Ep. 99 Autism burnout, stress behaviors and the connection to Fibromyalgia. Part 1 of the Interview with Dr. Mel Hauser from All Brains Belong

This is the first part of a 4 part conversation with Dr. Mel Hauser, a family practice doctor who has dedicated her career to helping those with neurodivergent minds. Surprisingly there is a connection between autism and fibromyalgia and related problems which Dr. Hauser and her staff call "all the things." This conversation may be the most impactful and eye-opening interview I have done.  It was an opportunity to zoom out, allowing me and likely you to gain a different perspective of fibromyalgia. For many listening, it will, at a minimum, be validation. Still, for others, it may be the first time you have ever considered much of what is going to be discussed that, at a minimum, will lead to thoughtful contemplation, whether you are living with, loving, or providing care for someone with fibromyalgia and related problems.

Dr. Lenz is an internist, pediatrician, lifestyle medicine physician, and clinical lipidologist interested in helping those with fibromyalgia and related problems go beyond just learning to live with it and even reverse fibromyalgia. He is also the author of the book "Conquering Your Fibromyalgia: Real Answers and Real Solutions for Real Pain. " It is also available on audiobook with Dr. Lenz as the narrator.
If you have questions or topics you would like to have discussed on a future podcast, email Dr. Lenz at doctormichaellenz@gmail.com. You can also share a recording of your question. If you have a question, hundreds of others will likely have the same question. You can also go to Conquerinyourfibromyalgia.com  to learn more through blogs Dr. Len

Joy Lenz

Fibromyalgia 101. A list of fibromyalgia podcast episodes that are great if you are new and don't know where to start. 

Transcript

[00:00:00] Mel hauser: But it was not until, early in the pandemic with physical and mental exhaustion, taking care of patients in the hospital, just really being overtaxed by the strain of all that was happening.

And at that time a job that was a poor fit for my needs and caused me a lot of sleep deprivation caring for patients on call, et cetera, homeschooling, and then three year old anyway, chaos, if you will. And that resulted in something called autistic burnout. And many late diagnosed or late identified autistic adults get their diagnosis in the context of autistic burnout.

the people who come here are people whose needs were not met by the traditional healthcare system. So you have neuro divergent people whose needs were not met by the traditional healthcare system that is going to be a self-selected group of people who are more likely to have all the things.

And I think that what has also been really helpful about that is that we've gotten to learn a lot from the live elevating the expertise of those with lived experience. 

[00:01:01] Michael: This four-part conversation may be the most impactful and eye opening interview that I have done to date. It was an opportunity to. Zoom out, allowing me and likely you to gain a different perspective of fibromyalgia for many listening that. We'll likely be simply validation, but for others, it. Probably will be the first time you have ever considered much of what is going to be discussed. 

 That, at a minimum will lead to thoughtful contemplation, whether you are living with, loving, or providing care for someone with fibromyalgia and related problems Comes.

Here's the preamble conversation with dr mel Houser and myself before we got into the meat of the podcast.

[00:01:53] Mel hauser: I bet. Yeah. I think about in my medical education experience, like whenever there was something would happen and I would like zoom out and say, Ooh, that doesn't feel quite right. Often, when we think about, patients with fibromyalgia and all of the related conditions, like all the judgment and shaming and like ness that goes on in the healthcare system.

I remember even as a medical student being like, no, this 

[00:02:15] Michael: With 

[00:02:15] Mel hauser: like just seeing judgment, like shame and judgment from healthcare providers when you were in training, if you can remember 

[00:02:21] I think there's a lot of overlap and interest, and have said that I'm weird to.

 And I would imagine it'd be like " boy, you diagnose a lot of people with autism. Exactly. And yeah and recognize if a lot of people have 

[00:04:10] Mel hauser: fibromyalgia. Turns out a lot of people are autistic. Yes. , 

[00:04:13] Michael: You treat a lot of adults who have a D H D. Yep. And you treat a lot of kids.

And I end up as similar to you, but probably more from the fibromyalgia spectrum, and I know that I am deficient in. . And not from a lack of desire, but still I'm gonna learn something from you today. I've listened to your videos and interview podcasts and I'm sure that a lot of people will be interested.

This is all coming together from my own patient experience and as a pediatrician and an internist, I get to walk both lines where conditions like autism are classically considered in the world of pediatrics, but hey, gets into adulthood. What happens? Yeah. 

[00:04:48] Mel hauser: What happens to those people when they turn 18 .

[00:04:50] Michael: Yeah. And the same with adhd.

And then there's issues at overlapping fibromyalgia. Classically that middle-aged woman thing. But really, we are working to broaden our understanding. So I am an outlier because I've been taking care of adults and treating their ADHD for 18 years. So I end up taking care of multi-generational families, right?

Once you connect, then they're like and now I feel just if I had a Familialhypercholesterolemic patient or parent, I'm like, all right, you need to get your kid checked at age two. We're not going to wait.

 Just how it's commonly accepted to screen for depression in that's a quality measure. I have taken on to be screening for conditions like ADHD if I discover there are struggles that occur more often are present.I also care for children and adults on the autism spectrum.

And I've gotten a chance to learn through hearing their life experiences and stories.

And I have so many questions for you, like one just off the top of my head is only certain people in the pediatric world can diagnose autism yet I've had patients where I'm like they've been to the behavioral health. They said no, and. Not to be judgmental, but I have a pretty good, just 

[00:06:58] Mel hauser: name the thing.

[00:07:34] Mel hauser: Me too.

I'm never referring a patient for aba, not ever. So it doesn't matter. That's the case, how it is in Vermont. So I name those things transparently to patients and families and I give them options. And then they have freedom and choice and I respect their autonomy with whatever they choose.

But I don't know if that's the case, if there really are state laws that prohibit you as the child's P C P for making that diagnosis or the young adults' p CCP for making a diagnosis. Cuz it may be folklore 

[00:09:50] Michael: This is implied cuz I graduated med school in 96, residency in 2000.

And all of these fibromyalgia and awareness of the autism spectrum have been in development, I think during my medical school to present time are in evolution. 

People with autism, metaphorically using biblical language, are treated like lepers, as outcasts.

As I work to understand autism better,  I'm realizing the recognition and awareness is the rule and not the exception. Now there's another layer that I'm really excited to learn more about from you is that autism spectrum with invisible illnesses under the fibromyalgia spectrum. 

[00:10:43] Michael: This has been a much longer introduction to the podcast series, but we are going to be talking about autism and the connection. With fibromyalgia and related problems. As you will hear Dr. Mel Hauser. Calls these, all of the things. 

I'd love to hear from you, especially if you are one of those who has a neurodivergent mind and. Probably as an adult may have never even been diagnosed. But now as you start to hear what this is all about, make the connection. 

[00:11:26] Michael:

All right. I'm excited to finally connect with Dr. Mel Hauser. She is a family practice doctor and she has some real lived experience working with those who are in the neuro divergent community, both as patients and within her own family and within her own self. So welcome to the podcast. 

[00:12:41] Mel hauser: Hi. It's great to be here. 

[00:12:43] Michael: So awesome. There's so much to talk about today, and what's interesting is that many people who have a neuro divergent style nervous system in mind also have some coexisting chronic pain, fibromyalgia related issues.

I hope to grow and gain some greater insights. Before we dive into that, can you just tell us more about your background? 

[00:13:12] Mel hauser: Absolutely. 

I'm a family doc and as you said, caring for neuro divergent patients across the lifespan. And 15 months ago I founded a nonprofit organization called All Brains Belong which is a community health organization in Vermont that provides neurodiversity of affirming medical care, but also a wide range of community and education programs all aimed at China, make life better for neurodivergent people.

Maybe what I also could say, just in case that term neurodivergent is new for folks, maybe I can just describe what I mean by that. So when I use that term, I'm referring to the one in five people whose brains work in ways that significantly depart from the ways that society has deemed typical. And since folks are listening, not watching, I'm using air quotes when I say typical, because I don't think there is a typical brain, although society really does give people that message.

So anyway, some neurodivergent people have specific diagnoses such as ADHD, autism, dyslexia, dyspraxia, et. cetera. But most do not have specific diagnoses. For the past six years or so working in of the last chapter of traditional primary care, my practice has focused on supporting neurodivergent kids in adults, often multi-generational families.

And what I saw is that those. We're not having their needs met, both in healthcare and outside of healthcare. Kids were getting bullied in school and struggling to have their access needs met. adults struggling to access employment, struggling with social isolation, and really people of all ages getting not their needs met by the healthcare system.

And I think so much of this also relates to the defaults to society. To become a patient, you must fill out the 20 page packet to make an appointment, you must pick up the phone. In school you must sit in the chair with your hands folded, just like all these defaults.

But there's not a default brain. And so there's just a lot of barriers to access and a lot of othering. And then, when I became the parent of a multiply neurodivergent child who's six now I, it, the urgency really set in that I needed to do my part to really shift the broader community conversation on neurodiversity and inclusion.

And to break free of the restrictions imposed by the traditional healthcare system. And the idea of zooming out, re-imagining what health is, it's not just medical care in the office. Health is community health is making friends, health is accessing your education.

Health is accessing your employment health is showing up authentically as your true self. And for some people, feeling safe for the first time. 

Great. What about yourself in your own career?  you ended up somewhat surprisingly, bet you walked into finding out you had a neurodivergent brain.

Yeah. When it's interesting, like before I gave birth to Luna, here I am a family doctor, like taking care of babies, had expertise in child development. I thought I new, what I was doing. I did not know what I was doing. Turns out. And Luna made it really clear that I did not know what I was doing and that my medical knowledge was really lacking.

I, to my knowledge at that time, I was not aware that I had taken care of an autistic infant before. I, of course have many times but didn't know it. And I really learned about the things, the practical day-to-day life that involve adapting the routines and environments for Luna to thrive.

And that's really how I learned most of what I know about brains. And along the way I learned that I have a lot in common with Luna turns out. But it was not until, early in the pandemic with physical and mental exhaustion, taking care of patients in the hospital, just really being overtaxed by the strain of all that was happening.

And at that time I was in a job that was a poor fit for my needs and caused me a lot of sleep deprivation caring for patients on call, et cetera, homeschooling, and then three year old anyway, chaos, if you will. And that resulted in something called autistic burnout. And many late diagnosed or late identified autistic adults get their diagnosis in the context of autistic burnout.

Where that state of physical and mental exhaustion really coming from years of being severely overtaxed by strain. And so at age 37, I learned for the first time that I was ADHD, six months before the burnout got worse and then I got my autism diagnosis. And the great irony is that unfortunately many adults or just many people you know of all ages don't get there because the DSM criteria for autism are autistic stress behaviors.

And the more disabled by the environment you are, the more stressed out you are and the more likely you are to appear more stereotypical dsm criteria. 

So anyway, that's what happened to me and that's how I got my diagnosis. And then later that year I also learned that I'm dyslexic, dyspraxic and dysclaculic.

Yeah, that would've been really good information to have 37 years ago. 

[00:18:15] Michael: All right, smart people can't get through med school. 

[00:18:24] Mel hauser: Myth. And so I think that's interesting.                                                                          I mentor many neurodivergent medical students and it's just the ways in which the medical education system drives masking behaviors.

And by masking, I'm referring to the often involuntary covering up of your true self. There's this narrative of fake it till you make it. And it's so much imposter syndrome, but it's really so hard and I look around and it looks like no one else. It's not, doesn't look hard for anybody else.

Turns out, it's hard for a lot of people and it's hard in a lot of similar ways to other people. But no one talks about that.                          

[00:19:00] Michael:

for sure. Masking and the effort it takes to get through. And you had a lot of gifts. areas, obviously to get through medical school. And it had a lot of drive and it's a blessing that you got through cuz you are now helping people. You didn't know that you were going to be helping people in this way when you started. Your answer to the med school interview question, why do you want to be a doctor wasn’t

“I want to start a neurodivergent clinic in Vermont? , if you would've seen the future, you would've been like, what's neurodivergent.

[00:19:37] Mel hauser: But I wouldn't have known that. And I think when we think about fibromyalgia and the overlapping medical conditions, so I think the other thing that, that really surprised me, not even we, if we think to back in the day starting my medical training 20 years ago it's even a year ago, I would've been surprised by this, which is that 70% of my practice has a pattern of multi-organ system neuro immune conditions related to connective tissue, mass cell activation, hypermobility, spectrum, fibromyalgia, dysautonomia.

We refer to this around all brains belong as “all the things” because mostly all the people here have all the things. And amongst the neurodivergent adults, 95% have all the things. And when, I knew that each of these conditions, including fibromyalgia, is more common in autistic people and ADHD people.

But I guess the pattern was diluted. In general primary care, the people who come here are people whose needs were not met by the tradition al healthcare system. So you have neurodivergent people whose needs were not met by the traditional healthcare system that is going to be a self-selected group of people who are more likely to have all the things.

And I think that what has also been really helpful about that is that we've gotten to learn a lot from the lived expertise of those with lived experience. And so we've had a year ago we formed a community task course of multidisciplinary clinicians and patients really try to better understand not only what are best practices but what are things that are harmful in the setting of all the things.

Because for example, when we have internal conflicting needs. For example, if I have POTS and I need compression socks, but I also have extra stretchy blood vessels, now my feet are purple. Thanks. So I have to figure out, or if I need stimulant for my ADHD, I now I have more brain fog.

Now I, cuz I'm days of constricting and I'm not getting blood flowed in my brain and the way that I need it. I need the dopamine, but I also need blood flow. So it's it's this really interesting balance of internal conflicting access needs.

[00:22:19] Michael: Very interesting, very intricate, very multi-directional and a lot of back and forth feedback going through all of these different organ systems.

What was a timeframe when this started to click for you? That these were all connected? 

[00:22:40] Mel hauser: Yeah. It was before I quit my job actually. I started to see it toward the tail end of my time in traditional primary care and it all started for me actually. it was summer 2021 and I had seen a a lineup of adhders who had signs and symptoms of sleep apnea, which of course is known to be more common in ADHD and autistic people. And I looked in their mouth and I saw that they all had ob to me, obvious tongue ties.

And I said, oh, that's interesting. And I know that tongue ties are also associated with sleep apnea. I also know the tongue ties are connected to autism. And I was like that's interesting. Anyway and these young healthy people who grind their teeth and are exhausted and everything hurts.

I sent them off for sleep studies and they all had sleep apnea. thought I was just doing like my due diligence of being thorough. I didn't actually think they all had sleep apnea, but they all had sleep apnea. So then I made my doctor send me. I think this actually was maybe, yeah, I think I had just gotten my autism diagnosis and I made my doctor send me and at first they were like, what are you talking about?

You don't have sleep apnea? What are you doing? Oh, can you just send me, yeah, I have sleep apnea. good information anyway. So in my mind, the connection was around the shape of the face. I said, is it possible, like autistic,  ADHD people all have long faces with high arch pallets, narrow airways, that's new information.

 There was actually a case report the late nineties published about the the dental jaw hung pal features of autistic people. Anyway, like I'm not the first person to spot this. I did not make it up. So that was how it all started.

I said, oh, okay, that's interesting. And then of course, there's literature on each piece of this. So migraine and autism, fibro, imagine autism, dysautonomia and autism. And, adhd. I think about autism and ADHD as overlapping Venn diagram circles with a pretty large middle sphere there. Anyway, so there's literature on each piece of “all the things” connected to autism and ADHD and the zooming out came when I started this practice. More and more neuro divergent adults whose needs were not met by the traditional healthcare system.

They all had this much bigger picture. And in fact my practice filled up six weeks in, so I had to hire a second medical provider. And I said, I'm worried that I'm biased. I'm worried that I'm seeing things that are not there. I'm just gonna not see any new patients for seven months. And she said no, no, all the people have all the things.

 And so we screen all our new patients. A lot of people come here cuz they know they're neurodivergent and they're looking for neurodiversity affirming healthcare. But that's not actually even most people. People come cuz their physical health needs are not met by the traditional healthcare system.

And amongst those people, they are far more likely to have all the things. And if you have all the things, you're far more likely to be neurodivergent. So it's like the pathways to adults discovering their true selves and how their brain works. I think that, their autistic burnout, as I said, is a common pathway to being diagnosed.

The other thing in common with my journey, my child is found to be neurodivergent. So I learn about brains and I learn that I have a lot in common. And so I start wondering about my own brain. So that's a pathway. And then this third pathway of, I have all the things.”

[00:26:16] Michael:.

That's where we will. And this week's episode, we will continue the conversation with Dr. Mel Hauser over the next several weeks. Some key points that we discussed. Include autistic burnout. That's when many who have autism are no longer able to compensate or mask and then start having a lot of these fibromyalgia and related invisible illnesses. 

We talked about how the DSM criteria for autism are based on stress behaviors in that often there's a lot of masking that hides the symptoms until much later. 70% of her practice actually has these multi organ neuroimmune conditions that she refers to as all of the things which are synonymous with fibromyalgia, and related issues and 95% of her patients who are neurodivergent Have a cluster of all of the things. 

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Until next week go team fibro.