Is Autism Treatable

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This is episode 1 98, 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. Theresa 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, [00:01:00] and I went, oh.

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 a DHD 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.

Theresa and then I'll let her start speaking. So I really liked this part, so I'm gonna 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 [00:02:00] 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. Yeah.

A diagnosis can be made reliably now at 18 months.

That's amazing.

Yeah.

Okay, let me finish reading 'cause this is 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 [00:03:00] 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 IT platform that organizes the entire world 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 reading that and through us emailing back and forth, I felt this kid a spirit.

So I'm so excited that you're here and I've been looking forward to this.

Awesome. Me too.

And I love stories like this. While I already feel myself getting emotional, I love stories like this because the people [00:04:00] 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.

Mm-hmm. They're

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 true. 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. For going through this because it's obvious that this was a difficult [00:05:00] journey and that you are educating professionals who work in this realm.

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.

What is,

so many questions I'll ask at once. Let's start with this one. What is your biggest thing that you are having [00:06:00] to correct? The biggest misnomer that you're like, no, that's not right, that's out there.

I would say the biggest one is that autism is lifelong. 'cause 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 [00:07:00] started talking about kids, which we hadn't done really when we were working together he explained to me like, yeah, my son, he was autistic and you know, my wife did so much and he is not on the spectrum anymore.

And I thought, oh. I can't believe I'm reading a scientific publication and that 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 [00:08:00] 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.

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 [00:09:00] grow and perform.

It starts to atrophy. You've seen these articles. I've heard that. Yes. Yes. I've heard that. Yep. And now science is far enough along that's telling us, no, that's not true. That's not true. Correct. Yes. Yes. So from that standpoint, yes.

That our brain can continue forming 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.

Mm-hmm.

I would be shocked if somebody told me that Albert Einstein was not autistic.

So it's just, it's mind boggling that,

but so, the thing, there's lots of things to unpack here, but the thing [00:10:00] is, losing an autism diagnosis doesn't mean you lose who you are,

right?

You lose 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, and you know, you can't take an MRI and, you know, spot on the brain, okay? That person's autistic right there. There's nothing like that. It's based upon behaviors, right? So it's repetitive behaviors. So, you know, maybe stemming, 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.

They'd still have the high iq. [00:11:00] They would just, not need to mask and do all these other things, they would be able to be more at home within themselves.

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 you're going along with, you know, superpowers, right?

But more can hold you'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? [00:12:00] This is not what the doctor who diagnosed my daughter.

What do you mean this is not 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 just. Accepted as what autism was without questioning it.

And so I was like, you know what, I'm going to email the author. So I emailed the reporter who wrote these two stories, and him and I started corresponding, and I asked him, okay, you know, where did he do his research? Right? 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 [00:13:00] an a journalist who put in an hour research, whereas I'm putting in hundreds of hours of research, right?

Because now I wanna know everything and it's not the full story. So that really is that first step of.

What really is autism, and that's also why I spell it A-W-E-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 was 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? [00:14:00] Right? What is really the underlining 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 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 stomach ache 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 wanna do X, Y, Z. They still have dreams. I wanna get married, I wanna have an apartment.

I wanna have friends. But there's always this, this element [00:15:00] 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 daughters. Fabulous in math. Right. And too, but it, it was really just understanding how she will continue to dream regardless of how tough it is each day.

And that's what I've learned with kids with autism.

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 [00:16:00] question where I know the answer because I've already studied this, my little bit of study compared to your, because you needed it.

I didn't.

I needed to in that way. Yeah. Yes, yes,

So for me, when I was studying about it, this is a course that I took from a therapist who is autistic mm-hmm. Which was 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.

So, what are some of the symptoms that people with autism can also have? So you talked about stomach upset. Yes. 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.

And that's the important aspect, right? So stomach upset. There's usually diarrhea, constipation, or alternating diarrhea, [00:17:00] constipation. There are 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 twenties and thirties 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, getting optimal health. If you can address those medical issues, then it frees up the person to really be more of who they are.

And that's definitely a huge misunderstanding with [00:18:00] 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.

Just anybody who's starting to research her, just stop and just listen to her. It'll be in the show notes, like just, if you're a DHD like me, just be here. 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 [00:19:00] 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 in 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 were really upset and you're trying to hold in all your emotions.

What did that do to your GI tract? Would that do to your skin? Yes, exactly. So hopefully that helps give you guys who don't understand as well, a better sense of this is what their lived experiences, 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, [00:20:00] 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 to you, that's heartbreaking and it's so hard whether or not you 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. Theresa. 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 [00:21:00] 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. 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 in different things. Oh yeah,

most definitely. We try

We try to full most definitely to come across as our full authentic selves, but it's, we don't always end up in situations where we're safe and we feel safe enough to do so.

Right. So that is where the masks come in.

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

Oh, perfect.

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 and [00:22:00] let's say they're trying not to be OCD on certain 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 and the burnout comes from. Where, okay, I'm trying not to do something that I wanna 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, or whatnot.

So there, 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, alright, do they have optimal health? We know the [00:23:00] gut.

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 supplementation of vitamin D in our food their levels of vitamin D are gonna be around like 19. And so really anything 25 or [00:24:00] 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 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. [00:25:00] 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 started 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's a parent that

makes sense.

Exact. Yes. And why would a case doctor 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 hate daylight savings. It's awful for me. And I'm an adult. Yeah. My kids are trying the meltdowns from it. [00:26:00] And I feel the same way. 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? 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 it 'cause 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 [00:27:00] 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 constipated.

Like how is that fair? It's not,

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. Yes. OT comorbidities. Yep. A DHD. Those are the really common too, that you'll have anxiety. And it's the same with a DHD. If you have a DHD it can be common to have depression or OCD or anxiety.

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's either drink more water or get more sleep. [00:28:00] Like there's more to it than that. But I feel like those are my go-to, especially with my children, is like, oh, you're emotional.

Which one do you really need? Or you need a snack. But it's true because when we boil everything down to everything in life are you getting enough sleep and is it quality sleep?

Yeah. 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,

you're relaxed, but there's so many important biological processes going on all 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. That's the, and rem

sleep is when your eyes are going back and

Yeah. Right. So you have rem sleep, you have light sleep, and you [00:29:00] 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, squashing 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, and 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.

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

I came close many times. Oh, I'm sure. So please do [00:30:00] 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, I don't know what to do to this.

I read the science, and this was before I talked to 'em. 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, 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 wanna know, he published these two articles right on, on Yahoo. That's, that's a, a large publication, right? Like that's reaching millions. I wanna 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 [00:31:00] 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 because you can't get shifted like that.

So let's stop there for a second and can you please come on another time? Sure. And we'll link these together and talk about how to research. Okay. Yeah. 'cause 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 'cause you don't read 'em 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 compared to you. But I really want to give everyone that skillset because it is amazing to have that. And we spend so much time in society just reading the [00:32:00] headlines.

Yeah.

And when we actually read the article, it has nothing to do with the headline.

Yeah. And that's just news. So many news that's not reading. Research articles in the right place.

Some We're skipping it. Research on TikTok. Yeah. Oh yeah. You can't press ai. 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.

Mm-hmm. Right?

Going to chat GPT or going. To a news [00:33:00] article. And unfortunately, this was how many years ago that you read this? This was, this has got worse,

like 10, 12 years ago. Oh, it definitely got work.

Yeah. 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.

Mm-hmm.

Because I'm friends with her, I'm like, I don't really wanna cross that boundary. Yeah. But, there's so much to be said on. Yeah. And the hard PA part, and we've all had to pay attention to this with COVID, is that science is evolving. Very true. So the things that [00:34:00] 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.

Mm-hmm. There's so much there to

Yeah. Deal

So we'll 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.

And it took me a long time to, 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 gotta take care of yourself.

You know, and they, they've said, I've my health, you know, my wife had breast [00:35:00] cancer and you know, I've had now diabetes. And so there was that guidance early on. And I remember talking to, 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 'cause 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 head really quickly and so it's like, no, I'm not 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 wanna do it for her and she's just not gonna try. So like, okay, what do I do?

What do I do? [00:36:00] 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. 'cause she did not need me. But it was like, whoa, this is different. Like, and I've gotta 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 I was like, okay, maybe I'll go for like a five minute walk. Yeah. I feel 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 needed 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'm gonna have enough time and I'm going to do it. [00:37:00] 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 preface I 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 and 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 outta 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 [00:38:00] much better mom when I'm rested and I take care of myself and, 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.

And you visualized this big, scary goal.

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. 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. When the opportunity came, I was like, oh, yes,

I'm doing it because you're ready.

And so many of the things it all starts here. Before we ever take a step.

I still don't know how I got across that lake because, we fish, but it was just like, I'm getting there. It was mentally like, I was not a, [00:39:00] I've 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 now? But, 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.

They're 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 and we try again. And you have to have that growth mindset. Otherwise it becomes just too difficult and nothing ever changes.

' cause you don't take any of that action.

I could have taken out so many words of what you said and that [00:40:00] would still work for children with any diagnosis or you as a parent.

Yeah. Yeah.

Because that wisdom works for anything in life.

Yeah, it does. 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 autism. I don't see it as negative whatsoever now before.

And I think changing that mindset was the biggest thing.

And is the biggest thing for anybody who comes across your content?

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 [00:41:00] all of this, I never wanted. To just be thinking about like, 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 and enjoy it.

Otherwise I'll just be filled with resentment. And that's not a good mom.

Not at

all.

It doesn't mean that every part of the journey has been joyful. No. So my youngest has gotten back into tantrums again, and I'm just like, seriously, I hate this. And I'll tell 'em 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 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 throw hands.

Right. But, and I think that's with any child autism or [00:42:00] not, that not everything has to be a joy.

No. 'cause you

need to know, and you don't have to be perfect. 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 horrible. 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 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 [00:43:00] 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.

So modeling, yeah, for sure. I have had meltdowns. We have that rule. We both cannot. And like we kind of laugh about it. I'm like, yeah, only one of us at a time. That's it.

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

Exactly. Not a good family experience, especially someone, something big is happening. 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 [00:44:00] much noise? You know, like, w would you give me a sign when you're starting to get overwhelmed a little bit earlier?

You know, so there, 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.

Right. And why 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 a DHD, which I 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 [00:45:00] test to see what they were like before I, shared 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 RK place, noisy lights, all that stuff.

And my husband's like, I'm taking care of him. Like, good, awesome. Love

me.

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 will be overstimulated. I will be, and it knocks me out for a couple hours,

right.

Knocks me out, like, ugh.

But like, I am very sensitive to noise and like, all like overstimulation, well, nervous system.

Yeah. That's your nervous system and so you have to take care of it. Otherwise you can't then expect to do well in other things. If your nervous system is like, ah oh, I can, I can take it for a while,

but then Yeah, but that there's a bigger whammy

after that.

Yeah. That's not, and this is the same with children with autism, but if they [00:46:00] don't have the support that they need, it's a big deal. And 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. 'cause 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 seen 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 right? 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 wanna run away screaming.

I [00:47:00] 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 Mm. What did you do?

You

shut down your computer. I shut everything down.

Yep.

You went for a walk.

Yep.

You were out in nature.

You were out

with the sunshine. Yeah. You were grounding yourself while you were walking. You are letting nature do the things that we're supposed to be doing. Right? But we're in such a go, go, go tech society that we aren't getting the vitamins that we need. No, not at all. 'cause windows aren't allowing the good or the bad UV raisin.

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. Yes. There's so many things that you did along with that.

And your breathing became deeper, so you no longer had that [00:48:00] fight or, yeah, probably like 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.

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 clean, delicious is the only word I can use to describe it. I love 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 not costing anything. No, self-care doesn't have to cost a lot,

and we forget that it's, it's not always massages, which, no, it's not. I love massages, especially post car accident. [00:49:00] And during this time of year, my neck floors a lot, so I love massages.

Massages are great. They're nothing on, but sometimes it's

Where are you feeling tight? Can you give yourself a massage? Yeah. Mm-hmm. Can you breathe into that pressure? 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.

Yeah.

Of just taking a minute.

So you mentioned somatic before.

There's something called haing and something so simple as just rubbing your arm from their shoulder to the elbow in a doward 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, [00:50:00] 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 wanna focus on and really unravel it.

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 [00:51:00] they have some of the keys, 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. Humming is great for the vagus nerve. Yep. 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, alright, so what is causing the issue of the nervous system? And if you can take that focus in a healthcare space and be like, [00:52:00] alright, why is the nervous system getting overwhelmed? If you resolve that, then you don't have that barrier.

And then the person can just be more of who they are, which is beautiful.

Yeah. And then you can realize when you are starting to get overwhelmed and then, okay, how do I get out of this? Right. That doesn't happen again.

Yeah.

Maybe it's, I need to do a job pivot 'cause it's a really nasty correct process that's happening with, because I've going through the times when I've needed this.

Okay. That was one of 'em. Or that long meeting that's just starting to trigger you. Maybe you just 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 mm-hmm.

That are on the fabric. Feel what, what each little swirl feels like.

Right? Yep.

Things that you can do that people wouldn't notice that can ease [00:53:00] you somatically, because we are going to be in situations that trigger us.

Mm-hmm.

It's life, unfortunately. It is

life and.

Some things we can try and circumvent, but some things we can't.

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.

Yeah. And it goes back to the modeling. When you are doing that for yourself, you can model it for your child. And that makes the biggest difference.

When I was learning these somatic things from 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 [00:54:00] she showed me. Type of thing. And that is important, especially if you have a child who gets triggered easily.

Yeah, it's very true.

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

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

What's the one thing that people most need to know about autism? I love the one that you're constantly connecting.

That was just, wow, I'm gonna be thinking about that for a long time.

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 address 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 [00:55:00] 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 'cause 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.

'cause they think, oh, well, you know, they're having trouble with English. And it's so magical to see [00:56:00] 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 blossom. They don't have to catch up on as much as they thought if they've been learning all along.

Wow. That made me 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.

Knowing that

they are with their daughter and within their marriage too, because I know that can.

[00:57:00] Absolutely put a strain on a marriage and she is level three. And then or maybe level two. 'cause 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 'cause 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 aism, but that. Totally. I'm gonna have to reread the book. And I was thinking, well it can be because I in book club and have to choose the book. I'm gonna choose the book for book club.

So anyway, those two thoughts were [00:58:00] coming to me when you were talking about this and it just brought it home more for me.

That And so

pre

presuming

confidence 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.

And age appropriate language. And, you know, reading books, age appropriate books, that presuming competence is something that's super important. 'cause even someone with level one, right? If we see someone like rocking and, 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.

And you know what? It goes back to reading child books like the first years type of child books, mm-hmm. When you're with the parent, and you're right with young kid, those books and how it even talks about [00:59:00] 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. Yeah. Because if we're stuck talking to them using not real words for things

mm-hmm. But

How much worse it is for them cognitively then 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. We're learning that in those first years types of books, then yes. Wouldn't that still be true here?

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 [01:00:00] child can really blossom and show you all they've learned and so you have to presume that competence. You have to, do age appropriate material.

'cause they're learning. It's just a lot of times difficult in expressing it.

Yeah. I love that.

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

So let's make sure that

this gets in the hands

So you can find me@navigatingautism.com. And so the autism is spelled a WE 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 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 [01:01:00] 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, 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 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 pub mat and all of that. So they knew that it was trustworthy, [01:02:00] but so that they had cutting edge information. So there's lots of science on the navigating onto to the YouTube channel.

See, this is why we're gonna do the episode together of how people can read those articles and really grasp

because there are times, even me, with my one class that I took where I could read it a couple times and be like, okay, what chat? GPT, what did that just say? Yeah. So yeah, it's, and it is in a different language. It's a scientific language. Yeah. And it's, it's not fully English, let's be honest.

Yep.

There's dense, it's very dense

And that's a different language too. So it, yes, dense is the right word. And understanding that it matters how old it is because you wanna make sure that there, if there's something more current, you need to look at that. Correct. You need to compare them and go with whatever's more current.

And how big is, was the study and was it just one [01:03:00] demographic or more?

Yeah, there's

so much to it.

And who funded the study? That's always something you look at as well. What biases there?

Yes. Yeah. And who is putting together this research article? Is there a bias from that? Like you need to check all of the biases and then you need to realize you have your own bias.

Why are you researching? Right?

Hundred percent. So there's so much

So we'll definitely have another episode just on this, so Awesome. I'll go for that one for sure. 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 enough sleep is important. Mm-hmm. And realizing that what you're diagnosed with now [01:04:00] 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 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.

Yeah.

And I know several other people with other mental health diagnosis that no longer have 'em, 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.

Yep.

It makes sense that it, the

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.

Yeah. And I think that is important for even physical health, like any aspect is remembering that we can overcome those things and [01:05:00] it's what we choose to believe.

It's a lot of visualization. Yes. And all of it, at the end of the day really comes down to what's going on in between your ears. Mm-hmm. Because our mind is so much bigger than whether doctors tell us we can ever walk again or not.

Right.

So many other things because we've heard stories time and again, and we will continue to of doctors who have said, you'll never be able to do this again.

Mm-hmm. Or you'll never

be able to do this period if you've never done it for the first time. And people will go, no.

Yep.

One of my pickleball 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 happened 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. Yeah. So she's like seeing my [01:06:00] daughter's autism is her superpower as she was going on about it. It was really cute. But it's really what we choose to believe. Yeah. At the end of the day.

It definitely is.

Very true.

Yeah. Oh, 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.