EP41: The Link Between Fibromyalgia and Autism

In this episode, I sit down with Dr. Michael Lenz, a physician specializing in pediatrics, internal medicine, lifestyle medicine, and lipidology. Dr. Lenz is the author of Conquering Your Fibromyalgia and host of the podcast by the same name. His passion for lifelong learning and holistic patient care has led him to specialize in chronic pain syndromes — conditions that are often misunderstood, misdiagnosed, and dismissed by the medical community.

Together, we explore:

• The different types of pain — nociceptive, neuropathic, and nociplastic — and why understanding these distinctions is crucial
• How chronic pain conditions like fibromyalgia, POTS, Ehlers-Danlos syndrome (EDS), mast cell activation syndrome (MCAS), and migraines often intersect with neurodivergence
• Why so many autistic and ADHD individuals experience chronic pain and how sensory processing differences can complicate diagnosis and treatment
• The emotional and psychological impact of being dismissed by medical professionals
• Why outdated medical education and systemic gaps continue to leave neurodivergent patients struggling for validation and relief

Dr. Lenz also shares insights from his clinical experience, including real patient stories that highlight the need for greater awareness, compassion, and interdisciplinary care. If you've ever felt unheard or gaslighted by the medical system — or if you want to understand the complex relationship between neurodivergence and chronic pain — this conversation is for you.

Watch this episode on YouTube.

Check out Dr. Michael Lenz's website: Conquering Your Fibromyalgia 

Theme music: "Everything Feels New" by Evgeny Bardyuzha.

All episodes written and produced by Kristen Hovet.

Send in your questions or thoughts via audio or video recording for a chance to be featured on the show! Email your audio or video clips to otherautism@gmail.com through WeTransfer.

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The views, opinions, and experiences shared by guests on this podcast are their own and do not necessarily reflect those of the host or production team. The content is intended for informational purposes only and should not be taken as medical or professional advice. Please consult with a qualified healthcare provider before making any decisions related to your health, fitness, or wellness.

Transcript

Kristen Hovet (00:00)
Today I'm speaking with Dr. Michael Lenz, a physician specializing in pediatrics, internal medicine, and lifestyle medicine. Dr. Lenz is based in Wisconsin and is the author of the book titled, Conquering Your Fibromyalgia. And he's the host of the podcast by the same name. Please say hello to Dr. Michael Lenz. 

Michael Lenz (00:23)
My name is Dr. Michael Lenz. I am a physician. I wear a lot of different doctor hats. I'm a pediatrician. I'm also boarded as an internal medicine doctor, got lifestyle medicine, as well as lipidology. And I had a doctor in pre-med school period said that every seven years, half of what you learn changes. And I took that to heart and I want to be a lifelong learner. I wanted to learn things in depth and I didn't want to focus on just one organ system in med school. And I didn't want to do surgery.

I always had a big heart for mental health and related issues. And I kind of went into medical school, not believing hypochondria was real. I just didn't quite understand what it was. And I had to learn more among the firehose of information we have to learn as doctors and I'm married. And I have my wife who's a dietitian who teaches people about eating healthy and loves what she does. And I have three children, a son, Isaiah 24, and two daughters

who are in college and one is a senior in high school. And I practice in Southeastern Wisconsin and I see both general primary care, so from newborns through retirement and ages in between, I see lots of families and when it comes to neurodivergency, part of how I've grown is I take care of a lot of extended families, from nuclear to even to extended families because it's often hard for somebody who

is neurodivergent to find a doctor who knows how and understands, can provide good support and care. So often I get referrals within families and then friends. And as we can talk more about this, I also have a special interest in chronic pain syndromes, often known as these invisible illnesses that are very challenging. And my favorite group of patients actually are working with people who are struggling with these chronic invisible illnesses. Fibromyalgia is kind of the epitome, but under that umbrella are things like EDS.

POTS, mast cell activation, chronic fatigue syndrome, migraines, IBS, irritable bowel, kind of the list goes on. The depth of suffering is deep and the area or the time of suffering is profound. And when you can help somebody, it's one of the most rewarding things you can do to help somebody live better with a evidence-based approach.

Kristen Hovet (02:41)
So a lot of your work, as you said, is focused on chronic pain syndromes. I think many listeners are at least somewhat familiar with the concept of chronic pain, but can you explain what is meant by chronic pain syndromes?

Michael Lenz (02:55)
There are three types of pain. So I'm going to use a technical word. It's called nociceptive pain. That's one type. And this is in the last two years, the international association of pain, I forget the whole acronym, has come up with these three categories of pain. So nociceptive is what we think of as classic pain. In fact, a lot of people assume there is only one type of pain and that's tissue damage. So if you think of an appendicitis, a bone fracture,

ischemia in the heart when somebody's having a heart attack because of blood flow is not getting there. There's tissue damage occurring, right. So we get that concept. Neuropathic has to do with an injury to the peripheral nerves. The most common cause of this is diabetic neuropathy. So uncontrolled diabetes, the glucose has a chemical reaction with the coating of these nerves causing abnormal signaling and firing and giving pain from that. And another common source

under neuropathic would be a herniated disc that's compressing that nerve. When we come to chronic pain, the category is called nociplastic pain. That's pain that's been going on for [at least] three months, but it's not just pain. There's fatigue associated with it, there's insomnia associated with it, and there's cognitive dysfunction or struggles, also known as brain fog. When we look at

a simple definition that I'll talk about, when we think of anxiety, anxiety is kind of, and pain, as definitions, are kind of like a fever. In itself, it's not very helpful if you don't know the context. But anxiety is the perception of a real or perceived threat. And pain is the perception of a real or perceived tissue damage. We get into trouble or misunderstanding as doctors may not know

these three types of categories exist and patients often don't know these categories exist. For many people, when they have these nociplastic pains, there is this perception of a tissue damage when there isn't the tissue damage, or if there is tissue damage, the perception of tissue damage or injury is higher than the actual injury. That doesn't mean there isn't any less distress. That doesn't mean somebody with anxiety who is experiencing anxiety

is not in severe distress, but they are in a safe area per se, if we're talking about anxiety. There isn't an immediate threat, but there's a sense of an immediate threat. And it feels the same.

Kristen Hovet (05:26)
I was just thinking, you mentioned hypochondria. So I'm sure that people experiencing that third type of pain would often be labeled with that because people wouldn't understand where it's coming from.

Michael Lenz (05:38)
And like a patient I saw today, she had been seeing specialists for decades, even went to the Mayo Clinic and nobody has given her the comprehensive help that she needs. Often people when there's complications, they'll see a specialist. They might see an allergist for mass cell, but the allergist doesn't see the whole person necessarily in general sense, or the GI doctor may see somebody for an irritable bowel syndrome, but

their expertise isn't so much past that. They may then defer to a psychologist who's not the expert in the migraines, but the neurologist is an expert in migraines, but they may not be the expert in another area. So when we talk about some of the science that really makes fibromyalgia a real problem was functional MRI testing by Dr. Daniel Clauw done around 2002 or published around 2002 and associates in the

studies where they looked at people with fibromyalgia and people without fibromyalgia. And they applied pressure gradually to the thumbnail and they could measure the amount of pressure with a special pain meter. And they said, tell us when you are in moderate amount of pain. And what they found is those with fibromyalgia reported pain at about half the amount of pressure as those without. When they looked at blood flow or activation in parts of the brain,

they found that the same parts of the brain were activated in both groups, but it was just at the lower threshold. So the experience of distress was, this is real, this is legitimate. And before that, they thought it was kind of like a psychological phenomenon. It's kind of like imagining things.

Kristen Hovet (07:18)
That's really interesting. And how does the mast cell activation fit in with fibromyalgia specifically?

Michael Lenz (07:24)
So it falls under the umbrella of nociplastic pain. And when you look at symptoms, often there is going to be fatigue, brain fog, insomnia, and pain associated with it. And then there is often other neurological endpoints where there can be rashes or hives or intestinal diarrhea or flushing or GI symptoms. Often,

with an underlying stressor that activates and the body reacts, that hyper responsive nervous system, and is reacting to the perception of a threat. And a lot of these are reflexive, without any conscious effort. I think more research on this isn't just a mast cell that's overactive, but it's probably the central nervous system sending a signal to tell those mast cells to react.

Is there anything wrong with the mast cells? No. Just like when they do muscle biopsies of people with fibromyalgia, there's no difference in the muscle itself, but the central nervous system, the brain, brainstem, and spinal cord are reacting and sending.

Kristen Hovet (08:31)
What inspired you to become interested in these conditions, especially in relation to neurodivergent populations?

Michael Lenz (08:39)
Even before medical school, I had remembered people in extended family who might not show up for a Fourth of July gathering. As a child, I remember asking my mom, why is so-and-so, the wife not here, of that man? Oh, she's got agoraphobia. You know, she doesn't really leave the house much, which was always a mystery. Like, why wouldn't somebody leave the house? What's agoraphobia? Well, they're afraid of outdoors, which didn't make sense. So I always had that curiosity, and there were

extended family members who were struggling sort of with mental health, but that was kind of a mysterious thing in the 80s. When I started med school, my first year in med school in the fall, we had an optional lunch lecture on ADHD. I think it was by Russell Barkley because he I think was in Milwaukee at the time but we had so much information and a few are in the ADHD world. Russell Barkley is one of the internationally recognized experts and I heard about this thing called ADHD and I didn't

quite get it, but I knew that this was being described as a real phenomenon. My first year in med school, we had to pick a health illness in our gross anatomy group. Every four people, you had a little group and it was divided in the alphabet, every four. So our gross anatomy group also was our small group on problem-based learning. And we had to pick a health condition. And what we would understand is that biopsychosocial understanding of it. Our group picked depression and our mentor was one of the attendings in psychiatry. And we learned like,

20 % of people will go through depression during their lifetime. This is as common as high blood pressure. And so that mental health awareness, this impacts healthcare, right? In so much, so many health issues. So I had that, plus again, we are learning so many other organ systems, every way the body is supposed to work properly and all the things that can go wrong. So I carried that into medical residency with an understanding that mental health has an impact.

I had training in ADHD when I was doing pediatrics. My clinic was a routine, just like taking care of an adult with high blood pressure or asthma, we were getting, diagnosing, and treating kids with ADHD. At the time in the 90s, they thought miraculously it would go away at age 18. Only a few adults continued to have ADHD into adulthood. That was the recognition back then. And girls and women don't really get it or probably didn't get it. Well, that never made any sense to me.

And I kept remembering my mentor who said, every seven years, what you learned in medicine is going to change. So you always have to be humble to learn more. So in isolation along the way, I'd learn about migraines. I'd learn about IBS. I'd learn about this central pain sensitization sort of vague syndrome and disorder, fibromyalgia. And I heard about these kinds of problems. And then you start taking care of patients. And then over time, you start to see trends.

There's a family history of these central sensitivities. You might have migraines, your mom had a chronic arthritis, but the weird part is your mom's chronic arthritis started in her 40s, which is really unusual. But it turns out that's what they called fibromyalgia back then when they didn't want to call it fibro. They said you have arthritis, but they weren't having crippling arthritis. So you start seeing these patterns. And again, I didn't believe in hypochondria. And now I had a big heart for caring for people who were struggling.

And you start seeing these other connections. And then a lot of my patients who had these chronic health illnesses, like these invisible illnesses, also had co-existing or co-occurring ADHD. And you'd say, well, we have the ADHD. And you know what, Dr. Lenz, since my ADHD is getting treated, my pain isn't as bad. Well, that's interesting. And you start looking what other studies are coming out, and then in the 2000 and teens, you start seeing some studies out there and case reports that this

isn't just my observation. Other people are seeing this as well. And I wrote a book that got published just over four years ago. Do you know how many times I mentioned the word autistic or autism? Zero. I had an understanding of autism as a pediatrician who is looking at autism as something you screen for if a child is delayed in talking, is having

dysfunction in the stereotypical educational standpoint, usually a child. And most of, now what we often have the stereotype. That's why I like your podcast, The Other Autism, but there's that stereotype. The other part, and I love that you talked about this on your podcast is I read the book, highly sensitive persons or HSPs, right? Highly sensitive persons or people, right? By who's the author again? I forget off the top of my head.

Kristen Hovet (13:19)
Dr. Elaine Aron

Michael Lenz (13:21)
Yes. So I remember reading it and I go, she's talking about my fibromyalgia patients. This is kind of weird. And I emailed her and I said, I'd love to talk to you more about this. Like you, I never heard back. But then I started learning more about autism. And probably about three and half years ago, I had a patient who I was treating for fibromyalgia. And she said, well, know, Dr. Lenz, I got diagnosed also with being autistic and I wasn't going to say, no, you're not autistic,

you looked at me in the eyes. So I just go, that's interesting. I won't deny this diagnosis by a psychologist, but it doesn't fit my understanding of this. And it turns out there's a lot of people who have these co-occurring conditions. And once you learn a little bit, then you see the connections with your patients. And then you ask your patients about some of these. I ask my patients and they share these experiences. And the more I recognize this, I'm like, wow.

This is a huge part and it's not my perception, then you look at what is the research showing. It is also being shown that these are often very co-occurring and often many people who have autistic style way of experiencing the world have been through a lot of struggles and have been misunderstood. And for the first time in their life, they have somebody helping explain a lot of the struggles and then helping support them like

a similar patient of mine today, as we start asking some of these questions to help understand themselves better. It's about time we get the right support and care for them. And I think part of understanding, if somebody is autistic, that can impact overlapping with autistic burnout, which can overlap with fibromyalgia flares. And if we start understanding from the biopsychosocial, spiritual, environmental aspect, starts to make sense. Instead of random flare ups,

you can start to see how these other factors connect when we look at it from this more complex understanding.

Kristen Hovet (15:19)
Thank you. That's really interesting. And I don't mind sharing. I recently had an emergency situation where I reacted to something that I took and it appeared, I guess, to the people, the emergency personnel that I was having a panic attack and it was likely related to my mast cell activation. And even like I was having, it was more like an anaphylactoid kind of reaction. And I had like

chest pressure, everything, and my speaking ability just went out the window. And so they assumed I was having a panic attack. And I was able to tell them, I have mast cell activation. I'm having a reaction. And they were just like, they saw that I was autistic. And they're like, oh you're autistic. We totally understand what's going on here. And I'm like, ugh, and I couldn't express myself. And I was just speaking in one word, kind of like, my cat was behind them. So I was like, cat!

Michael Lenz (16:13)

Kristen Hovet (16:14)
They thought I was just like being an autistic person. I'm like, no, seriously, usually you cannot tell that I'm autistic. And I was trying to articulate that and they're just like, we know what's going on. You're having a panic attack. You know, so, it's like this education is so needed out there.

Michael Lenz (16:29)
Yeah, I think it could be helpful in helping somebody if you're autistic, put that into the bigger sense of things. One analogy I like to use in talking about fibromyalgia and lot of these invisible illnesses is it's like being blindfolded, bound, and tortured by an unknown assailant without any recourse for relief. And it feels like there's no hope. You don't know how you got kidnapped. You don't know how you're in this situation. It wasn't on your own accord.

And you have faint ideas. You may hear footsteps going up and down stairs and it seems random, but through education and understanding, taking off the blindfold, it can be like, oh, there might be someone, let's say, who has fibromyalgia, discovers they have co-occurring autism and ADHD with co-occurring restless leg syndrome, who has had trauma and stress in their life. And they go to school and they like numbers and finances and

things. And then they discovered that they have to do sales as part of their personal finance and retirement planning, which means you have to go and make small talk with strangers. Oh, didn't know that was going to be part of the job. And now it's very stressful. And then there's quotas and there's, you have, you know, six months to get this clientele up. But it might be, wow, what if you got a job

where you didn't have to do Zoom, you didn't have to do face to face. You can support people on the phone through email, text, and support their retirement. And that understanding can be like, oh, I have to find the right fit. When you have a patient like that and they then get the job, they start feeling so much better about themselves and they can function better and hopefully have less stress about a job that is a bad match for their neurotype.

Kristen Hovet (18:17)
In your experience, how do sensory processing differences in autistic and other neurodivergent individuals complicate the diagnosis of fibromyalgia or other chronic pain conditions?

Michael Lenz (18:30)
It's part of that. In fact, one of the, when you look at the fibromyalgia impact questionnaire revised, one of the questions is, these are like zero to 10. It's a functional score. It's one of my early podcasts is how bad is my fibromyalgia? And it's a tool I use if I was seeing somebody, I do the widespread pain index, symptom severity score for diagnosing along with the careful history. If somebody lost 27 pounds with bloody stools,

I'm going to wonder if they have ulcerative colitis or cancer and not assume they have just an IBS and they're stressed. You could have metastatic breast cancer and you have pain everywhere. And we're going to do a careful history to rule that out. But with that, making the diagnosis, but part of the fibromyalgia impact questionnaire, there's zero to 10. The last question is how sensitive are you from not at all at zero to 10 being very sensitive to things like light, smell, touch, temperature, sound.

I've been doing that for years and many fibromyalgia people report, well, I'm very sensitive. Oh, I can't stand sudden noises or changes or these sounds. Hmm. And often what we're describing is the same people who are autistic as who have fibromyalgia, these are overlapping. And when you look at these overlapping Venn diagrams, it's like, yeah, I've always been more sensitive to certain things. That's, when I say complicated, it makes, I think,

not the diagnosis so complicated. Well, I should say, what makes it complicated if somebody's autistic? They may not express, in a doctor's visit, because of alexithymia, how their inner state of being is with spoken words, right? And so that can be, if you are picking up body language that you're being not validated, that they don't really trust that what you're saying is true.

There's a lot of, especially by the time somebody sees me, they've been going on for years, if not decades, of being to multiple specialists, haven't quite given up hope because they're still looking, but they don't even know if they want to tell everybody there's something wrong. I'm giving a talk in two weeks at the Children's Hospital of Wisconsin Autism Clinic for the clinicians working there, talking about chronic pain

and autism and ADHD and the overlap. And one of the cases I share is a patient who came in to see me. She was in college, going just for a college physical. And before I walked into the room, I just asked my nurse like, oh, any concerns? And the nurse is like, nope, she's just here for a physical, no concerns. And then I walk in and there she is, nice, doesn't look in any distress, looks healthy, like a nice invisible, somebody with an invisible illness, right?

So in our computer system, we have medical records and there's a problem list. She was new to me, used to see a pediatrician, and I see this problem called dysmenorrhea in the problem list. And sometimes there's things that says broken arm or strep throat or UTI. I go, is that still a thing? And she's like, yeah. I'm like, oh, from zero, not at all a problem to 10 being extremely uncomfortable, how bad is the

pain with your periods and she started to say it's like a 15. It's so bad I can't go to school for a couple days. And I said, well, you know, I'm just curious, why didn't you tell the nurse or me when you made the appointment that you were having this? She's like, Dr. Lenz, I've been having pain since a year after getting my period. I went to the pediatrician. They gave me ibuprofen. It didn't help. I went

to an OB-GYN and she said, all I can give you is birth control. And that didn't help. And I said, well, you know, a lot of people who have pain with their periods also hurt other places in their body. They might get migraines, neck pain, other places. And then she started to cry and she said, Dr. Lenz, I hurt everywhere. I've hurt everywhere since I was a kid. And I said, well, why didn't you tell me? She said, because

nobody ever did anything for me. And I think my mom, I don't even know if she believes me and no doctor has been able to help. So I just learned to stop complaining. I started talking to her and I said, well, it turns out, you know, a lot of people who have these kinds of problems also have some co-occurring things like problems with restless leg or periodic limb movement disorder. They might have ADHD. They might have an autistic style brain and nervous system. Fast forward. She said, yes, my legs are uncomfortable. I can't

lay still at night. It's hard for me to, I always have to be stretching and moving. I said, well, that's a medical condition. How long did you have that for? Oh, I've always had this since I was probably in elementary school. And I said, well, did you tell anybody about it? Well, no, it's just my mom said that's growing pains. I said, that's actually a condition. Now we understand it's a medical condition called restless leg. Made sure she wasn't anemic, treated her with medication, gabapentin. She slept through the night. Did the evaluation for ADHD,

had that, she was treated with five ans, and we also did the CAT Q and the RAADS questionnaire. We talked about autism, reading the book, Is This Autism? and other factors. And she said, yeah, that makes sense being autistic. She also was having migraines. And she said, within a month of adjusting doses, she said, this is the first time in her entire life she had no pain with her period at all. A year later, her sister came in

who was in high school and said, you need to see Dr. Lenz finally, they came in and she was having some of those early kind of things. So I think part of what complicates it and often it might be as gaslighting or minimizing symptoms. And often people will learn why, you know, I know, I guess you just don't complain because you can sense that. And many times if you're in childhood, with the pediatrician, this is not in

their experience, they don't know how to manage this. They refer to specialists, if specialists can't figure it out, you get ping ponged around and nobody gets answers.

Kristen Hovet (24:53)
That really resonates actually with my experience. And the other part of that is, I too remember going to the doctor when I was little and having, you know, I think growing pains that were way more than they probably should have been. And that was kind of the start of things for me in terms of being gaslighted by

physicians and others in the medical community. But the other element of that was my mom and I have very similar conditions and bodies. And so who does a girl go to when she has questions? Her mom. And so for her, those things were normal. So it was sort of like, that's just what happens when XYZ, right? So for me, it was I didn't realize that what I was experiencing was

not the norm for the longest time. Like it took me, you know, until probably high school and talking with my friends about these things that it was like, no, actually I don't experience that. Like, oh okay, interesting. So that was like part of my journey, but yeah, it's amazing. I can't even imagine how it'd feel to go to a doctor and feel that validated. Like really, it's a constant, every time I have to go to the doctor, I'm filled with anxiety,

because it's, I have to walk through all the things again, make sure I don't seem too hypochondriac or too needy or too extra. And also there, I had cancer in 2015 and that was a whole thing. And I talked about it a bit with my last guest, Dr. Paula Holmes Rodman. Her sister passed away from cancer and she was talking about the concept of like the perfect patient.

And so a lot of autistic women especially want to be the perfect patient. And it's probably because they've been so gaslighted over the years. So we'll tend to just be like, yes, uh-huh, uh-huh, and nod our head. And we're not really taking anything in, but we're nodding. So there's that too. And just wanting to show that we're going to do everything the doctor says, because we don't want them to think that we're, I don't know, that we're just not

good patients, that we're not going to do what we're told or, you know.

Michael Lenz (27:10)
Part of that family, the mom did come in with their daughter, who was in early high school, and talking with mom, she's like, Dr. Lenz, I'm pretty sure I got the same type of brain. I didn't know any better. That's what I was told when I was younger. And so it wasn't because your mom or this patient's mom, they were kind of like, this is sort of a normal thing. And why, if you listen to my podcast, I do a lot of history

on my podcast of what medical diagnoses that were likely, what we called fibromyalgia in the 1800s was neurasthenia. And that faded in the 1920s and 30s as a diagnosis you may have never heard of because then we started getting into the classic biomedical model, like, we can use a microscope and we can see bacteria and we can have X-rays and fractures and eventually get antibiotics and do surgeries and anesthesia and,

who wants to waste time on these invisible illnesses anymore when we can do real medicine? And that's kind of for a hundred years or about 80 years, it faded until now we have this rediscovered that yes, this was a real problem. A lot of doctors were onto it at a time. I had a recent patient say to me who was referred by another patient. And a lot of times people like hypothetically were in the same area and you go, you should see Dr. Lenz. Let's say you have somebody who has these invisible illnesses and

you're like, I think you should check out Dr. Lenz. You're like, why? What makes him different? I don't know, I think you're going to like him. I think he's going to listen to you and you're going to be understood. But they still may go like, what? Isn't just a doctor a doctor? They're all kind of the same. So this was another recent patient I saw last week who came in and she had been dealing with chronic pain issues, seeing a pain doctor, which often are doing back injections and things and had seen primary doctors

and stuff for things going on for years. And she went to her primary and said, I don't know, what do you think about this? What do you think's going on? What do you think the problem is? And she said, you know, you just have to stop asking questions and stop looking. And we were talking and I was hearing her story and she said, after a few minutes, we were talking and she said, do people cry a lot when they see you? And I said, yeah, a lot of times they do because they're being validated. And I said,

that's sad that somebody said stop looking and you didn't give up. And she did have fibromyalgia. We're doing a work up in the evaluation. She met the criteria. It wasn't just a localized back pain and getting back to that complicated part, this girl, who was in college, she didn't just have dysmenorrhea. She hurt everywhere. And yet I don't want to say I hurt everywhere because I'll be perceived as, what? You look good.

You look healthy. How can you hurt everywhere? And so often there's this misunderstanding. People don't get how can you hurt everywhere when you look so good on the outside? And I had a patient who found me through my book and a little in the podcast, she read about a couple chapters. She hasn't gotten through all of it. And she said, I thought you were basically describing me in the book because, and part of why I wrote the book is,

I didn't have enough time to explain these complicated to patients. I used to have a two page handout, then I had a 20 page handout and that wasn't enough. And I said, well, maybe someday I should write a book to put all of this information because part of this, another part of this, is that many people are living with chronic pain syndromes when they aren't listened to by the general medical system, often go to doctors that don't have the best evidence to support them. Often these are

going down not the best science-based regimens. I do episodes on talking about like chronic Lyme, which is under the umbrella of fibromyalgia, but it's not because you have a latent infection or you don't have mold toxicity in your house and have to clean everything or some mineral imbalance. But you went to a functional medicine doctor who cared about you, listened to your story, validated that it's real, but their conclusions on the cause and the solution weren't strongly science-based.

And could they have some things, like talk about stress and sleep and other things. And that's often where people go. So part of why I put this out there is like, so you're telling me that even though I have pain, that doesn't mean there's tissue damage, but I have just as much distress as if I do, but I don't. That's a lot to swallow because often they've been to doctors and they've tried injections and tried treatments and procedures.

And when the dots are connected, often there's relief and there's grief. The relief that finally makes sense, but the grief, like sometimes I think they think that they had just the worst darn luck in picking doctors and that most people know this already and they're like, no, and sadly not, this isn't part of routine training.

Kristen Hovet (32:25)
That's really good and that also fits with my experience in the sense that I will say some of those words. It could be, you know, even when I was looking through mast cell activation disorder I think I had found that one as well and brought it to my specialist and, at the time, it was like, oh, well there's a lot online that's wrong about that. And it's like, yes, there is but there's also, this is actually maybe the thing and it ended up being the thing.

But yes, we need more science of those things. Like you said, there's the wrong doctors focusing on some of those issues. And I guess the other thing, to move on to sort of the other question that works into that is, you mentioned alexithymia. And so when you're working with a patient, an autistic patient or patients with ADHD and so on, and they have trouble articulating their pain to you or what's working, what's not, how do you kind of, I guess, change your treatment plans and tailor your treatment plans to them?

Michael Lenz (33:19)
So a couple of things, what I think is really helpful, if somebody's seeing me for new, I try to get as much done in 45 minutes or in 60 minutes. I said, I want you to write down your life story starting when you were a baby. And that may seem silly. And I go, you don't remember a baby. But do you know one of the first syndromes or symptoms of invisible illnesses is colic. Now, some people remember going, yeah, mom said that

I was not like my sister. I was really a difficult baby. I never wanted to go bed. I, you know, I was fussy, which is interesting because having a lifelong perspective as somebody who cares for newborns through all ages to recognize that. And I knew there were studies getting back to how do you get these connections? Like, wow, colic is connected with later risk of developing migraines, later risk of having IBS. And I might be the only pediatrician in the country or the world,

when I have a child, a baby who has colic, I'll say, hey, mom, dad, I'm just curious, do either of you have any history of like migraines or a nervous stomach or IBS or pain or fatigue or anybody in the family tree who's ever had chronic fatigue or POTS or fibro? And now that I'm aware of this for the last several years, one of those are connected. There's studies showing up to 90 % of babies who have colic, one of the parents has restless leg syndrome.

So if you start to look at these patterns and these co-occurring overlapping conditions, you can start to see that. Getting back to what do I have patients do, I say, I want to know about to infancy, what were you like? And sometimes you're like, I never was a good sleeper. My mom said I never slept good. I never took a nap in my life, apparently. You start to hear, well, now if they're 45 years old, they're insomnia, but well, I never was a great sleeper. And then what was between, what was elementary school like? What were your strengths, right? What were your strengths?

What were your struggles? What physical complaints or diagnoses or visits did you have? Did you go to the school nurse? What potential social things and challenges do you have? About 50 % of autistic people have been through high stress situations and that's a nice way of saying terrible, awful things. And I want to know about it. And I mention that ahead of time, I say to a lot of my patients. And I knew that there was lots of trauma associated with fibromyalgia. Well, there's a lot of trauma associated with

autistic style brains. Not because they've had this. Somebody who was raped in high school and in their early adulthood and then says to me, Dr. Lenz, I'm so gullible. And it's like, no, you have predators taking advantage of people who trust and read things black and white and don't know people lie and don't mean what they say. And yet still in their forties may carry that forward. So what were, what was elementary school like?

What was middle school like? As you know, autistic people have a much harder time, once hormones and complex social relations, and it's not because the parents are setting up play dates anymore. What was high school like? Was there any substance use? Did you graduate high school? Did you drop out? What about college, if you went? What about post? What about relationship history? And often, I say, it's gonna be about a page per decade of your life. So if you're 60, you're seeing me, it might be seven pages.

And I don't have time to listen to the story now, but you might not be able to express it now, but I do truly want to know your story because it helps me understand you better and care for you. So being able to go home without pressure and write and type that out and either send it through MyChart, our medical messaging system, to help understand. And they might see some patterns. You know, I actually got diagnosed at age

37 with fibro, but I've had actually pain syndromes going back to age seven. And often when I hear actually a family history is having chronic stomach issues, chronic stomach problem in a child should trigger a clinician to screen for autism. It's such a high co-occurring, and I know we [say] autism or autistic style brain, but I just use it in a neutral way. It's just a difference.

But to be aware of that, it's very co-occurring, whether somebody got a formal diagnosis, but they might've said, oh, I got a lot of constipation. I was on that MiraLAX or I was on a laxative or other things. I forget the original question, but how, alexithymia. So having that chance to talk about it. Then the other part is, well, how bad is your pain? That's where using these functional scoring systems, like the, I use the fibromyalgia impact questionnaire,

is a tool because it's not, tell me how bad your pain is, but how difficult was it to sweep the floor from zero to 10? How hard was it to sit still for 45 minutes? And when you look at these questions, you start to see an autistic person is going to have more distress with this question. How difficult is it from zero, not at all, to 10 being very difficult in the last seven days to go grocery shopping? How do you think most autistic people answer that question?

Kristen Hovet (38:41)
Yeah, it's challenging.

Michael Lenz (38:43)
And so I had a patient I saw today, we went through it, said a 10. Almost embarrassingly that she had to admit, as a mom, that it's hard to go to the grocery store. Getting back to this, I brought up some of these things and I'll ask a question now. It's from the book, Is [This] Autism? Learning, continuing, and growing, I'll ask a question to my patients who I have these other clues that maybe somebody's autistic. I'll say,

you know, we've been talking, just taking a history about as long as we've been talking right now. And I might say towards the end, I'm just going to ask you a question. You're going to think it's weird. You probably have never had this question asked of you, let alone by a doctor, but how uncomfortable is it for you to have sustained eye contact with people you don't know well? And it's funny because most of my female patients who have this, mask very well.

And because we got a computer, I glance over, they glance over, and it kind of works out that there's a natural pauses. And it's funny when I'll hear things like, I'm sorry. Is it that obvious? And I go, no, you've been masking immensely great. But the reason I ask is some people who have these chronic pain syndromes also have an autistic style brain. Now I don't have time to dive into this today, but I want you to go through some questionnaires, read through some things, and we can talk about it. We don't have a medicine to treat that, but we do have,

we do understand that's part of that. I said, you might not want to go grocery shopping and just order online and pull up in slot number 3c and get your groceries. Why should you have to go? I heard Walmart has some low sensory hours. Well, we could call them autistic friendly hours, but we call them low sensory hours and then you're like, oh,

so there are things that we can do. Why should I make it higher? Right? So if you're going to a holiday gathering, in America, we have Thanksgiving, as you know, a lot of times there's football and noise and all of this. Well, guys, if I'm going to go for a walk and play with the puppies outside, it's not because I'm a bitch. It's not because I'm anti-social. It's just I can only take so much, but I'd love to walk and play outside and do something outdoorsy.

And if you have that, instead of being exhausted after that Thanksgiving and dreading that and getting migraines next year, the day before you go to your in-laws gatherings and for a few days after that, you're exhausted, you're like, oh, I don't have to explain myself and don't have to put yourself in the pressure.

Kristen Hovet (41:20)
Super interesting. And actually, I'm just thinking of like, I want you to come talk at our research institute, because I'm part of the EDI group, the super hub there at the research institute, BC Children's Hospital Research Institute. I think this is so needed. And we're talking about neurodiversity, it's one of our topics and how to make work more accessible and things like that. But I also think that

the doctors need to hear this because yeah, it's so lacking and so necessary. And I think that the numbers of neurodivergent people are actually much higher than what's stated online and things like that. I think

this could be relevant for at least a quarter of patients. Either they experience neurodiversity in themselves or in someone they love, and they are seeing these things and they don't know how to understand it.

Michael Lenz (42:20)
I was talking to a medical student about a month ago. I was just asking, oh, you're doing some rotations. Have you starting to get an idea what you want to be when you grow up? Right. There's a lot of types of doctors you can be. And she looked extremely healthy. Of course, like most invisible people, they look extremely healthy. And then she said, well, I've been having these health issues. Well, I'm a doctor and we learn a lot just by staring at somebody like, are you about to need to be intubated because you're respiratory,

severe distress or do you have severe pneumonia? Do you look like you got some cancer and you lost 50 pounds and you look terrible? But she looked really healthy. And she said, well, I got this chronic health issue that nobody can help me with. And, you know, I've been dealing with that and I'm like, what is this thing? Well, I got EDS and chronic fatigue syndrome. And I'm like, oh, I kind of specialize in that. She was like, what? Like, yeah, I actually have this podcast. I wrote a book and I

talk about that. And just did an episode this summer on EDS and talked about POTS in August with one of the nation's experts. And then we started talking kind of like we're doing. And she said, I would love to have you speak at our medical school. And she felt so validated because she knows how doctors often talk about this. So talking about stomach issues, I was seeing a baby of another, of one of my partner's patient's infant.

In the problem list, it had something that said intestinal dyskinesis or some newer name that I hadn't heard of. And it was maybe in a five month, six month old was having some issues. Well, what do we know about autism and overlapping syndromes of stomach issues? And I said, hmm, that's interesting. I'm just curious. Can you tell me more? Because the child was just in for a cold, check for an ear infection. And where I work, there's a lot of doctors that

bring their patients in and she was a doctor. And I said, that's really interesting. What kind of doctor? And she said, I'm an anesthesiologist. And I said, oh, I'm just curious, I've worked with a lot of people who have these chronic pain syndromes and GI issues. And sometimes things run in the family, like IBS and anxiety and other things. She's like, yeah, that's me. I had anxiety in college and in med school. And I said, oh, that's really interesting. We learn a lot of these stomach issues are overlapping with autism. And she's like, yeah, I'm pretty sure I'm autistic.

And then I thought, as you learn about this as a difference, and sometimes that difference can cause deep distress and to say it's simply a difference and your child can't speak, obviously there's all these different spectrums, but wow, she picked a good job. Being an anesthesiologist, you don't have to do tons of eye contact. You're very meticulous. You do things in order and you line things up and all of that is good. But

recognizing that and what if, already at six months, mom's aware of her diagnosis, at six months of age that her infant has this, it keys us to think about some of these issues and then mom is understanding her issues, which then we can give the support earlier in life so that they can be aware of these and so we don't have to wait until you're older. But often I see these families and that's often, the diagnosis

is made in one family member and then I'm either going up the family tree or down the family tree, meaning if I'm seeing the child then I go, hey, just like the colic, hey, which of you guys has this? And most of my patients who are getting these recognized in adulthood and they have children, they don't think it's character building to have distress and struggle like they had. They would love to have their child get the support and diagnosis and recognition that they need.

Kristen Hovet (46:07)
From your perspective, and we talked a little bit about this, but what are some common misconceptions about fibromyalgia and similar conditions, and how can we work to dispel them?

Michael Lenz (46:19)
So I think that people think it's not real. It's all in their head. I even heard somebody say to me in the autistic world, there was a doctor who worked in the developmental world of pediatrics who had said they didn't even believe autistic-style brains or autism was even a real thing. So I think that this is real. When I entered into this world of fibromyalgia with all of this information and experience,

and looking at research that has been done, I made a comment in some social media, Facebook, et cetera, related type things in the fibromyalgia world. And I said, you know, I hear stories and I feel like I'm hearing stories of somebody who's got end stage, stage four cancer, that we're doing palliative care, that we aren't really able to help and reverse and hope. And when I have patients who, I'm like, but that's not true. Most people

feel there is no hope. There is just, I gotta power through and there aren't any good evidence-based solutions for this. And we do have real evidence-based solutions and that comes from a comprehensive approach, right? When we talk about different sensory differences, we know that autistic-style brains have different readings on quantitative sensory testing, like doing heat measurements. A study about two years ago came out that autistic people reported

pain or distress at lower temperature settings with heat probes. That's the same kind of patients with fibromyalgia. So that this is real, and then if we can offer support with good, comprehensive, evidence-based solutions with a multifaceted approach. And it's complex, but there is real hope.

Kristen Hovet (48:07)
And what advice do you have for neurodivergent individuals who are struggling with chronic pain syndromes when it comes to advocating for their health needs?

Michael Lenz (48:17)
I think it's learning from good, reliable resources. I think that's what my goal is to put out there that people can learn more and connect. I think getting good information, trusted information, recognizing this as a comprehensive approach, I think whenever you do an intervention, for example. People might say, I tried duloxetine, it didn't work. I tried this, didn't work. But

using the fibromyalgia impact questionnaire revised as a tool to look at functional scores is a tool in research to see, did somebody actually get better. Just relying on how bad is your pain isn't always a very helpful tool. But when we look at these others, you might say, well, you had a 25 % improvement. Oh, but I'm still in pain. No, we told you that this isn't going to be curing you like a urinary tract infection. I think if you learn more about these, the biggest question I get of listeners of my podcast is,

Do you know anybody like you who works in my state? And I go, I don't know anybody that works in your state, but I did interview a nurse practitioner in Virginia that'll be coming out in May, her interview. She's a nurse practitioner who has fibromyalgia and ADHD, and she's read my book, and she's also into lifestyle medicine and talking about the role of diet and exercise. Hopefully more and more, and that's where I try to put the book and the podcast at a level that is intelligent, that gets the respect of

people who are patients who're like, hey, I don't want a fifth or sixth grade level. I want to have an intelligent 12th grade level understanding and, knowing that everybody's got different science backgrounds, and try to rephrase it so that both the patient, who really wants to know, and also clinicians, who also want to have a good education for them, to hit both. So hopefully more and more humble doctors that

recognize they may have dismissed a generation of patients. I remember that, in residency, residents who graduated, were ahead of me, and would talk about what it was like in practice and they said, well, you know, you got the worried well. You ever heard the term worried well before? That's a term in the medical in-circles about healthy people that are just worried about their health, but they're fine. Well, again,

it's a nice way of saying hypochondria. It's like somebody's like, they're always worried something's wrong with them. Well, because they feel like something's wrong with them. And we just have to give them reassurance. You're fine. You're okay. Stop worrying. Stop looking for answers. You're okay. It's just, you get the point. So, but when it comes to co-occurring conditions, like up to 80 % of people who have chronic pain syndromes have ADHD.

And the more severe your chronic pain syndrome is, the more likely you are to have ADHD. It may mean that your primary care doctor in British Columbia does not have experience diagnosing and treating ADHD. If you have that, you might have to then learn about that and then bring your history to the doctor going back to childhood, talking about what your education was like, what your experience in school and all of these to help this.

So then you might have to seek out a doctor who does that. That might end up being a psychiatrist or a nurse practitioner who has experience because maybe your family practice doctor doesn't. So you may have to do things in piecemeal. You might have to have a doctor who understands lifestyle medicine and sleep. A lot of this ends up being connecting the dots with information and how to put that in a cohesive way, learning more what autism is. As a recent patient of mine, with her and her daughter's diagnosis, who is in high school,

of recognizing, holy cow, this runs on both sides of the family. And unfortunately, often that was where there was substance abuse and alcoholism and marijuana use. And a patient of mine said, my dad was a pothead and abused my mom. Well, there's a good chance your dad was neurodivergent. And that was not, and he may have learned, not to make excuses, but he was having some emotional dysregulation

and was having a lot of anxiety and stress. And sadly, he learned that was an acceptable way to treat your mom. That's sad, right?

Kristen Hovet (52:40)
I guess what I was thinking about was actually autistic doctors and other medical professionals, like how common that is. Because I have heard from some people who were former doctors and they got out of the field because they were burning out constantly. And then they realized I'm burning out because I'm autistic. So I just wonder how common that is. And like, I've always loved medicine, writing, communicating, and medicine.

And I feel like in another universe, I'm probably a doctor because I would have loved to have been in that world more. And, I'm super lucky and grateful to be in the position I am now because I get to write about medical research and talk about it and podcast about it. But definitely I avoided medicine, like actually working with patients because I knew that I just couldn't do it. I wouldn't be able to do it with the one-on-one interactions and all of that.

Yeah, it just makes me think like, how are people supported going through medical training? And when they connect the dots, if they do, what are the supports, if any?

Michael Lenz (53:45)
And I think, especially when we're looking at The Other Autism, the people who have average to above average IQ, who mask, who can, on the surface, get through things, I think medicine actually are fields that actually attract higher percentages of people who are neurodivergent. And when you start to see and look and know what to look for, as a little aside, many of my patients will say to me or make comments,

and maybe you can already sense this, is Dr. Lenz, you ask questions that no doctor has ever asked me before. And when you look at somebody who comes in who has some hints that they may be neurodivergent, just having a chronic pain syndrome should at least make you wonder, is this patient neurodivergent in some way? Are they autistic, do they have ADHD, do they have both, do they have dyslexia, all these other things, you should just ask that. But if you think about having somebody, I had a patient who was a teenager,

was having some clues that he may be neurodivergent and some stress related to that. Family history. Well, it turns out mom and dad have married, divorced, married, and dad is in a sub-specialty of research in the field of medicine. He loves talking about the kidneys. He loves talking to doctors who like to talk about kidneys. He likes reading articles about kidneys and writing papers on kidneys and researching kidneys.

But he doesn't really express love that his wife, that I love you, in the endearments, terms of endearment, that his wife just goes, I don't even know if he's capable of love. And I kind of broached, I'm like, hmm, have you ever wondered? Which often, again, getting to that misunderstanding, she probably in some sense has vilified her husband for having a different way of communicating. But what if we go, oh,

so just because he doesn't express it in the same way doesn't mean he doesn't care about me and love me. But you're getting a different expectation from somebody. Just like if you're going to that social gathering, well you would show love because you would play loud family games with erratic laughing and cheering at a dining table with people you don't know well and make small talk in between playing games. You're like, well, since you don't do that, you must not love my family. And that's

unfair, right? I actually interviewed, do you know Dr. Mel Houser? Have you heard of her?

Kristen Hovet (56:17)
I've heard that name, yeah.

Michael Lenz (56:18)
Okay. Well, not to quiz you, but I did an episode interviewing her, I think it was two years ago about, and, she's an autistic family practice doctor. I think she'd be great to have on the podcast because she's autistic and she discovered, when her daughter had more stereotypical symptoms of autism, and like any mom of a child who has any kind of diagnosis and struggles and distress,

whether it's diabetes or asthma, you want to research it, right? Especially in the modern access, you want to learn about asthma or cystic fibrosis, whatever it is. And she started researching and she's like, well, I kind of got a brain like that. And she was having some burnout caring for her child who had higher support needs. And she was in a classic primary care, semi-rural setting, and it was causing distress. So she switched her career from being on call and sleep disruption and other factors to

having a clinic called All Brains Belong, in Vermont, where the staff and the clinicians are autistic or understand autistic. But a lot of the patients are there, are autistic. So, kind of a neat example of one doctor doing that to help support people. And I think about that, that burnout question. And I go, and we talk about it, but I wonder,

well, how many of these are people who are neurodivergent? And are we really screening for neurodivergence? You know, we can talk, as you talk, and say, being autistic is just a difference. Well, that difference can cause severe distress. And when I read the book, Is [This] Autism? by Donna Henderson, who I interviewed in October, when I saw the stat that two out of three autistic adults have had suicidal thoughts, and one in three have had an attempt or plan,

and 40 % of adults who attempt suicide are autistic. I don't think most suicide helplines and crisis centers are even throwing that into the equation. And often what I hear is somebody who was told, well, these can co-occur like bipolar because you did something impulsive or something. And often these aren't even in the equation to consider that. And what if we looked at the perspective of somebody who

is autistic and went through, and experience the world differently, and how can we understand them and support them better? What are your thoughts on that?

Kristen Hovet (58:50)
Oh, I have a lot of thoughts on that. Yeah, that's interesting. I've also had, you know, suicidal ideation. I don't think that's a surprise at this point. But when you're reaching out for help, like one of the first things you'll be told or sort of walked through is like, oh, you need to build up your, you know, social life or something,

which is kind of like the wrong direction for an autistic person, especially from a neurotypical standpoint. Like if you're pushing all these social events, that just leads to feeling more overwhelmed and increasing burnout. So you're not actually, you could have a higher support system, technically, and still feel worse. So I just recall that being a pressure. And then also just being told certain

treatment options like CBT or things that, you know, in their normal manner doesn't actually work well for a lot of autistic people. It's like, I can see the strings. It's like, you're getting me to gaslight myself, basically. Some CBT is helpful, but a lot of the CBT that I tried felt like I was trying to change real thoughts or real perceptions. It's like, I'm not gonna sit here and lie to myself, so

this isn't helpful.

Michael Lenz (1:00:15)
I had a patient of mine just about two years, a year and a half ago, as I'm learning more. And I had read that CBT doesn't work in autistic people. Well, and what's funny is I'm taking care of a patient of mine who's had some chronic anxiety, I've known well, he worked in a band, you know, on the outside, retrospectively masking, likes music, all of this. And he said, yeah, my therapist said, you know,

there's not much else I can do for you. And he's like, yeah, it wasn't really helping. We were doing cognitive behavioral therapy and I said, you know, I have known you for a while, but I just was reading that CBT doesn't work well in autistic people. And I've been treating you for your ADHD and I don't know, I'm just throwing it out there because there's a lot of stuff you can learn. I don't know if that ever came up, if you ever wondered, or if it showed up on your social media algorithm and he's got a smile and he said, yeah,

well, the singer in my band, well, she's autistic and she's been telling me, well, you know you're autistic, don't you? And so support therapy is going to be different. I got a chance to interview Megan Neff who wrote Self Care for Autistic People. She found out, as a late diagnosed woman when her child was diagnosed with autism, she started looking at the family trees and as she's a psychologist, like, okay, that's my family tree, not my husband's and started having connections.

I recommend the book for that because, exactly what you say, the, well, you need exposure therapy. You just have to get out there and that actually can be worse, especially if it's not in the right context with the right interests and the people and the things that you're interested in. That can cause stress or it might be tailoring that with that perspective. That's why I've kind of shared with my daughter, I'm like, you know, if you can really help care for autistic people, that is going to be the biggest need,

to help give the right perspectives. Because again, kind of like the, you know, we're talking about the same people often, whether it's fibromyalgia or anxiety because of social stress, is being validated. Like you said, well, I don't want [you] to have to tell me that I shouldn't feel like my stomach shouldn't curl up when somebody with strong cologne walks in. Well, it does.

And it's a reaction and I can't control it, right? Or you just have to just breathe deeper so you can handle the sensory overload in your in-laws house because, you know, you just gotta relax, you know? No, it's, I shouldn't have to just relax. Maybe somebody should explain that Kristen loves the family, but if you wanna go outside for a quiet walk in nature, she'd love to talk about stuff in that setting, right?

Kristen Hovet (1:03:10)
Definitely. And when you were talking about validation, that's exactly what I want and need. And I would love to see for everyone else in the autistic and neurodivergent communities. The other thing is like, I want to be validated, but not infantilized. I don't know if anyone of your patients speaks about that, because I don't feel that coming from you, but I have felt it from some people who are like, they have a certain level of education about neurodiversity. So you tell them you're autistic and they're like, oh,

good for you, you've accomplished so much. And they start talking to you like you're about five, right? So that's something I've noticed and I don't know what needs to change to start addressing that. Like I don't even know how to address it in the moment. Because like they're being nice, but it's like, I'm an adult.

Michael Lenz (1:03:58)
One thing is if Elaine Aron had a sequel to her book and said, HSP really meant to be autistic people, rephrased, because that was a best seller. And if that was, you know, mea culpa, actually this was me just describing something that better fits the autistic diagnosis, then I think that would change the perspective.

You have people like you and I understanding this, but it's not regularly understood. But I think how do we get that out there? When you've talked about that on the podcast before, on your podcast, so much resonates with me as this is the same group of people, but we're just looking at it differently.

Kristen Hovet (1:04:48)
Yeah, like Elaine Aron, she's reached millions of people probably at this point. And you try to tell someone in that group of individuals with HSP, you're probably autistic and they feel offended. That shows that we have a long way to go as a culture to change the understanding. It should be neutral. Like if you get that diagnosis or if someone recognizes a person as autistic, that's not saying something's wrong with you,

you know, because it's currently a bad thing still. I've had conversations online with HSPs who are just like, no, I can't be autistic because… and they use those things you mentioned, like I can make eye contact even though they're not addressing the fact that it hurts them to make that sustained eye contact or like for me, it feels like I'm going to jump out of my skin. Like my whole body's just buzzing to get away and go and jump and run away.

But they don't address those things. And so it's really hard to have a conversation with HSPs. So if Elaine Aron, if you're hearing this, please, I feel like you could change so many lives by just admitting that there's this other element you're missing and just rewrite your books a little bit and then it will address all those issues. I don't know, it's frustrating.

Michael Lenz (1:06:06)
Yeah. Like she said in the book, well, it's not autistic because… I'm like, well, no, that's actually, you don't know autism in a more updated understanding because they can talk or they have these IQs and all of this and highly sensitive. And often that's still used, you know, so-and-so is highly sensitive. She's like an HSP and I'm like, yeah, actually, in modern understanding now we call it autism. And for when I work with patients, I think the majority who have these

co-occurring things who just feel extremely validated and helped. But I think there's some who don't like me. And because I'm telling them that they don't have tissue damage, but they have this nociplastic pain, their perception is different, and oh, by the way, you might be neurodivergent. Now I try to do that in a delicate way.

And sometimes it seems silly because many people, and probably the majority who listen to your podcast would be like, oh my gosh, I'd be validated, I've known that for years, but I was afraid to tell a doctor because my therapist poo-pooed it or dismissed it or a psychiatrist didn't even understand what it was, and like, you're fine. You don't have that. Why worry about that? When even though they knew something was different, but not knowing that. And so knowing how some people might react like you may have that.

They're like, I don't know. And when you have somebody who, you go through this, and they meet the criteria, and you talk through it and I said, so, do you want this in your problem list in your chart or not? And most people are like, well, of course, yeah. Occasionally you have somebody says, you know what, I know what it means and you know what it means, but I don't know somebody else who's gonna look at this chart that's not you or I will understand

what it means. So don't put it in. And then there's occasionally somebody who says, well, I want to be a dual citizen or might want to… Canada! My autistic patients can't become Canadian citizens, right. I think there's these other aspects that, again, it's based on an outdated understanding. Like we don't want to have people with high support needs to come into our country, right.

Kristen Hovet (1:08:19)
You've probably heard these types of questions before, but if you could wave a magic wand and you could see certain systemic changes or innovations in the healthcare system for these neurodivergent patients, what would that look like?

Michael Lenz (1:08:34)
I think it would be nice to get curriculum probably in the undergrad level so that this is a standard part of psychology, intro to psychology, that this is part of that. When we have an updated understanding, this is just part of their undergraduate understanding so that we know that, right? That's just basic science, neuroscience from that standpoint. And also hopefully in the curriculum

within medicine. The problem is I heard there's 12 % more information that medical students have to learn now than when I was in med school in the 90s. Adding more information, but it'd be nice to have somehow to incorporate that into the curriculum and weave it in. It almost is like we have to have a specialty created that is for these chronic pain syndromes. The problem in our system, chronic pain is usually

looked at in a biomedical approach. So if you go to a pain doctor, they're more likely to do a biomedical intervention. They are going to be trained to put needles in the back, do injections, and try medications, but aren't trained to be screening people for neurodivergence and then understanding what that means. So it would be great if that's part of the curriculum. It probably will take neurodivergent doctors, or people who love neurodivergent people, who care for people, to

have that part of the curriculum and to change the language. So when you talk with a medical student who has this is not afraid when I care for many people in the healthcare system that are loving. I have a patient of mine who was referred by another patient of mine because they're hospice nurses. You know, what a great place if you're autistic. People are unmasking when their loved one's dying.

And you can unmask as a nurse. You don't have to pretend. And yet you can have that deep compassion come through. If you're listening to my podcast, you're going to have people living with this, sometimes patients, but mostly they're guests who are lived with some chronic pain syndrome, and sharing their lived experience so that other people can hear that and they can actually talk openly about what it's like. So other humble clinicians who are open to re understanding

patients who are dismissed and getting support for their patients and also have evidence-based understanding because I can't have every doctor shadow me. I can't have every medical student shadow me, but hopefully that'll start to become normal. I do think that in Canada, and I'm sure likely in Canada, in the US, once a year as a quality of care, we screen patients for depression.

That's a good thing. We've known that for decades that people who are depressed are less likely to take medicines, more likely to die after their heart attack, all of these kinds of things, right? Less likely to control diabetes. I think that we have to kind of get into screening mode and we screen for things and whether we call autism just a difference or disorder. I like to call it distress and it causes disruption. It can. And if we can just screen in our head that there's a different way of

perceiving and communicating and interacting with the world. I'll share, if I can, a story. I had a patient in her 30s, turned out she has ADHD and is autistic. Her mom said to her, living with her long-term boyfriend, and her mom said, know, you can't just text him. You have to communicate with your words. Like, texting doesn't count. Okay, that's mom as a non-autistic person.

I take care of mom too, she's a patient of mine. They went to Europe for a mother-daughter trip. Mom's like, well, let's just go ask this person over here for help. And the daughter's like, we can't just go up there and talk to him. And mom's like, and then mom realized her daughter didn't mind if she went up and talked to the stranger and her daughter would stay back. But she herself didn't want to go up there. And mom's like, oh! Well, that kind of makes sense because I remember back in high school,

how she'd be kind of shy and nervous about new social gatherings, or the team gets together for a party, and going to a school dance or something. Then they had a layover in Scotland and mom's like, we have an unexpected layover, might be 12 hours, let's go explore Scotland. And the daughter's like, oh my gosh, change, stress, wasn't planned. And mom's like, oh! And then they got back to the States and dad,

who loves electronics, was a handsome stoic kind of guy in high school, football guy even. And now there's homecoming at the high school and mom said, he didn't want to go to the homecoming dinner and didn't want to go to the football game or the gathering. But mom's now like, and that's okay. And I still love my husband and I recognize, well, that's where that autistic gene kind of came from and just recognize that's okay if he doesn't want to come to a loud football game, into a

social gathering and make small talk with people you don't know well. I have one fascinating study that I'd love to share, but what are your thoughts on that? This is kind of going in another direction, but I think it's fascinating and I think it's worth saying, but what are your thoughts or response to that?

Kristen Hovet (1:13:55)
Yeah, I'd love to hear that. And it sounds like, with that example, if neurotypical parents or spouses can just kind of change their thinking, it doesn't take much. It's just like a little bit and kind of sustained effort to educate themselves. It can mean so much, just those little tweaks in understanding. It can change relationships for sure. But yeah, I'd love to hear the study.

Michael Lenz (1:14:23)
Two similar studies. We now understand most people who are autistic also have ADHD, but not all. They did a study in people who had ADHD and people without ADHD and they did a simple study. They said put your hand in a bucket of ice water and we have a stopwatch. Tell us when your hand starts to feel pain, and hold it in there until it's unbearable and we're just going to measure the length of time. What they found is people with ADHD reported pain about twice as fast as those without.

And they pulled their hand out almost three times as fast as those without ADHD. When they asked how bad was the pain from zero to 100 when you pulled your hand out, both groups said it was 90 out of 100. Then they gave the people with ADHD methylphenidate or Ritalin, that's the other name for that. And two hours after they got it, they repeated the same test. And there was a 210 % increase, on average,

in how long they could keep their hand in there before they reported pain. They did the same study, that was in adults, a similar study in middle school, I think, aged kids with and without ADHD, but they did a dolorimeter, which is a pain meter. You push and it gets so many units of pressure, and use it, tell us when, when we put in these pressure points when you report pain, okay? One of the areas, the forehead, they pushed and it turned out people with ADHD, kids with ADHD, reported pain

at about six units of pressure. I don't know the actual type of unit, but it was six units of pressure. And those without ADHD, it took 12 units of pressure on the forehead before they reported pain. They did the same thing as they did with the bucket of ice water test. And they found that when they gave them methylphenidate or Ritalin, two hours later in the forehead, pressure tending, their pain threshold went to 11. So,

treating ADHD, if you have it, which is co-occurring, can help decrease our perception of pain and that sensitivity level into a more of a normal range, and normal meaning that bell curve shifted. Not to the point that you don't feel things, but the distress is more into tissue damage. Because if you hold your hand in there long enough, you could seriously injure your hand and have permanent frostbite, right? If we were stranded in,

I don't know, a glacier in British Columbia and a avalanche, eventually our appendages could get seriously frostbite and we want to get them protected.

Kristen Hovet (1:16:55)
Well, when I was listening to you, I also, I've heard from some people, some autistic people, I don't know if they're ADHD as well, but they talk about having higher tolerance to pain in their perception. I don't know if that's correct or if they're talking about certain types of pain.

Michael Lenz (1:17:12)
That has historically been said that a child might burn themselves on the stove and not know it was injured. And there may be some of that, but there is a study that looked at quantitative sensory testing with heat and showed that actually autistic people did report that. I think one of the more updated understanding is because communicating is different. Because of alexithymia, they may not communicate distress in the same way,

so that could be part of it. And I hear that a lot in my patients who have chronic pain. They will say, well, you know, Dr. Lenz, I have a really high pain tolerance. And then as we get to share and hear the stories more and just listen, I don't jump out and say this, but as the story unfolds, I'll go, you know, earlier you said that you had a high pain tolerance.

Would it maybe be better to say that you have a higher complain tolerance because you've learned to not complain about things because you've already gone through that over the years and your mom said that's just normal to hurt everywhere. You get pain with your periods. Suck it up, buttercup. And so that it's trying to build a little, it's masking in one sense. It's that bravado that say, yeah, I have a high pain tolerance. And if you really knew how much

I'm in pain, you can't tell because I look like I'm okay. And that's often when you're communicating with people who are not autistic in an emergency setting, it may be, I don't look like I'm in distress now, but my pain is severe. Just because I don't look like I'm in distress doesn't mean I'm not in pain because I communicate differently. And you've probably heard that. And often I'll hear that on fibromyalgia sites,

most of whom do not even know that they're neurodivergent, if they are. But they will say that same thing about their interaction with the medical field, and often it's the same people just often don't even know that it's like chronic fatigue syndrome and fibromyalgia. Now we understand they're the same thing.

Kristen Hovet (1:19:23)
I guess the other question too is your book, Conquering Your Fibromyalgia, podcast and book, you said that your book didn't have information about autistic folks and ADHDers?

Michael Lenz (1:19:36)
I had information about ADHD.

Kristen Hovet (1:19:39)
Oh, okay ADHD, but not autistic.

Michael Lenz (1:19:41)
And yet when you look at this, looking back, it was there. I just didn't even know that you should consider the word autism in somebody who had average to above average IQ, who could look at and talk to you like, and mask and that there wasn't even that, didn't even know it existed. So you can't make a diagnosis, kind of a message. You can't make an assessment of somebody if you don't even know that's part of the differential diagnosis. If you can't make

the assessment. I would encourage the listeners, if you get a chance to listen to this podcast, if you get a chance to listen to my podcast, to share it with friends and family. And I think you'll enjoy a lot of this broader perspective. If you're sad that you didn't get diagnosed and helped until you were later in life, recognize Margaret Mitchell, who wrote Gone with the Wind, born in 1900, she never got any help. And

when you look at people who've gone through history and the misunderstandings, there were people who were on track with things in the 1800s, but then they didn't have the support. And I love, again, I love caring for people who are autistic, who have ADHD, who have chronic pain syndromes, who are struggling because it's to offer some real hope and understanding with a real comprehensive approach and

if you are in the Wisconsin area or near Wisconsin, you can make an appointment to see me.

Kristen Hovet (1:21:12)
A huge thank you to Dr. Lenz for being my guest on the Other Autism Podcast. And that's all I have for you today. Thank you so much for being here. Until next time, bye.