Part 1 of Autism Parenting Strategies: What Science Really Shows

In this episode of Autism Labs, Mike Carr and Dr. Theresa Lyons discuss how many families lack access to clear, science-based guidance despite growing research in autism, leaving parents overwhelmed and searching for answers. Dr. Lyons highlights that meaningful improvement is possible for some children, but requires a more informed, proactive approach built around seven key areas: personalized diet, a multi-disciplinary healthcare team that combines conventional and functional medicine, strong parent mindset and regulation, foundational health through supplements like vitamin D and proper hydration, tailored education strategies, attention to gut health, and consistently celebrating progress. She emphasizes the importance of asking “why” behind symptoms rather than accepting them as inevitable, and notes that simple interventions, such as improving vitamin D levels or increasing physical activity, can significantly impact sleep, behavior, and overall well-being. The core message is that autism care should be individualized, root-cause focused, and guided by accessible, trustworthy information that empowers parents to make better decisions for their child’s future.

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Transcript

Mike Carr (00:04):

Well, welcome everyone back to another episode of Autism Labs. And this week we have a really special guest and someone that's bringing a unique perspective to the table. Dr. Theresa Lyons is the CEO and the founder of Navigating Awetism. She is a Yale trained scientist and she's a mother of a non-speaking autistic daughter. And the reason that's so interesting is you have someone that has real lived experience, someone that has a scientific background. And then her mission, I think one of the things that she states on our YouTube channel that's so exciting, I think everyone that's probably going to be listening or watching today is helping families, especially parents and grandparents, and I'm a grandparent, cut through the noise to access trustworthy science-based guidance they can actually use. So that's what we're going to talk about today. One of the things you talked about was empowering parents and grandparents with science-backed personalized tools.

(01:04):

Can you talk a little bit about that? Some of the best tools that are out there or stories that you've seen about how folks either implement something incorrectly or do something that's almost magical in terms of what the resulting outcome might be?

Dr. Theresa Lyons (01:17):

Certainly. So let's start with what is possible. So for many times when our kids have been diagnosed with autism, whether it's just yesterday or even decades ago, unfortunately, many parents are being given the same information that autism typically gets worse. It doesn't get better. There's nothing medicine-wise you can do except for medications when they get older and really irritable. And there is a behavioral approach to teach someone with autism, but you got to break everything down into little steps. The wait lists are long and it takes 40 hours of real intense kind of repetition to teach someone with autism. So science has disproved all of that, but the problem is getting that quality information to the parents has really been a challenge. And the reason is because of the way the pharmaceutical industry is set up. So I worked in the pharmaceutical industry as a medical strategist and typically a drug company has a drug and you do lots of clinical trials and you get some kind of impact and then you take that information and you hire people to go in and educate the doctors.

(02:25):

And then the doctors are brought up to date about this new medicine and they start prescribing it and they start talking to their patients about this is the way the drug works and this is what we're targeting. And so you get very granular. Now, unfortunately for autism, there has really been nothing along those lines where it really targets the root cause. So there haven't been really large clinical trials. There's absolutely no pharmaceutical company out there sending in reps to go talk to doctors and educate them. There's no CME. So doctors have to take continuing medical education credits and that's where pharmaceutical companies spend a lot of money to educate the doctors basically on their product. So there's no pharmaceutical company doing that for autism. So what happens is there's a lot of great research that is still being done in autism, but since there hasn't been a large commercialization of it yet, it doesn't get spread and penetrated and discussed at the medical level and then the parents don't get it.

(03:27):

So us as parents, we get the diagnosis and then we start scrambling for information and talking to people and wasting so much time, frankly, just trying to get information. And it's frustrating. It's frustrating that I went through that 13 years ago. It's frustrating that parents to this day are still going through the same thing. And so the piece of information that really made me step away from my career and focus on my daughter and kind of go all in was a research publication back then that said 10% of kids with autism achieve an optimal outcome. And the way scientists defined that was that the child would not be able to be diagnosed with autism any longer. So autism diagnosis is based on observation. So basically what an optimal outcome meant was that there were no issues with communication, there was no issues with repetitiveness. Any of that criteria, which the child was originally diagnosed for autism by, that was no longer there.

(04:27):

So that got me really interested because I was not being told that by any doctor. And this was a research publication I was able to access quite easily. Yes, I know how to navigate pubmed and scientific publications, but it wasn't necessarily hard to find for a scientist. And then it was like, all right, this is information that I need to know because I will make very different decisions for my daughter when I know that. And then it's also about other parents need to know what is possible for some kids, not for all kids with autism, but you've got to at least know what the possibilities are so you can make decisions based upon quality information.

Mike Carr (05:07):

So the thing I think that is most interesting in what you've said is the inaccessibility for many parents of this information so that they understand that their child's future in many cases can be better than they ever imagined. So can you give us some specific references or some specific recommendations that, "Hey, here's the things that I've learned. If you haven't done these five things or these three things yet, be sure and do one, two, and three. What comes to mind?"

Dr. Theresa Lyons (05:36):

So over the years I've worked with parents and I've worked with parents in over 22 different countries. And after working with parents, I'm able to put into categories what parents really need to focus on through lived experience as well, but this is not an end of one experiment here. It's working with lots of parents. So I can go through there's seven categories that are really important and there are different steps in those categories, which is why parents with kids with autism get overwhelmed because there is so much to keep track of and to take into account and factor. So the first one is diet. So diet does matter. It matters to different degrees to different kids with autism. So this is when you'll hear some parents say, "Oh, going dairy free changed everything." And then another parent will do it and be like, "I didn't really see anything.

(06:26):

Maybe a little bit, but nothing." And you have to start to get into the chemistry of that person. So diet makes a difference and it's not one diet that universally makes a change. So the other aspect to really understand is healthcare team. So you have to have a variety of doctors. I wish it was just one, but unfortunately it is not. You need a variety of doctors to understand what are the medical challenges that this child has. So is there a gut involvement? For some kids with autism, gut problems are number one and other kids with autism, it is not. So it's really important to understand and you can use different functional medicine testing. So functional medicine is a way to practice medicine that looks at root cause. So they ask the question, why? Why does that child have guess? Why can't that child sleep?

(07:13):

And you really get at the why and you build a team, you do different testing, you find out the results and it's best to build the team based upon the functional medicine results as to what the challenges are for the child. And that is something that parents really need to think about healthcare as a team. It's not just one local pediatrician. That person's not really going to have the expertise and you always want to be working with a doctor or with someone who's saying, "Why? Why aren't they sleeping? Why are they having a problem potty training? Why can't they focus?" All of those things. So that's the second category.

Mike Carr (07:46):

Our experience has been, and our son was diagnosed before anyone really seen autism back in 1990. And so we went to quote the best metabolic specialist in Dallas-Fort Worth. And he after a two, three hour examination said our son didn't have autism. And then we went to the autistic treatment center a few months later and they had a checklist of like 12, 15 behaviors and every checkbox was checked. And we know the quality and the availability of that team locally. Have you found in your experience that almost regardless of where you are, if you get someone that is an expert on gut health and metabolism, if you get someone else that's an expert, they are available? Or would you say that no, there are very few folks and that you would recommend parents go to this medical center or this tertiary care. What's your experience been on the quality of and the availability of physicians and medical professionals based upon locale?

Dr. Theresa Lyons (08:40):

In 2020, I wrote a book about functional medicine and autism and in there I included a directory of doctors that I had all spoken to because I've worked with so many parents. I knew the good functional medicine doctors around the country. So in different states there are great doctors. Some parents do have to drive a couple of hours, but now with telehealth, you usually only do that once a year if you want. The important thing when finding doctors is having that team aspect and also having conventional medicine doctors and functional medicine doctors. Let's say a child has seizures, right? You would use conventional medicine and functional medicine. And I could just give an example of what you would do. So obviously you want to stop the seizures, right? So you want to use conventional medicine and your insurance to do maybe an MRI, an EEG, get on the right seizure stopping medications.

(09:31):

So that's in the moment and you're doing those tests to really understand structure and function. A lot of times conventional medicine doctors don't look any further than that information. So then when you get the seizures under under control, that's when you might pivot more to functional medicine and work with someone who says, "Okay, why is this child having seizures? Let me look at the MRI again. Let me look to see if there's anything that was missed. Let's look at cerebral folate deficiency." That's a hot topic in autism. When you have certain deficiencies in your body that can lead to seizures, right? Same thing with different infections. So there are different infections, let's say Lyme disease, which can also contribute to seizures. So this is when you start asking the why part. So in that instance, you would have at least two doctors working on seizures, whether they're working together or not, but that's really how you have to build the team and look at any health issue that your child has.

Mike Carr (10:28):

Great. Okay, that helps. Okay. You've mentioned diet and you mentioned the healthcare team, but we know there are five more, so keep going.

Dr. Theresa Lyons (10:35):

Yeah. The next one is mindset and that's mindset for the parent. This is super important and in many times it's one of the most vital things to do because your child's regulation is impacted by your regulation. It's impacted by your thoughts. It's impacted by the decisions that you make. So if you're dysregulated and overwhelmed and irritated and exhausted, then the decisions that you make are going to reflect that. So sometimes the first thing a parent has to do is, "All right, let me just get my bearings." You get this diagnosis and there's everything just coming at you and your child might not be sleeping and they might be a picky eater and they might be having meltdowns. So you have this information overload paired with all of these responsibilities of being a parent and a caregiver, plus whatever else in life you're doing. You probably have a job, you probably have other relationships.

(11:27):

So there's a lot that really gets put on the parents. So many times the parent just has to learn how to, okay, I've got to ground myself. I've got to start figuring out what's important to us. And it takes mastery of yourself to really repeatedly put yourself in that grounded space so that you can make those decisions for your child. Number four is supplements and prescriptions. The beginnings of supplements are really things like basic health. And unfortunately, many people with autism, basic health just gets written off. Many times doctors see any problem relating to a person with autism and they just blame it on the autism, which is not correct to do whatsoever. So some of the basics of health is vitamin D status, getting them vitamin D test. Obviously not anyone's favorite to do on kids and even like level three autism people who have, they might be in fight or flight a lot more than other people.

(12:24):

So doing a blood test might be something you do only once a year or something like that, time it with another procedure. But there's a lot of really basic health that is important to focus on. Hydration is another one of them. So really looking at what are our kids drinking? Are they getting the electrolytes? So much about speech and motor control and even regulation has to do with neurology, has to do with sodium, sodium ion gates, potassium. There's so much that is basic and that's why having something focusing on some of that basic health and then getting obviously a lot more advanced depending upon what the health issues are for that child.

Mike Carr (13:04):

So let's talk about this a litle bit more because a lot of the parents that we know that have autistic kiddos, they're taking some kind of regime of quote pills. Some of them may be prescription meds for seizures

(13:18):

Or behavior or aggression or sleep. Some may be his nutritional supplements. You mentioned folate. And so one of the things that we always are looking for and that a lot of our parents are looking for are things that why not because the side effects are minimal. So like methylfolate as an option. So for our son, methylfolate sometimes will calm him down. It's not any kind of a cure. We haven't seen his seizures diminish because he takes it, but there seems to be very low risk when he's having a bad day to give him some. For other parents, melatonin or something like that seems to be fairly safe. Unfortunately, the body seems to adjust and if you give them melatonin all the time, the fact that it might help them go to sleep sort of diminishes over time. You mentioned vitamin D, you mentioned sodium. And I know a lot of this is very hard to generalize because it really depends upon your particular child and what the blood tests show, what some of the other testing shows.

(14:10):

But in general, are there any supplements that you would say across all the parents that you've worked with these generally are safe and they have the best impact on sleep on behavior. So if you don't know for sure and you're wanting to try something and ideally you would have the medical team, the healthcare team in place, but just to get started, I might suggest these two or three things. Are you comfortable making that kind of a statement or is it so individualized that it's hard to generalize almost any kind of supplement?

Dr. Theresa Lyons (14:42):

The one that comes to mind that is universal that I've seen impact sleep impact the immune system. So different reactions to foods, even irritability and things like that. Obviously once a child is sleeping, then the days typically get better magically. So vitamin D is that and there's different levels of vitamin D. And so if you get a blood test and you haven't been taking any supplement whatsoever of vitamin D, you're typically deficient. So for conventional medicine, the measurement is 30 or above and that's what they consider to be okay levels. So typically if you're not taking vitamin D, your number will be low 30, right? A simple blood test covered by insurance answers it again, not necessarily the easiest thing to do. But for functional medicine, their values for vitamin D, they want to see at 60 because that's really more for optimal health. Now, if a child has an issue with their immune system, which happens a lot so we can relate the immune system to folate in a minute or two if you want, but so if there's an issue with the immune system, then the body tends to use more vitamin D.

(15:53):

So the amount that a person needs can vary depending upon what their health issue is. If the child's main health issue is related to the gut, vitamin D can help, but you won't see a great impact that a lot of times when kids aren't sleeping, it's a vitamin D deficiency. And I've worked with parents literally who have optimized vitamin D and then their child is sleeping. So I mean, that is something that's really important because you wouldn't want your child to have a vitamin D deficiency for their entire life and to be given melatonin when what was really needed was vitamin D. So again, this is why it gets really important to think about health for your child and to not let any doctor tell you, "Oh, that's just autism. That's just the way it's going to be because that's not a good answer." And then to really get granular and use a variety of different testing to really identify what's most important.

Mike Carr (16:46):

Okay. So I have another question related to this and I may be getting ahead to one of your other categories, but I want to go back and talk about the supplements in combination with gut health and the diet and exercise. One of the things that we've discovered with our son and with a number of other folks that he spends time with is if they get out and exercise and that doesn't mean they have to sweat. And it's just like walking, playing basketball off the couch, away from the TV, away from the iPad and they have a lot of movement through the day. They seem to have a better appetite. They seem to want to eat more of the right kind of foods and less of the bad stuff, unless you're offering them all the bad stuff all the time and they sleep better. So I don't know if that's one of the remaining categories.

(17:30):

If it is, then we can let's dive into that now. If it's not, you want to address that now, I'd love to get your perspective on the role of physical activity and how that plays in combination with diet, gut health, and maybe supplements and meds.

Dr. Theresa Lyons (17:43):

So sleep isn't a separate category. Exercise is one of the most beneficial things you can do for a whole variety of things for brain and mental health. Exercise is something that actually falls into the mindset category for the parents because one way to improve your mood is to get out there and move. So I remember when I started, it was just, okay, let me just start taking a five-minute walk around the block or two. And I would come back and I would be like, "All right, I've got a new perspective here." So physical exercise helps with brain. It helps reduce anxiety. You can exhaust your body and at the same time then calm down your mind. You have different neurotransmitters that are produced, things like serotonin and dopamine. It also helps with learning. So when we exercise, especially if we're doing purposeful motor, so maybe doing yoga or Pilates or specific weightlifting or even basketball, that's purposeful movement.

(18:41):

That is helping the brain in learning and analyzing. So that is definitely beneficial in why you might see changes in mood and also changes in sleep. It can help with diet, right? So insulin resistance and blood sugar. So if people are eating foods that are not necessarily the healthiest, exercise will help with managing any insulin sensitivity or the blood sugar increasing energy levels, right? You might lose some weight. There are different seizure medications that unfortunately and other medications as well that unfortunately add weight. And so you have that decision of, okay, my child's putting weight usually around the stomach and

(19:26):

Their seizures are controlled or their mood is better. It's a difficult decision sometimes to make, but exercise really helps. Exercise helps with mitochondria function and their mitochondria functional issues with some of people with autism. There's so much with your body that changes with the exercise. And we can also talk about detoxing. So you said maybe they're not sweating all the time, but maybe they are sweating a little bit. And so if a person with autism, let's say one of the health issues they have is related to toxicity, whether that's heavy metals or environmental chemicals, mold exposure, there's so many different toxins we're exposed to. So if exercise is helping them sweat, that's helping them detox. And if they're exercising and jumping around, that's also getting their lymphatic system going. So if you ever want to stimulate your lymphatic system, you just start jumping. That's like the best thing to do.

(20:21):

And what does the lymphatic system do? It helps with detoxification. So there's so many aspects to exercise as to the benefits that someone would feel that it's absolutely great. And most people usually feel better afterwards, maybe not before starting it. That might be where some of the resistance is like, "I don't want to do that. I don't want to go to the gym." But then you just kind of remind the person, "Oh, remember how you felt afterwards?" "Oh yeah. Okay, let's do it. "So there's definitely a lot of things. I mean, sleep, obviously when you move your body, typically you fall asleep faster, you have better sleep quality, it's just really beneficial. And the negative effect of exercising as long as you do it moderately is very small. So it's something that is really great to do for sure.

Mike Carr (21:08):

So we're going to go ahead and stop this episode and continue with Dr. Theresa Lyons next week. She is obviously expert in the field. The fact that she's a scientist, a PhD and a daughter who has autism and has helped so many other parents both domestically and literally around the world. She's a published author and she has a platform that parents can join if you're so inclined to work with these functional health and traditional medical doctors. So just to recap the seven categories, diet, healthcare team, mindset for the parents and for your child, of course, supplements and subscriptions, education's number five, number six is probiotics and number seven is celebrating success. So please come back next week as we continue this interesting conversation with Dr. Theresa Lyons. Thank you.