Episode 121 (Season 3): Burnout City: Burnout Symptoms at a Cellular Level [featuring Dr. Mel Houser]
Aug 29, 2025
Show Notes
Understanding the root causes behind Autistic burnout symptoms can feel confusing, especially when physical symptoms are present but dismissed or misunderstood. Many in the neurodivergent community face not only emotional exhaustion but a web of hidden medical conditions that often go undiagnosed, leaving them searching for seemingly elusive answers and support.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, are joined by Dr. Mel Houser, an Autistic physician and founder of All Brains Belong, as they discuss the intricate connections between Autistic burnout and underlying health issues like mitochondrial dysfunction, post-exertional malaise (PEM), dysautonomia, postural orthostatic tachycardia syndrome (POTS), and mast cell activation. This discussion covers what happens on a cellular level during burnout, the importance of pacing and sensory adjustments, and why diagnostic overshadowing can be such a serious barrier to effective care. Dr. Houser also shares practical strategies, resources, and hopeful ways forward for those struggling with chronic fatigue, energy regulation, and co-occurring medical concerns.
Top 3 reasons to listen to the entire episode:
- Gain a deeper understanding of why Autistic burnout isn’t "just in your head"—this episode breaks down the science behind energy production, chronic illness, and how they intersect with neurodivergent experiences.
- Discover pacing techniques, environmental adaptations, and supplements that may support recovery and energy management—plus get direct links to free resources designed specifically for neurodivergent adults.
- Hear honest, validating conversation about grief, privilege, and agency while exploring what it really takes to honor energy access needs and navigate medical systems as an Autistic or ADHD adult.
If you or someone you care for battles constant exhaustion, brain fog, or unexplained physical symptoms, don’t miss this compassionate and practical conversation, and learn how Autistic burnout and chronic illness connect—and discover steps you can take to better support your body, brain, and well-being.
DISCLAIMER: This episode is not intended as medical advice.
More about Mel:
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: allbrainsbelong.org
- Instagram: instagram.com/allbrainsbelongvt
- What the bleep can I eat?!: whatthebleepcanieat.com
All Brains Belong Resources:
- Everything is Connected to Everything: Improving the Healthcare of Autistic & ADHD Adults: allbrainsbelong.org/all-the-things
- Exploring ENERGY Equilibrium Strategies for Individuals who Experience Post Exertional Malaise (PEM) - allbrainsbelong.org/pem collab with Autism Level UP!
- Brain Club® Digital Resource Library - Healthcare (Check back in mid-September for more topics): allbrainsbelong.org/brain-club
Other Resources:
- Bateman Horne Center's ME/CFS Crash Survival Guide: batemanhornecenter.org/wp-content/uploads/filebase/crash_care/Dark_Blue_Survival_Guide_Complete.pdf
- Neurodivergent Insights Resource on Autistic Burnout: neurodivergentinsights.com/burnout-resources
- The Autistic Burnout Workbook by Dr. Megan Anna Neff: simonandschuster.com/books/The-Autistic-Burnout-Workbook/Megan-Anna-Neff/9781507223062
- Check out Neurodivergent Insights’ Library of Boundary Scripts (free resource)
Divergent Conversations Podcast Episodes:
- Episode 2: Autistic Burnout (divergentpod.com/2)
- Episode 47: Autistic Burnout (Part 2): A Deep Dive Into The Diversity of Burnout (divergentpod.com/47)
- Episode 73: Chronic Health (Part 4): All Brains Belong [featuring Dr. Mel Houser] (divergentpod.com/73)
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✨ Neurodivergent Insights Autistic Burnout Resources
If you’d like to supplement your learning on burnout, you can check out Neurodivergent Insights' resources on burnout. We have articles, an Autistic Burnout course, workbooks, and print books! Visit: neurodivergentinsights.com/burnout-resources
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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: Welcome back to Divergent Conversations. And this is our last episode in the autistic burnout series or season. And I am so excited that we are wrapping it up with Dr. Mel Houser. Dr. Mel Houser, in case you don't know them, has been on our podcast twice before. They are an autistic physician, founder of All Brains Belong. They do such a good job talking about all the things.
And the reason I'm really excited that we're having you on to wrap up this series is the more I talk about autistic burnout and get questions about it, I have started to get a bit anxious of, "Oh no, are we doing a lot of diagnostic overshadowing of calling something autistic burnout when actually there's underlying health conditions? And then, because we have the name burnout, we're not looking at those health conditions."
So, I think you're going to help us unpack some of that today. And I'm just really excited to have you back on. Thanks for making the time.
MEL HOUSER: Great to be here.
PATRICK CASALE: Yeah.
MEL HOUSER: And I absolutely agree. I think that, you know, autistic burnout is often framed purely as like an emotional, or psychological, or, you know… Anyway, but for many of us, it's also physiological, because when you have… Like, in particular, if you have certain medical conditions that impair energy production and energy regulation, like long COVID, myalgic encephalomyelitis, chronic fatigue syndrome, dysautonomia, mast cell dysfunction, all these conditions that are connected with mitochondrial dysfunction.
And so, like, even small daily demands, you know, processing the light from the window, let alone like the fluorescent light, you know, social navigation, you know, maintaining your body, being upright, like all that stuff can be pushing you into a state of energy depletion. And we can talk more about that.
MEGAN NEFF: I want to, like, parse out like, every, like, phrase of what you just said. But can we start with… Okay, pronunciation, mitochondrial dysfunction? Because I think this one is so interesting, but also probably not understood by a lot of our listeners. Or if there's a different starting point?
MEL HOUSER: Yeah, maybe I can, just because in case there's listeners who missed, especially, the first time I was on, maybe just talking about autistic and ADHD people are more likely to suffer from a constellation of intertwined medical problems that involve the nervous system, the immune system, both of which run through the whole body. And so, this ends up impacting multiple organ systems.
So, you know, people may present with digestive symptoms, maybe connective tissue, including Musculoskeletal and blood vessel problems. There's a huge, huge list, and maybe we can link in the show notes to that earlier episode.
But things like mast cell activation syndrome, hypermobility spectrum disorder, or hypermobile Ehlers-Danlos syndrome, fibromyalgia, irritable bowel syndrome, a range of sleep disorders like obstructive sleep apnea and others, migraine, endometriosis. I mentioned before, myalgic encephalomyelitis, chronic fatigue syndrome. You know, a range of post-infectious chronic illness like long COVID, like chronic Lyme. The list goes on and on and on.
So, it's the idea of like first matching that pattern, and you should assume that if you have that cluster, that constellation of intertwined medical problems, you will likely have a higher likelihood to have problems with your mitochondria. So, like, if we can think back to, like, whatever grade, you know, biochemistry, biology, mitochondria, the powerhouse of the cell. It makes energy and is responsible for regulating how we spend our energy. So, like, basic things, rolling over in bed with the complexities of standing up, the complex motor skill of spoken communication. Like, everything we're doing. I mean, everything costs energy. And we don't always think about this seeming everyday life stuff that costs energy. I mean, everything costs energy.
So, when you have mitochondrial dysfunction or problems with your mitochondria, you maybe don't make enough energy, and you don't spend it like other people spend it. You don't spend it efficiently.
MEGAN NEFF: That attracts. So, that feels like the scientific explanation of something that I often say, which is autistic people just need a lot of rest. We just do. And it's obnoxious, but it's just a reality. And I think you're uncovering some of the, like, scientific underpinnings of why that is, that there's actually cellular reasons.
MEL HOUSER: Right. And so, like, we try to support people in unlearning that, you know, productivity focused, capitalist notion of like, push through, push through, suck it up, do more. This is at a cellular level. This is not a lack of willpower, or laziness, or whatever. This is like at a cellular level. Your mitochondria don't make enough energy. So, what are you going to do?
PATRICK CASALE: That's the million-dollar question, right? Is like, what are you going to do? Because as you're sitting here listing symptom after symptom or struggle after struggle, I'm like, checking the mental box in my head of like, yep, yep, yep, yep. And because we live in that capitalist society, and because we don't have a lot of medical providers like yourself that are accessible and understanding, what is the answer to that question?
MEL HOUSER: Yeah, I think, and certainly, we can talk about some of the supports for mitochondrial function. Like, we can definitely do that today. But like, one more concept I want to introduce for folks is the idea of post exertional malaise. So, we talked about this the second time I was on your podcast. But what post exertional malaise or PEM is, it is a worsening of symptoms following even minor activity.
And so, what that can look like, that can look like, you know, someone says that they have more pain, or soreness, or aching, or a flu like feeling, or brain fog, or some people use the word crash. Sometimes this can be right after activity. Sometimes this can be a delayed onset, which makes it really hard. So, maybe we don't start to have the onset of PEM until like 12 or even 48 hours after activity, this can last for days.
And so, we don't exactly know what causes PEM, but it's thought to be a combination of mitochondrial dysfunction plus dysfunction of the autonomic nervous system, that is dysautonomia.
And so, I remember when I was on last time, there was, like, a whole bunch of feedback from social media around like, "You know, are you saying all autistic people have PEM?" Like, no, we were never saying that. And if you have a complex chronic illness like ME/CFS, long COVID, you may very well have PEM. And if you don't know what that is, and no one's talked with you about that, you may not get better because you're always in PEM. You will get better if you stay out of PEM. And so, if you don't know what it is, how will you stay out of it?
PATRICK CASALE: The beauty of people commenting on 30-second clips of a 60-minute conversation.
MEGAN NEFF: So, this was so interesting the first time I learned about PEM, because I was trying to find language to describe this experience. And so, the language I've used is sensory sick and how at the end of, like, a work day, especially when I used to work in the hospitals, I would get flu, like, I would just feel sick. And I was like, "I think I'm sensory sick." But it's because I didn't have language for PEM of like, this is the body crashing. Because I was really confused, "Why am I getting these fevers?" But it's that is exactly… Or even now, if I'm in Zoom interviews for more than two hours, typically, like, I start feeling feverish. It's…
PATRICK CASALE: Yep, and I've experienced a lot of that too. And I used to describe it without having the language of being like, I'm having this like, malaise-esque feeling come over me. I'm taking my temperature. I don't have a fever, but I feel like internally, like I have the flu. I have some sort of virus. Everything is shutting down. And medical professionals will be like, "Your vitals are fine."
MEL HOUSER: Yeah, totally. I mean, we hear that all the time. You know, myalgic encephalomyelitis, chronic fatigue syndrome, is not something that I learned about in medical school. Most healthcare professionals, this is not a pattern. I mean, a lot of us we fill our brains with patterns, and we match the patterns when we see patients. But if you, like, didn't get taught about a thing, you can't match the pattern when you see it.
So, this, unfortunately, is one of the many reasons that patients go without this, you know, lens, or this narrative of understanding what's happening. But like, you both knew, you both knew what it was.
MEGAN NEFF: Well. And so, since learning about PEM, one of the things I've started getting better at, because I'm very much… One of the ways I've adapted, you know, I do a lot of talking around the level of, like, identity and core schemas. One of the ways I have adapted to kind of neurodivergent shame is through hyper independence, workaholism, overworking.
So, I used to push through PEM. I'd maybe be like, "Okay, let me find a lower cognitive task to do." But I would just keep pushing through. And once I learned about it, I started honoring, like, okay, I'm starting to get feverish. I'm going to go, like, lay under a weighted blanket for a little bit. And I stopped trying to push through. Is that the kind of thing that, like, you do with your patients, and what you recommend is like pacing? Because I talk about pacing systems a lot, but I'm guessing that that would be part of the response to PEM, is to pace and to start learning your signals?
MEL HOUSER: Absolutely. So, I think that, you know, just what pacing means is it means modulating your activity. So, anything that uses energy we'll call activity. That can be physical; even sitting upright is a physical activity.
But cognitive activity, being on the computer, reading, thinking, emotional activity, like having an argument with someone, even like having a happy experience with someone. So, all that and being up against gravity, that is, you know, activity. So, it's like sort of recognizing, "Oh, yeah, what I didn't really think of counts as an activity actually is, and I have to modulate that."
So, what, what modulation, of activity, or pacing, or energy conservation is, and there's all kinds of protocols we can we can link to evidence-based protocols for pacing. But the whole idea is, you figure out what your baseline is. Like, what you can sustain, which is usually half of what you think you can manage. That's your baseline. And then, you have these, like, thresholds for stopping what you're doing.
So, you know, what most of us have grown up internalizing this narrative. It's like, you fight it, you push through it, you know, you feel better when it's done. Like, nope, not when it's post-exertional malaise. We're talking about cellular no energy. So, it's pushing through, sucking it up, oh, I can rest when I'm done. Like, that doesn't work here.
And what we know is that pushing through post-exertional malaise prolongs recovery. It makes people sicker. It hurts the mitochondria. So, it's like, yes, there's capitalism, and then there's like biology, where you don't make the energy in your cells.
So, anyway, I found that when I met ME/CFS criteria, and I learned that I was experiencing PEM, which I didn't know I have long COVID, but I had ME/CFS from a head injury before COVID. So, I had no idea. Like, ME/CFS, I kind of knew that it was a thing, but I didn't know that you could get it triggered by any number of assaults to your neuroimmune system, including head injuries, surgeries, pregnancy, you know, all these kinds of flare triggers. But this gave me a lens of like, "Oh, oh, I just have to pace, okay."
And so, baseline, so if Megan Anna, you said, "If I'm on Zoom for more than two hours, I get symptoms." So, if you don't get symptoms at the one-hour mark, your baseline is half of that. I'm going to limit all my Zooms to 30 minutes. And you might find that even after a few days of doing that, your capacity increases.
So, it's by like, doing the radical and again, like, it's so much privilege. It's so much privilege. Like, here I am. I have the flexibility of working from home. I'm working from bed. I'm literally flat right now, because I'm not using… if I'm talking, and I'm not in bed all day, but when I'm talking or I'm on the computer, I am flat because I'm using my energy to talk, and think, and computer, I'm not spending energy being upright. I can't combine them. My brain gets too bad. So, anyway, like, so you're also doing those tradeoffs.
MEGAN NEFF: Can I just ask, like, logistics?
MEL HOUSER: Yeah.
MEGAN NEFF: So, minus when I'm in a meeting, I am on a couch where my legs are flat, because otherwise, like, my feet will be swollen after this meeting, just from sitting for this long. What is your technological structure that you're able to be flat and do computer work? Because that sounds amazing. I think that would be so helpful for me. Like, where is your computer right now?
MEL HOUSER: Yeah, and I'll see if I can figure out how to take a picture so we can have in the show notes or something as a diagram. So, I also have the privilege of, in Vermont, we have a vocational rehab program called HireAbility Vermont. Most states have a vocational rehab program.
So, with their support, I was able to get a desk that is wider than my bed and is on either side. So, it's across my bed right now, and it moves up and down if I have to be in different positions. But like, desk long enough or wide enough, whatever you want to think about it, like wider than the bed so that I can have it closer or farther away to me. I have a laptop on the desk on an angle. Like, it's on a textbook, so it's like this. And I have like a wrist guard in front of it, so it keeps it from falling on me. So, it's up on the textbook, stopped by the barrier of the wrist guard. And then, I have a second, like a detachable keypad on my lap. And next to me, like in my plane of my body is a mouse pad and a mouse.
MEGAN NEFF: Oh, my goodness. I need your setup. I need that.
MEL HOUSER: I'll take a picture. But again, like it's such a privilege that I have the kind of job that I can do in this position, whereas, like so many people don't have that privilege and don't have agency. Like, you know, I didn't have to work from bed when I first had my current job, but like most people can't. They don't have the agency to make big changes like that.
But there might be little changes like figuring out, when do I get symptoms? Which is very hard for a lot of us with interoception differences, or we don't feel the things until the signals are really big. I think with time and practice, there can be some, like, "Oh yeah, that thing I feel I could do something." As opposed to like, "Oh yeah, it hurts. It always hurts." Like, there's kind of gradations, but that takes some practice and maybe working with a helping professional around that.
PATRICK CASALE: I think about how much time, like, during my life, that I spend horizontal instead of vertical. Like, I'm laying on my couch or my bed all the time. And I used to feel unbelievably guilty for it, of like, all day, every day, I'm in my bed if I'm not doing something else or whatever.
But you're right. It's so privileged to say I have the ability to do that. And I remember working in like, crisis units, and even when I was in private practice, and client after client, sitting up, standing up, rushing around from environment to environment, and it was just like, it was hellacious.
And what I've been able to create now in my life is much more sensory friendly. And I have so much more control over it, but it is such a privileged position for me to be like, I do have control over my environment 99.9% of the time.
MEL HOUSER: Totally. And Patrick, thanks for bringing up the sensory element of this. So, processing sensory information is an activity. It takes energy to do. And so, while someone may not have the privilege of being able to control their position, they may be able to limit some of the sensory information that comes into their nervous system.
So, shortly after I had COVID, one of my staff said, "Hey, I'm noticing that when you have the lights on in your office, you get tired and cranky." Sure enough. So, really, since that time, I work in the dark. Sometimes I have to put the lights on, like, if a patient wants light, we put the light on, but I have tinted glasses when that happens, so that we're navigating the conflicting access needs aspect of that. But it's the idea of I do have, maybe if I can't change what position I'm in, I might be able to modulate how much input is coming in. The lights don't bother me in my office, but they're still costing me energy, and I don't make a lot of energy.
MEGAN NEFF: Okay, so pacing and then, like, reducing sensory input, and making adjustments to reduce the amount of energy output. That's a huge piece of this. What about, because I see, like, years ago, I used to follow the keto diet, which was all about the mitochondria and, like, I see this all the time, like these kind of what feel like fad movements that are like, "This will strengthen your mitochondria." Are there things that do help support our energy on that cellular level?
MEL HOUSER: Totally. And I'm, like, using my hands to make a pretend list so I don't forget to answer your question. I think I have to first introduce one more concept, or actually two more.
MEGAN NEFF: Go for it.
MEL HOUSER: Okay, so one is part of this constellation of intertwined medical problems that most of us have are two things we haven't talked about. One is POTS, postural orthostatic tachycardia syndrome, where the autonomic nervous system is basically not tolerating gravity. And so, you may literally not have blood flow to your body parts. So, the physiology is that you get up against gravity, and your autonomic nervous system is not constricting your blood vessels enough to get the blood back up.
And so, that's why we have things like pooling, you mentioned swelling, pooling in with gravity. That's why we have brain fog when we're upright. That's why maybe digestion, and how quickly digestive happens is impacted. Maybe my pupils don't constrict when I'm in bright light, so I'm more sensitive to light. There's all these things that dysautonomia causes that we don't, like necessarily think about as an autonomic nervous system, from temperature regulation, somebody mentioned temperature regulation before. That's dysautonomia, yeah.
So, that is another reason why we feel so terrible when we're upright. So, why that's important is that the autonomic nervous system talks to the immune system. And yet, another component of the constellation is mast cell dysfunction, or mast cell activation disorder MCAD, where our mast cells, just part of our immune system are sounding the alarm in response to either an external threat or an internal threat.
And so, the autonomic nervous system mast cells are talking to each other in both directions. So, if I, as an autistic person, am experiencing something as a threat, and there's a million threats in the environment. The environment is inherently threatening. So, I'm going to have a big autonomic nervous system response, which I'm going to have a big mast cell response. And both of those things, the autonomic nervous system and the mast cells talk to the mitochondria. So, the best way that you can support your mitochondria is dealing with your mast cells and dealing with your autonomic nervous system, dealing with your POTS/dysautonomia.
So, like, you can't skip that part. And that's complicated. And we can link to some free resources. So, All Brains Belong has a free resource called the Everything is Connected to Everything, improving the healthcare of autistic and ADHD adults. And like, you know, it's written out evidence-based strategies including supporting the mitochondria, and dealing with your mast cells, and your POTS, and your EDS, and all the things. Anyway, so, like, that's a framework.
But I will actually answer your question, which is, there are some specific supplements, for example, by the way, I do need to name the disclaimer, and we're like, halfway through the episode, and I haven't given the disclaimer. This is for education purposes only. This is not medical advice. Please talk to your doctor. And if you don't have a doctor that knows about this, the other part about Everything's Connected to Everything resource is a letter that you can print out, hand to your primary care clinician. Let it speak for you. It's written in language that doctors are used to communicating in. You don't have to worry about contorting yourself to like, say the right things to get their attention. Just print it out, hand over the letter, and they can read things that were created for them to look at.
Anyway, so some supplements that are described in that guide. There's a lot of other things that people take, but these are the ones that I think have some like good evidence to support them. So, one is Coenzyme Q10, CoQ10. CoQ10 is a mast cell stabilizer. It is also good for the mitochondria. That's one.
I'd say that another really, a really impactful thing is carnitine. So, you can get carnitine food like egg yolks, and meats, and things like that. But carnitine, or Acetyl-L-carnitine is a supplement that is a supplement that is available. Also, increases neurotransmitter production. So, a lot of people who have dopamine-bound brains, they do really well on Acetyl-L-carnitine for that reason as well.
Those are, I think, like some of the really, really impactful ones there. There are others that are described that maybe has some tradeoffs. But for all comers, I think those are good starting points.
You know, there are nutritional considerations for mitochondria. Actually, this is interesting. By the time this airs, there's another resource that will exist. We just did a collaboration with the folks at Autism Level UP. It's a resource on post-exertional malaise, and that has a page on like supporting your mitochondria through food, and supplements, and stuff. So, that's going to launch this Friday. So, that'll be available to link in the show notes when this episode launches.
Anyway, so it's really like from a mast cell lens, there may very well be foods that you are eating, things you are consuming that your mast cells are sounding the alarm to. And though, you know, I also want to acknowledge that in our community, we've got high rates of eating disorders, past or present, and we don't want to be like, "Start cutting out all the things." Like, we don't want to have that because I really think that for a lot of people, whether that be, you know, lifelong, sensory related things, maybe somebody has ARFID, or maybe somebody has, like, any number of things that impact their ability to feed themselves. Feeding yourself is hard. And like fed is best.
And we also want to acknowledge that if the mast cells are sounding the alarm, that is going to be playing a role in how someone is able to recover from their all things. So, I think just there's a lot of internal conflicting access needs where, like, parts of ourselves need something and parts of ourselves need something else. And it's not just psychological or emotional parts work. It's like your physiology, your nervous system, your immune system, and all your organ systems often have conflicting needs.
PATRICK CASALE: I have this reoccurring image while we're having this conversation, unfortunately, with all this information, of like, being a bubble boy person, of like, the only way I can protect myself is if I'm in this, like, bubble moving through the world, because everything is so impactful.
And I imagine for a lot of people listening, like, it almost creates a level of hopelessness and despair, of like, how the hell do I move through this in a way that supports me best? And what I'm hearing is like pacing, small incremental change, doing the things that we can control, and acknowledging that there's so much coming at us at all times, biologically, environmentally, sensory, all of the things, right? That it can create a level of cynicism, I think, probably in the medical community too, where they're like, "What the fuck do you want me to do here?"
MEL HOUSER: But I would also say that I think that medical professionals have a responsibility to keep learning. So, for example, and I've had this experience as a patient, and so have many of my patients, where you go to see a doctor and they're like, "Well, can't you just like, move more. Just move more. You'll feel better."
That is the opposite advice of what someone with ME/CFS needs, because what someone with ME/CFS, who's having PEM, what they need is to stay out of PEM. And what you'll find is that if you can, if you have the privilege of being able to aggressively and radically pace, even for a few days, you can start to see the needle move in capacity. And some people, you know, don't have that privilege. But you know, even if you have to be caring for children, or caring for pets, or whatever. Like, if you can spend all your time when you're not required to do something, you can spend it flat, like that would be helpful.
But also treating your POTS, making sure that you have enough hydration, and you have enough electrolytes, and maybe you need some medicines or supplements to deal with your POTS or your mast cell activation, et cetera. I think it's not hopeless. Like, I think that what we see in our practice is we see people getting better.
I'll also say another resource that might be good to link, there's this amazing website, I'm going to say this, I'm not saying that this is the right website to use for everyone, but if someone has capacity to engage with the idea that maybe something that they're eating might be making their mast cells pissed off, there's this website called whatthebleepcanieeat.com. And at the bottom of it is a food detective. And if you know that there are things that make your body sound the alarm, you plug them in.
And this website is amazing, because it may seem like all the food makes you sick, but you may not realize what some of these things have in common. So, you know, for example, I recently learned that I have salicylate intolerance. Even though I tell people about whatthebleepcanieat.com every day of my life, I'd never actually used it. It jumped off the screen to me that this is what was wrong. And within, like, really, a few days, I had a different life.
PATRICK CASALE: Wow.
MEGAN NEFF: That's amazing. Yeah, I like that too.
MEL HOUSER: I went back to cooking in my office for the first time in two and a half years. It's like the mast cells will sound the alarm, and like they may sound the alarm for things that are not actually threats. You know, like, maybe dairy is not really a threat, but your mast cells think everything's a threat because something else is pissing them off. Or, you know, maybe gluten, maybe soy, or, like, all the things that people, you know, may actually be mast cell threats. Or it might just be that mast cells are responding to something else. And if you deal with the something else, maybe now your mast cells can tolerate these other things.
I think there is a lot of reason to be hopeful. I totally get why it feels really demoralizing and discouraging. But I think a lot of times, the reason that people suffer for so many years is like you're missing this core part. Like, maybe you're missing POTS and you don't know you have that, or you're missing mast cell dysfunction. Maybe you've never even heard of PEM before. So, it's like you support each of these pieces with strategies that don't make the other pieces worse.
PATRICK CASALE: That makes a lot of sense to me, I mean, when you break it down that way. And I say this every time you're on here, but I really wish you were in North Carolina. Every time I go to my doctor I'm just like, "Okay, I'm just going to go listen to Mel's advice instead."
MEL HOUSER: Well, it's too hot down there for my POTS. So, maybe you should move up here.
PATRICK CASALE: Listen, if my wife was like, "I'll move to the northeast." I would move back home in a heartbeat. So, trust me. North Carolina summers are not for me.
MEL HOUSER: Yeah.
PATRICK CASALE: That's why I stay in the house 90%-
MEL HOUSER: That's another piece, right? So, coping with your environmental changes that also uses energy. So, you know, thinking about how am I going to navigate the heat, or the cold, or switching back and forth between them? These are all mast cell triggers.
PATRICK CASALE: Yeah.
MEGAN NEFF: And that's also interesting, because something I hear a lot also is like autistic people, and I probably say autistic people struggle with, like, homeostasis, and regulation, and temperature regulation. And I think if I'm getting you right, you'd probably say, well, that's actually not autism, rather is-
MEL HOUSER: Yes, dysautonomia. Dysautonomia that is more common in autistic people.
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: [CROSSTALK 00:33:40].
MEL HOUSER: [CROSSTALK 00:33:40].
MEGAN NEFF: And, like, because of, like, all my Misdiagnosis Monday series, right? I'm always talking about all the things that overshadow autism, but this bit, and this is the bit that I've just come to really appreciate in the last couple years, autism can become a diagnostic overshadow for so many medical things. And we're like, "Well, that's just part of the autistic experience." Like Patrick and I talk a lot about grief of like, well, these are my limits. I'm going to grieve them. And like, there is some honoring of, like, living in a body that has more limited energy. But also, sometimes I wonder if, like, am I trying to grieve things that I'm saying are autism that actually are maybe, like, things like… There's so many health words that are hard for dyslexic, like dysautonomia.
MEL HOUSER: Yeah, yeah, yeah, that word, I know what you mean. No, seriously, no, I agree. And so, like, the same way that we honor sensory and any number of access needs, we need to honor energy access needs. So, it's like pacing, reducing hidden energy needs, and like designing life around what your body can do without triggering PEM.
And while you're doing that, it is normal to grieve. It's so normal to grieve the loss of what you're not able to do. And so, a lot of times it's like reimagining, maybe even in the temporary, if I have, like, a toolbox of what I do to get dopamine, or I have a toolbox for, like, what brings me joy, or maybe those are the same things, maybe they're not. If I can't do those things, I feel terrible. I feel inertia. I just feel terrible all the time. So, I also have to do the work of, like, making a list of some other things that I can do. And it's not forever. I don't think this is about doing less forever. It's just about creating safety for your brain and your body so you can recover some capacity.
MEGAN NEFF: So, and you might not have the answer to this, but this, I think, would be an interesting conversation point, because this is also a psychological question for a lot of us, whether it's because we've adapted to shame through workaholism or whether it's because of complex trauma, doing nothing creates a sense of unsafety.
MEL HOUSER: Yes.
MEGAN NEFF: And from what I'm hearing is the mast cells react to a sense of threat.
MEL HOUSER: Yes.
MEGAN NEFF: But how do you work with people for whom pausing, and being still, and resting actually creates threat?
MEL HOUSER: Yeah, yeah. I think it's about figuring out, like, what does rest look like? And so, for some people, that might be laying down in the dark, staring at a wall. For some people, it might be like, maybe they can be doing something that's off a screen, but they're working with their hands, or they're creating something. So, for some people, they can read a book and not get PEM. For other people, that's not true. For some people, they could listen to your podcast and maybe not get PEM. Maybe for some people, they get really engaged with it, and maybe they're spending a lot of cognitive energy, but it's really just, like, exploring, like, what does it look like to rest without doing nothing? So, you're not [CROSSTALK 00:36:51]-
MEGAN NEFF: Yeah, yeah, yeah. And I talk about that a lot of like, rest often looks different for us, especially for ADHDers, of like, I find classic rest very not restful. And so, like, I have to be doing something, and it's a lot of things you mentioned, like listening to an audiobook, but being flat, and maybe even having an eye mask on so that it's like dark, and I'm sensory-deprived, but I'm getting some kind of input that's scratching my productivity itch.
PATRICK CASALE: Yeah.
MEL HOUSER: Totally, [CROSSTALK 00:37:17]-
PATRICK CASALE: Yeah, that was such a great question and distinction, because we talk about the restlessness component of the ADHD parts all the time on this podcast, and how doing nothing is not exactly comforting or relaxing, but I think reframing it to, like, just limiting input and doing things that are low energy experiences would be much more helpful for me, I think, going forward.
MEL HOUSER: Totally. Another great resource that maybe we can link in the show notes is the, there's an ME/CFS Crash Survival Guide put out by the Bateman Horne Center. I love their work.
And one of the things this guide does that a lot of our patients have found really helpful, there's this section where it sort of like points out all the ways you spend energy that you're not aware of. And they give an example of, like, you're on a phone call, and it's like, well, holding the phone, listening, thinking of your answer, like all these things that you don't think that's spending energy. That's just like a normal thing you do. Yeah, well, it costs energy, and it has to be paced. And they have some ideas for us.
And I think one of the other things with this Autism Level UP resource is that what we've put together is a tool that folks can, like, keep track of what are the, you know, by sensory system, what are the things that are actually restorative?
So, you know, in the same way that you know, if you are feeling like you need more energy, you're feeling listless, or restless, or whatever you're trying to do to regulate your nervous system, you may not be able to do the things that you used to do before to regulate your nervous system, whether that be, you know, exercise or, you know, I'm going to do some jumping jacks, I'm going to do some pushups. Like, you can't do that. My mast cells, my autonomic nervous system won't tolerate that. But, like, what are you going to do? And so, this toolbox is about, like, how do you regulate your nervous system in the setting of PEM?
MEGAN NEFF: Oh, that sounds like a great resource. I love their, I refer to all the time, their Regulator 2.0, which is kind of like-
MEL HOUSER: [CROSSTALK 00:39:24] that's one of my favorite of their tools, yeah.
MEGAN NEFF: Yeah, how to use sensory input to either, like, kind of energize and up regulate, or down regulate. So, to be able to do that, but in the context of PEM. I mean, that's kind of what we're talking about here, is, how do you find that sweet spot of a lot of, especially, if we're both autistic and ADHD, we need stimulus to feel okay. So, like, how to find that sweet spot, or what I often call like the Goldilocks for the sensory spot when you're in PEM, because, yeah, that gets a lot more complex, to find that both stimulation so that the ADHD boredom is not just crawling out of our skin, but not so much stimulus that it's contributing to PEM getting worse.
MEL HOUSER: Yes, because I think if you're going to summarize anything, like if you're going to take one thing away, learn what your PEM looks like, and stay out of PEM. If you stay out of PEM, you will get better. It's just that, if you're not aware that you're in PEM, and you don't understand what are the factors that got you there and keep you there, that's going to make it really hard to recover.
MEGAN NEFF: Yeah, yeah. And actually, I think I learned this from folks who are in your community, who are also in my community, but this idea of that there's different kinds of PEM. Like, there's cognitive PEM, there's physical PEM, or, I don't know if you'd say it's different kind of PEM, or just different triggers?
MEL HOUSER: Different triggers.
MEGAN NEFF: So, how people can, but is it a different experience, like, if it's, you go and do exercise, and then you have PEM? Versus like, you're doing cognitive, complex tasks, and you have PEM. Is that a different experience of PEM?
MEL HOUSER: I think it's so individualized. Like, some people will describe, well, PEM is PEM. This is what my PEM feels like. Some people will say, well, I get a headache if I… Or muscle pain, or like, I get this when I do physical things, but I get brain fog if I do something. But some other people will say my PEM is PEM. And sometimes it's a mix and match.
Like, my personal experience is, if I have PEM from a physical trigger, I will be more likely to present with like muscle pain, and soreness, and sore throat, and swollen lymph nodes, that that'll be how that is, whereas I'm more likely to have brain fog from, I mean, I have brain fog all the time from either of them, and I have light sensitivity from either of them, but the like, and it might just be also severity. Maybe what I think is, well, I get this manifestation from the physical trigger. It might just be, this is what my more severe PEM looks like, and I get more severe PEM from a from a physical trigger. So, I think it might be like some of that, and maybe a mixture of both.
MEGAN NEFF: Yeah, that makes sense, that makes sense.
MEL HOUSER: Yeah, but I think it's important, because I think, you know, to your point about a lot of us, we have these coping mechanisms. We work, work, work, because like our identity is tied to our work, and our creation, and we get dopamine from it. And it's like, our sense of value and worth, and like all that stuff. And if you can't physically do the things you did, you're going to probably try to cognitively do the things you're doing. And so, you're having to figure out, how do I, like, really take a look at and this is so much privilege of having a community that is unlearning together, but this idea of having value just by being a person. Like, I have value just by being, it's not about what I create, and what I produce, and how much work I do, and all that stuff. But that shift in self-narrative, I think, is very hard to do alone. I think it's best done together with other people.
MEGAN NEFF: That's so well said, yeah, yeah. I don't think we can do that alone. I think we do that in community, yeah.
PATRICK CASALE: Seems like the natural space to transition out of this time wise. But I just want to say how much I appreciate you, because I'm already thinking about how many people I'm going to send this episode to when it airs, because of how often we do not talk about the biological side of everything that's going on, and how much knowledge you just gave us in 45, 50 minutes is, I just always leave our conversations feeling a little more hopeful and inspired about some small changes that I can make in my life to make my life a bit easier. So, I want to thank you for that.
MEL HOUSER: Awesome. Thank you so much. Can I like wrap up like, because I think that we started the conversation looking at, like, burnout versus PEM, but maybe just to wrap it all up, to say that maybe we can't separate them when you have complex chronic illness. Not everyone in autistic burnout has PEM. And we spent a lot of time on PEM, and most of the time on PEM. But not everyone with autistic burnout has PEM, but when you have both autistic burnout and PEM may not be able to be separated. They're the same story told through your brain and your body. And it's just about like we said before, we want to recover, we have to honor those energy, access needs, and care for all the things at once, because everything's connected to everything.
PATRICK CASALE: It's a great wrap up.
MEGAN NEFF: Thank you. I'm glad you came full circle on that. That's yeah, absolutely. Thank you so much for your time. And your time, but also your energy, your energy expenditure.
PATRICK CASALE: Yeah.
MEL HOUSER: Thank you. No, you gave me energy, so my mitochondria are grateful for you.
PATRICK CASALE: Thank you. Do you want to, like, shout any of your stuff out, or you do want to just link it in the show notes? What's best for you in terms of where to find your resources and all the things?
MEL HOUSER: Yeah, so you could go to allbrainsbelong.org to check out a lot of the things that we talked about today, and then we can link specific resources, including the Everything's Connected to Everything guide, including Brain Club, which is a free community education program that is every Tuesday, but also is recorded. People can't make it live. But where we cover these topics, and also just everyday brain life topics of being a neurodivergent person in a normative world. We'd love for folks to join us.
MEGAN NEFF: Yeah, I think I just saw an email this morning about a new resource you all have, and you're a nonprofit, so you provide so many free resources for our community, which I just, so appreciative of. I hope the grants keep coming.
MEL HOUSER: Thank you. Thank you.
MEGAN NEFF: And just thank you for the work, yeah.
MEL HOUSER: Thank you for reminding me that we had a new project that launched this morning that I forgot about.
MEGAN NEFF: You're welcome.
MEL HOUSER: So, it's the Brain Club Digital Resource Library. I said Brain Club gets recorded, all the archives are available on the website. But if you don't know what day the thing you want was, it's very hard to find the thing because that's three and a half years worth of episodes. So, you can now search by topic. So, the healthcare topic launched today. In a couple of weeks, it'll be all the topics: employment, regulation, relationships. And we're really excited about that.
PATRICK CASALE: [CROSSTALK 00:46:45].
MEGAN NEFF: That's amazing, that's amazing.
PATRICK CASALE: Yeah, seriously, thank you so much for everything you're doing. It's…
MEL HOUSER: Thank you for everything you're doing, making so many people, I would say, and this is certainly my experience, when I listen to your podcast, feeling less alone. That there are so many people who experience the things that you experience.
PATRICK CASALE: That's our hope. Every time we talk to each other on here, and we're like, "Why are people listening to us?" That is our hope, is…
MEL HOUSER: That people don't talk about and like, if you think you're the only one who has this, like, mysterious thing, and like, you feel so defective and so broken. And as soon as you hear someone say something that reflects, like, kind of all the time, when one of you will say something, and I'll be like, "I've never heard another human say that." Even in a community where, like, we're talking about this stuff all the day, it's like some other way of expressing an inner world experience that you're like, that is my life, and you just gave me words for it.
PATRICK CASALE: We appreciate that, for sure, as much as we both hate being perceived. All right [CROSSTALK 00:47:54]-
MEGAN NEFF: [CROSSTALK 00:47:54] to wrap it full circle, having words for our experiences, especially ones that are disorienting, that helps calm the mitochondria, because we're sending signals of like this makes sense, versus signals of threat. So, having language, and that's again, back to community, I think neurodivergent community, we forge language of experiences that many of us are very confused by, and it helps signal safety.
MEL HOUSER: Yeah, and that's how we shape culture.
PATRICK CASALE: 100%. Yeah, I love that. Thank you.
MEL HOUSER: Thank you.
PATRICK CASALE: Yeah, thank you. I'm glad this worked out the way that it did. So, I hope everyone who's listening got a lot out of this episode, like we did. I hope you enjoyed the Burnout City series, which, honestly, was probably one of our favorites that we've done together so far. We still want your illustrations, drawings, pictures, photos, whatever you create, of burnout city versus monotropic manor. Send them to our email or our Instagram. New episodes are out on Fridays on all major platforms and YouTube. You can like, download, subscribe, and share. And we'll see you next week.
