If you’re parenting or caring for a teenager or adult with profound autism, you already know how exhausting it is to sort through the noise. You’ve probably heard more “There’s not much we can do” than you care to count. I’ve lived that. Our son was diagnosed back in 1990, before most doctors even had a framework for what they were looking at. So when I sat down with Dr. Theresa Lyons – a Yale-trained scientist and mother of a non-speaking autistic daughter – I knew pretty quickly we were going to have a different kind of conversation. This isn’t a theory. This is someone who has been in the trenches as both a researcher and a parent and she’s spent years helping families in over 22 countries figure out what actually moves the needle.
Key Points:
- A Yale-trained scientist and autism mom reveals why most parents never hear the best research and what to do about it.
- Diet, gut health and vitamin D status can have a bigger impact on sleep and behavior than most pediatricians mention.
- Building a healthcare team (not just one doctor) is one of the most important things a parent can do early on.
- Your own regulation as a parent directly affects your child’s regulation mindset is not a luxury, it’s a strategy.
The Information Problem Nobody Talks About
One of the things Dr. Lyons said early in our conversation really stopped me in my tracks. She explained that the reason so many parents are still getting outdated, discouraging information about autism isn’t because doctors are lazy or indifferent. It’s because of how the medical education system works.
In most areas of medicine, pharmaceutical companies fund continuing education for doctors. Reps come in, share clinical trial data and doctors learn about new approaches. For autism that pipeline basically doesn’t exist there’s no blockbuster drug so there’s no commercial machine pushing the latest research into exam rooms. The result? Incredible studies sit in journals that parents never hear about.
Dr. Lyons found one of those studies herself. It showed that 10% of children with autism achieve what researchers called an “optimal outcome” meaning they no longer meet the criteria for an autism diagnosis at all. She wasn’t told that by any doctor. She found it on PubMed. That’s the gap she’s spent her career trying to close.
The 7 Categories That Shape Outcomes
Dr. Lyons has worked with enough families across enough cultures and circumstances to organize what matters into seven categories. They’re not a checklist you knock out in a weekend. They’re an ongoing framework. But having a framework at all is more than most of us started with.
1. Diet
Diet matters, but it doesn’t matter the same way for every child. Some families go dairy-free and feel like they found a miracle. Others try the same thing and barely notice a difference. The point isn’t to find the one right diet, it’s to understand that food affects your child’s chemistry and it’s worth paying attention to. Dr. Lyons is careful not to overpromise here which I appreciated.
2. Healthcare Team
This one is big and it’s where a lot of families (including ours) early on make a costly mistake. You can’t rely on one generalist pediatrician to understand the full picture. You need a team and that team should include both conventional medicine doctors and functional medicine practitioners. Conventional medicine is invaluable in crisis seizures, infections and urgent symptoms. Functional medicine asks why. Why isn’t this child sleeping? Why are they having gut pain? Why does behavior spike at certain times? You need both questions being asked.
Telehealth has changed this dramatically. Dr. Lyons mentioned that parents used to have to drive hours to see good functional medicine doctors. Now, in most cases, you only need to do that once a year for an in-person visit. The rest can happen remotely.
3. Mindset (For the Parent)
I’ll be honest this one is easy to skip over. When you’re already overwhelmed and running on empty, being told to work on your mindset can feel like one more thing on an impossible list. But Dr. Lyons made a point that I think every parent of an autistic child needs to hear: your child’s regulation is directly connected to yours. If you’re dysregulated, exhausted and scattered, the decisions you make reflect that. And with a child who may be completely dependent on your decisions that matters enormously.
This doesn’t mean you need to be perfect. It means you need to practice something as simple as a five-minute walk around the block that helps you return to yourself before you return to the hard stuff.
4. Supplements and Prescriptions
There’s a lot of noise in this space, so I’ll share what Dr. Lyons said that felt most grounded. Vitamin D came up more than once. It’s simple, it’s testable, it’s covered by insurance and it’s frequently deficient in children with autism. She described cases where optimizing vitamin D getting blood levels up to what functional medicine considers optimal (around 60, not the conventional threshold of 30) resolved persistent sleep problems that families had been fighting for years.
Magnesium, methylfolate and electrolyte support are other areas worth discussing with your team. Our son seems to respond to methylfolate on rough days. It’s not a cure, but it’s low-risk and we’ve seen something with it. That said, always loop in your doctor before starting anything new.
5. Education
Dr. Lyons didn’t get deeply into this one in our first episode, but it made the list. How your child is being taught, what methods are being used and whether the educational environment is actually working for your specific child these things matter. This is an area we’ll dig into more in part two.
6. Probiotics
Gut health and autism have a relationship that is increasingly hard to ignore. Probiotics are one tool in that space and again what works varies by child. But for kids with significant gut involvement, this is often a foundational piece.
7. Celebrating Success
This one is intentional and I don’t think it’s soft. When you’re managing this much, it’s genuinely easy to lose sight of how far your child has come. Building in moments of acknowledgment for your child and for yourself is part of sustaining the energy to keep going.
The Exercise Factor
We went a little off-script here because it’s something I’ve noticed firsthand with our son. When he gets out and moves walking, shooting hoops, just being active his appetite improves, his sleep gets better and his mood is noticeably more stable.
Dr. Lyons confirmed that this isn’t a coincidence. Exercise benefits brain function, reduces anxiety, improves sleep quality, helps with insulin sensitivity, supports mitochondrial function and even assists with detoxification through the lymphatic system. She noted that purposeful movement yoga, basketball and deliberate exercise has especially strong benefits for the brain’s learning and processing systems.
The barrier is usually getting started. But as she put it, most people feel better after exercising, even if they resist it beforehand. That’s worth remembering when you’re trying to build the habit for yourself or encourage it in your child.
What You’ll Learn in This Episode
- Why the most important autism research often never reaches the parents who need it most
- How to build a functional healthcare team that goes beyond a single pediatrician
- Which basic health markers (vitamin D, hydration, gut health) are frequently overlooked in autistic children
- Why your own emotional regulation as a caregiver directly affects your child’s behavior and development
- How exercise supports sleep, detoxification, mood and brain function and why it’s worth prioritizing
- What “optimal outcome” means in autism research and why more parents should know it’s possible
- How functional medicine asks different questions than conventional medicine and why you may need both
Notable Quotes
“Science has disproved all of that, but the problem is getting that quality information to the parents has really been a challenge.” -Dr. Theresa Lyons (02:25)
“You’ve got to at least know what the possibilities are so you can make decisions based upon quality information.” -Dr. Theresa Lyons (04:27)
“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.” -Dr. Theresa Lyons (12:24)
“Your child’s regulation is impacted by your regulation. It’s impacted by your thoughts. It’s impacted by the decisions that you make.” -Dr. Theresa Lyons (10:35)
“I’ve worked with parents literally who have optimized vitamin D and then their child is sleeping.” -Dr. Theresa Lyons (15:53)
“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.” -Dr. Theresa Lyons (15:53)
“Our son was diagnosed before anyone really had seen autism back in 1990. We went to quote the best metabolic specialist in Dallas-Fort Worth. And he, after a two or three hour examination, said our son didn’t have autism.” -Mike Carr (07:46)
Resources & Links
Navigating Awetism – Dr. Theresa Lyons’s platform connecting parents with science-based autism guidance and functional medicine support. [navigatingawtism.com]
PubMed (pubmed.ncbi.nlm.nih.gov) – Free database of peer-reviewed medical research; Dr. Lyons recommends parents learn to use it to access the studies that don’t make it to doctor’s offices.
Autism Labs – The podcast series hosted by Mike Carr featuring expert guests and real family stories about navigating autism. https://www.youtube.com/@autismlabs/ featured
Dr. Lyons also authored a book on functional medicine and autism (published 2020) that includes a curated directory of functional medicine doctors across the United States worth tracking down if you’re building your care team.
Timestamped Outline
00:04 Introduction Meet Dr. Theresa Lyons Scientist, Author, Autism Mom
01:17 What’s Actually Possible: Why the Research Isn’t Reaching Parents
03:27 The Pharmaceutical Gap: How Medical Education Fails Autism Families
05:36 The 7 Categories Diet and Healthcare Team
07:46 Building Your Team: Mike’s Family Experience in 1990
09:31 Conventional vs. Functional Medicine: A Seizure Case Study
10:35 Mindset for Parents Why Your Regulation Matters
12:24 Supplements: Vitamin D, Magnesium, Methylfolate and Electrolytes
17:30 Exercise: Sleep, Detox, Brain Health and Mood
21:08 Wrap-Up: The Full 7 Categories and What’s Coming Next Week
Frequently Asked Questions
Is ABA therapy still the main option for autistic teens and adults?
ABA remains widely used, but Dr. Lyons points out that the science on autism interventions has advanced significantly beyond what most practitioners routinely offer. Behavioral approaches are one piece not the whole picture. A combination of medical evaluation, diet, supplementation and supportive therapies often produces results that behavior intervention alone doesn’t.
My adult child has severe behavior challenges. Where do I even start?
Dr. Lyons suggests starting with basic health markers vitamin D, gut health, hydration and sleep. Many behaviors that look like “just autism” are actually symptoms of underlying medical issues that are being overlooked. Getting a functional medicine evaluation can often reveal treatable causes behind behaviors that families have spent years managing without resolution.
How do I find a good functional medicine doctor for my child?
Telehealth has made this much more accessible. Dr. Lyons spent years building a network of qualified functional medicine doctors across the U.S. and included a directory in her 2020 book. Look for practitioners who ask why not just ones who manage symptoms and who are willing to collaborate with your conventional medicine team.
My child is non-speaking. Can any of these strategies help with communication?
Yes, though Dr. Lyons is careful to frame this as individual. Some of what looks like a communication barrier has roots in neurological and physiological factors sodium regulation, electrolyte balance and mitochondrial function that can be addressed medically. Improved regulation, sleep and gut health often show up first in behavior and sometimes in communication as well.
Are supplements safe to try without a doctor?
Some are lower-risk than others. Vitamin D (with a blood test to guide dosing), magnesium and methylfolate are widely used and generally well-tolerated, but Dr. Lyons consistently recommends working with a knowledgeable practitioner rather than guessing. What helps one child can do little or nothing for another and testing takes the guesswork out of it.
Transcription:
Mike Carr (00:04): Welcome back to another episode of Autism Labs. This week we have a really special guest who’s bringing a unique perspective to the table. Dr. Theresa Lyons is the CEO and founder of Navigating Awetism. She’s a Yale-trained scientist and the mother of a non-speaking autistic daughter. What makes her perspective so valuable is that she brings real lived experience alongside a serious scientific background. Her mission and I think this is what’s going to resonate with everyone listening today is helping families, especially parents and grandparents, cut through the noise to access trustworthy, science-based guidance they can actually use.
One of the things you’ve talked about is empowering parents and grandparents with science-backed, personalized tools. Can you talk a little about that? What are the best tools out there? And what stories have you seen either of people implementing things incorrectly, or moments that were almost magical in terms of outcomes?
Dr. Theresa Lyons (01:17): Let’s start with what is possible. When our kids are diagnosed with autism whether it was yesterday or decades ago many parents are unfortunately being given the same outdated information: that autism typically gets worse, not better. That there’s nothing medicine can really do except prescribe medications when behaviors escalate. That behavioral therapy works, but the waitlists are long and it takes forty hours a week of intensive repetition to make progress.
Science has disproved all of that. But getting that quality information to parents has been a real challenge and the reason comes down to how the pharmaceutical industry is structured. I worked in pharmaceutical medical strategy and typically what happens is a drug company funds clinical trials, gathers impact data and then deploys a team to educate doctors. Doctors learn and then they share that with patients.
For autism, there is no drug that targets root cause. There are no large clinical trials in that space. There’s no pharmaceutical company sending reps into doctor’s offices to talk about the latest research. There’s no continuing medical education funded to keep doctors current. So what happens is that great research continues to be done in autism but since it hasn’t been commercialized, it doesn’t get spread, discussed, or land in the places where parents could actually hear it.
We get the diagnosis. We start scrambling. We waste enormous amounts of time just trying to find reliable information. I went through that thirteen years ago and parents are still going through the exact same thing today.
What really made me step away from my career and go all in on my daughter was a research publication I found that said 10% of children with autism achieve an optimal outcome. Optimal outcome, as defined by scientists, meant the child no longer met the criteria for an autism diagnosis. No ongoing challenges with communication. No repetitive behaviors meeting diagnostic thresholds. The child had, by observation, moved past the criteria they were originally diagnosed by.
I wasn’t told that by any doctor. I found it in a publication. And once I knew that, everything changed because I was going to make very different decisions for my daughter knowing that some children get there. Not all children, but some. Parents need to know what’s possible so their decisions are grounded in reality, not on the floor.
Mike Carr: What’s most striking to me in what you’ve said is how inaccessible this information is for so many parents who could be making different decisions if they only knew. So can you give us something concrete? If a parent is listening right now and hasn’t done these things yet, where do they start?
Dr. Theresa Lyons (05:36): Over the years I’ve worked with parents in over 22 different countries and I’ve been able to identify seven categories that consistently matter. Different families need to work in different areas depending on their child, but these are the buckets.
The first is diet. Diet matters, but it doesn’t matter identically for every child. You’ll hear one parent say going dairy-free was transformative and another parent tries it and feels no meaningful change. The reason is that you have to understand the chemistry of that specific person.
The second is the healthcare team. I wish it was just one doctor. It isn’t. You need a team and critically, you need both conventional medicine and functional medicine represented. Conventional medicine is essential in a crisis. Functional medicine asks why. Why is this child not sleeping? Why do they have gut issues? Why can’t they focus? That question is what changes things.
If a child has seizures, for example, you’d use conventional medicine first: get the MRI and EEG, use insurance to fund it, get the seizures under control with medication. But then you pivot. You ask. Why are they having seizures? Is there a cerebral folate deficiency? Is there an unaddressed infection like Lyme? That second layer of questioning is where functional medicine lives and it’s why you need both.
Mike Carr (07:46): Our family’s experience is part of this picture. Our son was diagnosed in 1990, before many people even had a framework for what they were seeing. We saw what was described as the best metabolic specialist in Dallas-Fort Worth. After two or three hours, he told us our son didn’t have autism. A few months later, we went to the Autistic Treatment Center. They had a checklist of twelve to fifteen behaviors. Every box was checked.
In your experience working with families across different locations, have you found good functional medicine practitioners are accessible? Or is this still a situation where parents may need to travel to specific centers?
Dr. Theresa Lyons (08:40): In 2020, I included a directory of functional medicine doctors in my book — doctors I had personally spoken with through my work with families. There are good practitioners in different states. Some parents may need to drive a couple of hours for an initial in-person visit. But with telehealth that’s often only necessary once a year now.
The important thing when building your team is holding onto that combination: conventional medicine doctors and functional medicine doctors, working ideally in coordination. You’re not replacing one with the other. You’re using each for what it does best.
Mike Carr (10:28): Okay, you’ve covered diet and healthcare team. We know there are five more. Keep going.
Dr. Theresa Lyons (10:35): The third is mindset and this is mindset for the parent. This is one of the most vital and one of the most frequently skipped. Your child’s regulation is impacted by your regulation. By your thoughts. By the decisions you make. If you’re dysregulated, overwhelmed, irritable and exhausted, the decisions you make for your child reflect that.
You get a diagnosis and suddenly everything is coming at you at once. The child might not be sleeping. They might be a picky eater. They might be having meltdowns. On top of that, you have a job, you have other relationships, you have other children maybe. It’s a lot. And many times the first thing a parent needs to do is just get their bearings. Develop a practice for returning to yourself so that when you make decisions for your child, you’re doing it from a grounded place. That might be a five-minute walk. For me that was enough to come back and think, okay, I’ve got a new angle on this.
The fourth is supplements and prescriptions. And this starts with basic health which, unfortunately, gets routinely dismissed for people with autism. Doctors see a problem and often attribute it to the autism itself, without investigating whether there’s an underlying medical cause that could be addressed.
Vitamin D is the one that comes up most consistently. Most children who haven’t been supplementing are deficient. Conventional medicine considers 30 or above acceptable. Functional medicine targets 60, which reflects optimal health rather than bare minimum. And for kids with immune system involvement which is common in autism the body uses more vitamin D, so even kids who are supplementing may not be reaching optimal levels.
I’ve worked with parents who had been managing sleep problems for years. They optimized their child’s vitamin D. The child started sleeping. You don’t want a child going through life with a vitamin D deficiency, being given melatonin indefinitely, when the actual root issue could be addressed.
Hydration is another area people underestimate. What a child drinks matters. Electrolytes sodium, potassium have real implications for neurology, for speech, for motor control, for regulation. These are basic. They’re often overlooked.
Mike Carr (13:04): A lot of the parents we know have children who are on a mix of prescription medications for seizures, behavior, sleep and also various supplements. Things like methylfolate, melatonin, magnesium. In our family, methylfolate sometimes helps on hard days. It doesn’t cure anything, but the risk seems very low. Melatonin helps some kids with sleep but seems to lose effectiveness over time as the body adjusts.
Are there things you’d say are generally lower-risk and worth trying, even before a family has their full team in place?
Dr. Theresa Lyons (14:42): Vitamin D is the one I’d say is genuinely universal in my experience. It impacts sleep, it impacts the immune system, it touches reactivity and irritability. And it’s testable. A blood test covered by insurance can tell you where a child stands. You’re not guessing. The main barrier is that blood draws are hard for some kids so you time it with another procedure, or you plan it carefully. But that information is worth having.
Beyond that, it gets individual quickly. What works meaningfully for one child may do very little for another. That’s why functional medicine testing matters so much it stops you from guessing and starts you toward actual answers.
Mike Carr (16:46): Let me ask about exercise, because we’ve seen something real with our son. When he’s active during the day walking, moving, playing basketball he sleeps better, his appetite improves, he reaches for better food. Is exercise one of your seven categories, or does it fall under something else?
Dr. Theresa Lyons (17:43): Exercise falls under mindset it’s one of the most reliable tools a parent can use for their own regulation and it transfers directly to the child. A five-minute walk changed my perspective more times than I can count.
But for the child, the benefits are also real and well-documented. Exercise reduces anxiety, supports the production of neurotransmitters like serotonin and dopamine, improves sleep quality, helps with insulin sensitivity and blood sugar management, supports mitochondrial function and aids detoxification through the lymphatic system. If you want to stimulate the lymphatic system, just jump that’s genuinely one of the most effective ways to do it.
Purposeful movement yoga, weightlifting, basketball, structured activity also supports the brain’s learning and processing systems in particular. So the improvements in mood, focus and sleep that you’re seeing with your son are consistent with what the research shows.
The barrier for most people is starting. But almost everyone feels better after exercising than before. That’s worth keeping in mind when you’re encouraging it in your child, or in yourself.
Mike Carr (21:08): We’re going to pause here and pick this up with Dr. Lyons next week. Just to make sure everyone has the full picture: the seven categories are diet, healthcare team, mindset, supplements and prescriptions, education, probiotics and celebrating success. Please come back next week for part two.
Thank you, Dr. Lyons.
