Thriving Autistic Healthcare

Transcript

Thriving Autistic Healthcare

November 15th, 2026

Episode Introduction & Preview

Welcome everyone to Today’s Autistic Moment, a Podcast for Autistic Adults by An Autistic Adult. My name is Philip King-Lowe, my pronouns are he/him. I am the owner, producer and host, and I am an Autistic Adult. Thank you so very much for listening.

I am very excited about this episode, because I have wanted to interview a medical doctor who is AuDHD for a long time, and today, you will hear from Dr. Mel Houser.  Dr. Houser is an AuDHD medical doctor. Dr. Mel Houser will talk about her approach to practicing medicine with a holistic approach to an Autistic and ADHD body.  While most medical doctors work with their patients for 15 minutes to give a diagnosis, some medications and send their patients out the door, Dr. Houser asks their patients about their overall health so that they give complete and accurate diagnoses with treatment recommendations that AuDHD people need most.

Come join us for the episode Thriving Autistic Healthcare on Today’s Autistic Moment. 

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Segment 1

This first segment of Today’s Autistic Moment is sponsored by The Autism Society of Minnesota, known as AuSM throughout Minnesota’s Autism Community. As Minnesota’s First Autism Resource for more than 50 years, AuSM serves the whole state, the whole spectrum for the whole life. Visit AuSM at ausm.org.

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I am excited to announce the theme for season 7 of Today’s Autistic Moment. In 2027, the theme will be Robust Autistic Intersectional Advocacy. 2027’s theme will caveat off of the theme for 2026, Autistics Thriving, Not Just Surviving.  The theme for 2027 picks up from that and says, “Okay, let’s take how we are thriving, and put it into action through Robust Autistic Intersectional Advocacy.”

The Key Ideas are:

·       Robust: The work is ongoing, well-informed, and action-focused-not limited to awareness messages. It seeks concrete improvements in access, rights, services, safety, representation, and accountability.

·       Autistic-Led: Autistic people should be heard, included and meaningfully involved in the decisions that affect their lives. Self-Advocacy includes both individual choice and collective action over public policy, media representation, and the ways society views disabled people.

·       Intersectional: Advocacy should not treat “Autistic people” as one identical group. Autistic transgender people. Autistic people of color, Autistic immigrants, and Autistic elders may face barriers that cannot be addressed by a one-size-fits-all approach.

·       Advocacy: Cross movement solidarity recognizes disability rights as civil rights and connects Autistic Advocacy with efforts against racism, sexism, ableism, homophobia, transphobia, classism, and other systemic harms.

I am seeking Autistic Adults over the age of 18 years or older to be guests to talk about topics that will talk about topics related to the theme in 2027. If you are interested, please go to the Be My Guest Page on todaysautisticmoment.com. 

Give to the Max Day is coming up on November 19th. Give to the Max Day in Minnesota doubles donations to Minnesota non-profits. In 2025, Give to the Max Day raised $37.8 million dollars for 6,430 organizations.  Three outstanding Minnesota organizations that impact Autistic people generously sponsor Today’s Autistic Moment each year. Go to givemn.org/gtmd and donate to The Autism Society of Minnesota, Minnesota Independence College & Community, and Looking Forward Life-Coaching. The link is in the transcript.

After this first commercial break Dr. Mel Houser will talk about Thriving Autistic Healthcare. 

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Commercial Break I

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Segment 2

Philip King-Lowe

Welcome back.

Dr. Mel Houser (she/they) is a family physician and Founder of All Brains Belong VT, a nonprofit organization in Montpelier, VT with a mission to support the health and belonging of people with all types of brains.  All Brains Belong has pioneered an innovative model that integrates medical care with social connection, employment support, and community education. Dr. Houser provides Neurodiversity training to healthcare practices and workplaces around the country about how to create environments where people of all types of brains can get their needs met and thrive.

Please join me as I welcome Dr, Mel Houser.

Philip King-Lowe

Mel Houser, welcome to Today's Autistic Moment. Thank you so very much for taking time out of your busy schedule to join us today. Welcome.

Mel Houser (she/they) - All Brains Belong VT 

Thank you. It's great to be here.

Philip King-Lowe 

Mel Houser and I are going to discuss a topic that Autistic Adults are so familiar with on so many levels, and that is healthcare, Thriving Autistic Healthcare. I have had a few guests where we have talked about healthcare. We have talked about the marginalizations that occur because of, you know, what we need is not really available out there, and we concur and continue to say that. But more importantly, a topic that's been discussed many times on many episodes is that being Autistic is physical. Yes, it is not just neurological or behavioral, as some like to say. It is not just something that is theoretical. Earlier this summer, I had Dr. Megan Anna Neff, where we talked about the nervous system that has everything to do with the body as well as the brain, all of these things are connected. You know that old saying that you know all the bones of our body are connected. Well, so our brain is connected to the rest of the body. It's amazing that we can't get doctors, neurologists, and others to you know that. But it really is, and so Mel is here because she is a medical doctor and an Autistic who has worked with many Autistics over healthcare, and we've got some major stuff to talk about because of many Autistics being misdiagnosed or just underdiagnosed, over diagnosed, all these things, and so we're here to begin changing the records that are written out there. So, this is a very important and very well-informed conversation with an Autistic doctor who will really explain on our level a lot of the things that occur with healthcare, along with how Mel does their work as a doctor to really emphasize the physical nature of Autistic people. So, Mel, as we introduce our audience to this topic, Thriving Autistic Healthcare, let's start giving some information, and let's begin getting this message out there. Let's get people to listen to this, because this is so important. Go ahead, Mel.

Mel Houser (she/they) - All Brains Belong VT 

Absolutely, thank you for naming all of that. I could not agree more. So, you know, Autistic and ADHD adults often have a group of medical problems in many systems of the body, and for many, if not most of us, these medical conditions are related to one another. I think that patients know that their medical conditions are related. It just may be really hard to convey these connections, particularly during a short 10-to-15-minute healthcare appointment where you're trying to contort yourself to fit into the box and like be heard and understood and all of that. So, you know what we know is that Autistic people have different, just a different nervous system, immune system, and the ways that they talk to each other that impacts multiple systems of the body. So, some examples of medical conditions that run together and are far more common in Autistic people: hypermobility, for example, something called hypermobile Ehlers-Danlos syndrome, dysautonomia, which is a condition of the nervous system and a subtype of that called POTS, mast cell activation syndrome, which is an immune system condition, a lot of digestive symptoms and conditions. For example, irritable bowel syndrome, chronic pain, sleep disorders, hormone problems, migraine conditions that people get after they have infections. For example, long COVID and a whole bunch of other things that are all known to be more common in Autistic people, and these conditions are all known to be related to each other. It's just that the healthcare system really gets in the way of clinicians being able to zoom out enough, and you know, like you said, everything's connected to everything. And so, if a doctor only is given 10 minutes, it's hard for them to zoom out and address multiple problems at a time. And when the problems are all related to each other, and sometimes the treatments for some of those problems actually make the other parts of the cluster or group worse. It really matters to zoom out and say this is a whole constellation of the neuroimmune system. So, neuroimmune meaning nervous system and immune system talking together, impacting all the body systems. So, you know, some examples of where we see that play out. Somebody who has chronic pain, for example, they often get prescribed medication, for example, a muscle relaxant. But if the person actually also has hypermobility, where their connective tissue is extra stretchy, that muscle relaxant might make the stretchy muscles and tissues stretchier, and now the connective tissue in their whole body might get stretchier, including in their airway, which impacts their breathing. And if they also have, for example, a sleep disorder. For example, obstructive sleep apnea, which is more common in Autistic people. Now that stretchy connective tissue in the airway that's collapsing on itself while the person is sleeping. Now that muscle relaxant maybe made that problem worse, which made their nervous system condition worse because their sleep was worse, and now the nervous system condition, the dysautonomia, actually makes the pain worse. So it's this vicious cycle where some treatments that are pretty standard and common, if the if it's we don't have an understanding of the whole cluster that may be impacting an individual person, we may end up on treatments that make other parts worse that they didn't know they had, and when you bring up the kind of the disconnection, separation between brain and body, or even brain and mind, like the way that the healthcare system separates these things is just-it's not true. It's just health, and health is the whole body. And so, you know, we see, for example, people come to us who have a variety of mental health diagnoses, and that really overshadows and gets in the way of doctors recognizing these physical body problems that have treatments that they're not being offered because they're like, oh well, that's your panic attacks, instead of recognizing, actually, why don't we look at the whole nervous system? Because the treatments are different.

Philip King-Lowe 

Yeah, I'm so glad you're saying this because of the charade that I have gone through for myself. I have chronic back pain due to lumbar disc protrusion. I have some increased hip pain over the last several months that I'm doing some PT for, but I also have a mind-to-motor matter by which, as I've been aging, I'm finding that I have to think a little bit longer about moving my body before it will move. You know, I also have sleep apnea. The thing that really frustrated me, and I know other Autistic Adults have had issues similar to this. Is when I went to several neurologists to talk about just the mind to motor matter. I had some say, "Well, it's not really because of Autism; it's because of depression." I'm like, "No, no". And that sort of thing. And then I had then the other matter that was just explaining to some doctors about how sensory processing can impact an Autistic's experience with pain. There's a great practitioner here in the Twin Cities that works with Autistic individuals for chronic pain management. You know, they're brilliant, and so many others. The thing is, is that when I go to my doctor, I mean, I have been really programmed my brain for self-advocacy with a doctor. I will sit there and give them as much information as I can because of you know, I want them to understand something, and if they don't, I'll tell them. Last but not least. One of my just moments of disbelief is that the neurologist who is supposed to be trained in the medical care of the brain, they're not educated about assisting patients who are Autistic. I have a great psychiatrist who was a neurologist before they became a psychiatrist, who does understand the difference okay? And they explain to me that the problem is that the Autistics are sent to the mental health system, behavioral stuff, and the medical doctors are just about the body or the science of the brain, but those two are kept apart, and that's why the two of them don't really talk to each other.

Mel Houser (she/they) - All Brains Belong VT 

Yeah, they're treated completely separately, which of course makes no sense. And I think that you know, in in my medical education, so I'm a family physician practicing primary care, you know, I got no training in the medical conditions that Autistic Adults. I mean, Autism was just talked about kids, and of course, just a stereotype, a subset of kids. And so, I think that it's what we've done. So, I run a nonprofit organization called All Brains Belong Vermont, and we have free resources that people can access that they can bring to their doctors. For example, we have a toolkit called the "Everything's Connected to Everything: Improving the Healthcare of Autistic and ADHD Adults Toolkit. And first off, there's information where people can learn to empower themselves to understand this grouping of intertwined medical conditions and how to talk about it with their doctors. There's also a half-page letter that someone can print out, bring to their primary care clinician. Don't say a lot. Don't print out 40 pages from the website. Just give the half-page letter. Let them read it, and it introduces the project in ways that doctors are used to understanding, so that patients don't have to worry about saying the just right thing to get attention that they need. So, and it directs the doctor to a healthcare provider toolkit, a clinician guide. It's a 16-page guide on recognizing the intertwined problems and how to manage them. And so, all of that is freely available on our website at allbrainsbelong.org.

Philip King-Lowe 

We'll talk more about the resource later on, but what I want us to do is I remember sharing an email with you because of the large number of Autistic individuals who are diagnosed with fibromyalgia. That's a huge population of many Autistic people.

Mel Houser (she/they) - All Brains Belong VT 

Yeah, it's part of the constellation.

Philip King-Lowe 

Yeah, please tell them what you were telling me about that.

Mel Houser (she/they) - All Brains Belong VT 

Yeah, no, I think that a lot of folks who receive that diagnosis actually have a, you know again this is just for this is not medical advice this is for education purposes only but I would say that a lot of people who come to me with that diagnosis they actually have a number of other medical problems that have other treatments available so for example when somebody gets a diagnosis of fibromyalgia their clinician may just stop being curious. It's like, oh well, that's why you hurt. As opposed to maybe you actually have a connective tissue problem like hypermobility, and maybe you have dysautonomia. Maybe you have a sleep disorder. All of these things worsen pain, or maybe you have, you know, maybe you have long COVID or one of those related conditions that is worsening your brain fog. So, it's not brain fog from your fibromyalgia; it's brain fog from these other things that have other treatments. That once that diagnosis of fibromyalgia is made, sometimes people, like clinicians, just they stop being curious about what else. If you have, you know, at least a couple of parts of this cluster, the likelihood of having other parts of the cluster is much higher, and I think we just need to keep an open mind and screen for these things because they're so common for Autistic people.

Philip King-Lowe 

Right. Yeah. And once again, we're talking about the nervous system and the nervous system and the brain. They do work together.

Mel Houser (she/they) - All Brains Belong VT 

Totally. Totally.

Philip King-Lowe 

Yeah, yeah. So, you know, the whole subject of chronic pain is a large part of being Autistic, and some of the various things. Let's talk about that relationship with pain in more detail.

Mel Houser (she/they) - All Brains Belong VT 

Yeah, pain in Autistic people is complicated. It's not just one thing. So, there may be, for example, that the nervous system is interpreting pain signals like the signals are louder, so the signals are bigger. So, it's called central pain sensitization is more common for Autistic people, and that mechanism is known in fibromyalgia, even if people don't have that diagnosis. Sleep disorders worsen pain. Hypermobility, as I said, dysautonomia worsens pain. It might be a blood flow difference, for example, Reynaud syndrome, where the blood vessels kind of close off on each other in response to cold. Blood vessels narrow. So, pain is many different things, and I think again this grouping or cluster of intertwined medical problems, just like sort of thinking about all of them and seeing to the extent to which each part of them might be contributing to somebody's pain is important, and the toolkit talks a lot about that.

Philip King-Lowe 

Let's also talk about some digestive matters. There's a lot of Autistics who are diabetics or have other eating or other issues. Let's talk about that.

Mel Houser (she/they) - All Brains Belong VT 

Definitely. So, you know we see that there are so many different ways this shows up in Autistic people. So, it maybe you know food sensitivities like immune system responses to certain food. It may be something like ARFID, and ARFID is many things. So avoidant restrictive intake ARFID is very common, and I think that sometimes this gets labeled as like a psychological problem when really, if you, for example, have like sensory aversions where your nervous system is experiencing that food as a threat, you're not going to eat. You're going to protect yourself from threat. Or if you have mast cell dysfunction, which is an immune system condition that's really common, so it's one in five people have has mast cell activation disorder, and Autistic people, it's more than that. And so, if you've had immune reactions to food, your nervous system's not going to let you eat that food. You're going to avoid the thing that has caused you harm. And so, I think that like having a lens to understand one's food "behaviors" and like thinking about it as safety. I think that everybody's nervous system is designed to keep us safe, and so you know. So, I am always striving to avoid the things that are going to hurt me and go to the things that are safe for me. And a lot of people don't have safe foods, and so it's very hard. And so having this lens of this is an immune system problem, getting out of the realm or of only thinking about mental health, I think is really important. And so, I think what we see a lot of people they start off with having their immune conditions or they're having, you know, irritable bowel syndrome. They're having pain, or nausea, or diarrhea, or any number of symptoms that are distressing and hurtful to the body. Then, then we start avoiding a food, and then our life gets more and more restricted, and then we don't get our nutritional needs met, and then we have like some maybe we have some circular repetitive thoughts about that food, and we get down to different pathways of disordered eating, which are more common for Autistic people. It's like it's not just one thing, and I think what we see often in standard "eating disorder treatment," we see that there is no attention given to mast cell dysfunction. There is no attention given to digestive conditions. There is no condition about sensory processing. They're not thinking about any of that stuff, and it's really important.

Philip King-Lowe 

And then there's a matter that I've been sent to my share of certified diabetes educators, and I find this comical, quite frankly, where I have said, "Do you know what interoception is? Most all the time, they like, "no, I have no idea."

Mel Houser (she/they) - All Brains Belong VT 

I can't. Yeah, I mean, I'm not surprised to hear that.

Philip King-Lowe 

It's just that I've had to tell the professional my diabetes educators what interoception is, which is like

Mel Houser (she/they) - All Brains Belong VT 

A basic concept for how on earth do you support people in eating without knowing how they feel their signals of hunger or fullness? That's really disappointing.

Philip King-Lowe 

Yeah, it really is. And then there's Autistics who don't eat at all for hours and hours.

Mel Houser (she/they) - All Brains Belong VT 

Yep.

Philip King-Lowe 

Because of the same issue. Yep. You know. I've had the most I call it fun just because it's it is fun in a way. But you know, they don't know about intersection. I'm like, you know, just like you know, I've had some good therapists in my time because I had that a point. My audience has heard me tell this story before too, where I knew I was uncomfortable, but I didn't know I was in pain. And then suddenly it was so intense, so much. I mean, I could not walk from my desk in our old apartment to the kitchen without needing something to sit down because the pain was just unbearable. It was awful. So, I, you know, my psychotherapist at the time said, "What's happening there is you've gone from hypo sensitive to hypersensitivity to the pain. What that means is now that you're really feeling it, those neurological receptors that go to the brain are telling you that you're in pain over time. So yes, now it's a little bit more intense for you” you know? How can Autistics begin to better understand how their bodies and their brains work together. We've talked about the nervous system, but you know, especially where many people will might have dyspraxia, where they don't know how they are feeling their body.

Mel Houser (she/they) - All Brains Belong VT 

I think you know one of the things in in our patient community is that we tell people explicitly: you are the expert in you. You are the expert in your brain. You're the expert in your body. We're here as guides. But I think the healthcare system sends a very different message. It positions the doctor as the expert and the patient as like the passive receiver of information. So, I think really flipping that is essential. So, it begins it begins with that. I think first off recognizing you're not alone. You're not the only person who goes through this. This is really common for Autistic people, and maybe equipping yourself with some knowledge, for example, from the everything's connected to everything toolkit, to just like empower yourself to know what's happening. Like you're not relying on an expert to tell you what's happening. You just sort of know, because I think what's really important, for example, is that when a lot of the there's not a lot of like objective blood tests or things that show that this is happening. It's like matching the patterns is how the diagnoses get made for a lot of these conditions. And so, you know you will probably have doctors order a bunch of tests. They may come back you know quote normal, and then the doctor will say, oh, can't find anything. You're fine, but it's like you're not fine. You're in pain. You've got all you know. You're suffering, so you're not fine. We believe you. Other people believe you. There's other people go through this, and when you have the predictable system that the tests might come back not showing something, but there is this known constellation that you know many Autistic people have in our practice. 94% of our Autistic patients have this constellation. It's very common. So, to know about these problems is one thing. Another toolkit that we have for free on our website. It's called Universal Design for Healthcare, where it's a menu that we offer to our patients of offering healthcare in lots of different ways, lots of different ways to communicate. You pick your lighting, your furniture from a range of sensory or executive functioning supports. How do you like to receive information? All different kinds of things. And so, even if you don't go to a medical practice that offers things to you, that same menu might give you some ideas of what you might ask for to be more comfortable and to get what you need at your healthcare appointment.

Philip King-Lowe

Coming up after this next commercial break, Dr. Houser and I will talk about what an appointment with Mel would be like for an AuDHD person.

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Segment 3

Philip King-Lowe

Welcome back. In this segment we will talk about what would happen at an appointment with Dr. Houser, various medical conditions, and talk about the physical impact of the stress many Neurodivergent and Intersectional individuals experience.

Philip King-Lowe 

So, let's say someone comes to you, an Autistic is coming to you, and says to you, "I'm having trouble eating. I have a lot of pain, and I want to know what's happening to me." Can you walk me through what you tend to do with these people who come to you?

Mel Houser (she/they) - All Brains Belong VT 

What a cool question! No one's ever asked me this. I did a lot of podcast interviews. Nobody's asked me that. Yeah, let's talk about that. I love that. I mean, first off, like the history is everything. What the patient tells you is everything. So really taking time to explore that. When did that start? What are the specific triggers that make it worse? What makes it better? What are the other kinds of other symptoms that you're having? Because in my mind, even just knowing that the person is Autistic, I'm already thinking about the constellation of intertwined medical problems. So, the questions I'm going to I'm going to be asking are around not just the symptoms they came in with, but the whole cluster. So, like the questions I'm asking are drawing out screening for the whole cluster. In my mind, or just you know, in in my experience, a lot of times people are having immune responses. So, a type of immune cell called the mast cell tends to be dysregulated for a variety of reasons, and there's lots of reasons for that. But more common in Autistic people. So, I'm already going to be like also probing for other signs or symptoms of mast cell problems. There's a tool that I really like that was developed by a dietitian named Jill Brooks and her husband Mike Brooks, who’s a database tech expert. I think they made this tool called WhatTheBleepcanIeat.com, and usually what I do in some initial appointments is I'll pull that tool up. They have part of it called the Food Detective, and I'll help someone just from an executive functioning standpoint. They could do it on their own. They may prefer to do it with me. We're putting in you know certain things that are known to be triggers, and this tool will show you some patterns. You know which of these things that are triggers are actually all nightshades or salicylates or oxalates and because a lot of times people will think that they can't eat anything because it may just be that their mast cells are so dysregulated that they're reacting to everything, but the actual thing that's the primary problem is like one or two things, which you know then then puts us on a different kind of path than you know, we certainly don't want people to be restricting all of their foods, which is what people tend to do on their own before they come in for care.

Philip King-Lowe 

Someone comes in and says they're in chronic pain.

Mel Houser (she/they) - All Brains Belong VT 

If they're Autistic, I am already screening. I mean, I'm gonna again take a history. When did it start? What's the pain like? Where is it? What makes it worse? What makes it better? All of those usual type questions. But in my mind, I'm already thinking about hypermobility, and I'm going to screen that person for hypermobility. And in my experience, you know, most of the Autistic Adults with chronic pain who I see, which is actually most of my patients, almost all of them have hypermobility, and this has been not thought about because they don't present as like the stereotypical gumby, you know, extra bendy like that. Because over time, when people have actually unstable joints that are moving out of alignment, the muscles get really tight that to provide some extra stability, and so the person doesn't present as flexible. So, the clinician doesn't necessarily think about hypermobility, but actually, when you screen them, that's what they have, and a lot of times this is normalized intergenerationally. So, if my parents have chronic pain and you know can have all these other things that it's like oh yeah that's what happens. So, the six-year-old with growing pains becomes the adult who with chronic pain, and this, you know, the hypermobility was not recognized, you know, throughout the course of life.

Philip King-Lowe 

So, an Autistic patient comes to you, says that they were diagnosed with fibromyalgia. Let me ask you this: How many of them really are, if you can tell me, and how many of them aren't?

Mel Houser (she/they) - All Brains Belong VT 

I think it's just like, I think. What's the point of diagnosis? I think it has multiple points. So, one is providing you like with a direction, a roadmap for treatment strategies that are known to be effective for a thing. That's one part of why a diagnosis matters. Another part of why a diagnosis matters is sometimes from an identity shifting standpoint. Some people who you know they're joining a group or a community of other people who align under this label sometimes that's helpful for people. Sometimes it's not. So, when somebody tells me I have a diagnosis of fibromyalgia, I'm first trying to understand what that means to them because if they're very attached to that diagnosis and it's helpful to them and it provides comfort or reassurance or identity, like that's not my job to mess with that. You know, if somebody likes their fibromyalgia diagnosis, great. But my job is to make sure we're not missing something. Fibromyalgia is a diagnosis of exclusion, and so if you've got a diagnosis of fibromyalgia, but nobody screened you for dysautonomia or hypermobility, like that's my job to do, and so that's usually how I approach those conversations.

Philip King-Lowe 

Talk about hypermobility. What is that?

Mel Houser (she/they) - All Brains Belong VT 

Hypermobility is refers to differences in connective tissue, which are like the building blocks of what holds our body together, our ligaments that hold our bones on, our muscles, our skin, our soft tissue under the skin-all of that is connective tissue, and connective tissue runs through the whole body. It's the lining of your organs. It's everything, and so when we say hypermobility, we're usually talking about like a spectrum, and that spectrum could be joint hypermobility, like the ligaments are extra stretchy. It could result as like the skin being really stretchy. I'm showing you my hypermobility in my skin. It could result in you know people who have things like retinal tears, or you know constipation where their colons getting really stretched out or prolapses of their, you know, their bladder or their rectum or any number of things. So, the connectivity can be everywhere. But so, when we're talking about joint hypermobility in particular, this is a, you know, a genetic heritable difference in how collagen works. So, collagen is the building blocks. It's like a protein that builds the connective tissue. And so, the collagen. It's not that we don't have enough of it. It's that the collagen we have doesn't work like other people's collagen. And so, this could relate to like this whole. You know, I think about this as like overlapping Venn diagram circles. It could be joints. It could be muscles. It could be skin. It could be organs; it could be you know any number of things. So, does that answer your question?

Philip King-Lowe 

Yeah. I want to spend this last piece of it talking about the incredible stress the Autistic body feels with sensory processing, and again, this is something that is missed by physicians more than can be understood by them.

Mel Houser (she/they) - All Brains Belong VT 

I went through medical school not knowing I was Autistic. I didn't get my diagnosis till I was 37. I got no training in sensory processing at all.

Philip King-Lowe 

The thing is, is that you know, there's a lot of stresses placed on the body by places with bright lighting, loud music, or you know, that's not helping the nervous system nor the body here, and once again, the place that is the disconnect I feel is that sensory processing. You're right; it's neurological. It's related to the nervous system but is also effective on the body. And one conversation I've had with a few who have been diagnosed with fibromyalgia or other matters is that, and correct me if I'm wrong, but you know, fibromyalgia is has some measure of connection with your sensory system, and so because the Autistic body and brain experiences stress on a level that is not understood by the neurotypical population and all that, the dominant population, It's like there's again almost no way to explain that to them because of how much we're gaslighted about sensory processing.

Mel Houser (she/they) - All Brains Belong VT 

Yeah, that resonates with me a lot as there's a lawn mower outside my window right now, and my brain is about to explode. Yeah, I mean the cost of sensory processing at the level of the neuroimmune systems. Like it's not yes, it's the nervous system. It's also the immune system. I hear that lawnmower first off. Like not only is it the sensory pain of that sound, but it's also like vibrating my house, and I'm like feeling it in my skull, and the vibration triggers the mast cell, so now I'm having an immune response to that friggin lawnmower, and this is like what goes on all day for so many of us. I would also say that for a lot of us who have chronic illness, for example, myalgia encephalomyelitis or long COVID, when we think about pacing, pacing our energy, we might think about physical activity, cognitive activity. There's also emotional activity. There's sensory activity. There's orthostatic activity. Just being upright against gravity. All of these things cost energy, and so an Autistic person who is draining their battery constantly, and of course, we know, you know, in Autistic burnout, someone may have even less capacity than they usually do. Like on a good day, the lawnmower bothers me. On a bad day, it's like very difficult to function with that lawnmower. So, I think that like what we spend a lot of time with our patients is like figuring out the whole balance of the adaptations to one's environment or routines, and of course, there's so much privilege associated with actually being able to control your environment.

Philip King-Lowe 

Back in 2021, I had a show about Aging Autistic Adults: What we needed yesterday. And I had a Certified Autism Specialist, Dr. Teresa Regan, who talked about how many patients in the hospital she works at get diagnosed with dementia, and then she will get called down because they were diagnosed with dementia, put on drugs that they should not be on at all, and then she will go in and do an evaluation, come back to the doctor and said, "This patient of yours does not have dementia. They are Autistic. And the like I said, by that time they put on been put on medications that actually proved to be harmful, you know. So, before I go to my second question, let's talk about those medications that sometimes get diagnosed and the damage they can do. And I don't know. I'm sure you will meet many of them. I mean, what can what do you do with some of those who have been damaged? I mean, how do you help them recover from that?

Mel Houser (she/they) - All Brains Belong VT 

I think we see this all the time. You know, I think that, and this starts with childhood, right? With behavioral control. So, a young child being prescribed antipsychotic medications-they're not psychotic. It's just that they are dysregulated, and the medication is sedating them, as opposed to recognizing that dysregulation, like Dr. Stuart Shanker says, is the body's way of communicating. You know, the nervous system's way of communicating what's going on with the underlying physiology, and so a lot of times it's this kind of reflexive control prescribed sedate, and this is what we see in older adults as well. And I think that these medications, you know, have their place when someone is psychotic, but they are used far beyond that. They are often used for behavioral control, which is, you know, that that not. Can I restate that? Can I say that sentence again? Okay, yeah. So, they're not being used. So, I think these medications have their place. They are antipsychotics. Their use is when someone is psychotic, but when someone is not psychotic and these medications are being used for sedation, that's harmful. And these medications have real side effects and contribute real harm. You know, and I think that whether it is you know dropping dopamine levels for people, Autistic and ADHD people who need dopamine more need more dopamine and have less dopamine and churn through their dopamine faster. Whether it's the cardiac risks of these medications, I think that these you know this is just it's really important. And I think that especially older adults who you know in our in our patient community we have folks in their 60s, 70s, 80s discovering that they're Autistic for the first time, and they finally have the opportunity to understand how they move through the world, to rewrite past narratives, to recognize that they're not broken, defective people. They're Autistic, and their environments have not been working for them their whole lives. And so, you know, I think that becomes powerful at any age to like to come to understand yourself and you know rewrite those narratives, particularly in community with other people who are also unpacking the internalized ableism and you know everything else.

Philip King-Lowe 

Yeah. Well, one last story of my own before we launch into my second question here, but back a few years ago, I had carpal tunnel surgery on one of my wrists. After that surgery, the surgeon put me on a narcotic painkiller, and I took that narcotic painkiller. My anxiety went through the roof. I was more anxious. I was uptight. I got up and wrote this long message to somebody that didn't need to be written, and whatnot. So, I just thought that maybe, that a narcotic painkiller messed with my anti-anxiety medication. And so I went to my psychiatrist, who knows Autism inside and out, and I told him what happened, and he said, "Oh no, that's not what happened at all.” He said, "What happened was your Autism caused that medication to work paradoxically, and I was like, really? Oh yeah," you know that can happen, and yeah.

Mel Houser (she/they) - All Brains Belong VT 

The other thing that comes up for me is when somebody has like an extreme reaction to medicine, I who is Autistic and therefore more likely to have something going on with their mast cells, that part of the immune system we talked about before. So, people with mast cell dysfunction often react to the inactive ingredients in medicines, so do the fillers, the dyes. So, a lot of times, it's the mast cells in the brain that are having this big reaction. And so, when any of my patients have a reaction like that, I'm like telling me which generic it was, so I can look up the inactive ingredients on the, you know, the NIH website, so I can see what's in it. Oh wow, did you know there's dye, there's shellac, there's all kinds of stuff that like your body's reacting to. So, I think both of those explanations are very common.

Philip King-Lowe 

Where do we see Autistics thriving in their health care?

Mel Houser (she/they) - All Brains Belong VT 

Yeah. Well, you know, I see this both as an Autistic person with chronic illness myself, and you know, leading this community of other Autistic and otherwise Neurodivergent people with complex chronic illness. It's like coming together as a community. I think that is what allows. Then I mean, it's not going to like erase having health problems, but I think one having a self-understanding of what's actually happening, which points toward treatments that actually help, and then being part of a community of other people who get it, where you can show up safely as your authentic self with all aspects of your identity, which settles your nervous system, which settles your mast cells, which allows you to actually begin to heal from your medical problems, and have those treatments allowed to be to work in ways that is just simply not possible when people are in a state of fight or flight for you know all of their waking hours or even their sleeping hours. So, I think that where I see thriving is understanding yourself and your health and how you move through the world, being connected to other people you feel safe with, and that you learn how to adapt your environment and routines to meet your access needs.

Philip King-Lowe 

My dear Autistic Adult community, you must be the expert about your brand, make, and model of Autism. If you do not be the expert about your brand, make, and model of Autism, you won't know what you're advocating for. You have to know what your sensory needs are, and yes, it takes a while to really get in touch with that stuff. You must learn that, and you must be the expert at communicating how your Autism works, what it does, what it doesn't do. And finally, the best way to advocate for yourself, is to tell your stories about what being Autistic means for you. The problems that Mel and I are talking about-they are not going to go away anytime soon. They're going to continue. I'm sorry to tell you, but they will. So, I recommend that you do some writing to yourself or about yourself, whatever you do. But write some stuff down and be ready to tell that to a medical doctor or somebody about what it means for you to be Autistic. It's not easy. You're going to find some people who will not be helpful to you. If you have a medical doctor that is not hearing you, you have the right to find a doctor who will. Okay, these are things you must have in your self-care box.

Mel Houser (she/they) - All Brains Belong VT 

Oh, I could not agree more. That was so beautifully said. I think the one thing I'd add is that I think that for many folks they struggle with like having the language like they don't they don't have words it's like the um if you don't know that something's a thing yet you can't match the pattern in your own life so you know I think about I spent you know 40 years not knowing that I had sensory processing differences I had no idea, but now I can have the lawnmower come past my window, and for me to get dysregulated and say, "Oh, it's because the lawnmower." Like I wouldn't have known that that was a thing. So, we have another free program most Tuesday nights called Brain Club. It's on Zoom, and we have community panelists sharing lived expertise about what it's like to interact with healthcare and workplaces and in community, and so we find that that and brain clubs open to everyone and it's free, and we find that that's a great place for people to come and hear the way other people talk about their own experiences. And a lot of people are like, "Oh, that's exactly what goes on for my brain, and now they have a way of communicating that to someone else.

Philip King-Lowe 

Yeah, yeah. As part of the question about our intersectional communities, and here's another topic I really have not covered that really does need to be addressed more in the future. Yeah, we're talking about our communities of color, but LGBTQ people and HIV/AIDS. I have not touched on that at all. I regret to say, what is your experience of dealing with Autistic individuals who are HIV positive?

Mel Houser (she/they) - All Brains Belong VT 

Well, I'd say that you know, just zooming out the bigger picture of like all of the different ways in which humans are othered in this society for all aspects of identity, some of which you've named, but also, you know, class and disability and you know, age and sex and gender and race and all the things. I think that when you stack those intersectional aspects of marginalization, like people are going to have a worse experience. They're going to have compounded harm. I think you know, in our experience, you know, and I'd say most of the All Brains Belong community are multiply marginalized people for various aspects of identity, and it's just it's really hard, and you know a lot of like when we talk about how you know meeting learning about your access needs, meeting your access needs, a lot of people just don't have the privilege or agency or autonomy over their environments, and it just becomes you know really hard. And think about like the isolation, you know, loneliness is a medical problem. And you know I think that you know the more isolated someone is, the more you know the shame, the invalidation, the lack of community care that they have access to-you know-that's that's going to be extra harmful to health.

Coming up after this final commercial break, Mel will talk about the organization All Brains Belong and I will mention other resources.  Today’s Autistic Community Bulletin Board will follow.

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Commercial Break II

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Future Shows

On November 29th, Elizabeth Duffy from Roots and Wings Therapeutic Services will join me for the episode Thriving Occupational Therapy for Autistic Adults.  Occupational therapy is a great Neuro-affirming option for Autistic Adults. Occupational therapy offers ways for Autistics to organize tasks like brushing their teeth, managing chronic pain, and working with interoception for daily routines.

The final show for season 6 will be on December 13th, Eric Garcia will be my guest for Autistics Thriving in 2026.  In this final show for 2026, Eric Garcia and I will talk about how Autistics have been thriving this year. We will give examples that show the strengths of Autistics as we are thriving and creating community. 

Thank you for listening to Today’s Autistic Moment.

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Segment 4

Philip King-Lowe 

Last but not least, we're going to talk about resources. You've talked a lot about your resource. Talk a little bit more about that, and what are some other resources that people ought to be looking for?

Mel Houser (she/they) - All Brains Belong VT 

Yeah. So, you know, if you heard any of anything today that that resonates with you, we invite you to get connected. We have free community and education programs open to everyone. The best website to find everything we have going on is allbrainsbelong.org/get-connected, and you can you know check out everything we have going on: free toolkits and Brain Club and programs for kids. I also have a book coming out November 6, A Failure of Imagination, how the healthcare system fails Neurodivergent people, and what we're doing instead. And it describes at a granular level how to replicate some or all of what we're doing here. It also gives you ideas for what to ask for in your healthcare experiences, and to understand, you know, some of the things that we've talked about today, even language to understand, you know, the experiences of sensory processing and loneliness, and the ways that workplaces and schools and everything that you know isn't thought of as healthcare but is very much part of health.

Philip King-Lowe 

So, among other resources that I would name Latoya Hinton has done a lot of work with healthcare. Our friend AJ Locashio and folks there-they've done a lot of research on this. Dr. Teresa Regan for older people and older Autistic people and that sort of thing-they've all done a lot of work on these things. Go back to that one from 2025 about Physical Autistic Leadership with David Gray Hammond, and lots of other things that are out there. And the point is, is that we repeat, you don't have to be like all the others. No, that's a miscommunicate. And like I say, you know, your body is your body, your Autistic body, your Autistic brain. And so, I hope that what we've said today will be of help to you, Mel Houser. Thank you so much for being my guest today. Thank you so much for all this information and this conversation that has just been marvelous. Thank you so very much.

Mel Houser (she/they) - All Brains Belong VT 

Thank you so much. This was wonderful.

Philip King-Lowe 

Thank you.

Transcribed by https://otter.ai

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Today’s Autistic Community Bulletin Board

All these events and many others such as sensory friendly concerts, art activities and museum information links are available on

todaysautisticmoment.com/bulletinboard.

The Adult Coffee Club for Autistic Adults in Minnesota are held on the second Tuesday of every month (weather permitting) at Dogwood Coffee located at 2700 University Ave W. Suite 100 in St. Paul, Minnesota. The Zip Code for your GPS is 55114. The Adult Coffee Clubs will begin at 3:00pm to 5:00pm on December 8th.

Understanding Autism virtual classes are offered by The Autism Society of Minnesota. The next classes will be on December 14th, 6-7pm.

On December 3rd, beginning at 9am to 12pm, there will be a workshop at The Autism Society of Minnesota entitled: Just Talk to Me: Setting and Respecting Boundaries within Relationships. Kendrick Hogue will be the presenter.

Go to ausm.org to learn about these and other social and recreational programs, educational events, counseling services and support groups at The Autism Society of Minnesota.

MNeurodivergent is a social club rooted in a vision of bringing Neurodivergent Minnesotans together to build meaningful connections.  Its core principle is to foster an environment where all are treated with dignity and respect regardless of ability or preferences. Go to their website mneurodivergent.org for more information, become a member, volunteer and attend their events.

Be sure to check out the events at Queermunity. Events include finding out about local LGBTQIA+ resources for those who have relocated to the Twin Cities on the 4th Wednesday of every month. Trans Health Insurance Enrollment. Fruit Salad Queer Open Mic on the fourth Thursday of every month. Crafting and Game Night on Fridays at 4pm to 8pm. Beats and Breath Yoga Based Movement Class every Saturday at 11am. Go to their website at queermunitymn.com to learn more about Queermunity and their many events.

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