[FLASHBACK] Episode 15: Exploring the Intersection: Neurodivergent Experiences and Chronic Health Conditions featuring Dr. Mel Houser
Jan 11, 2024
Show Notes
Do you ever feel like your immune system is working against you? You don’t know what’s wrong, no one else knows what’s wrong, you keep doing medical tests and it’s coming back normal or the pieces don’t add up.
Autistic people often experience a myriad of chronic health conditions and nervous system dysregulation that leaves us feeling terrible, overwhelmed, and with tons more questions than answers about what’s going on with our bodies.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Dr. Mel Houser (she/they), an autistic family physician, about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome (MCAS), the connection between Autism and nervous system dysregulation, the struggles with the healthcare system and getting treatment for these symptoms, and the importance of becoming a “detective in your own life.”
Top 3 reasons to listen to the entire episode:
- Understand the role that daily experiences play in potentially triggering health conditions or pain through nervous system dysregulation.
- Uncover the complexities of living with neuroimmune conditions like ME CFS and mast cell dysfunction.
- Learn how to get support to address the unique challenges that neurodivergent individuals face in accessing mental health and medical care.
More about Dr. Mel Houser:
Dr. Mel Houser (she/they) is an Autistic family physician with a clinical focus on providing primary care for neurodivergent patients across the lifespan. She is the Founder and Executive Director of All Brains Belong VT, a nonprofit 501(c)(3) organization in Montpelier, Vermont that uses universal design principles to provide neurodiversity-affirming medical care, social connection opportunities for all ages, and neurodiversity-related educational training. At age 37, Dr. Houser was diagnosed as autistic, ADHD, dyspraxic, dyslexic, and dyscalculic. She is also the parent of an autistic 6-year-old, who is her guru of so many keys to the universe.
- Website: https://allbrainsbelong.org
- Instagram: @allbrainsbelongvt
Check out All Brains Belong’s new project: Everything is Connected to Everything: Improving the Healthcare of Autistic & ADHD Adults provides health education resources to support people with this constellation of intertwined conditions, as well as strategies for discussing the project with medical providers. There is also a Clinician Guide with a combination of evidence-based practice and the lived experiences of more than 100 Autistic and ADHD community members.
Here's the link to the project: https://allbrainsbelong.org/all-the-things
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Transcript
PATRICK CASALE: Hey, everyone, you are listening to the Divergent Conversations Podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale.
MEGAN NEFF: And I'm Dr. Neff.
PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening.
MEGAN NEFF: Well, Mel, I was so excited when you reached out to me over email. Patrick and I have been talking about how we just keep getting sick. I've been dealing with long COVID. And we've been saying probably for the last four weeks we've got to do an episode on health.
So, you're an autistic physician, this is your, like, specialty. I'm so excited you're here. Before we started recording, I was talking about like, "Oh, we don't do bios." Which I actually love. It feels more organic. But it does put a little bit more pressure on you to explain to the audience who you are and give us context.
So, can I hand it over to you to give us some context of who you are, why this conversation is important to you around autism and health?
MELISSA HOUSER: Definitely, and thank you so much for having me. So, yes, I am an autistic physician. I am the founder and executive director of a nonprofit in Vermont called All Brains Belong. We provide neurodiversity-affirming medical care, in addition to social connection opportunities for kids and adults, plus, community education.
And in my medical practice, I am providing medical care, both primary care and additional support for the conditions that we'll talk about today for kids and adults. And so, not all of my patients are neurodivergent but most are. And the majority of my autistic and ADHD adult patients suffer from a constellation of related medical conditions. And the problem is that not only do many medical providers not know that these conditions are related, the standard management of some parts of this constellation, and in my practice, we would really call it all the things because mostly all the people here have all the things, so…
MEGAN NEFF: I love that, all the things. That's a good hashtag.
MELISSA HOUSER: Yeah, so the standard management of some parts of all the things make the other parts of all the things worse. It's like internal conflicting access needs.
MEGAN NEFF: Absolute, I love how you unpack that. A lot of the folks I work with and myself included will talk about that of like, well, I could do this medication for this diagnosis, but then, this other diagnosis I have is going to be negatively impacted by that treatment. So, it's like this wacky mole of health conditions.
Yes, so having a provider who can do the zoom out which Western medicine is not historically great at, the, like zoom out, let's look at this whole body, and how its integrated. I get the sense you're absolutely doing that. I love the language of constellation. I feel like that is a really integrative way of thinking about it. I'm curious what you would say are some of the like, big planets in the constellation. Also, I love how we're like co-creating a metaphor here as we [CROSSTALK 00:03:51]-
MELISSA HOUSER: I love this. Yes, like, yes. So, I've been thinking about these "planets" as like buckets. So, this constellation includes something in the allergy immunology bucket, something in the connective tissue bucket, something in the gastrointestinal bucket, something in the sleep bucket.
MEGAN NEFF: That's that.
MELISSA HOUSER: Yeah, great, right, right, yeah. Something in the nervous system or neuropsychiatric bucket, something in the metabolic or vitamin absorption bucket, and something in the dental face and jaw bucket. And-
MEGAN NEFF: Oh, that's a new one. I didn't know about that.
MELISSA HOUSER: Yeah, yeah. And so, one of the things about this is that many people go often decades with like, maybe some like prodromal mild symptoms, and then because these are all neuro immune conditions, meaning they impact the nervous system and the immune system, and like the system's crosstalk, the mast cells, which we can talk more about, anytime the neuro immune systems get triggered by something, whether that be infection like COVID, for example, or surgery, or a concussion, or like, you know, trauma, you know, physical/emotional trauma, any kind of trauma, like these, or pregnancy, or menopause, or like just any trigger to the neuro immune systems, these conditions can get worse and for many people, they can get a lot worse.
MEGAN NEFF: So, not that I'm going to treat this like a consult, but this feels like a consult question. So, for me, I had two very complicated pregnancies as well as two pregnancy losses. So, pregnancy, that whole season of life was difficult for me. But both of my two labors, complicated and did C-sections, my recovery to C-sections was brutal. And I always attributed that to the fact that I'd had a 36-hour labor and uterine infections. But based on what you're saying about surgery, is it possible that my difficulty coping post-C-section was actually related to organic things going on related to being autistic?
MELISSA HOUSER: That is certainly possible. And in my practice, we see surgery, both from… there's all these different aspects of surgery, that's like a whole other podcast episode maybe. But like, when we think about, you know, aspects of connective tissue, for example, many autistic ADHD people have a condition called Hypermobile Ehlers-Danlos syndrome. So, like. wound healing from a connective tissue standpoint. Like, we just maybe don't heal well. And then, like, again, the autonomic nervous system aspects of, you know, maybe there's an impact in like blood flow, and maybe there's an impact in like, blood pressure, and heart rate, and like, all these things. Yeah, all of it, it's all related.
But I think the take-home point is that everything's connected to everything. And I think patients know that. It's the medical system that's so like, fragmented and siloed with like the body parts are treated as separate entities, but like, we know everything's connected to everything.
And you know, I love, Megan, you're talking about zooming out. You know, it's kind of like, you know, like on Google Maps, and you're so zoomed in, you don't even know what [INDISCERNIBLE 00:06:52] that you're on. Like, that's what goes on in healthcare.
PATRICK CASALE: Yeah, I think this is such an important topic because so many medical professionals don't look at it in that perspective, or are not neurodivergent affirming, in general. And that [INDISCERNIBLE 00:07:08] to impact everything in terms of even like seeking out treatment, seeking out support, being comfortable disclosing your own autistic diagnoses sometimes can feel really challenging and triggering as well.
I was telling Megan, like, I'm 36 years old, I can remember being sick all my life, like getting mono at super early ages, in like second and third grade, being out of school a lot. And now my career has taken me to a place where I travel pretty often, and I'm sick constantly, whether it's upon arrival, or when it's upon landing, and coming home. And the immune system just feels like it can never catch up. And I just started to think about how much association there was between the way an autistic nervous system and body heals and recovers, and also, responds to stimuli, and just responds to immunity, in general. And it's just fascinating to start thinking about it from this lens.
MELISSA HOUSER: Yes, and a good search term is myalgic encephalitis chronic fatigue syndrome, MECFS. So, MECFS is this really complicated neuro immune condition that impacts multiple organ systems. It's part of the cluster, it's not its own thing, it's part of it. You know, and many people, for example, think about long COVID as being MECFS triggered by COVID. And the thing about MECFS that's really important, and, you know, patients with MECFS, which is, like, for any people's triggered by illness, you know, doesn't have to be COVID, it could have been like, you know, Epstein Barr virus, which is the virus causes mono, like you're saying, you know, Lyme. There's like all these things that kick off MECFS.
And what we know is that one of the common hallmarks of MECFS is something called post-exertional malaise, PEM. And PEM is the consequence of, like you just said, the body doing too much. So, you tell me the story of every time you go do something too much your neuro immune system responds. And what happens is if you push through post-exertional malaise, it actually prolongs recovery. And so, and this can be, you know, physically pushing through, this can be emotionally pushing through, a cog really pushing through, and like you think about it, like, that is daily life for many neurodivergent people to survive in this world that is not built for us.
PATRICK CASALE: Yeah, Megan and I talk about that constantly about the fact that we're both very privileged to work from home, to work for ourselves, to have a lot of privilege in terms of employment. And I think about it, like, I'm intentionally placing myself in situations that are going to make me feel this way, but a lot of people don't have the choice, and have to go to work from a 9:00 to 5:00, or have to show up in large communities of people, and just thinking about how much impact that has on both the body, the immune system, and the nervous system, and not just feel pretty constant, and feeling like there's not a lot of escape from that in a lot of ways, either, in terms of recovery.
MEGAN NEFF: Mm-hmm (affirmative.)
MELISSA HOUSER: Yes, yes. And like when you think about, like, zooming way out, when viewed through an equity lens of like who gets to show up in society. And so, you have these layers that we might talk about like a lack of neuro inclusion. But like, if you don't have, like, the privilege of autonomy over like the safety of the air you breathe, or like whether you, in fact, are forced because as a survival requirement to put yourself in situations that harm your health, and there's so many layers of that.
MEGAN NEFF: I think what really complicates it, you know, when I hear you talking about MECFS or some of these other conditions, these are not conditions that are well recognized by most doctors, and so, the experience, and then, especially, if you're a high masking autistic or ADHD person, the experience of chronic invalidation from the medical community that a lot of us experience of like, "There's something wrong with me, I'm tired."
Like, I remember what I was at the height of my fatigue, I had gone to a naturopath who was like, "Your adrenals are…" Like, "You're producing cortisol of an 80-year-old woman." And I was 31. And I went to my Western doctor, and I showed her these, like hormone tests, totally dismissed. And then, she's like, "Well, you seem kind of emotional." Because I was really anxious talking to a medical provider, "How about we start you on an antidepressant?"
MELISSA HOUSER: Hashtag health care, right? Like, this is what goes on.
MEGAN NEFF: Yeah. So, that, like, chronic diffuse, just feeling of unwell paired with chronic invalidation is just, I'm trying not to swear, but like, I will swear here, it is a mind fuck.
MELISSA HOUSER: Yap, yap. Amen to that. So, you know, it's really hard. And I can send you a recording from a free educational that my organization put on last month about the health care system, and like, everything you just said. And so, we had a panel of clinicians, medical clinicians talking about, like, the system.
So, a lot of times it's not the individual healthcare provider who's like setting out to, like, thwart and invalidate the patient. It's the system is thwarting and invalidating the clinicians, which, like, interferes with full access to one's cortex to like perspective taking, you know? What's the consequence of saying that thing right now to that person? Like, it's everything.
MEGAN NEFF: I love that Mel. So, I think an unfair burden gets placed on the providers, and the clinicians, and people don't often realize. So, I used to work in hospice, people don't often realize like, these medical providers are so booked in their days and like, it is like the system, like there's a reason so many medical providers are experiencing burnout, moral injury is so elevated in the medical community. So, this is not like medical providers being terrible humans, this is a much, like, the context around this is so much bigger, and I appreciate that you could bring that in.
MELISSA HOUSER: Yeah, like, it's, you know, healthcare system is the villain, not the individual people within.
MEGAN NEFF: Right, right. They've got 20 minutes with you, like 20 patients that day, and yeah.
PATRICK CASALE: And if we're being honest, most of the medical model is set up to just treat symptoms, right? Like, we're treating symptomology. We're saying, okay, if this is what you're explaining, and experiencing, this is how we fix it and alleviate it. And for autistic, or ADHD, or any neurodivergent human, it's so much more complicated than just saying, "Oh, Megan's emotional right now, let's start an antidepressant."
Like, that's just a quick band-aid fix that does not actually zoom out, as we're saying, and take into consideration everything that's going on behind the scenes. But if you don't have time to take in to consideration everything that's going on behind the scenes, it's a double-edged sword. It's like where do you fix the problem? And how do you alleviate that?
I was telling Megan, yesterday, I have a healthcare collective that I'm a part of here in Asheville. And my PCP I think is quite open-minded, and really wants to be holistic, and integrative, and perspective. I sent her Megan and I episode on neurodivergence and sleep because we were talking about feeling dismissed when you go in and talk about sleep. And the issue is like, "Have you tried mindfulness? Have you tried relaxation techniques? Have you tried this? Have you tried this?"
And we're like, yes, we're fucking autistic. Like, I've researched everything under the sun that could help me sleep more than two hours a night. I promise you, anyway. She messaged me yesterday and was like, "I listened to your episode. I can't believe how dismissive I came across. I'm so sorry for that. And can you help me navigate how we can better understand how to help you sleep and rest?" And I thought that was so unbelievably validating. And I was like, "Okay, I can see this person and feel really comfortable here."
MELISSA HOUSER: I mean, this person cued safety right there? Like, "Oh, I just got chills." Like that, yeah, right. There are people who get it and can come to get it. So, and I don't know if this will air, or when this will air, or whatever but All Brains Belong has for the past year, we've been creating a free resource both for patients and for medical providers to different versions about this picture of all the things to just like be available of like, here's, you know, what's going on, here are some things that might help.
And it has been about really bridging the double empathy problem, where, you know, when we think about, you know, the questions, or even the style, the way of clinical interviewing that medical providers are trained in, like, does not work for all brains, right?
So, like, the medical writers are often not getting the information because they're not able to elicit the information. Like, the patients will tell you what's wrong, if you can, like, cue safety, and allow people to have access to their own cortex, to communicate in their own way. And we did focus groups of autistic adults, about like the words they use to describe their experiences. And so, that's all like built in to the tool. And so, like, when it's out, it'll be out like, maybe in like, three weeks. You know, I can send it along.
MEGAN NEFF: That's amazing. That is like one of the top requests I get is, can I have like a one-page handout to help me advocate with my medical providers? I'm so glad you've created that or are creating that. We'll absolutely link that because I think that'd be a really helpful resource.
I like how you keep going back to cueing safety. I had a medical appointment last week and it's interesting. I'm not emotional. I've talked about that on this podcast. The one place I cry is in medical offices. Like, it's not intense, but it's like I'll say something vulnerable. And I think it's because I'm so prepared and scared about being misunderstood that it is really like the one place I cry.
MELISSA HOUSER: Yeah, I know, that resonates with me a lot. I, in general, don't seek a lot of health care for all the things. I have all the things also-
MEGAN NEFF: [CROSSTALK 00:17:54].
MELISSA HOUSER: Yeah, except very health care avoidant, right, exactly. But, yeah. Yes, like your nervous system is like, it's a trauma response, right? It's just, you know, you're waiting for the next hit.
MEGAN NEFF: Yeah.
PATRICK CASALE: Well, Megan and I have also talked about, you know, as mental health professionals how often autistic adults or adolescents, young adults won't come into a therapy room and say, "Hey, I'm autistic." And therapists will then say, "I don't work with autistic people, this is not my area of expertise." And refer the person out the door. And how invalidating and dismissive that is.
So, if we take that in the mental health realm, and then, go into the medical world, there's almost this additional layer of fearfulness and vigilance around disclosure, and feeling safe, and feeling like you have to prepare to be dismissed or misunderstood, or you already feel dismissed and misunderstood in most areas of your life. So, it really does complicate seeking out treatment and support.
And I think myself, like, talking about just chronic health conditions, people in my life, you know, especially, like family members, or friend groups, or probably like, this is all hypochondria, like this is like you're sick all the time, there's always an issue here, like there's always something going on. And that can feel really invalidating and shame-inducing as well to constantly feel like, I always feel this way and I wonder what it would feel like to have a week or two where you're like in optimal health as a 35, 36-year-old human being.
MEGAN NEFF: You know, one thing I've said my whole life pre-autism discovery was I just wish I could have a day in someone else's body. I just want to experience it. And I think it's because it's like, I don't feel like what I'm feeling is what other people are describing, but I don't know that because I only have my subjectivity. So, that's been my fantasy since I was a child, can I just experience someone else's body for 24 hours?
MELISSA HOUSER: Yeah, so what our model at All Brains Belong is that connection is the path to health. So, we do a lot of group medical appointments, for example.
MEGAN NEFF: I love that.
MELISSA HOUSER: So, not only do we have this piece of like, I learned for the first time that I'm autistic and/or ADHD, but I'm also like, I have this thing, and it's called all the things. And the thing you've been saying was happening, it has been happening. And guess what, there's like a ton of other people who are experiencing this also, and you have fun together, and you learn together, and you learn how to adapt the environment, and the routines, you know, to meet your access needs and, you know, be promoting neuro immune health.
MEGAN NEFF: I love that, I love that, this community of all the things. Okay, I'm going to ask a question, and if you're like, no, I just don't want to go there, like just-
MELISSA HOUSER: Okay.
MEGAN NEFF: …tell me. I noticed the first few years or the first year of entering autism advocacy space, I was really cautious of talking about anything related to gut health, nutrition, because for so long the message was, if you cure your gut, you will cure autism. And so, I wanted to steer so clear from any of those reductionistic stories of autism of this health thing or like if you cure your nervous system, you cure autism. I've heard that too.
So, that nuance of autistic people are more vulnerable to a ton of health conditions and supporting it supports our well-being, and no, we're not trying to cure autism, that sort of middle line of here are some things you can do to support yourself. Like, do you ever experience tension around that or?
MELISSA HOUSER: Yeah, no, it's interesting. I, like, sick mono-tropism. I, like, forgot to experience tension around that because I like experience tension by so many other things. So, I would say that it's not that these neuro immune conditions, like I read this book about like, some component of all the things that was talking about, you know, it had like a curative narrative, and it was gross. Anyway, whatever, I won't even like name the book.
But it is worth like throwing that narrative out, like I am autistic, I have always been autistic, I always will be autistic. And in fact, it is the fact that I am autistic that allows me to zoom out and see the whole pattern because that's, like, what my brain does, right?
So, it's that. These patterns are more common because of the way that we're wired. And most of the environment is unsafe, it's the environment that's unsafe. And so, that is why we're going to have a dysregulated autonomic nervous system, we're going to have a dysregulated immune system, we're going to have mast cells, which are a type of immune cell that like crosstalks between the nervous system, and the immune system, and the soft tissue, there's mast cell receptors on every organ system, like, so it's a good search term because that like managing your mast cells is like part of how you support this cluster.
And it's not because we're trying to like, not be autistic anymore, we're trying to like, not be in pain, and we're trying to not have a blood pressure plummeting, we're trying to not have you know, trouble breathing, we're trying to not have a GI tract that's completely flipping its lid all the time when we eat. Like, that. So, I would just name…
MEGAN NEFF: Yes, I love that. And then, this is where also like mental health, right, so many of the things you just named are going to cause mental health issues, right?
MELISSA HOUSER: Of course.
MEGAN NEFF: A dysregulated nervous system, fight/flight anxiety. So, for therapists like Patrick and I, you know, we aren't typically trained to look for, like nervous system dysregulation as the cause. So, we'll go straight to like, here's some emotion regulation strategies. Not that those don't have an impact on nervous system, a lot of emotion regulation strategies are downregulation strategies, but I find adding an element of nervous system work in therapy for autistic people is so important.
MELISSA HOUSER: I would add to that because like, what you're both bringing to the community is so critical because, you know, not only do we have patients who are seeking mental health support from like, neuro normative therapists that are like, you know, pointing out their irrational thoughts or something, but also, we bring this layer now, in the context of all the things that not only is emotional dysregulation, you know, equal, nervous system dysregulation, actually, making the mast cells more pissed off, actually, impacting the immune system.
But the other way goes too, so if you have, you know, for example, where I am in Montpelier, Vermont, there was just really devastating floods. So, like, everything is wet and there's all kinds of crap in the flood water, and so, you know, a lot of people's mast cells are flaring. And so, what they may feel in their bodies may not be, "You know, I feel my mast cells." Like, they just feel terrible. They don't know what kind of terrible they feel because it's not like one or the other, it's everything because everything's connected.
MEGAN NEFF: Okay, so my internal clock just went off around how long we've been talking. And one thing I'm trying to be mindful of is as much as we talk about some of the hardships and the challenges we experience around navigating healthcare, I also want to have some words of encouragement, or empowerment, or just really practical advice that people can take away. So, I'm curious, kind of, what do you recommend to people, if they're listening to this, and they're like, "Oh, my goodness, I think maybe I've got all of the things but I didn't realize it." Like, what's next steps for them? Especially, if they're struggling to navigate with their medical team, things like that. Like, where do you start with people? What are some of your recommendations?
MELISSA HOUSER: I think, like, first step is to figure out that this cluster or this constellation of related medical conditions may apply to you. And, you know, first off, I need to say the disclaimer that of course, this is like general education, this is not medical advice. But like in general, what people find helpful is first step to recognize that this pattern applies to them, and then to learn about the pattern because a lot of what we talked about earlier were some parts of the management of all the things, maybe other parts worse. A lot of times people know that, they know it about themselves, and there's also a ton of information out there amongst the neurodivergent community. They may not know it, they may not like, you know, know that all these conditions are connected or, but a lot of people do because they feel it in their own bodies, and there's a ton of information.
And I think what we've tried to do at All Brains Belong is like, synthesize all that information and put it in one place. But I think figuring out the things that make you feel better, that don't make you feel worse, like stopping the things and working with, you know, your personal medical provider to, like, figure out what are the things that I'm doing that might be making this thing worse, eliminating those things that are maybe making you worse, you know, is the first step I think.
And a lot of times, especially, you know, I would say like, if you're going to pick like one search term, I would read about mast cell activation syndrome, MCAS because if you can understand mast cells, this is a cornerstone of this constellation.
MEGAN NEFF: So, I actually went on a rabbit trail a little earlier this year, and I was like, "Oh, maybe this is the missing thing." I've then, like, took a one-hour course on it. And like, in the course, the provider recommended a ton of vitamins. But I walked away from the course and I was like, "I don't actually know how to implement this or start."
MELISSA HOUSER: Yeah, yeah, yeah. And I think, like, figuring out what your triggers are is the most important thing. And so, like, I'll give a personal example, sometimes when I do podcast interviews I shut off my air purifier because it makes a noise, and then, I feel terrible afterwards, and then, I'm like, "Huh, I think it took like the, like, sixth or seventh time over the past year." And I'm like, "Really, it's every podcast interview, what is that? I'm not stressed out." Like, I shut the freaking air purifier. There's something in the air that my mast cells are responding to. So, like, you have to be like zooming out, you feel like zoom out on your day, on your week, on your month, and like, identify these things, there's no test. Like, there's going to be no test that says, "You know, my mast cells are pissed off by something in my office." Like, we're not going to have that. It's like being a detective in your own life.
Or I've never had a problem with dairy, but after I had COVID I can't eat dairy anymore. It took me like a few weeks even to be like, "Wow, I feel so terrible." And I realized that's what it was. And so, yes, you know, there are a variety of medications and supplements that can be helpful, and like, you know, life-altering for many people in the context of all the things. But trigger elimination is really important.
MEGAN NEFF: I love that idea of become a detective in your life.
PATRICK CASALE: My mind immediately goes like to the cynical place, though, like when it's all the things, and then, you're like, I have to identify all of the triggers and all of the things. It feels very overwhelming. So, I think for our audience, like, one thing at a time, you know? Try really hard to start small. So, that's a good example of having like, major throat surgery this year, and still being impacted by it.
MELISSA HOUSER: Sorry to hear that. And possibly related to all the things, right? So, yeah. The other thing is, Patrick, you brought up sleep a little while ago, that is a critical starting piece as well. When I listed the different buckets or like Megan's use of planets, you know, one of the things I listed was face, teeth, jaw. So, many of us we have long faces. You know, we have more of an oval-shaped face as opposed to a round face, right? Like, the three of us, like, look at our long faces. And so, we have, therefore, a narrower airway.
And if we also have Hypermobile Ehlers-Danlos, for example, we may have a high-arched palate, her palate though that like also is making the airway more narrow. And so, there's like extent, I should have said this earlier, each piece of all the things is known to be more common in autistic people and some of which are known to be more common ADHD which, of course, are like, you know, almost superimposed Venn diagram circles, right?
But the idea being that, you know, these pieces are known by healthcare, but they're known as pieces, not as a whole entity. So, like, yeah, you might say, yes, you know, I know that obstructive sleep apnea, for example, is more common in autistic people because that is known, and having, you know, obstructive sleep apnea is more common in people with long faces and higher arched palates, that's known. Obstructive sleep apnea is more common in people with Ehlers-Danlos Syndrome, that's known. Put it together, zoom way out, this is one thing and a lot of us have sleep apnea.
And so, you know, in my medical practice that is a starting place in many people, is identifying what's going on with sleep because it is so much bigger than like, like the examples you gave Patrick of like, you know, do you have a bedtime routine? Like, this is neuro immune, right? So, that is what I have to say about that. Fixing your sleep is essential and like if you don't fix your sleep, it's very hard to get the rest of all the things better.
MEGAN NEFF: Yes, I talk about that a lot, too. Same thing for mental health, it's like well, if sleep's off the rails, let's start there. Okay, so now I'm super curious, one thing that I hear and know is also common among autistic people is our voices tend to be raspier or just have a different tone. Like, both my kids have done speech pathology. I know and I talk more from my throat, so I've kind of a raspy voice, is that connected to the like high arch, and what you were just describing about throat jaw stuff? Or is that a different mechanism?
MELISSA HOUSER: That's really interesting. I've never been asked that question before. That's a pattern I certainly see a lot and that I personally experience. And I wonder… I would imagine, I'm just like speaking off the cuff, I have no, like, literature to support what I'm about to say. But it's probably multiple things, right? So, raspiness might be because there's like mucus on the vocal cords because there's mast cell dysfunction. And so, you know, like, the allergic responses to things in the environment, so that might be playing a role of it.
There's also like the dyspraxia component of like, ineffective or inefficient motor plans of like, when I speak, you know, I'm using, like, all of my upper body at the same time. I'm turning all of it on because like, that's how I learned to do it. So, I keep doing it this way, at almost 40 years old. Or, you know, if I have, you know, Hypermobile Ehlers-Danlos syndrome, and I'm working harder to hold myself upright, my diaphragm might get stuck, and I'm using my neck muscles to breathe, and so, these muscles get really tight, and so, that tension may be impacting, you know, vocal cord usage. Anyway, I would imagine it's like many, many things that are connected to all the things because everything's connected to everything.
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: So, it's blowing my mind. I'm like, I wonder if my [INDISCERNIBLE 00:37:34] is diverticula? [CROSSTALK 00:37:36] 65, that's a whole conversation that we can go into, but it's the third issue that I have at 36 years old that I've had two surgeries for that impacts my vocal cords, that impacts everything, and it's just interesting to start conceptualizing it from this lens, and the recognition of everything being so connected, and yeah, potentially impactive.
MELISSA HOUSER: All that's related because it's definitely related, it's like on the list, is that connective tissue goes to the whole body, and so, if you look at the connective tissue of your esophagus is extra stretchy than like, the outpouching within the connective tissue. Like, you push it through same way that like, a lot of autistic people who struggle with, like chronic constipation, it's because the colon gets extra stretched out, and then, loses it squeeze. You know, I mean, there's a lot of ableism in healthcare, right? But, you know, of course, that autistic person is constipated because, like, look at their terrible diet or look at their inactivity. It's like, no look at their connective tissue.
MEGAN NEFF: So, I'm having like both aha moment, and kind of like an oh, shit, moment. Like, I think I sometimes feed into reductionism, partly, because my head just would like, it would be too much to contain. But like, I think I probably over-attribute a lot of autistic struggles to interoception issues and autistic burnout. I actually had this thought a few weeks ago when I was reading more on the research on autism and chronic fatigue of like, yes, burnout, but like, also, all of these, like, all of the things that you're describing, or even hearing that thing about the colon and constipation, I didn't know about this stretchy tissue aspect of it. So, there's more than interoception struggles going into that. It's kind of overwhelming.
MELISSA HOUSER: It is overwhelming. So, like, I wouldn't say that, like, oh no, I like erred on the side of saying things were attributable to interoception. Like, there are also interoception differences, but also, when you're Hypermobile because for anyone, you don't get feedback, you don't get like proprioceptive feedback until you're at the end range of motion. And if you're like extra stretchy, you go past, you know, what someone else's end range of motion is. So, you don't feel your body, you don't get that proprioception until you've gotten big movements.
So, you know, when, like, I don't ever thought about this until, you know, I learned about all the things. But you know, I don't think I really feel my face unless I'm like smiling really, really big or like I think I'm smiling, but I'm really not. And the people are like, "Why are you so upset? "I'm like, "I'm not." Anyway, all that it's like that. So, it's [CROSSTALK 00:40:20]-
MEGAN NEFF: So, do people feel their face?
MELISSA HOUSER: I think people feel their face. I think they, like, know like what facial expression they're making [CROSSTALK 00:40:29]-
PATRICK CASALE: We can have so many conversations on this [CROSSTALK 00:40:33].
MEGAN NEFF: …and you're listening to this, like, I want people to comment if they feel their face.
PATRICK CASALE: Yeah, when you see the reel for this video, or for this episode, please comment if you can feel your face. We would like to know, this is part of our research.
MEGAN NEFF: Well, it's the same thing with interoception, when I read about how interoception is measured, it's you connect a person to a machine and ask them to detect how many heartbeats they've had, and then, how accurate they are. And I was like, "Wait, what? People feel their heartbeat." Like, unless you're, like, sprinting-
MELISSA HOUSER: Well, there's like a-
MEGAN NEFF: …but otherwise no.
MELISSA HOUSER: So, the thing is, what's really interesting is, you know, you could feel like, I don't feel hungry until I'm like ferociously hungry, and then, can like, no longer access food. But I feel my heartbeat all the time. And I feel all kinds of things all the time. Like, that was surprising to me to see how common that is, that like people might have, you know, an increased sensitivity to some types of interoception signals, but not to the others.
MEGAN NEFF: Yeah, yeah. No, and that difference of, and I think that's really important too of like, some interoception might be exaggerated, some might be under, and then, it's really more about the differentiation that causes a struggle. Can you differentiate? Is it accurate reflection of what's objectively going on? Yeah.
MELISSA HOUSER: And like what you explain to yourself, so for example, like in my medical practice, when people learn about all the things, and then, something happens, they have a narrative to understand it. So, to the extent that your mast cells are triggered by your autonomic nervous system being triggered. Like, so that's where this integration of, you know, nervous system regulation strategies actually directly impacts the immune system. And part of that is like, knowing what this is, and not like… I mean, it's not that you don't worry that because like, it's still like, uncomfortable, and we need to have it not happen because it's impacting your quality of life. But we don't, like, you know, that like special narrative of like, I don't know what's wrong, and no one knows what's wrong, and they keep doing tests, and they come back normal, and there must be something really very dangerously wrong with me, that triggers mast cells, triggers autonomic nervous system, therefore, makes your symptoms worse.
MEGAN NEFF: I love that kind of tie-in. And I did this a lot when I worked with chronic pain, not that it's all in your head, that's a terrible message. But the story we end up telling ourselves about the pain signals will influence whether or not we get more pain signals or not. And I'm hearing that same as you talk about the narrative around your health conditions and what you're experiencing is going to actually influence your mast cells and influence your body's response because if your body thinks it's in danger, it's going to say, "Hey, we need to go on high alert." And that fight/flight activation. So, absolutely, not that it's all in our head, but that the story we tell ourselves about our experience will influence what's happening in our body,
MELISSA HOUSER: Just from a nervous system regulation standpoint, how could it not? You know, it's part of like, one of the strategies that one… But the other thing that I would say is that, like in my medical practice, you know, many people know that they're autistic and/or ADHD, many people come because they're wondering if they're autistic or ADHD, but many people come not having anything to do with that. They come because their needs were not met by the traditional healthcare system. And amongst that group, that group is much more likely to have all the things and that group is much more likely to be autistic and/or ADHD.
So, like, it goes both ways. And either way, when people just, you know, I would say very similarly for many people, when they discover their neuro divergence, that organizing narrative, like you said Megan, that organizing narrative is so… it can be like life alteringly helpful for many people so it is with all the things. Like, having a narrative to understand often like decades of your whole life of living in your body all through a single lens, that's the point.
PATRICK CASALE: So, I think that we can have a whole series with you now because this is so unbelievably informative and honestly enjoyable. But I am always timekeeping for Megan's purposes, and we are getting close. So, I think that is a perfect way to wrap up with what you just said. And also, I think we're going to have like, once we release this episode, so many people Googling, "Can I see this practice in Montpelier, Vermont for health care?" And it's unfortunate, I wish that we knew about more practices within our country who are doing things the way you are doing them. It's really amazing. And I appreciate you showing up for the community the way that you are.
MELISSA HOUSER: Thank you and I think, like, this is probably my, like, most enjoyable podcast experience. Like, this has been wonderful.
PATRICK CASALE: I like hearing that. We are just going with the flow and seeing where it goes. And that's kind of been our routine since day one. And I think that's what works for us. And it's felt really, really enjoyable so far.
MELISSA HOUSER: That's awesome. And I'll send you… when our All the Things resource is out, it's almost out, the flood was a setback. But we're still on track, we just have to do some… Because we also want to be using universal design principles in presenting this information. So, we have text, and we have graphics, and we just have to record some videos, and then, we'll be ready to go.
MEGAN NEFF: So, yeah, I did want to ask Mel kind of so obviously, if people are in Vermont, they can come to your practice. But when I was on your website, it felt like you were also providing, at least education, but maybe not medical services to people outside of Vermont. But for people who might be interested in your work, like, are there ways that they can connect with you or connect with your center?
MELISSA HOUSER: Yeah, definitely. So, first off, we do educational trainings that, yes, most of the trainings that we do are for organizations of a wide variety of types. But we do have people who they are coming to learn about specific health topics. So, it's an educational consult. So, I do those. And so, it's not medical advice, it's not prescribing medicines or making diagnoses. But like, you know, we definitely have people who come and want to learn about all the things, so we definitely offer that.
And then, we have free community programs. So, for adults, we have Brain Club, it's virtual, it's open to anyone, everywhere, and it's free. It's [CROSSTALK 00:47:15]-
MEGAN NEFF: …it's open to anyone
MELISSA HOUSER: [CROSSTALK 00:47:17] we have people… Like, last week we had somebody from the UK and somebody from Australia. Anyway, so it's open to everybody and like, it's a community education on everyday brain life. And we have, like, panelists, and presenters, and stuff, and it's really fun.
And for kids, also, open to anyone, anywhere, we have Kid Connections. It's a friend-matching program. So, like, we connect kids based on their shared interests, like their shared [INDISCERNIBLE 00:47:42] and [CROSSTALK 00:47:44]. Yeah, that was a kid's idea. So, we have a junior advisory board, so this kid is nine-year-old. We were like, "How do you make kids feel like they belong?" "You let us do what we love." Holy crap, yes. So, anyway, that's what Kid Connections is.
PATRICK CASALE: And where can people find this information for those that are like, "Oh my God, this sounds amazing." Where do they find that?
MELISSA HOUSER: allbrainsbelong.org.
PATRICK CASALE: And all of this information will be in the show notes so that everyone has easy access, and all of the links, and all of the information that Mel provided today. And we really appreciate you coming on and making the time. This has been really enjoyable and wonderful, wonderful resource for the community.
MELISSA HOUSER: Awesome, thank you so much.
PATRICK CASALE: And to everyone listening to the Divergent Conversations Podcast, new episodes are out every single Friday on all major platforms and YouTube. Like, download, subscribe, and share.
