Wellness In Every Season

Autism is Treatable

• Autumn Carter/ Dr Theresa Lyons • Season 1 • Episode 198

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What if everything you’ve been told about autism being lifelong isn’t the full story?


In this episode of Wellness in Every Season, Autumn Carter sits down with Dr. Theresa Lyons, scientist, autism researcher, and founder of Navigating AWEtism, for a deeply insightful conversation about the science, misunderstandings, and possibilities surrounding autism. After earning her PhD in computational chemistry from Yale, Dr. Lyons spent years working in research before her daughter’s autism diagnosis changed the direction of her life.


Overwhelmed by conflicting information and unsupported opinions, she turned to what she knew best—scientific research and data analysis. What she discovered reshaped her understanding of autism entirely. In this conversation, Dr. Lyons explains emerging research on non-persistent autism, discusses the role of underlying health issues such as sleep disruption, gut health, and nutrient deficiencies, and shares why many challenges often attributed to autism may actually stem from treatable medical conditions.


Autumn and Dr. Lyons also explore the emotional and physical toll on families navigating autism, the importance of self-care for parents, and why presuming competence in children with autism can dramatically shift how they grow and learn. Together they unpack masking, nervous system regulation, and how creating space for healing can allow children to thrive in ways many families never realized were possible.


This episode is both hopeful and empowering for parents, caregivers, educators, and anyone wanting a deeper understanding of autism beyond common misconceptions.


You can learn more about Dr. Lyons’ work and access science-based resources for families through Navigating AWEtism at navigatingawetism.com, follow her on Instagram @navigating_awetism, or explore her educational content on YouTube.

For more wellness tips and exclusive content, join my newsletter! Sign up now at https://wellness-in-every-season.kit.com/5-days-to-mastering-mornings-and-evenings receive a free 5-day guide called "Awaken and Unwind: 5 Days to Mastering Life's Mornings and Evenings." 

Autism Episode Kickoff

SPEAKER_00

This is episode 198, and today we are talking about autism. And I know this is such a huge topic, so we'll see how far we can get in the time that's allowed us. Welcome to Wellness in Every Season. We talk all things wellness to help you align yourself, align with your goals, find balance in your life, and just recalibrate yourself. If you are listening for the first time, welcome, welcome. I'm so glad you're here. And let's get started in the rest of the podcast. Today I have with me Dr. Teresa Lyons. And I was so excited when she reached out to me. It was just one of those like the fates aligned type of things because I had just finished a course on autism because I was in the middle of signing on a client who let me know that they are high-functioning autistic. And I went, Oh, well, I don't know enough about that. Like I know almost nothing. So I had to really start doing my research so I could help her. She told me she had ADHD as well. I was like, cool. I know that one. I have lived experience. But autism, I did not. And it really opened up my world and made me realize, okay, one of my children probably does have it. My dad, yes. And different family members. Okay, I think they might actually have it. And it explained so much of how I connected with them and why I felt like I could not connect with them all the way. So it was really enlightening for me. But now I'm turning this all about me. So let me read a little bit about Dr. Teresa and then I'll let her start speaking. So I really liked this part. So I'm going to use this kind of as her introduction. And it's the question in my outline that I ask of what led you to what led you to become who you are professionally. And she says her journey started as both a scientist and a parent. She earned her PhD in computational chemistry from Yale and spent years immersed in research and data data analysis. You would get along with my husband. Very nerdy. But everything changed when my daughter was diagnosed with autism. How old was she? Let's start there. Three and a half. Three and a half. Wow. And usually it happens later on. Thankfully, as time progresses, it gets shorter and shorter.

SPEAKER_01

Yeah. The diagnosis can be made reliably now at 18 months.

SPEAKER_00

That's amazing.

SPEAKER_01

Yeah.

SPEAKER_00

Okay, let me finish reading because it's really good. You say everything changed when suddenly you found yourself overwhelmed by conflicting information, endless opinions, searching for answers that were rooted in science, not guesswork. That experience shifted my entire life path. I took everything I knew about research, data, and problem solving and applied it to helping my daughter, true mom, right there. Doctors appreciated working with me and the science I shared with them, and they encouraged me to educate others. Over time, other parents started reaching out, wanting guidance on how to make informed decisions for their own children. That's what led me to navigate creating autism. And it's spelled like awe, autism, a platform that organizes the entire world's scientific information about autism and makes it accessible, trustworthy, and actionable for parents. And today she says her work is about giving families what I wish I had when we started clarity, confidence, and a supportive community. It's deeply personal. It's my life's mission and what other parents need. I love you already, just to say that. And through its emailing back and forth, I felt this kindred spirit. So I'm so excited that you're here. And I've been looking forward to this.

SPEAKER_01

Awesome. Me too.

SPEAKER_00

And I love stories like this. Wow, I already feel myself getting emotional. I love stories like this because the people who have that deeply lived experience, they understand and they can work from compassion and real understanding. It's like going to an OB who's never had children before, or going to a male gynecologist for all of like your womanly needs. It's it's not the same. And I've done that, and it's confusing. There's just you can't truly understand somebody unless you've walked at least some of that path. So I love that I wouldn't say I love that you've walked that path, but I love that you have the knowledge, if that makes more sense, that you can share with so many other people and you saw a real need and you had all of this background and this knowledge and this thirst that you were able to bring into it. So for everyone who's listening and who's walked this path and led to you, thank you, Kurt, going through this because it's obvious that this was a difficult journey and that you are educating professionals who work in this realm.

SPEAKER_01

Yeah, and it's very true. Like I worked in the pharmaceutical industry, I worked in a lot of different therapeutic areas, oncology, and I had different family members who were impacted by oncology and cardiovascular issues, but I would never understand autism to the level that I do if my daughter wasn't diagnosed with it. There would be no way for me to really understand the entire experience if I didn't live it every day and understand really the difficultness and how you navigate all that. And yeah, there's been a lot to this journey for sure.

SPEAKER_00

What is there's so many questions I'll ask at once. What is your the biggest thing that you are having to correct? The b biggest misnomer that you're like, no, that's not right. That's out there.

SPEAKER_01

I would say the biggest one is that autism is lifelong. Because it's not explain this. This is part of what got me really into educating about the science. So over the decades, there are always these publications, scientific articles, studies showing that there were kids who lost their autism diagnosis. So back when my daughter was diagnosed in 2013, the latest research then showed about 10% of kids who are diagnosed with autism lose their diagnosis, meaning they have an optimal outcome. That was the phrase that was used back then. And there was always like this chatter, right? So when my daughter was diagnosed and I started to talk to different people, I had a consultant who worked for me. And when him and I started talking about kids, which we hadn't done really when we were working together, he explained to me, yeah, my son he was autistic, and you know, my wife did so much, and he's not on the spectrum anymore. And I thought, well, I can't believe I'm reading a scientific publication and then I'm talking to someone who who has lived that. So that was something that I really wanted to study more. So really my first step was okay, I read the publication, I see that's a possibility, all right. And then I started just like searching the world to talk to other parents who had done the same thing. Like, is this really possible? Right? Because it's so against anything that we've ever heard about autism. Autism is a lifelong diagnosis, but if you read the research, it's not. And then if you talk to different parents, you find parents who are like, no, my child's not autistic anymore, or even things like, oh yeah, we used to have problems with, you know, this and this and this and that, and you know, now it's not so much. And I didn't really understand how fluid it could be. So that was the first real big aspect that I learned that was a big misnomer about autism. And now the latest research in 2023 shows that 37% of kids with an autism diagnosis lose their diagnosis, and they've actually changed the terminology of what they call it. So before it was an optimal outcome, but now the terminology is non-persistent autism, so it's a completely different phrase.

SPEAKER_00

Okay, I need to grasp this. My brain is just like, nope, that's okay. So it makes sense and it doesn't for me. It makes sense in the science has always told us that after a certain age, our brain can no longer grow and perform, it starts to atrophy. You've seen these articles. I've heard that, yes, I've heard that. Yep. And now science is far enough along that's telling us no, that's not true.

SPEAKER_01

That's not true. Correct.

What Losing Diagnosis Means

SPEAKER_00

So yes, yes, from that standpoint, yes, that our brain can continue forwarding new pathways and everything else. But does that also mean that they no longer have any autism characteristics? Because there's some parts of autism that are kind of like superhero cape. Like you can think of things very critically, and there are so many people with autism who have created amazing things that we use daily that are around us and come up with amazing scientific formulas. I would be shocked if somebody told me that Albert Einstein was not autistic.

SPEAKER_01

So it's just it's mind-boggling that but so the thing, there's lots of things to unpack here, but the thing is losing an autism diagnosis doesn't mean you lose who you are, right? You lose that barrier that prevents you from having part of the life that you want, right? So, like an autism diagnosis is based on observation. There's no blood test, urine test, you know, you can't take an MRI and you know, spot on the brain, okay, that person's autistic, right? There's nothing like that. It's based upon behaviors, right? So it's repetitive behaviors. So, you know, maybe stimming, rocking, you know, but it's to the point where it impacts your life, right? That's what makes the diagnosis and also limitations in communications. So if a child's not speaking at all, or you know, they're not able to hold back, hold a conversation that ebb and flow back and forth, right? So if someone loses an autism diagnosis, it doesn't mean they might lose their brilliance in math.

SPEAKER_00

They'd still have the high IQ, they would not need to mask and do all these other things. They would be able to be more at home within themselves.

From Hardship to Awe

SPEAKER_01

Correct. They wouldn't have that, and that's the science behind it. It's not as if you're changing who that person is. And the other thing to think about is okay, so those things that are prohibitory, right? So you know, stimming or some repetitiveness, is that what makes me great? If if you're going along with you know superpowers, right? You know, that's so that's a question for a person to answer themselves. Am I so brilliant in math because I rock? Would I like to not rock? Would I like to if I didn't rock, or if I didn't have the need or that compulsion to touch the desk five times or something along those lines, what could my life be? So that was something that I learned. It took me a while to really be like, wait, what? This is not what the doctor who diagnosed my daughter means. This is that lifelong. And I have to say, in the beginning, I remember reading a Yahoo article. There were two articles. This was around the time my daughter was diagnosed, and it was saying how, you know, this is lifelong and repeating everything that I'd just accepted as what autism was without questioning it. And so I was like, you know what? I'm gonna email the author. So I emailed the reporter who wrote these two stories, and him and I started corresponding. And I asked, okay, you know, where did he do his research? Because this is completely different than the scientific articles that I had seen over the years. And he said, Listen, I gotta be honest with you, I had a deadline, I did maybe an hour research at most on both of those articles, and I just had to get something out. And I thought, oh my goodness, I literally almost shifted what I thought was possible for my daughter based upon an a journalist who put in an hour of research, whereas I'm putting in hundreds of hours of research, right? Because now I want to know everything, and it's not the full story. So that really is that first step of okay, what really is autism? And that's also why I spell it aw T I S M, right? Like, so this was a whole journey of mine where that autism diagnosis just represented so much difficulty, right? Everything worked more difficult for my daughter, and you know, she was like four years old, and I'm thinking, whoa, this is not going to turn out well, it was not a good situation. She was more on the level three, right? So no smiling, no pointing, no talking, nothing along those lines. And so as we started to resolve different health issues, right? Because that's when I started getting deeper. Okay, how does someone lose an autism diagnosis, right? What is really the underlying reason for some of these behaviors to be displayed, right? Let me understand the chemistry in that. I'm a chemist, right? That's what I need to understand. And uh, so as I did that, and as my daughter got healthier and able to do different things, I was so much in awe as to how much she wanted to participate in life. She got up every day, go to school. She probably had a stomachache for days and days and days, right? Different, you know, a variety of different things. All of that just made me be in so much awe of who she was. So when I think of the word autism now, I think of my daughter or anyone else's child who has these different limitations, but they're still like, I want to do XYZ. They still have dreams, I want to get married, I want to have an apartment, I want to have friends. But there's always this element of dreaming, regardless of how difficult the situation is, because there's a lot of things that come with an autism diagnosis that are really limiting and really intense, and it really changes how someone can participate in life, but the the dream and and the determination doesn't die. So that's why that word really became something that I love and I I see it as autism, not necessarily for superpowers of you know, like math. My daughter's fabulous in math, right? Each day. And that's what I've learned with kids with autism.

SPEAKER_00

We are already deeper than I expected to get right away. So let me back up for a second for those who don't really realize, and this is a question where I know the answer because I've already studied this. My little bit of study compared to your because you needed it.

SPEAKER_01

I didn't I needed to. Yeah. Yes.

Physical Symptoms and Health

SPEAKER_00

So for me, when I was studying about it, this is a course that I took from a therapist who is autistic, which is amazing. I always find somebody who's already lived through it, like I'm gonna listen to them more than somebody else. Right, of course. What are some of the symptoms that people with autism can also have? So you talked about stomach upset. So there can be other physical symptoms that go along with this. And I think this is important for those who are just realizing their child might be, or for those who don't understand autism at all to really understand that it's more than just they might have different ticks.

SPEAKER_01

And that's the important aspect, right? So stomach upset, there's usually diarrhea, constipation, or alternating diarrhea, constipation. There's some kids who don't only poop like once a week, right? That's severe constipation. That's gonna have an impact on the rest of their body, right? So it's gonna put a burden on certain things, anxiety, OCD, regurgitation, toe walking, all of that gets kind of like lumped into well, that's just autism. Sleep problems. 80% of kids with autism have sleep issues at some point in their life. And some kids, up until their 20s and 30s, still have sleep issues. So they have lived an entire life of not getting a good night's sleep, which puts an incredible burden on the body. But all of this gets lumped into autism. So when you talk about uh getting optimal health, if you can address those medical issues, uh, then it frees up the person to really be more of who they are. And that's definitely a huge misunderstanding with autism is understanding how so much difficulty is there, but that has just gotten unfortunately lumped into autism. And then a lot of times doctors say, Well, that's just autism, there's nothing you can do, and that is not true whatsoever.

SPEAKER_00

Anybody who's starting to research her, just stop and just listen to her. But for me in taking this course, it was that big aha moment of realizing that some of these symptoms are happening because they feel a need to mask. And it's not mask like masking tape, it's putting a mask on, Halloween mask, whatever, that they are trying to show up as quote unquote normal in the world. They're trying to fit in, and people look at you weird, right? When you're so upset that you're doing this, right, right. Or if you're having to wash your hands several times, or you have little other ticks. And it can be if we're going to the public school system for a second, all of you go back to you're in first, second grade, third grade, that person who needs to tap their pencil or that needs to do different things, how distracting that is. So they're trying to hold that in for the school settings. And or think about the times when you are really upset and you're trying to hold in all your emotions. What did that do to your GI tract?

SPEAKER_02

What did that do to your exactly?

SPEAKER_00

So hopefully that helps give you guys who don't understand as well a better sense of this is what their lived experience is that they can't really fully trust being at home and safe and secure and peace in their own bodies. And it can be so hard. I know several people who've had autism, several clients that I'm like, have you ever considered? And they said, actually, I was just learning this. And it was somebody who I've been coaching for a while, and he said, It now makes sense why I never felt connected to my parents. Why I felt like certain things were abuse, and there were certain things that absolutely were, but when your own parents can't connect you, that's heartbreaking, and it's so hard whether or not you'd have autism. And then when you do have autism, it's because your needs are different than your siblings if they don't have autism. And that's exactly where you come in, Dr. Teresa. So I love that you're talking about this. And I want those who are listening to know that even with late diagnosis, early diagnosis, whenever you are diagnosed or if you think you have it, that there is space for you. And what I recommend to all of my clients who have any type of neurodivergency is to find other people who are like you so you feel seen and supported. It's always good to have at least some kind of echo chamber. I'm not saying echo chamber, but like a little one to be okay, I can breathe. I can fully be myself. These masks that I wear can disappear because let's be honest, we all have different masks that we wear and different.

SPEAKER_01

Yeah, most definitely.

SPEAKER_00

We try to full to come across as our full authentic selves, but it's we don't always end up in situations where we're safe, we feel safe enough to do so. So that is where the masks come in.

SPEAKER_01

So there is research, it's just starting on masking and autism.

SPEAKER_00

Oh, perfect.

Sleep Vitamin D and Symptoms

SPEAKER_01

So when someone is masking, what happens is you get that autism burnout a lot. And what a lot of times when if someone is masking an Let's say they're trying not to be OCD on sort of stuff, like you mentioned, the tapping and things like that. It takes an incredible amount of energy to not do that. And that's where the exhaustion or the burnout comes from, where okay, I'm trying not to do something that I want to do. And so in those instances, it would be great to say, okay, is any of that OCD or any of that whatever I'm trying to mask, is there an underlying health issue that my body needs that is it's trying to do with tapping or whatnot? So there's different gut infections that can cause OCD-like behaviors, that can cause rigidity when someone has to have the schedule go exactly the the way it is. So it's so important to look at the person as a whole and to understand all right, do they have optimal health? We know the gut biota, microbiota is very different in people with autism. But that also then presents opportunities to really understand is there are there gut infections going on? And that certainly happens in many kids with autism. And it doesn't go away when someone grows up, right? So it certainly can be that you know they've had a gut infection for a while. So really understanding gut health is important. Different things like vitamin D. So a lot of times sleep issues are just from a lack of vitamin D. And if someone is not supplementing with vitamin D, especially in an area where you get winter, you're going to be deficient even by conventional medicine standards. So typically, if someone's not supplementing and they're eating, you know, a regular diet where there is some supportation of vitamin D in our food, their levels of vitamin D are going to be around like 19. And so, really anything 25 or below 30 conventional medicine, your regular doctor would say, Wow, you're deficient. We need to do something. And then for functional medicine, which is a doctor that says, okay, let's try and have you have optimal health, not just like okay health, right? Their values for vitamin D is between 60 and 70. So you could see how something like vitamin D could impact sleep on a person with autism. And then that sleep issue creates a snowball effect in the negative way, right? So there's research publications. I remember reading these two articles almost a decade ago, longer than a decade ago, where it was two sleep studies looking at kids with autism. And if they didn't get quality sleep, they were looking at their autistic symptoms. So what happens when someone doesn't get quality sleep? And for those with autism, the symptoms increase. So that got me thinking, wait a second. So all right, autism isn't static, right? So you can have, you know, really bad days, you can have really good days. So let me understand both of those, like what causes a bad day, what causes someone's autism symptoms to increase, which is something not talked about often. And then could the converse be true? So if my daughter is starting getting quality sleep, does that mean you know meltdowns would not be as frequent? Yeah. I'm like, okay, that you know, like why would a doctor that makes sense?

SPEAKER_00

Exactly. Yes, and why would a even not address that? And daylight savings. I hate daylight savings. Anybody listening, if we have a chance to vote, you had better vote go away daylight savings, whether it's yes or no, whatever one they choose on there, yeah, pick one. Otherwise, you're not in really in my community. But I think daylight savings, it's awful for me, and I'm an adult. Yeah, my kids are trying to have meltdowns from it, and I still say more.

SPEAKER_01

Exactly. So it's really starting to understand. Okay, wait a second. So if my daughter's having a really bad day and I'm associating, oh, well, that's her autism, is it really? Or is it that she didn't get good sleep? And you know, what is the percentage? Maybe 50% of that is from an autism diagnosis, but it might mean there's something else. Maybe 50% is because she didn't sleep because she's not having vitamin D. There are all these different aspects to health that would bring a lot of peace to people who are masking, so that it's not as if you have to change who you are. That brilliance of autism, nobody wants to take that away. It's just these factors that really limit how you can participate in life the way you want to. That's the real aspect to look at. So if somebody has OCD really working with a functional medicine doctor and understanding, is there any medical reason why I have this? Like, why is it okay for someone with autism to have a lifelong of anxiety? But like, if they didn't have autism and they went to a doctor and said, Listen, I'm having anxiety, they would get treated entirely different. Like, oh, that's not good. Why you have anxiety, you shouldn't have anxiety. But all of a sudden you have an autism diagnosis, and it's like, oh yeah, you're not gonna sleep, you're gonna be cassipated. Like, how is that fair? It's not.

SPEAKER_00

I love this, and especially because what I've been learning is that it's normal if you have autism that you have co-occurring, yep. ADHD, those are the really common too that you'll have anxiety. And it's the same with AHD. If you have ADHD, it it can be common to have depression or OCD or anxiety. It makes and for me, I was talking to somebody yesterday and I was telling her, I feel like if anybody has a problem, the answer is either drink more water or get more sleep. Uh like there's more to it than that, but I feel like those are like my go-to, especially with my children, is like, oh, you're emotional, which one do you really need? Or do you need a sack? But it's true because when we boil everything down to everything in life, are you getting enough sleep? And is it quality sleep?

SPEAKER_01

Yeah.

SPEAKER_00

Because that's really your chance to reprocess, and you're finally relaxed. And if you've ever watched anyone sleeping, you're completely limp. Like there's your muscles are all blah. It's the closest you get to death without dying. I've heard that saying, and it's true in that you're totally relaxed, like you're you're done.

SPEAKER_01

You're relaxed, but there's so many important biological processes going on underneath. Oh my goodness. Like even sleep, rem sleep, right? REM sleep is really helping your brain process all of your experiences throughout the day, right? That's then REM sleep is when your eyes are going back and forth. Yeah, right. So you have REM sleep, you have light sleep, and you have deep deep sleep. And your body needs to cycle through all of that, and it's doing different things. It's detoxing when you're in deep sleep. Your cerebral spinal fluid is, you know, swooshing around the brain and actually detoxing, which is important. So the next day you can learn, you can retain. There's so much that the body does that we take for granted, and then it just gets lumped into, oh, that's autism, but it's not. There's no reason why somebody with an autism diagnosis should have to have these other comorbidities and just be like, Well, that's just autism. It's really not. And that's something that I learned early on. And it's just unfair when people with autism don't get the proper medical attention just because there is that autism diagnosis.

SPEAKER_00

Oh, where do we want to go next from that? I love that you didn't just give up and like, okay, well, that's all there is.

SPEAKER_01

I came close many times, so please do not please do not think this was, you know, even that Yahoo article that I read, I remember just shutting down my computer, leaving my house, being like, don't know what to do to this. I read the science, and this was before I talked to him. I read the science, I know those scientific articles, but everywhere I turn, they're telling me something different. So now I have these two conflicting things. And I I went to go for a walk. I went in nature because I really just had to just take a moment to be like, what am I doing here? And that's why I was like, you know what? I'm gonna find out what research that guy did. Like, I want to know he published these two articles, right? On on Yahoo. That's that's a large publication, right? Like that's reaching millions. I want to know what research he did. And then when he I was so happy he was honest with me. And when he told me that, I was like, Teresa, you just almost changed the entire trajectory of your daughter's life based upon an article you read in which a guy did an hour of research. Like you have to be really careful about whose opinions and what data you listen because you can't get shifted like that.

Research Literacy Matters

SPEAKER_00

So let's stop there for a second. And can you please come on another time and we'll link these together and talk about how to research? Okay. Yeah. You have way more background in this. I've only taken one class and I was so excited to take that class. It was on research. And then once we learned how to read research articles, because you don't read them in order, which is weird, we then had to do a research project, and it was amazing. But I'm gonna blunder it with my one class that I took because you compared to you, but I really want to give everyone that skill set because it is amazing to have that. And we spend so much time in society just reading the headlines.

SPEAKER_02

Yeah.

SPEAKER_00

And when we actually read the article, it has nothing to do with the headline. Yeah. And that's just that's not reading research articles in the right place. Some we're skipping research on TikTok.

SPEAKER_01

Yeah. Oh, yeah.

SPEAKER_00

Oh, yeah, social media research. Yeah. Anyway, so yes, let's let's definitely have another episode where we just talk about that. And I'm keeping this part in here. I did not edit this part out on purpose because I wanted all of you to hear this part of the conversation. That she is talking about doing the research and questioning herself, which is painful and important, and everybody needs this. So I'm keeping this part in here because we all need to remember this. That Dr. Google is not the end all be all, right? Going to Chat GPT or going to a news article. And unfortunately, this was how many years ago that you read this? This was excuses got worse.

SPEAKER_01

10, 12 years ago. Oh, yeah, definitely.

Parent Self Care

SPEAKER_00

Journalism is not what it used to be. I have a friend who's a journalist, and she's doing a major career pivot because she was a stay-at-home mom, now is divorced, needs to go back to work, and journalism isn't what it used to be. So it's not something she wants to do anymore. She wants to do something that's a lot more heavy research-based, and something that's going to make a difference in the world. And for her, it's no longer journalism. So she's doing a really good pivot, and I'm helping her along the way. It's more of a friendship than coaching right now because I am friends with her. I'm like, I don't really want to cross that boundary. But there's so much to be said on and the hard part, and we've all had to pay attention to this with COVID, is that science is evolving. So the things that we know to be full truth today are going to be different tomorrow as we gain more understanding, and especially as we realize, okay, I had a bias here when I was studying this. And if I take my bias out, it actually is different. There's so much there to so we will definitely talk about that more. What is something else that people who are struggling with really need to know, especially parents? For me, it would be, and you talked about this within yourself, is taking care of your own wellness.

Tiny Self Care Starts

Lake Swim Big Goal

SPEAKER_01

And it took me a long time to learn this lesson. But again, like the different parents that I were talking to in that initial stage of research of okay, what what is really possible for you know the future? How parents 10, 15 years down the line, and many of them would tell me, you've got to take care of yourself, you know. And they they've said, I've health, you know, my wife had breast cancer, and you know, I've had now diabetes. And so there was that guidance early on. And I remember talking to one mom and she was telling me about self-care. And she was like, Do you do self-care? And I was like, I don't really have time for a massage, and I can't really afford it. Like, if I spend the money on that, I'm not gonna relax because I should be spending the money on my daughter, so that's not self-care, you know. So, like, you get all caught in your hat really quickly, and so it's like, no, I'm not doing even thinking about self-care is causing me stress. So it was just like eventually, as my daughter started just improving a little bit and our days were getting to be a little bit easier. Then that's when I really had that time. I remember the first time where you know she's putting on her jacket and her shoes for the first time. I was like, I can't hover because then she's just gonna, I'm gonna want to do it for her, and she's just not gonna try. So, like, okay, what do I do? What do I do? Like, I had to just leave the kitchen area, and then I took like a glass of water and I just sat down at the table for like two, three minutes, letting her go at her own speed because she did not need me, but it was like, wow, this is different, like, and I've got to acknowledge this, and this is what I want more and more. So, okay, my self-care literally started with you know, maybe sitting down and having a glass of water, or sometimes I would make tea and let her get ready, right? So, like that I didn't hover, and that's really how it starts. Then it was like, okay, maybe I'll go for like a five-minute walk. Yeah, it's much better after that. And then, you know, you're still doing more work and you're improving different aspects of health, and she's needing me less and less. And then, you know, that's when you can start doing more and more things. Two summers ago, I've started doing something that for the past like decade, every summer, I would just do it. One day I haven't gonna have enough time and I'm gonna do it. And there's this charity event where women swim across a nearby lake, it's 1.2 miles, it's a huge lake. And every year I would think about it. I'm like, I don't know how these women do it, but one year when I have enough time and I can focus on me like that, I'm gonna do it. And so two years ago, I did it, and I was just like, I should prep 40 days to prepare. I had never really swam in a lake. I'm a city girl, so I grew up in New York City. Lakes are not anything I'm familiar with. I hate the sensation of seaweed going across my body, and that's all this lake does. There's seaweed everywhere. You see like little fish, I get scared of the fish. I mean, it's it is so far out of my comfort zone, but I could only do that because I had this small little aspect of self-care that just grew as my daughter needed me less, then I could put more of that self-care into me. And then I'm also a much better mom. When I'm rested and I take care of myself, then patience increases. Oh my goodness, compassion increases. You know, like I could be the kind of mom that I wanted to be, so that's really the importance of self-care, and that's really the way that I started it was just like really small.

SPEAKER_00

And you visualize this big, scary goal.

SPEAKER_01

Oh, yes. I was like, one day I'm gonna do it, I'm gonna have enough time to be able to train and do all that. And yeah, I mean, it took 10 years, right? And I didn't get mad during those 10 years or like resentful, it still was like playful in my mind. Okay, one year, one year.

SPEAKER_00

And when the opportunity came, I was like, Oh, I'm doing it because you're ready, and so many of the things it all starts here before we ever take a stop.

Mindset For Bad Days

SPEAKER_01

I still don't know how I got across that lake because but it was just like I'm getting there, it was mentally like was not a I started taking swim lessons and like really doing I signed up to do it again this past year, and so I this is something now like I have a hobby. What do you know? But uh yeah, so it it the mind shift and the mindset is important for this whole entire journey. So just a parent who's having more bad days than good days with their child, regardless of where they are on the spectrum, whether it's level one or level three, it's totally irrelevant. There are gonna be bad days, and you just have to have that mindset of okay, this is a bad day. What am I doing to work on it to change it? And then, all right, we'll reset the next day, we try again, and you have to have that growth mindset, otherwise it becomes just too difficult, and nothing ever changes because you don't take any of that action.

SPEAKER_00

I could have taken out so many words of what you said, and that would still work for children with any diagnosis or you as a parent.

SPEAKER_01

Yeah, yeah.

SPEAKER_00

Because that wisdom works for anything in life.

SPEAKER_01

And it took me autism to really learn it though. So I can't say that that was a strong suit of mine before all this, but autism definitely taught me that. And that's why, again, like there's so many reasons why it's all autism.

SPEAKER_00

I don't see it as negative whatsoever now and changing that mindset was the biggest thing and is the biggest thing for anybody who comes across your content.

SPEAKER_01

Yeah, definitely. Just knowing that, okay, these different health issues, it's important to understand. And also knowing that it's not gonna change overnight, and you have to put in the work and you have to have that goal and that that dream and I don't know, that excitement and enjoying the entire journey. Like all of this, I never wanted to just be thinking about like, oh, okay, when this is all done, right? Because this is my daughter's childhood, this is my parenting journey, right? So it I've gotta make it mine somehow, enjoy it, otherwise, I'll just be filled with resentment. And that's not a good mom, not at all.

SPEAKER_00

It doesn't mean that every part of the journey has been joyful. No, I have so many. My youngest has gotten back into tantrums again, and I'm just like, obviously, I hate this. And I'll tell him that. I'm like, I am done with your tantrums. Do you remember when you didn't have them? Do you remember that we all enjoyed you more and wanted to be around you more? Like, can you stop? He's four and a half, he's also the youngest, so he's just trying to find his way to be heard more, and I'm just like, we can hear you just fine. You don't need to be loud and you don't need to go to answer.

SPEAKER_02

Right.

SPEAKER_00

But and I think that's with any child autism or not, that not everything has to be a joy.

Meltdown Rule Modeling

SPEAKER_01

No, because you need to have to be one. Yeah. So my daughter and I, we had a rule that both of us can't have a meltdown at the same time because we did it maybe once or twice. That is terrible. One of us has to be calm, cool, and collective at the same time, right? So there were times where I would have a meltdown where the stress would just be too much, and maybe I didn't sleep the night before. So I would have this meltdown, and then I would tell her, like, listen, this is my responsibility, right? I would model to her, like, it's okay to get upset, it's okay to go through those emotions, but then it's my responsibility to really come out on the other side of that, and also to not really take it out on her. But the flip side is also the same for her. When she has a meltdown, okay, you have a meltdown. Something is overwhelming. Oh, totally fine. You can have this meltdown. But remember, you want to recover yourself and you want to make sure what you do in a meltdown, you don't like regret, right? So it's just understanding that it's okay to be upset, but to move through it and then to come out on the other side somehow better than modeling, yeah, for sure. I have had meltdowns, we have that rule. We both cannot, and like we kind of laugh about it. Like, yeah, only one of us at a time, that's it.

SPEAKER_00

My husband and I try to have that rule too. Like, also only one of us can be completely overwhelmed at a time. Because if we both are, we're nothing's happening. Exactly.

SPEAKER_01

But it's important for kids to understand like, if she has a meltdown, I'm not gonna like she's not necessarily wrong for having the meltdown, right? Like, there was some reason, I'm sure, that she had the meltdown, right? So it's like, have the meltdown, but then what do we do about it? Okay, was it was it there was too much light? Was there too much? Noise, or you know, like would you give me a sign when you're starting to get overwhelmed a little bit earlier?

Overstimulation And Triggers

SPEAKER_00

You know, so there's all this partnership that can come out of that, and that's a huge deal, especially that you're giving her those tools because there are so many people who don't have autism, or even that don't understand those things, and they don't understand nobody's been there to guide them, is probably the better way to say this of when they're getting close to their limit and what exactly triggered them. Just being able to take the time to really reflect on that and really unpack that. Because for me, I am not autistic. I took the test in preparation for giving it to this client, and I realized, okay, yes, I definitely have ADHD, which already knew, but like seeing where it is and like everything was really interesting because she had both. So I wanted to pre-take the tests to see what they were like before I share them with her. But it's important to realize, like for me, I get overwhelmed if there's like a lot of noise. So tomorrow, today's my oldest birthday, and tomorrow he's going to a big arcade place, noisy lights, all that stuff. My husband's like, I'm taking care of him. Like, good. So I'll have the youngest three at home, and he'll take him and his friends, and they'll have a ball. And my husband won't be overstimulated. I will be, and it knocks me out for a couple hours. Knocks me out like uh, but like I'm very sensitive to noise and like all like overstimulation.

SPEAKER_01

Yeah, it's from your nervous system, and so you have to take care of it, otherwise, you can't then uh expect to do well in other things if your nervous system is like ah and I can think that for a while, but then yeah, but that's there's a bigger whammy after that.

Simple Nervous System Tools

SPEAKER_00

And this is the same with uh children with autism, but if they don't have the support that they need, it's a big deal. This is where it can feel like abuse, and this is where it can feel like their parents don't see them, and this is where they are then storing trauma in their bodies. Correct. Because they don't know how to feel safe because they feel like they are the problem and they start internalizing that. And for anybody who is older and realizing they have autism, I'm sure that you felt all of the things that I was saying. So know that you're seeing and know that you can work to undo a lot of those things that you are then reparenting yourself, and you can give yourself that space. And for anybody who feels like they get overstimulated on the daily, what's triggering you is really where you need to start. And then what can you do to reduce that trigger? Maybe you can't eliminate it because if you have children, you're not eliminating them. As much as you might want to run away screaming, I get you, especially during the summer. What can you do for your self-care? Because I really liked what you talked about. How when you were overstimulated by those two articles, what did you do? You shut down your shut everything down.

SPEAKER_01

Yep.

SPEAKER_00

You went for a walk.

SPEAKER_01

Yep.

SPEAKER_00

You were out in nature, you were out with the sunshine. You were grounding yourself while you were walking, you were letting nature do the things that we're supposed to be doing. But we're in such a go, go, go tech society that we aren't getting the vitamins that we need. No, windows aren't allowing the good or the bad that you v rays in. And we aren't feeling the wind, we aren't hearing nature. There's so many things that nature does to ground us and to reset us that we forget about. So you allowed that and you allowed your body to move. So somatically, that's so good for you. So many things that you did along with that, and your breathing became deeper, so you no longer had that side of shallow breathing. There's a lot that went in with this. So that is a good reminder of what do you need for self-care? It can be super simple, like just taking pauses during the day and focus on your breathing and let it get deeper and make sure that it's a really good breath where your diaphragm is actually moving.

SPEAKER_01

It should feel delicious. That's what I've learned with all the breathing now that I do. When you breathe, get that breath in, it feels so plain. Delicious is the only word I can use to describe it. When you breathe it in, and then there's just a little pause at the top, and then you really exhale and you tap into that parasympathetic. Ah, it's like, yes. Mini massages and stuff. So breathing, it sounds so basic and it's cheap, right? It's costing anything. No, self-care doesn't have to cost a lot.

SPEAKER_00

And we forget that it's it's not always massages, which I love massages, especially post-car accident. And during this time of year, my neck flares a plot. So I love massages. Massages are great, but sometimes it's where are you feeling tight? Can you give yourself a massage? Yeah. Can you breathe into that pressure?

SPEAKER_02

Yeah.

SPEAKER_00

Or if you are just so overstimulated, can you just I love texture? Like, I love those feely blankets and stuff like that. What's next to you? Or like, can you pay attention to what the clothes feel like on your body? What does your chair feel like? It doesn't need to cost things, and it doesn't need to take a lot of mental energy to do self-care. It can just be super like stupid simple.

SPEAKER_01

Yeah.

Somatic Stims And Masking

SPEAKER_00

Of just taking a minute.

SPEAKER_01

So you mentioned somatic before. There's something called havering, and something so simple as just rubbing your arm from their shoulder to the elbow in a downward motion is so calming and soothing. I do that often where it's just like, okay, and you're really helping your nervous system. And that's something that if someone with autism is doing masking, that's where you need to help restore because your nervous system is getting really tight and overwhelmed. And it's in that fight, fight, or freeze. And by masking, you're overcoming that by like fighting with your body. So when you're out of that situation, it is really important. And a great book to start with is The Body Keeps the Score. It's such an amazing book. And I think it gives really good insight into our nervous system and the traumas that we experience, and the fact that we do need to unwind from them. So, regardless of what someone would say, oh, that's not traumatic. But if it is for you and if it's stuck in your body, then that's what you want to focus on and really unravel it.

SPEAKER_00

And you know what's interesting is the somatic work my coach has had me do is very similar to some of the ticks that people with autism do to release what is stored in your body. So maybe they have some of the keys, and then we just don't realize it. Something that I've been thinking about since taking several of her courses and working one-on-one with her is just wow, the stuff that she's teaching me is the things that I've seen people who have autism do, the different ticks. And they're over there masking and trying to look quote unquote normal, when us quote unquote normal-ish, normal-ish people need to be doing some of the things that they're doing, like just humming. Right, humming scream for the various nerves. Yep.

SPEAKER_01

Sometimes you need a tap or crazy dancing, or hand flapping is a way of if you do any yoga, right? Hand flapping is something they do to calm the nervous system. But then again, that gets to the question of all right, so what is causing the issue of the nervous system? And if you can take that focus in a healthcare space and be like, all right, why is the nervous system getting overwhelmed? If you resolve that, then you don't have that barrier. And it's then the person can just be more of who they are, which is beautiful.

SPEAKER_00

Yeah. And then you can realize when you are starting to get overwhelmed, and then okay, how do I get out of this? Yeah. Maybe it's I need to do a job pivot because it's a really nasty cost that's happening with because I've uh going through the times when I've needed this, okay. That was one of them, or that long meeting that's just starting to trigger you. Maybe you must rub your hands up and down so it's underneath the desk, but you're rubbing your hands just towards your knee, like feeling the fabric. Do it slow enough that you're feeling the fabric, maybe to the point where it's slow enough that you can feel your fingerprints that are on the fabric, feel what what each little swirl feels like.

SPEAKER_01

Right. Yeah.

SPEAKER_00

Things that you can do that people wouldn't notice that can ease you somatically because we are going to be in situations that trigger us.

SPEAKER_01

It's life, unfortunately.

SPEAKER_00

It is life, and some things we can try and circumvent, but some things we can't.

SPEAKER_01

And we get triggered less when we do more of this self-care. That's the whole beauty of it. You don't have to stay at an elevated level, the more self-care, the more unwinding, the more somatic things. You know, there's TRE exercises. There's so much that can be done to really decrease that. And then you're going through life and you're like, wait a second, that used to really trigger me before, and now I don't even notice it. Wow. You know, like that's what's possible.

SPEAKER_00

Yeah. And it goes back to the modeling. When you are doing that for yourself, you can model it for your child. Yeah. And that makes the biggest difference. When I was learning these somatic things for my somatic coach, okay, child who's struggling right now, let's try this with you. Okay, that doesn't fit. Let's try this other tool that she showed me, type of thing. That is important, especially if you have a child who gets triggered easily.

SPEAKER_01

Yeah, it's very true.

SPEAKER_00

Okay, so what's the last tidbit? And then tell us where to find you. It's also in show notes.

SPEAKER_01

Yeah. So last tidbit, what do you want to talk about?

SPEAKER_00

What's the one thing that people most need to know about autism? I love the one that you're constantly correcting. That was just wow, I'm gonna be thinking about that for a long time.

SPEAKER_01

Another really important aspect to autism is that, and this is really more important when kids are at level three. So these are kids who are not talking, they might not be able to dress themselves or feed themselves, or you know, really anything along those lines. So those are the more severely autistic kids. They are learning and aware the whole time. So I've worked with so many parents whose kids have gotten better. And I absolutely love when the parents are like, when did my kid learn this? Because the assumption is if someone has autism that there's difficulties with learning, and maybe they're not paying attention to certain things, or maybe like family parties, because they don't connect in a certain way, they don't like enjoy family parties, things like that. And it is so not the case. I love when kids can start saying, Hey, I really liked when we went to Sesame Place. Can we do that again? And the parents are like, I didn't even think you enjoyed that. I didn't even think you would remember that. There's so much. There, there are kids that are fully learning a different language that their parents are speaking at home, and the parents aren't even aware that their child with autism is learning the second language that they're speaking at home because they think, oh, well, you know, they're having trouble with English. And it's so magical to see that a child with autism is learning, and that a lot of the issues are with expressing. So you don't want to exclude your child from doing certain things or exclude them from schools and stuff. If they're just learning the same thing over and over again, they're not growing. It's really just important to understand that aspect because when parents resolve a lot of these health issues and then kids really just block them, they don't have to catch up on as much as they thought if they've been learning all along.

SPEAKER_00

Wow. That I mean, we think of a couple in the last area where we lived, and a book that I've read. So that couple absolutely models that for their daughter. And they are like the golden example of what you should do. The way that they are with their daughter and within their marriage, too, because I know that it can absolutely put a string on a marriage, and she is level three, and then or maybe level two, because she does talk once in a while, and she has some sass when she talks too. Fun personality. Anyone with sass or feistiness, you're my person. And then um, it reminded me of a book that the character in the book, he had he swam in contaminated water, so he ended up getting encephalitis. So not the same thing, but there was a part in the book where he was saying that even though he was frozen in his own body, he remembered everything. Yes, and like the feeling of the sheets against the skin in the hospital bed, the people talking to him, what was on the TV, and he wished he could change it because he could not stand that channel. And he felt like he was in a cage, just like frozen cage, and the cage was his own body. And of course, it's not autism, but that totally I'm gonna have to reread the book. Yeah, I was thinking about it. Well, it can be hosting book club and have to choose the book. I'm gonna choose the book for a book club. So, anyway, those two thoughts were coming to me when you were talking about this, and it just brought it home more for me.

SPEAKER_01

That's presuming competence that we don't realize, presuming competence, like that couple you're talking about, even though their child is level two or level three, they're still speaking with her, probably at whatever age she is, uh age-appropriate language, and you know, reading books, age-appropriate books, that presuming competence is something that's super important because even someone with level one, right? If we see someone like rocking, and we're like, oh, they're not paying attention, right? We start to just say these things, and so regardless of level one, level two, level three, presuming competence is really important in autism.

SPEAKER_00

And you know what, it goes back to reading child books, like the first years type of child books, you know, when you're the parent and you're you're with young kid, those books, and how it even talks about don't use baby language with babies, like talk to them a couple years older than they are, and that gets them to where they need to be. Because if we're stuck talking to them using not real words for things, that how much worse it is for them cognitively than if we're actually saying the correct word and we're correcting them and teaching them how to self-correct. And that's with any kid that we should be doing that. And if we're learning that in those first years types of books, then wouldn't that still be true here?

SPEAKER_01

Why is it with autism that we can do the opposite of what we do for everybody else? Right? Like why is it okay to talk baby talk to someone who's 12 or 15 just because they have autism? It's not whatsoever. And that's the experience I've learned from working with so many different parents is that as you resolve these health issues, the child can really blossom and show you all they've learned. And so you have to presume that confidence, you have to do age-appropriate material because their learning is just a lot of times difficult in expressing it.

Resources And Science Literacy

SPEAKER_00

Yeah, I love that. Okay, so tell us where to find you. It sounds like you have tons of resources.

SPEAKER_01

Yeah. So let's make sure that this gets in the hands. So you can find me at navigatingautism.com. And so the autism is spelled AWE. And that's where we have a platform for parents who want to really understand the science. We've developed something called the autism matrix, and um, there's seven different categories, science related for parents to really drill down and make sure they're not missing anything for their child. And you know, how do you get good functional medicine care? And how do you know what different root causes there are? So that's the information that we have organized there. And we have health coaches to make sure all of the questions are answered, and we also put parents in small groups so that they can find support with each other with the guidance of the health coach. And you can also order functional medicine tests through the platform, and then we explain what the answers are so parents understand the why. Like, oh, okay, I understand this now, right? Let's work on resolving this. We accept flexible spending, so we try and make it as easy for parents as possible. It's$98, so we do try to make it as affordable as possible as well. So that's navigating autism.com. And then I've had a YouTube channel for over 10 years. So there's tons of science. Parents can go over there, and I started the channel as a way to take one scientific publication and teach it in, you know, like eight minutes or so. Like, how can I take the science which is cutting edge and really teach it to parents so they could have that trustworthy information? They could see the publication, they could click on the link and get to Bob Mad and all of that, so they knew that it was trustworthy, but so that they had cutting edge information. So there's lots of science on the navigating off to the MeTube channel.

SPEAKER_00

This is why we're gonna do the episode together of how people can read those articles and really grass because there are times, even me with my one class that I took where I could read it a couple of times, be like, okay, what chat GPT, what is that just say?

SPEAKER_01

Yeah.

SPEAKER_00

So yeah, it's and it is in a different language, it's a scientific language, and it's it's not fully English, let's be honest.

SPEAKER_01

And there's it's very dense, and that's a different language too.

SPEAKER_00

So it's yes, dense is the right word, and understanding that it matters how old it is, because you want to make sure that there, if there's something more current, you need to look at that, you need to compare them and go with whatever's more current and how big it was the study, and was it just one demographic or more?

SPEAKER_01

Yeah, yeah.

SPEAKER_00

There's so much to it.

SPEAKER_01

Funded the study, that's always something you look at as well.

SPEAKER_00

And who is putting together this research article? Is there a bias from that? Like, you need to check all the biases, and then you need to realize you have your own bias. Why are you researching hundreds of things?

SPEAKER_02

So there's so much.

Belief And Closing Thoughts

SPEAKER_00

So we will definitely have another episode just on this. So I'll vote for that one. And I'll make sure to link these together. If I don't and you catch me, whoever's listening to this, reach out to me and I'll fix it. So thank you for being on. This is so important. This was important for people who have autism, have a child with autism, but so much of what you said resonates, even if nobody has autism in your corner that you know of. Trust me, it's that you know of because there are people around you that you just don't realize it. Because self-care is important, getting up sleep is important, realizing that what you're diagnosed with now doesn't need to be a lifelong diagnosis. And that's not just for autism. Because when you're talking about that, I know I brought up somebody who used to take antidepressants and now she has no symptoms whatsoever. Yeah. And her she was saying she was shocked by it because her mom needs to be on the medicine that she was once on. It was one of those, this works for me. Hey, mommy, this will work for you type of situation. Right. And I know several other people with other mental health diagnoses that no longer have them. So it does make sense, but I don't know why. I've always just been in the camp of it's lifelong, but right, yeah.

SPEAKER_01

It makes sense that it's superpowers are lifelong. Yeah, whatever the superpowers are, you're not getting rid of. It's all the limitations. That's what's important to focus on.

SPEAKER_00

Yeah, and I think that is important for even physical health, like any aspect is remembering that we can overcome those things. And it's what we choose to believe, it's a lot of visualization, and all of it at the end of the day, really comes down to what's going on in between your ears. Because our mind is so much bigger than whether doctors tell us we can ever walk again or not.

SPEAKER_01

Right.

SPEAKER_00

So many other things because we've heard stories time and again, and we will continue to of doctors who have said you will never be able to do this again, or you will never be able to do this, period, if you've never done it for the first time. And people will go, no. Yeah. One of my cookleball partners, she told me that her daughter, who's autistic, was shot. I forget the story of why she was shot. It wasn't like an on purpose like it was like a gang member just went through and shot an area, and her daughter don't want to be there and got shot, if I remember the story right. But she was never supposed to walk again. In her autism, she's like, whatever, I'm doing this. And so she's like, my daughter. Autism is her superpower, and she was going on about it. It was really cute. But it's really what we choose to believe at the end of the day.

SPEAKER_01

It definitely is very true.

SPEAKER_00

Yeah. Thank you for this conversation. Thank you so much for listening to this episode. I hope that you found the answers that you needed and you had some amazing aha moments. Please share this episode with others because it helps us align ourselves and then better align the world so that we can seek the healing that we really are looking for. As part of the legal language, I am a certified life coach with a bachelor's in applied health. That is what I am leaning on for this. This is general advice. Take it as such. See you in the next episode.