Dr. Mel Houser on Navigating the Healthcare System as a Neurodivergent Person

Debbie:

Hey Mel, welcome to the podcast.

Mel Houser:

Thanks for having me.

Debbie:

I’m so happy to bring yet another new conversation. I’ve been doing the show for over how many years has it been now? It’s been over eight years and I am always thrilled when I can bring a new, completely new topic to the show. And so I’m really looking forward to getting into your work today. But before we dive in, would you spend a little time talking about who you are in the world and kind of your personal why for what you’ve created through All Brains Belong. I guess really your story. Tell us a little bit about your origin story, if you will.

Mel Houser:

Sure thing. Yeah, so I’m an autistic family physician and I’m the executive director of a nonprofit organization in Vermont called All Brains Belong Vermont. And we’ve developed a new model of healthcare to try to meet the needs of people who have felt dismissed, invalidated, not had their needs met by the traditional healthcare system. And the model we’ve developed here is integrating medical care into social connection, employment support, helping people arrive at a deep understanding of their needs. And as for my why, when I was 37, I learned for the first time that I’m autistic, ADHD, dyslexic, dyscalculic, dyspraxic. I didn’t know anything about my brain until then. And like many late identified neurodivergent adults, I discovered these things, received these diagnoses in the context of autistic burnout. And literally within a few weeks of receiving my autism diagnosis, I learned that the life expectancy for an autistic person was 36 to 54 years with premature cardiovascular disease and suicide as leading causes. I was 37 and I had a then four -year -old autistic child. It was a hard stop. Like, how is this possible? How did I not know this? How does nobody knows this? And this is completely unacceptable. So I quit my job. I quit my perfectly stable job and started this nonprofit organization to try to intentionally reimagine what health care can look like. And, you know, really the model over the past, because it’s we’re we’re we’re a toddler nonprofit. We’re two and a half years old. It’s really a model of community -driven healthcare. It’s about unlearning a lot of traditional medical practice and like the way that healthcare services are delivered. It’s really about operating in ways that are good for all humans with a focus on community and giving people a place to belong and to become.

Debbie:

Such a fascinating story. And I knew some of it. I didn’t realize that all of the information you learned about your brain, I knew about the autism and the ADHD, but all of those other learning disabilities, like, I don’t even have, how did you get through all that you went through to become a doctor? How did you do that?

Mel Houser:

You know, I think that so many brains learn to compensate or maybe there’s also this component of things being really hard, but you don’t know why they’re hard and you find all the workarounds or you avoid like the nuanced things that are hard and do some like oblique way to do them. I think I’ve probably been doing that all my life.

Debbie:

Wow. And would you mind just telling us what you were doing, what your kind of stable job was that you were doing when you decided to make this pivot?

Mel Houser:

Yeah, for sure. So I’m a family physician. So I care for toddlers through older adults. And I worked at a traditional primary care practice, but we also cared for our own patients in the hospital. So early in the pandemic, I was caring for sick patients in the hospital and seeing patients in the clinic and was on call for 24 hours, seven days straight. And you know, that kind of sleep deprivation and dysregulation and like, while also that homeschooling my then three year old while listening to your podcast, you know, that was my life. And what I would say is that probably for the past, like the last two or so years at my previous job, my clinical practice had really evolved towards support, recording neurodivergent kids and adults, often multi -generational families. So that happened already. And what I was finding was like, so not only was I like learning about my own brain and learning about my child’s brain, but I was also recognizing that my patients, their needs were not met by all of the broken systems. It wasn’t just healthcare. You know, they were struggling to access their education. They were struggling to access jobs. They were lonely.

And I remember this one day I was seeing an eight year old sweet little love who loved Pokemon and had no friends and was being bullied at school. And then right after that, I saw a nine year old autistic child who also loved Pokemon and had no friends and was being bullied at school. And I was like, what is this? What is this madness that I can’t introduce these sweet little loves and have them happily ever after in community? And it just made no sense to me that healthcare was treated so separately from the rest of life. And it felt like, all right, well, in order to really meet my patient’s needs, I have to break through the constraints of the traditional health care system and just think about what makes sense. And we have so many people who all these different domains of their life are not being addressed. What could it look like for health care to be more than medical care?

Debbie: 

So inspiring. And, you know, this is something obviously, in creating Tilt, I was trying to question all of these systems, right? And I recently did an episode, which I was so excited to get out into the world. I brought in two therapists and we talked about specifically therapy and therapeutic modalities and what are some of the limitations and the challenges of applying those traditional approaches to neurodivergent kids, adults, clients. And so, and I feel like you’re tackling the healthcare system, the medical care system in the same way. Could you talk about some of the, what you see as the biggest limitations or challenges or the shortcomings of the healthcare system when it comes to serving their neurodivergent patients? Yeah, let’s get into it.

Mel Houser:

So many things. So, you know, there’s a literature based on this about the barriers that there’s a study by Dardie et al. in 2020 looking at the barriers faced by autistic adults accessing primary care and these clusters of themes around the environment and healthcare interactions. Limitations related to the provider, the knowledge, skills, and attitudes that autistic people perceive that healthcare professionals don’t have adequate knowledge, skills, and attitudes to provide care to them. And the systemic barriers. You know, I think there are so many defaults in the healthcare system. I mean, just like there’s defaults in school and defaults in work, please read. It’s the default, one way to do the thing. And when we have this mainstream society with the one lane to go down, it doesn’t have to be like that. And so health care is that way. You need to pick up the phone to make an appointment. You have to fill out the 20 page packet to become a new patient, like all those things. And it’s just, that’s the default. And so anytime anyone’s brain works differently than the default, they’re not only gonna struggle to access, but even with the accommodations and workarounds, there’s still others. And so that’s what the literature shows and that was certainly the experience in our patient community. And that’s how we started actually. We asked the people what they wanted. We asked the people what they needed, what they wanted. We asked them what stressed them out and we designed programs to address those things. It was really a co -created like community health village of people coming together, looking for something different. And, you know, like to, cause to think that, you know, the, the, the abysmal healthcare outcomes for neurodivergent people to think that it has to be that way. That’s just, it’s just a failure of imagination.

Debbie:

Yeah, and I mean, the timing is so right for this. There is so much more, I feel like in recent years, there’s been a big growth in awareness of neurodivergence. And certainly we’ve seen companies start to modify their workplace environments, at least on paper. They’re more neurodivergent affirming, but it seems like it’s well past time for this to happen. One thing that came up as you were answering the question about being othered in some of those barriers, I’m also thinking about when our kids, when we take our neurodivergent kids and they’re quite young and they might have a lot of sensory issues or other issues that mean they have big responses to things, how much prep work has to be involved and how much having a nurse or someone that they’re engaging with who actually understands and can support that piece is, I feel like it’s a rarity. Can you talk about just your experience in going through medical school and all of this? Is there learning that happens about neurodivergence? Is it like an hour long lecture and that’s it or?

Debbie:

Yeah. So I trained 15 years ago. I got a one hour lecture. It focused on the triad of impairments. It’s really the medical education system that is stuck in the early 1900s. And, really I was explicitly taught that there was one correct way to develop One correct way to, it’s interesting when I do, when I do trainings, you know, sometimes I talk about this with my now seven year old. and I said, I’m going to go, I’m going to go do a, a, a neuro -inclusive healthcare training. What should I tell the people? And my sweet little love, they were five at the time when we had this conversation and they say, mama, tell them there’s no right way to be a person. That’s my baby. And that’s, that’s the thing. Healthcare, medical education actually believes that there is one linear correct way to develop. So when you ask me about barriers, I think that’s important to name. I think that the medical model is a barrier to access. I think that the way a professional sees you influences your interactions. If someone is viewing me through a deficit -based lens, my limbic system sounds the alarm. You’re not safe. And there are so many patients who do not feel safe in healthcare environments.

Debbie:

Yeah. Yeah. Right. And the dynamic is already set up so that there’s an expert and then someone who really doesn’t know anything. So it’s already so uneven.

Mel Houser:

And they’re not wrong. I think like one of the things that I that that reminds me of, you know, for the patients we serve at All Brains Belong, you know, not everyone is neurodivergent or identifies as neurodivergent. But what they did have in common is that their needs were not met by the traditional health care system. And amongst that group, what they also had in common was a pattern of medical conditions, a pattern of intertwined medical conditions that they always felt were connected. But because of the healthcare system, the constraints of the health care system, you must see patients every 10 to 15 minutes, et cetera, et cetera, really gets in the way of clinicians addressing multiple problems at a time. And the big picture doesn’t get identified. And so why that really matters is that so patients, we’ve got the stresses from the environment, the trauma from past encounters, we’ve got the person, the professional who is dysregulated themselves often not having their access needs met by the system. And so the system thwarts everyone. 

And that’s, I think, a really important factor in patients not getting what they need. And so why I brought that up is because when you say that not only this imbalance of I am expert, you are a patient, whatever. But it’s really shifting that. It’s really, you know, I’m your guide and you are the expert in your body. And what is it like to empower people to understand their health within the context of everything being connected to everything and make, if I can start that sentence over, I’m like, when patients have a unified narrative to understand their health and their lives, that makes such a profound difference. And really shifting that power dynamic of, you know, you’re the expert patients and how are we gonna come together as a community health village to better understand this constellation of intertwined medical problems. And so that’s what we did. We didn’t know, you know, we knew that these medical conditions were more common in autistic and ADHD people. We didn’t know that 97 % of the autistic and ADHD teens and adults would have this constellation, 97%. I mean, it’s almost everybody. And so we learned that by learning from our patients. And so we formed a task force of multidisciplinary clinicians and community members, elevating the wisdom of lived expertise and really studying the best practices in this constellation because unfortunately, sometimes the standard management of some parts of this cluster, and I’ll give you some examples of like what’s in the cluster, but some of the standard management of some parts of the cluster make the other parts worse. And so if you’re not zoomed out enough, you end up having like internal conflicting access needs and people don’t get better when you fragment out their body parts. 

So, you know, some examples of this cluster. So connective tissue differences like hypermobility spectrum disorders or hypermobile aler stand loss, dysautonomia or a type of that called POTS, postural orthostatic tachycardia syndrome, gastrointestinal conditions, migraine, pain syndromes like fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, long COVID. I mean, the list goes on and on, endometriosis. And that’s, you know, not an exhaustive list by any means. It’s really neuroimmune conditions, the nervous system and the immune system that communicate with one another in all these different organ systems. And so you have to zoom out and approach this as one big whole, because if you don’t, you end up sometimes, as I said, having these internal conflicting needs. So for example, if somebody has chronic pain, it’s pretty common, you know, in where a doctor might prescribe something like a muscle relaxant. But if it was not known that the person had a connective tissue problem where they had floppy stretchy connective tissue, now the muscle relaxant made that worse. And by the way, that includes the connective tissue in the airway that now you’ve made their unknown sleep disorder worse, like obstructive sleep apnea, where now the floppy connective tissue is closing off the airway, which is going to result in all of their other problems, their migraine, their drosodinonia, their pain actually getting worse because they don’t have restorative sleep. And so you end up chasing your tail a lot because you just really weren’t seeing the whole construct. And so the work of this task force last year, we put together this free resource. We call it the Everything’s Connected to Everything, Improving the Healthcare of Autistic and ADHD Adults. But it’s not just autistic and ADHD adults, it’s not just adults, but that’s just where we started. And so it’s a comprehensive collection of resources, patient education materials, a clinician guide, a 16 page evidence -based clinician guide on how we actually support these issues. It’s all freely available on the website. And one of my favorite parts of this resource is it’s a letter that a patient can print out and hand it to their primary care clinician. It’s written in a language that doctors are used to speaking and hearing and seeing. All of the resources were vetted by primary care physicians who work in the traditional system who didn’t know about this and learned about this constellation of endocrine medical problems. So it’s written in a way that is really trying to bridge the double empathy problem. Dr. Damian Milton’s term about the breakdowns that happen when you have a mismatch of worldview and communication style. And so there’s so much, the double empathy problem between doctors and patients is huge. And so this tool, this simple letter speaks the doctor’s language and it takes the burden off the patient and the family for having to find the just right words like trying to get attention, trying to get what they need.

Debbie:

Yeah, I loved that resource and that letter specifically because I think that’s what so many parents need. Like we do so much research and we’re always advocating and we’re advocating often in spaces where we don’t have the knowledge or it feels really uncomfortable or there is that power imbalance. So you provide that resource, it’s like, here you go. This is what you need to know. It’s just so helpful.

Mel Houser:

And the feedback we’ve gotten is that that letter works best when not accompanied by too much other stuff. So it’s just the letter, hand it over, don’t say, look, I found this project. I’m hoping we can look at this letter together and you just start there. And this way, you know, you are empowering the clinician to browse the resources that they are finding important and relevant and salient to them. Because, you know, think about it like, as a PDAer who is the parent of a PDAer, you know, the unsolicited bids for attention that go on, like that, you know, involuntary limbic response to that of like, here, I printed out the 40 pages for you to read, even though all of it’s like really relevant, really important, that may not be an effective strategy.

Debbie:

Yeah, good point. That is very good advice. So just going back to what you were talking about, and I appreciate you walking us through these kinds of patterns of medical conditions that are commonly experienced. And what came up for me as you were saying that, and you talked about chasing your tail, right? Looking, you know, and treating all these things separately. How much that hurts people when they try this. And not only does it not necessarily work, but it might exacerbate other symptoms. And then you do this in all these areas and it can really contribute to this narrative that I’m broken. Like I can’t be fixed.

Mel Houser:

Right, and so the idea that a human being would have 40 things wrong with them, that narrative is harmful for health. It’s also completely not true. They don’t have 40 things. Why would that make any sense? They have one thing, the constellation.

Debbie:

Yeah, no, it’s just a complete reframe that I imagine changes everything. So we just talked about the challenges when all of these different medical conditions are treated as completely separate things. And I also imagine that because so many neurodivergent people aren’t treated with respect and feel really seen or they’re in environments that are uncomfortable for them, they might just opt out altogether. And so that’s a whole other challenge. So what are some of the other true costs, you mentioned the life expectancy for a neurodivergent person. Like what’s really at stake here?

Mel Houser:

It’s everything. So I would say that, you know, we know the literature shows us not only premature death, but 69% of autistic adults have untreated medical problems. 80% of autistic adults struggle to access primary care amongst people who have a primary care practice. It’s not like I got to find a practice. It’s not taking new patients. They have a practice. They can’t go. Like, and it’s, it’s not hard. This is not hard. And so, you know, I think that one size fits all does not work for all. Right. And so, if we can think about universal design for healthcare, that can bridge a lot of barriers to access. And so, you know, that’s, that’s what we try to do here. And I’m happy to talk about that, but, but, but, but to also name the cost. It’s, you know, if when you’ve got quote 40 medical problems, which you don’t actually, but, but, and, and, and quote, no one can find an answer. And the, this, this, this, this idea that we’re like searching for something and that there’s going to be like a blood test or something that shows this whole constellation that doesn’t exist. And so when, when medical providers are in a different paradigm. And the healthcare system is interfering with the clinician being able to access all of this. We’ve got, I really think this is a hopelessness situation. I think so many patients share that they not only have felt invalidated, dismissed, many people use the term gas -lated, by, through healthcare experiences.

And they, you know, why would I seek healthcare? That’s that place where they hurt me and nothing good happens, only bad things happen. And we see this even, you know, amongst adults who incurred healthcare trauma as a young person, that this really stays in the nervous system for some time. You know, maybe there was restraint involved with vaccines or dental care or something. And you walk in, and you see the fluorescent light, and it’s not just the sensory experience of the fluorescent light, it’s the trauma response to the other time you were in a place that looked and felt like this. And so one of the things that we’ve been very intentional about is having the environment not look and feel like a traditional healthcare environment, because you walk in and you don’t even get to interact with me. If you walk in and you see the thing that takes your body back to that time, we’re done. You’re done, you can’t access healthcare today, at least not fully.

Debbie:

Yeah. Yeah. I mean, you’re reminding me of when my kid was eight and had appendicitis and it was the first trip to the ER. And the idea of doing a blood draw was like, I’m like, you’re not holding my kid down. That is not happening. But it’s just the trauma from those types of experiences. And I loved, you know, on your website, you have some videos and to get to see what your practice looks like. And, you know, it just, it does, it feels like you’re just hanging out in someone’s living room almost like it’s just very comfortable. I love the intentionality behind that.

Mel Houser:

Thanks. Yeah. And again, that was like co -created with patients and all of our patients, you know, they don’t need to disclose a disability or ask for, I mean, they can ask whatever they want, but they don’t often need to because everybody gets a menu. Everybody gets a menu of options. So, you know, you pick your furniture, you pick your lighting, you pick, you know, indoor, outdoor, you pick, you know, from a range of sensory processing supports, executive functioning supports. You know, we really try to normalize multimodal communication. We have folks who come into the office and they’re speaking communicators, but they speak at a cost. And so they’re sending text messages in the chair next to me because why not? Why would I not want you to communicate in the way that you best communicate? Or we’ve got people who build these really cool mind maps that show their symptoms and what makes things better or worse. They send emails, they send text messages. Like, why would I not want you to communicate however it works for you.

Debbie:

Gosh, I love it so much. So I’m getting excited. Like, I’m like, yes, yes, this is so cool. I would love to just talk for a moment about the community piece because that’s a big part of All Brains Belong. You talk about it as a neuro inclusive health care and community. And you’ve said I’ve heard you say it in interviews, health care is community. So can you just say more about what you mean by that?

Mel Houser:

Yeah, for sure. I mean, I think first I just want to name the consequences of loneliness for health are really significant. There’s research that shows that loneliness has the equivalent impact on health as smoking 15 cigarettes per day. Whoa. So if, if, if, if someone is lonely, I actually can’t really get you healthy unless I address that. And so, you know, many of the patients in our community have not had the experience of being able to show up authentically as their true selves, you know, and feel safe doing that. And so for many people, this is the first time, you know, it’s people learning to show up, connecting with other people who are navigating similar challenges. And I think what I’ve seen is that this community -based model, it’s like the, I don’t want to say a fast track, but a faster track to shifting one’s internal narrative. Because when you hear your story reflected back to you through the stories of other people, I mean, so many people have shared, they feel so much less alone and so much more hopeful. And I think that is really health promoting.

Debbie:

Yeah, absolutely. Absolutely. So you talked a little bit about your All the Things resource and including that letter and how you’re helping both parents and families and adults, and you’re also helping to inform medical practitioners. So I’m wondering if you have thoughts on other ways that we can all be part of changing this bigger system, just so people who don’t have access to you. I imagine people are like, I want Dr. Hauser to be my doctor, but not everyone can be your patient. So how can we all be part of changing the system so we can all have a better chance of having access to this type of support?

Mel Houser:

Awesome question. You know, when I think about systems change, I think about, you know, there’s, you know, there’s top down systems change and like grassroots bottom up systems change. We’re like a bottom up systems change organization. It’s the idea of parallel play with the healthcare system and, and, and, and, and, a lot of the tools that we’re producing, cause it’s, it’s not, I mean, you’re, you’re, you’re absolutely right. All brains Belong is not going to be able to provide healthcare, certainly outside of Vermont. And people are suffering. That’s why we have these community and education programs. So we have a free weekly community education program called Brain Club, where we talk a lot about these topics. We have the Everything is Connected to Everything resource. I’m doing a free webinar next week about specific things patients can ask for when they go to healthcare appointments.

And we’re also doing trainings for healthcare practices and employers. You have to address it from all the sides because that’s what systems change, I think, looks like. It’s thinking about what you need and trying to adapt environments and routines to meet your access needs or your child’s access needs. And so you brought up the idea of, you know, you, you, you, you, you, you prepare for healthcare appointments, all the things that go into that. Like I, I, you know, of course I have so much privilege. I’m, I’m a doctor, I’m white. I know the medical system, the medical system, like all of that. and so you, my child who has had a lot of healthcare needs over the course of their life, they have had so much preparation and so many accommodations made and asked for, but patients, they don’t know what to ask for. They don’t know what’s okay to ask for. So you bring up your child going to the emergency department, you have the knowledge to say, I’m asking you not to restrain my child. Like, my gosh, thank goodness that you know that you’re allowed to ask for that, right? But things like, can you turn the lights down? If you don’t, but I think that it comes down to not just in healthcare, but in life, learning about one’s access needs or your family’s access needs. What does each person need for full and meaningful participation in their lives? Because when you learn that, then you know what to ask for. What would be best would be having a menu that you don’t, the burden is not on you to come up with your own ideas for your accommodations. And so, you know, that’s why we make these free resources and we post all over social media about them. And so, you know, that’s it’s the idea of providing ideas for them, people to go and ask for them because they’re not hard. They’re also free. It’s literally free to shut the lights off.

Debbie:

True, true. So I just want to say before I have one last question for you, but listeners, I’m going to have a lot of links in the show notes page. So please check that out so that you can follow the work of Mel and get these free resources. There’s just a lot of information on there and it’s very empowering to have this information. So thank you for creating those for the world.

Mel Houser:

Absolutely.

Debbie:

I’m curious to know before we wrap up, what kind of response you’ve gotten from healthcare practitioners that you train? Do you see resistance? Do you see a real willingness and openness?

Mel Houser:

I’ve been so encouraged by the receptivity of healthcare professionals. I think that it’s about the approach, right? So we don’t go in anywhere and say, hey, you’re doing it wrong. We talk about how there are systemic barriers. Patients are not getting their needs and clinicians are not getting their needs. It’s not the healthcare provider as villain, it’s the healthcare system as villain. And people are like, yeah, yeah. Like that’s the thing about the healthcare system, the people in it, they know that it’s not good. So that’s helpful. And so then we go in and we talk about inclusion, right? So everybody wants inclusion, they just might not have any idea what it means. So it’s the idea that how do you build environments where people with all types of brains can get their needs met? It’s not a set of practices that you do differently for say autistic people. It’s about how you do it, it’s universal design. How do you offer things in multiple different ways and give people freedom and choice to pick what works for them within the constraints of your environment? And so something as simple as thinking through the workflow of a patient’s journey through your healthcare experience. Are there any defaults? Anytime there’s a default, anyone else is going to be othered. So can you introduce one extra way for someone to do the thing? And they’re like, yeah, I can do that. And as it relates to the Everything’s Connected to Everything project, I mean, people have been really into it because it’s helpful to them. They’re in the trenches. They are slogging along with their 10 to 15 minute visits. These are really medically complex patients. And so this tool helps them. It helps them because it lays it all out there.

And it also, I think, contributes to clinicians and patients being able to communicate about these topics in a way that often has been difficult to achieve. And so they see it, and we’ve been really, we’ve been very excited to hear from clinicians that they appreciate learning about these things. Because I think it’s really important to note, like you asked me about, you know, what was your training about neurodivergence in training, like this constellation of intertwined medical problems, it’s not part of medical training. It’s not part of medical training at all. And so anyway, I think it’s all about, it’s about learning and unlearning. And when people are willing to unlearn, you know, so many things, that’s what’s really a prerequisite to systems change and everything else.

Debbie:

So good. I’m, I’m very, I’m kind of fired up right now. So I’m going to like to get off this conversation and have to talk to my husband and kid about this. Cause I’m very excited about you and the work that you’re doing. anything that we didn’t get to that you want to make sure my listeners know.

Mel Houser:

Yeah, I want one more thing I realized I should have included when you asked me about community. We have free community programs that are open to everyone. You know, people who don’t get their health care, people who live anywhere. And one of the programs is called Kid Connections, Kid and Teen Connections. We just expanded to include teens. It’s a free customized friend matching program where the child or teen or their caregiver fills out a profile about what they love and their communication style. And then our community programs coordinator literally makes a customized friend match to find all the sweet little loves, another sweet little love who loves what they love. And it’s been amazing. And the coolest part about that program is that it was conceived of by a child. We have a junior advisory board and a nine -year -old sweet little love. When I asked them, I’m like, what do you think we could do to help kids feel like they belong? Without any hesitation, this child says, who let us do what we love. What? Yeah, if I’m doing what I love and that kid’s doing what they love, like we’re gonna feel like we belong. What? It’s that simple? Turns out it’s that simple.

Debbie:

Hmm. That’s so fantastic. I get asked that question and people have been asking me for years, like create a mentoring program, create something to get our kids together. So I love that you’ve created that resource.

Mel Houser:

We’d love for your listeners to connect with it. It’s completely free.

Debbie:

Amazing, amazing. Okay, so listeners, definitely check out the link to that in the show notes as well. Wow. Okay, Mel, I’m just I’m gonna let you go now. But I just want to say thank you so much. I’m so inspired by the work that you’re doing. It’s exciting to me. It’s such a big piece of the bigger paradigm shift that we’re all working towards. So thank you so much.

Mel Houser:

Thank you so much and thank you for all the work you do to shift the paradigm.