days a week and they're trying to encourage a learning environment based upon uniquenesses and characteristics that hopefully they can learn and it's not as structured as a traditional environment, but it's your responsibility and unfortunately only you're the only ones that are going to do it to really suss out, is my child "healthy." And going back to your book, because I'm interested in suggesting that as a starting point as well for parents that just want to get a little bit more grounded in some of the science and some of the things, Dr. Lyons, that you've been talking about, would you recommend that that's still a very relevant read and something that you would feel comfortable suggesting that anyone that has an autistic child, especially someone that's maybe level three autism should take a look at?

Dr. Theresa Lyons (17:46):

It definitely is relevant. I will be updating it within the next few months or so. The expression of what functional medicine is definitely very relevant and many parents don't know about this field of medicine. And if you're just going to a doctor who is not being educated on the cutting edge research of autism, you're going to come against something along the lines of that's just autism. Your son's fine. There's nothing wrong with them. And you're just like, no, there's nothing wrong with my son, but health-wise there is something that is not correct. So any parent who gets that experience, then the book definitely would be eye-opening and helping you start to go down that path.

Mike Carr (18:33):

And what's the title of that book again?

Dr. Theresa Lyons (18:35):

It's called The Lions Report.

Mike Carr (18:37):

The Lions Report. And that's from 2020. And is that available on Amazon or?

Dr. Theresa Lyons (18:41):

Yeah, on Amazon.

Mike Carr (18:43):

Okay. Are there any other resources besides that book and your platform, perhaps another book or something else that you would say, "Hey, this is one of the foundational Tombs books, publications in this space. If a parent just wants to keep up on what is going on but doesn't necessarily want to get into all the scientific jargon, won't necessarily even understand it, anything else that you would recommend or suggest?

Dr. Theresa Lyons (19:06):

So one thing that is becoming talked about more and more, especially for level three is what spelling to communicate is something that still is controversial in some people's eyes and not in others. There is scientific literature doing eye tracking studies and really looking at, okay, does this person with autism with typically level three, so their body and they might appear that there's no way there's intelligence in that body. And many times there are health issues going on with someone with autism in level three and they cannot express it. So some kids learn pecs, but there's only a limited number of different litle pictures. And you could say that you hurt and if you have sensory issues, maybe you say your head hurts when it's actually your foot. So sometimes there's difficulties in expressing different things like that. So really getting our kids to communicate, however, resonates with them is really important to do so that you can ask them, how are you feeling?

(20:11):

It can change so much and it can also really help doctors see that child as a person, as a human when there's some form of communication, whether it's spelling on the boards or typing on the keyboard or typing on the phone or having lamp prolo quo to go and accessing buttons. But I found for the most part that when doctors really see the child communicating and saying different things in the sense of, this is my complaint, I can't sleep, or things along those lines, it really makes a difference with the doctors. So communication would be that aspect to focus on.

Mike Carr (20:46):

We absolutely agree with that. We've talked about how important it is to communicate in whatever form. The spelling to communicate can just be as simple as having the alphabet in front of someone on paper and letting them point at letters to a computer program that's got a touchscreen and they can spell words or a keyboard, but it's this idea of offering your son or daughter an opportunity, even though you may not think they know how to spell, give them some letters and just see what they can do with those letters and you might be pleasantly surprised.

Dr. Theresa Lyons (21:12):

That is definitely one of the experiences that is universal that I have had across the world, across different levels of autism. Most parents underestimate how much their child has been learning all along because their body has failed them in so many different ways to express their comprehension. And so parents say," Well, they don't understand what we're saying because ... "And they'll give reasons. And that is not true. Once you resolve different health issues and children have control of their bodies, whether they're speaking verbally or they're coming up with actually engaging in communication systems, oh my goodness, that is ... I love that part when a parent's like, " I didn't know they were paying attention when we went to vacation and Uncle Bill said this and that. "So it's really important for parents to understand that their child is intelligent, is paying attention, is learning.

(22:05):

And so getting some form of communication, sometimes it even starts with yes, no apps. You've got to start somewhere. So communication is really important and possible. It just might look different for different people.

Mike Carr (22:18):

That is a fantastic place to close. So is there any advice that we haven't already talked about or any suggestions that you'd like to leave anyone watching this or listening to this with that if you do nothing else, be sure and try this. Or if you want to know the next place to start besides going to my platform, I would suggest that. I mean, any final closing remarks of wisdom or words of optimism.

Dr. Theresa Lyons (22:44):

I would say that this is a tough journey and to really have grace with yourself and to make sure that you take that time out to be more centered and to be more regulated because our children feel that and the more that we can have that neutral space and have that connection and bonding, that's really what parenting is all about. So many times we miss that just because we're so overwhelmed and exhausted. So definitely taking the time to replenish yourself goes so far and you'll see the joys in this whole journey, which most parents miss.

Mike Carr (23:22):

Well, I think that's great. And I think we always try to leave or end a podcast with some comment on hope. And I think what Dr. Lyons given everyone today is your child may not communicate yet. Your child may not learn the right way or the way you had hoped for yet, but with the right nutrition, with the right diet, with the right supplements, with the right level of exercise, with understanding, is your child healthy? And if not, how can we make them healthy? You might be amazed at how they can do things that you've never even dreamed of before.

Dr. Theresa Lyons (23:59):

And you'll learn the dreams that they have for themselves, which is

Mike Carr (24:02):

Really- Awesome. Well, Dr. Lyons, thank you so much for being on this episode of Autism Labs.