Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide. Hosted by Tony Mantor. Broadcasting from the heart of Music City, USA, Nashville, Tennessee. Join us as our guests share their raw, powerful stories. Some will spark laughter, others will move you to tears. These real life journeys inspire, connect and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness, unwavering acceptance and profound understanding of autism and mental health. Tune in, be inspired, and join us in transforming the world one story at a time. Hi, I'm Tony Mantor. Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide. Joining us today is Teresa Lyons, MS, MS, PhD, and a Yale University-trained scientist, medical strategist and autism parent. She will share her daughter's diagnosis of autism, which ignited a passionate commitment to empowering families worldwide. We will discuss her platform, Navigating Autism, that's A-W-E-T-I-S-M, as well as her acclaimed book, The Lions Report 2020, Autism and Functional Medicine Doctors. As a beacon of hope and expertise. She reminds us that autism is not a verdict, but an opportunity for healing and growth driven by science, intuition, and unwavering advocacy. It's a pleasure to have her here. So before we dive into our episode, we'll be back with an uninterrupted show right after a word from our sponsors. Thanks for coming on. Thank you. Thank you for having me. I appreciate doing this. Oh, it's my pleasure. Great to have you here. It's my understanding your journey with autism started when your daughter was diagnosed autistic. Yes. Can you give us a little background and how your journey developed over time once she was diagnosed? Sure. So let's see. My daughter was about three and a half years old when she was diagnosed. She was on the more profound side of autism, so it wasn't necessarily a surprise. But with an autism diagnosis, there's no test. There's no blood test. There's no MRI. There's no piece of paper based upon some like cellular expression in her body that it's autism. So, you know, we went through hearing tests and we did so much just to rule out anything else. And then it was like, OK, there's really nothing else left. So we got the diagnosis of autism from a developmental pediatrician. Those are very hard to get appointments with. I think there's only about 800 of them in the United States. So wait lists are long and everything. And really getting the diagnosis was just the beginning. I have a PhD in chemistry from Yale. I worked in the pharmaceutical industry. I worked in R&D. I worked as a medical strategist. So I had so much background that then when we were given this diagnosis, I'm like, okay, what's next? And that's really when there wasn't a plan. There really wasn't a definitive answer to that. And that was really my starting point for everything I do now. That makes total sense. How long ago was that? That was over 10 years ago. Wow, okay. If it was 10 years ago, that's when not a lot was known about autism. It has progressed from the 90s to now, but you're right in the middle when it was starting to progress. So when we think about it, 10 years ago, autism was really still fairly unknown to most of the population. Yeah. So how did you cope with that? I mean, you get this autistic diagnosis. Not very many people know about it. They don't know how to handle it. They don't know anything about it. So how did you deal with that? So that's where my training in pharma really paid off. So I applied everything I learned in grad school and working in the pharmaceutical industry. And I went to PubMed for the answers. So I knew how to get to the cutting edge of a therapeutic area. In this case, autism for my daughter. I was doing it professionally in other therapeutic areas. So working on different projects, they call it key opinion leaders. So those are the doctors in the field that are doing the research that are really driving what the gold standard of care is based on clinical trials. So I understood all the ins and outs. And I used to pop some popcorn. I get my daughter to bed. And then for like fun, quote unquote fun, I would just go to PubMed because these were all skills that I had. So I was like, all right, let me familiarize myself with who's doing the research, what the doctors are saying. And the information that's in PubMed is typically 30 years ahead of what's being practiced in mainstream medicine. So that's how long it takes to go from a discovery to mainstream practice. Okay, that's very interesting to know. Now, what were some of the obstacles that you faced during this time? Oh my goodness, there were a lot. Oh, I'm sure you can go on and on with all the obstacles, but what sticks out of your mind? What just stands out that you had to go through? The first thing that comes to mind is me and my thoughts and my beliefs and not really understanding how much of an influence I could have really on the outcome. I would just listen to, I remember reading this article on Yahoo. There were two articles about autism and it was pretty soon after my daughter's diagnosis. And it was saying about how autism is this lifelong diagnosis. And it was very bleak, these two articles and it's on Yahoo, right? So I'm like, oh my goodness. You know, like I'm reading PubMed and I'm reading scientific articles that are saying, you know, 10% of those diagnosed with autism lose the diagnosis. And, you know, there are many different publications. Nowadays, the latest research shows that 37% of kids diagnosed with autism lose the diagnosis, meaning they regain their health, they catch up academically, socially, everything like that. So I was conflicted, right? And I was just like, okay, I know what PubMed is saying. That's the real science. That is what I should put weight on. But then I'm reading this article in Yahoo, and it seems the way it's written was just so convincing. And there were two of these articles. So then I ended up contacting the author and asking him about, you know, the research he did. And he confessed to me. He's like, listen, I had a really tight deadline. I put maybe an hour or two of research into those both articles. I just like that was me I was the obstacle because I allowed myself to be swayed by a piece of information that wasn really accurate So it a long journey And I feel like it something that it doesn just involve the child There's so much growth with the parent. And so for me, I would say I was the biggest obstacle at first, for sure. Yeah, I get that completely. A lot of people, they just do not realize when a child is diagnosed autistic. It is not just that one child. It is not just the parents. It creates a community. Parents, grandparents, brothers, sisters, doctors, everybody that's in that community can come in contact with a person that's autistic. It can create a huge circle of people, and most people do not realize that. Now, with all the people that you had to work around, kind of a maze of people, some thought they knew more about it than you did, some didn't. How did you deal with that? Well, that was definitely something that I learned where it was, I need to be careful as to where I take information in from and, you know, how valuable it is, because that really, really upset me in that moment. And so if I had listened to the Yahoo articles, rather than, you know, asking him questions, reaching out to the author and really trying to understand where he's getting this information from, I might be in an entirely different place now. So it's really important when you're talking to someone who's giving you maybe advice to understand how often they keep up to date with the literature. How current are they? There's very well-meaning people, but it's really the information that makes a difference because there is so much research going on and it takes so much time. So, you know, 30 years, right? If I had waited 30 years, my daughter would be mid-adult. So it's important to seek out information, but to really have that barometer within yourself and to know yourself well enough to say, okay, do I trust this? Does this make sense? Is there a consensus here? And what does my intuition say? So as parents, a lot of times we know there's something wrong with our child. And when we bring it up to, you know, doctor's appointments or family and friend, a lot of times, well, meaning they say, oh, you know, kids development developed differently. And but that's where parents learn to negate their intuition. So many parents have that inner knowing of what to do, and then it just gets negated. So really cultivating that. And when you hear that, if someone gives you advice or opinion or fact and your intuition, your gut is saying, no, this is this is not true for my child. You've got to follow your gut for sure. Yes, I agree wholeheartedly. Parents have to trust themselves because they know their kids better than most people. One of the things that I've found and see consistently is a lot of people think they know about autism that really don't know about autism. They give their opinions, but they have not done any research to validate their opinions. With that said, when a parent initially finds that their son or daughter is autistic, it's the big unknown. They're trying to figure this out. They're trying to find advice. There's just so many unanswered questions. Now that you've been through this, you've lived through it, you've assembled all this knowledge, what is the pathway that you think best fits people that are trying to figure this all out? so really taking a pause and coming to terms with it yourself before trying to take action because when someone tries to take action when they're in panic mode right like oh my gosh okay this this just happened we got the autism diagnosis okay i'm just gonna try and do everything possible right like you're taking action from a very frantic um mindset it's really hard to be successful in anything when you're taking action in that way, right? You're going to exhaust yourself. You're going to feel like, oh my gosh, I'm trying so many things and it's not working. Really just having that pause to gather yourself and say, okay, who do I want to tell first, right? Because when you start telling people, then lots of opinions start coming flooded at you. So you have to be prepared. So it's really getting yourself set and then maybe telling one or two people externally from the immediate family. And then coming up with ideas and having people, you always want to have someone, can I bounce ideas off you? Don't tell me like what your opinion is, but sometimes I have thoughts and I just want to talk it out. So having different people like that in your life and letting them know what it is they can do to help you. Sometimes it's like, you just need to go out for like a coffee or a walk and not talk about autism. So you might need someone to just say, hey, listen, let's go get coffee. But listen, I don't want to talk about autism whatsoever. Let me just have this break in my mind. And it's okay to do that. A lot of times parents feel like I have to take action immediately. I have to do everything. And if I'm not doing something, then I'm not being a good parent to my child. And you definitely want to take action, but you want to take action from a very logical standpoint and being very strategic about it. So that really is that first step in the path where it's like, okay, let the diagnosis, let that kind of roll over you and understand, okay, things are going to be different. It doesn't have to be necessarily a negative experience. This doesn't have to be a terrible childhood for my child, but let me get myself straight. And that looks different for each parent. And then let me start recruiting a team. Let me start getting family members on board and letting people know how it is they can help me and what it is maybe that is not helpful. Yeah, great advice. Now, ultimately, you wrote a book later on. Well, many steps in between. Okay, let's go down that journey. What were the steps that led to this book? Okay, so I tend to be a very organized person. And when I do something, I do it very well. And so I was able to start to focus on my daughter's health and understand PubMed and understand the research and start to put together a healthcare team for her of doctors who were doing clinical trials so I could get the latest information. And they were the ones who suggested I start a blog or write a book because I would come very prepared to the appointments. We would have an agenda. And I wasn't really there as mom. I was really more focused in, okay, let's talk about what's on the agenda. What are the best things to do for my daughter? And so it was really the doctor's idea that I start something. I thought it was nuts. I was just like, what? Like, I'm focused on my daughter. I'm not, that's my only focus. So did it start out with autism? That's A-W-E-tism? Yeah, well, yes. My blog and the book, it's all based upon navigating autism, but I spell it A-W-E-T-I-S-M because it took well I just say it took a few years for me to see autism in a very beneficial and positive light Because when my daughter was first diagnosed I hated that word autism It meant like everything was going to be more difficult And you know, like just everything negative associated with it was carrying that word. So I knew myself, I need to change how I think about autism. So then I was able to start to look as my daughter started getting healthier and doing different things. Then I could see, oh my goodness, wow, she had a headache and she had this and she had all of these health issues. And yet she was still getting up every day and trying her best and going to school and she wants to learn. So like that was the autism where I could see her strength and her determination. And that's really when autism shifted for me and became a different experience for us, for sure. Yeah, that makes sense. So all this happened, but the blog came first. And then it was the blog. Yeah. And then I started working with parents one on one and they would ask me really to help navigate the science for them. So it was about, OK, let's get a good health care team together. And they were in different parts of the world. Right. So I had to really come up to speed with who's local to them, who's good. If I was there, what would I have done? So I started making this directory of doctors who were really good in focusing on autism and also functional medicine, which means really getting at the root cause. So when you go into a doctor and you say, okay, my child is laughing uncontrollably, right? A functional medicine doctor will say, I wonder why? Let's figure that out. Whereas maybe a conventional medicine doctor might say, well, that's just part of autism, right? So I had this directory and that's really what I published in the book so that other parents could have access to that information and get to quality health care much sooner. So the autism book, along with your autism blog, that really changed a lot of things, not only for the parents that were learning from it. I'm sure that it changed your life as well. Yep. So how did you see these changes? You went from an autism mom putting all these things together to becoming an autism advocate. This helping so many people around the world. Well, it definitely wasn't planned at all, not whatsoever. And with many things in life, it was just one little step and then take the next step. And really, as my daughter got healthier and healthier, she needed me less. I had the choice of, okay, let's just really forget about autism and let me go on with my life and I'll go back and get a job and stuff like that. But this has really become more of my dharma, where it's like, I have this knowledge, I have the ability to communicate it. Am I okay with not sharing that? And I wasn't. I'm a shy person. I'm not someone who's on social media to, you know, get famous and all that kind of stuff. It was more if I was a parent who just had a child who got diagnosed, I would want me to teach me the science. So I was not OK with just leaving and having all that information that could help so many people and just not doing it. Yeah. And I think that's just awesome. So once you got that all streamlined, it was up and running. Everything was going smooth. Then came the book. Yeah, they came the book as I started to work with more and more parents. I started having a wait list. So this is really where I was like, okay, how can I help more people? Right. So it was, let me take this information of body doctors. Let me explain what functional medicine is. Functional medicine is typically not covered by insurance. You have to pay out of pocket. It took me a while to come to terms with that. When I was faced with these decisions, I was like, oh my goodness, I have to pay. Why can't I just use insurance? So it took me time to understand that part of U.S. healthcare. So it was really, how can I help parents make those decisions faster? Whether it was a yes or a no, how can I help them make those decisions faster? And so that's really what the book was about, explaining functional medicine, explaining why it can help and it's needed in certain regards. And then really connecting parents to quality doctors, because there are a lot of doctors out there who might say they know what they're doing, but they really don't. And if you're spending $200, $500, $1,000, you really want to go to a good doctor. So it was really just helping parents figure that out, who's good for them. Yeah, that's a lot of information. Now, how big is the book and how much does it cover? So the book, it was published in 2020. There's an update coming out in 2026. The book explains the research in autism, letting parents know how an autism diagnosis is not lifelong. And listing out the different publications, scientific publications over the decades that give that information, it used to be called an optimal outcome when a child has a lost autism diagnosis and continues on in their life with school and not needing supports or anything like that. And now the new term in the scientific literature is non-pervasive autism. So even just what scientists and doctors, how do you label this is changing as more and more kids don't retain that diagnosis for life. So it explains that because that's new for many parents where they're saying like, really, I didn't know autism wasn't lifelong and listing out the scientific publications so that they can see, yes, this has been studied for decades and it has been known. And then going over different science that is important to understand at the beginning, we also have something called the navigating autism matrix. So autism is so complex, right? You and I have been talking mainly about healthcare, but we haven't touched upon diet. We haven't touched upon the supplements or prescriptions, probiotics, mindset. We talked a little bit. My mindset was something I had to improve quite a bit, celebrating success and school. So all of this has to be going on all at once. So as I worked with parents, it was like, how do we organize everything that we're doing? How do we keep track to make sure we're hitting all those different categories? It's really just systematizing everything that has to go on, which is a lot. It sure is. And unfortunately, we just don't have the time to address every single thing that we could talk about on this podcast. I know. Yeah, it does. There is one thing I think is very interesting that you said that I think we need to just discuss a bit. You said autism isn't a lifelong situation, but that's just a small percentage of all people. If they're not lifelong diagnosed, basically what that means, they would be out there living. What everyone would perceive is your typical, quote, normal life. Yeah, I don't like using the word normal. And normal is not anything I aspire to whatsoever. Yeah, I agree. I had a person tell me one time that just because he is a little different doesn't mean that's not his normal. And he's 100% correct. I think that a great thing to put out there that every person normal can be different Yeah But it their normal Right So I just wanted to make sure that what we were talking about that we were on the same page Yeah, it's not 100% at all. So the latest research showed 37%. And it's important, though, for parents to really understand the health issues of the child, right? Yeah, absolutely. Because there's always things that can be improved in health that maybe doesn't push the needle to 37%. But maybe you take a child who wasn't able to sleep during the night, who sleeps during the night, right? By analyzing different things. That is worth it. So there's a lot of different things about health that kind of gets lumped into, oh, that's just autism. You're going to have OCD. You're going to have anxiety. And it's not true. So addressing those things, if the autism is a diagnosis that remains, there's absolutely nothing wrong with that. But you want to make sure your child gets quality health care because many times when you have an autism diagnosis, you are given substandard health care, which is totally unacceptable. Absolutely. In your blog and in your book, you also get into other things like diet and everyday things. Correct. Yeah. All of it has to be addressed, but not necessarily all at the same time. It's about building synergy, right? So like the sleep example I just gave, if a child goes from not sleeping to sleeping, which also means a parent goes from not sleeping to sleeping, right? So much has changed. And the research shows that when a child with autism does not get quality sleep at night, the autism symptoms increase during the day, right? So sleep actually influences the severity of autism. So just having that sleep can then allow someone to, you know, be more curious in school and naturally look at things in life differently. So that's really the important aspect to understand about all the science. Yeah. Now, we've covered a lot of things. we've missed a lot of things. What do you think is really important that the listeners hear about what you've gone through, what you've learned, and how you're trying to help them to better understand their autistic children? I think it's important for parents to trust their intuition because most parents know that there's some kind of health issue that's holding their child back because they can see their child like either looking at sports or looking at the family playing board games or maybe even trying to do different things or just not feeling comfortable in their own skin, right? But the parent has that gut intuition. And it's so hard sometimes to go against what is in social media and mainstream, but really to listen to that intuitive voice, that gut that's telling them, go this way, go this way. No, there's something we can do. To listen to that, I think is really that starting point. And that's something I really hope to instill in parents because I know I didn't listen to mine. And once I started, just so much opened up. And I speak to so many parents who say, I knew this X was wrong and I just didn't listen to myself. So that's really that important aspect that I want parents to understand. And also to really understand autism from that AWE sense of things may not be all rosy and there may be some real challenges in your child's life. But if you can look to see how determined and just how persistent their child is, it can really shift a lot. Yeah. I've had many autistic people on my podcast. The one thing many of them have in common is they say autism is their superpower. Being determined and persistent. Yeah, that's a big part of it. Plus, they have super focus along with other things they do that the neurotypical person sometimes just does not have. So they say it's their superpower. It can, but there's also some very real challenges that come across. So, I mean, one that is tough as a parent to really understand is life expectancy of someone who retains an autism diagnosis is greatly reduced. So for people who are on the more high functioning side, death by suicide is something that is. Yeah, that's the second leading cause of death among autistic people around the world. Yes. And then for on the more profound side, eloping, drowning, accidents. So life expectancy is in the 30s in the United States for someone who retains the autism diagnosis based on the latest research. So there is a superpower, but there are very real challenges. So it's the determination and the persistence that is the beauty of autism, because there are so many challenges in which it's needed. Yes, and they're very focused. Once they get into something, they start researching, they just do not give up. They keep persisting until they know everything there is to know about it. One of the many great things that they do. Yeah, and some kids with autism can express that, but some kids who are more on the profound side, you see a lot more of the challenges, right? So you see a lot more of the behaviors and they don't even get a chance to really engage in school that is at their academic level of understanding. It's really more at their ability to express, which is many times much, much lower. And that's when problematic behaviors happen when kids are bored and not really challenged academically based upon just the behaviors and their symptoms related to the severity of their autism. So having focus is certainly great and definitely is a superpower, but just not everyone with autism can get to that point of having that in their life. But everyone should. That's the thing. Everyone should have that chance in life to find what they really love and focus on it and become determined and successful at whatever interests them. That's right. Exactly. Well, this has been great. Great information, great conversation. I really appreciate you taking the time to join us today. Oh, my pleasure. I've enjoyed this conversation. That's really good questions. Thanks so much. It's been my pleasure. Thanks again. Thanks for taking time out of your busy schedule to listen to our show today. We hope you enjoyed it as much as we enjoyed bringing it to you. If you know someone who has a story to share, tell them to contact us at whynotme.world. One last thing, spread the word about Why Not Me. Our conversations, our inspiring guests, this show. You are not alone in this world. If you like the show, please take a moment to rate, review, and subscribe. It really does help the show to grow. Thank you for listening.
