Interview between Speaker 1 (Meg) and Speaker 2 (Dr. Mel Houser)
Episode 57: Breaking Out of the Medical Model
[Introductory note]
Hey, Meg here. Here’s one of my pet peeves as an occupational therapist: it’s taking continuing education trainings that have absolutely no impact on my work. You know, the ones that give you a framework, but don’t tell you how to apply it? Or this is maybe even worse to me — the ones that just don’t say anything impactful at all. When I founded Learn Play Thrive, my goal wasn’t just to provide continuing education trainings, it was to provide trainings that leave therapists feeling really confident at using the new strategies in their actual work. And also, that help therapists feel empowered to work in a way that is more aligned with their values. The reception to this from the therapy community has been incredible, and Learn Play Thrive continues to grow. We have neurodiversity-affirming continuing education courses that are registered for AOTA and ASHA CEU’s. We continue to add to our course catalogue, and we have three free trainings. You can check out everything we have to offer at the Learn Play Thrive Education Hub, which you’ll find at learnplaythrive.com/training. Thanks for being here.
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say ‘autistic person’ rather than ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 57 with Dr. Mel Hauser. This episode is about neurodiversity-affirming medical care, and how we can all make our practices more accessible to our autistic clients. Dr. Mel Houser is a PDA autistic ADHD-er, who is a board-certified family physician with a clinical focus on providing primary care for neurodivergent patients across the lifespan. She runs this super cool non-profit that we will talk about in the episode. It’s called All Brains Belong, Vermont. It’s in Montpelier, Vermont. And she’s implemented universal design principles to provide neurodiversity-affirming health care, education, social connection opportunities for kids and adults. She is truly doing the work to reimagine healthcare and other systems that aren’t working for the Autistic community. Understanding health concerns for autistic people, and understanding their access, barriers, and needs is so important for all of us. We cover that in the episode. And if that’s not enough, Dr. Mel Houser also helps us to apply neuroscience concepts to figure out how we can be more effective at creating systems change in our workplaces and in our communities. Here’s the interview.
Hey, Mel. Welcome to the podcast.
Dr. Mel:
Hi, Meg! It’s an honor to be here.
Meg:
I am so excited to have you here. And I’ll tell a secret to our guests that you and I have just been sitting here chatting for 20 minutes. It’s so fun to chat with you, and I’m excited to segue into our podcast interview. And I want to start with your story. Can you tell us a little bit about your story? How did you arrive to where you are now, both personally and professionally?
Dr. Mel:
Sure. So, I’m a family doc. I take care of babies through older adults. And so, six years ago, here I was, having my first baby and like, so I thought I knew what I was doing. Well, my baby thought otherwise. And she made it clear in no uncertain terms that everything was not helpful. My medical training was insufficient, my environment was insufficient, like just everything about what we were doing was a mismatch for her needs. And like, my experience at that time, you know, much like when you covered Moyna Talcer’s work on the sensory experience of autistic mothers, and what Sarah Selvaggi-Hernandez described as the like, the chaos, the sensory overload experience of the unrecognized autistic parent. Like that, that was me, because I had no idea. I just, like, my brain was exploding. It was pure chaos. And like, my cortex is like, “It’s okay, baby, you feel your feelings. All feelings are okay.” But my limbic system was like, “Fire! Fire! Fire!” like just, you know, for like years. Anyway, so while I had never seen an autistic infant before, I knew I had one because I have this like background in child development.
And so, we were so fortunate to have a neurodiversity-affirming therapist even though I didn’t know that was a thing at the time. But we were really on a — we started on a really good path. Like, right off the bat, she supported our coregulation and adapted our environment to meet her sensory needs, and inadvertently, mine. And this not only allowed me to be a better mama to Luna, but made me a better doctor and really shifted the focus of my practice. And yet, as a parent, like, things remain so hard, and we didn’t leave the house for two and a half years. And shortly after that, bam! COVID walked out, chaos, more chaos. Yeah, so like, there I was. Sorry for the monologue. But like, so in early COVID, I was taking care of sick patients in the hospital, I was afraid I was going to die from COVID, I was homeschooling a three-year-old and working this really inhumane work schedule. And, you know, at first it was okay, because I was actually getting a lot of dopamine from a homeschooling part because I fell in love with Luna’s brain and how she learned and I learned that I had a ton in common with her. And so, I was immersing myself in like books, blogs, vlogs, interviews with autistic adults; like, I was just, you know, I was, that became my monotropic focus. And that’s actually when I discovered your podcast. And so, like, the deeper I dove, the more neuro-looking I did.
And I remember this one day, when I was listening to Show Yourself from Frozen on repeat, because I do that, while dancing with my then four-year-old and the lyrics were basically like, “My purpose is to show you who you are,” and I was like, “Elsa’s autistic. I’m autistic.” And I was just like, bawling. And like, it was like, you know, like light from the sky, like it was this moment. And like, I just knew. But, you know, it took more than that. Time went by, and I — my work schedule, I was covering the hospital 24-hours a day, seven days a week, for like a week at a time and I had such like, disrupted circadian rhythms. And so, more disrupted sleep, more stress, more autonomy violation at work. And, you know, it was a setup for autistic burnout. And so, like many late identified adults, I got my autism diagnosis in the context of autistic burnout, where essentially, I lost the ability to mask and therefore started manifesting more of the DSM stereotypes and, you know, which are essentially autistic stress behaviors. Even like, at some point, I got so dysregulated that I lost the ability to speak, I lost the ability to motor plan brushing my teeth, like, you know, this can happen any of us. But anyway, my memory of that was a blur.
But basically, emerging from that was that I had this idea that I would quit my job, and mobilize my rage against the systems and all the things, and start a non-profit organization, try to change the world and try to build a better world, so that my baby could grow up in a — without the world invalidating her and giving her the message that she’s broken. And I had the idea that we could do that. We could completely reimagine all the broken systems of society, and smoosh it all together, and start over. And I got so much dopamine from this idea that that is what really allowed me to emerge from autistic burnout. And that was only, you know, that was last year. That was May 2021. And since that time, I’ve been, you know, not only rewriting the narrative of my life, but unpacking all the internalized ableism and all the things that are so common for late identified adults on their journey, but also building what I think is a pretty cool organization. And that’s really evolving into, you know, a model of community health and removing the distinction between health care and the rest of life. Because, you know, in order to do anything for the neurodivergent community, you really have to do everything, because of all of the barriers. Accessing education, accessing employment, making friends, and like just reframing the connection, is the pathway to health.
Meg:
There’s so many things in what you just said that I want to ask you about. Your story is relatable to a lot of autistic folks who have been on the podcast especially autistic women who were diagnosed in adulthood, often at one of the more stressful times in their life. And I just want to say back what you said, that the way we have traditionally in the medical model looked at autistic behaviors, the way it’s described in the DSM, epitomizes autistic stress behaviors. That we are looking at stressed out autistic people when we see those, which so many people have said, we’ve never seen an untraumatized autistic person in our society. So, autistic people are stressed. But that was the moment that you lost your ability to mask, that it was very clear that you were autistic, and that you could get that diagnosis, and that validation, and start that process with yourself. I want to circle back around to what you said about removing the distinction between healthcare and the rest of life. But first, I have to ask you, Elsa is autistic?
Dr. Mel:
That’s my personal theory. I mean, there’s sensory processing differences. There’s meltdowns. And meltdowns, and just naming the thing.
Meg:
Yeah. Yeah, I was just working back through that in my head.
Dr. Mel:
Yeah, yeah. I mean, I have no idea. But that’s my personal experience as a viewer, which I have used to promote a strengths-based understanding of autism in my five-year-old and all of my little kid patients.
Meg:
I love that. I see it.
Dr. Mel:
And Elsa as the hero.
Meg:
Yeah. Love it. All right. So, you said that one of the goals for your business has been removing the distinction between healthcare and the rest of life. What does that mean? Why is that important?
Dr. Mel:
Yeah, so, even when I was in a general primary care setting, I was spending most of my time helping people problem solve their access through education system, all of the invalidation at work, accessing inclusive employment. Like, problem solving all of the like, you almost, like, you have to have executive functioning skills already to access support for your executive functioning skills. So, all of that stuff. And we know that isolation is bad for health, and in a world where people are stigmatized and othered, and don’t necessarily have the experience of genuine connection in neuroinclusive ways, that’s bad for health. So, my organization not only provides healthcare, but we have community programs, social connection programs for kids and adults, where we bring people together based on their shared interests. Not a shared diagnosis, but a shared interest, shared monotropic bullseye. The dopamine flows! And educational training, because the idea is to get a shift in the community, get a shift in the environment, not the person.
Meg:
I love that. Can you describe a little bit more what’s currently happening? I want to circle back around in a minute to what you’re doing with All Brains Belong. But I know there was probably a long-term sort of tacit or even explicit needs assessment that you were doing throughout your career that led you to this point of founding All Brains Belong and doing something different. How is the medical care that’s currently available not meeting the needs of autistic people?
Dr. Mel:
In so many ways, Meg. So, I’ll say, this actually has been studied, in addition to my own observations, there’s a literature base on this. So, Doherty and colleagues in 2021 studied a large sample of autistic adults about the specific barriers to healthcare. And it basically essentially broke it down into one, problems in the environment; two, problems with the providers, the healthcare providers themselves; and three, systems problems. And so, the environment, things like sensory things, the fluorescent lights that was the chaos of the waiting room, the clicking clack, you know, like all those things. The systemic barriers, like the, you know, you’ve got to fill up the 20-page packet or pick up the phone to initiate making an appointment. You get, as I said before, you already have to have like exemplary executive functioning skills to access support for your executive functioning. Like, all of this stuff. And like the hidden curriculum of the system. So, there’s one right way to be a person. And, you know, as a doctor retrained in the traditional medical system, I saw that as a trainee, you know. My supervisors would, you know, make comments like, you know, “That person is not in pain because they don’t look it,” you know, like all this stuff. That’s just ableist and therapeutically biased, and which is what feeds the barriers of the provider — the knowledge, the lack of knowledge, and the unhelpful, inadequate attitudes which come from the culture of the medical education system and the healthcare system as a whole. This is no stranger to you and your listeners. But, you know, the healthcare system operates in this deficits-based paradigm. And the way you see a person ultimately influences all of your interactions with that person. And so, not only from the way I was trained in that deficits-based lens, and of course, selectively omitting the fact that, you know, DSM criteria are autistic stress behaviors, and selectively omitting the history that led to like the 1900’s narrative still being a thing in 2022.
But, you know, essentially, that deficits-based lens makes many healthcare providers unsafe people. And patients need to feel safe in order to access health care, especially if you have, you know, the kind of nervous system that has hypersensitive neuroception. Like, you can walk in and the vibe, it’s just like, ‘Oh, unsafe person’, and that is so bad for health. And my professional experience, is that the patients who come here — and I’ll tell you why my practice is open to people with all types of brains. It is not a, you know, neurodivergent affinity space. The purpose is because people don’t know they’re neurodivergent, they just know that their needs are not being met by the traditional healthcare system. So, in order to provide a space that people can come as their authentic selves and discover their true selves, they have to know they’re allowed to come. So, anyway, what that self-selected group of people has in common is that they have been invalidated by a healthcare system. All day long, I am hearing healthcare trauma stories of gaslighting, and dismissal, and profound invalidation. And I know that Laura Hellfeld talked about that a couple weeks ago about like, healthcare providers maybe unknowingly say things that have a profoundly harmful impact. And it all starts from lens.
Meg:
That’s really interesting. I love this insight about not making it an autistic-only space leaves it open to folks who don’t know yet that they are neurodivergent but they knew they need something different. That’s a really important insight. You mentioned your training, and that you’re trained in this very deficits-based model. Can you talk a little bit more about how physicians are typically trained in terms of autism and diagnostics, and how this affects their care and the referral process?
Dr. Mel:
Absolutely. And I can also send you — I have a free talk on this, if anybody wants to watch it, where I go into great detail on this, but essentially.
Meg:
Yes, send that, and I’ll link it in the show notes. Thank you.
Dr. Mel:
Cool. Yep. So, I would say that I can only speak to my own training. But my path — that I think this pattern is fairly typical. So, in the preclinical years, like before clinical rotations start, I had a one-hour lecture. it consisted of the triad of impairments, and a rote list of concurrent conditions. And then, in my clinical training in medical school, it was fairly limited to stereotypes. There was an emphasis on red flags, emphasis on prevention, and emphasis on quote ‘treating behaviors’, and there was this perception of rareness. And as I said before, that hidden curriculum, that there’s one right or correct way to develop, to play, to learn to be a human. That was what I was taught. And that is, you know, in clinical rotations when I would see an identified autistic person — I mean, I saw unidentified autistic people all day, I’m sure. But I was trained in the stereotype. I matched the pattern of the stereotype. And I think that’s how that goes. And especially, you know, there’s actually, there’s a study about seven years ago that sampled primary care physicians, and less than 10% of PCP’s would suspect autism if their patient volunteered information, showed interest in people, discussed emotions; Zerbo and colleagues in 2015. Like, when you’re only trained in stereotypes, you’re only going to see stereotypes. And if PCP’s are those who are generally making refer referrals to tertiary care evaluators, that’s all they’re gonna see, too. So, of course, of course, the stereotypes are going to be perpetuated, and the patterns are going to continue to be matched, and so on. So, which is why I really wanted to create this space where you come. And in fact, amongst this self-selected group of kids and adults who their needs were not met in another system — because essentially, we’re doing parallel play with the healthcare system here — what a lot of these people have in common is neurodivergence.
Meg:
Yeah, that’s really powerful, that the neurodivergent folks are pretty much across the board not having their needs met by the current system. I mean, like with all of our systems, it works for a small cookie cutter subset of folks. And, you know, in Episode 51 with Matt Lowry, we talked about how the training of psychologists who are primarily our diagnosticians is so outdated, so limited, and how that is impacting autistic folks’ opportunity to learn about themselves and to access resources. And I appreciate you walking that a step farther back for us, that PCP’s are not up to date on what it means to be autistic. And that’s just another barrier in between autistic folks looking to learn more about themselves or their parents looking to understand their child better, and finding out that they are autistic.
Dr. Mel:
Yeah, and the other thing I would say that’s really important is that those who work with kids, I don’t know what they think happens to the kids, because the point is to become an adult. So, I spend my whole day with autistic adults. And the patterns, the unique health challenges of autistic adults is not part of training. And yet, there’s like, there’s clear literature that current medical care is not working. The average life expectancy of an autistic adult is 36 to 54 years of age. Not dying from autism, dying from premature cardiovascular disease and suicide. And so, when I learned that, I completely flipped my lid, because I did not know that. It was not part of my training. And I was 37 when I learned that and I had just gotten my autism diagnosis. I was like, what?
Meg:
Yeah, how is this not considered a health crisis like if you’re being trained in medicine? What are the known unique health challenges that autistic people face?
Dr. Mel:
Yeah, you know, I think that, like I said before, when there’s the rote list of conditions that autistic people commonly experience — constipation, dysautonomia, you know, migraine, you know, anyway, but doctors are trained top-down. The patients don’t come in knowing they’re autistic. Patients come in with their symptoms bottom-up. The task is to provide a narrative to organize the way they come in. So, the people come in here who’ve had this whole range of symptoms that have not been provided an understanding about, and feel dismissed, and not understood. And one of the strengths of my autistic brain is that I’m a systems thinking pattern matcher. So, over 70% of my practice, kids and adults — some of whom know they’re autistic, some of whom do not, some of whom maybe are not — but 70% of my practice, has connective tissue differences that impact multiple organ systems.
So, like, you know, top-down, you might memorize that autistic patients are more likely to have these core conditions. But if you don’t zoom out and wonder why that is, you miss the opportunity to actually support them so that they feel better. So, like, for example, constipation, super common. And there’s all kinds of assumptions made about, you know, nutrition or inactivity, or like whatever, but turns out many autistic people have hyperelastic or hyperstretchy colons that get more stretched out than other colons. And anyway, so when I was in general practice, my pattern matching brain kind of spot the patterns that I knew to seek out for my neurodivergent patients, you know, like signs of sleep disordered breathing, which is super common in autistic and ADHD people. But now that I’m primarily caring for a neurotypical population, there’s a clear pattern of all the things. And there’s literature linking multiple components of this to other components and certainly linking each of these components to autism, but it’s kind of like Google Maps. If you’re so zoomed in, you don’t even know what continent you’re on. You like have to zoom out to conceptualize it. There’s one big system, because connective tissue — like, what holds us together — goes through the whole body.
Meg:
That makes a lot of sense. Mel, how is COVID impacting autistic folks?
Dr. Mel:
Thank you for asking that question. This is my piece of public health intervention. The neurodivergent community is at increased risk of complications from COVID. Not a lot of people know that, including doctors. There’s literature on this; there’s a lot of literature on this. So, more complications, including long COVID. And so, in a world where this is an airborne illness, and in a world where many of the public spaces including school, including many workplaces, have unmasked people where there’s an actively spreading airborne illness, I am very concerned about the further marginalization of the Autistic community. And in my practice, we have close to 200 people with long COVID or long COVID-like conditions. And these were previously healthy people who now are couch-bound, unable to work, and unable to play with their kids, and COVID is what kicked off their autoimmune disease.
Meg:
I interview, collaborate with a lot of autistic folks, and I’ve had so many e-mail exchanges in the last couple of years that were, “Oh, hey. I need to cancel, I have COVID,” and then, “Hey, I need to cancel again. I think I have long COVID.” So, even with my small sample of just folks in my professional world, I can see the impact of long COVID. So, you’ve talked about a lot of the different challenges that autistic people face with their health, and how they seem to be unlinked but really are connected and really are common for autistic folks, are autistic people having the experience of bringing their concerns, even, “Hey, I think I have lung COVID,” or, “Hey, my stomach hurts and my joints hurt,” and not being believed or being treated like they’re making it up or some other negative and dismissive interpretation by their providers.
Dr. Mel:
That is a common experience and a common perception. And while I’m unable to know what the words that were used by the healthcare providers in the stories my patients tell me were, their experience, and the trauma that lives in their bodies from those experiences are what matters. And there are common patterns of when some people receive the message that something is quote ‘just stress’ or ‘just anxiety’, or just anything. That we’re just, well, someone is profoundly disabled by their chronic pain and brain fog. And anyway, it’s also, the other thing that happens is people kind of collect, not because they’re looking for it, but they are assigned, like 40 diagnoses. How is that not going to have an impact on perceived deficiency and effectiveness? Like, what’s wrong with me? I have 40 things wrong with me! And I’ve had patients who say, “Oh, what you’re saying is there’s not 40 things wrong with me? There’s like, I just, I’m autistic, and I have connective tissue differences?” Yeah, that’s what I’m saying.
And so, the other piece of that about why that unified narrative is really important, is that because the healthcare system is so siloed and fragmented by body system, where there’s a lot of, just as we talked about conflicting access needs interpersonally, there’s also internal conflicting access needs. You know, for example, so many autistic people have hypermobility spectrum disorders, including hypermobile Ehlers-Danlos, and those people also have dysautonomia; it’s all one thing, right. So, dysautonomia, a standard part of management might be compression, but if you also have squishy blood vessels and you compress them, you may cut off their blood flow, which turns out is not good. So, it’s internal conflicting access needs that if you, the management of some parts — in my practice, we legitimately call this like, All the Things, ATT for short, because all the people have all the things — some management of some parts of all the things make the other parts of all the things worse. Or someone with chronic pain that gets prescribed a muscle relaxant, and they actually have floppy connective tissue, you are making their floppy connective tissue floppier, including in their airway, which is maybe making their sleep apnea worse, which is making their chronic pain worse, which is making their dysautonomia worse. And like, the cycle continues, you have to zoom out on your Google Maps, and think about this as one thing. And that is not the current medical model. And it’s not their fault, because people typically — and when I say people, healthcare providers don’t typically have a practice like mine, where almost in general primary care, this pattern might be diluted, whereas this is what I see all day. All day, this.
Meg:
Yeah, that makes a lot of sense. You describe the way that things are siloed. Physicians, therapists, professionals supporting autistic people aren’t really set up to get that zoomed out holistic picture. They don’t have the training, they don’t have the knowledge, they don’t have the information. There’s not the communication between providers. And this has an impact, like you described, on the health of our clients. And I appreciate how you also tied that back in to how it impacts their self-image. I can imagine kind of getting this message of ‘I’m bad at this. I’m bad at these emotional regulation things. I’m bad at this sensory thing. I’m bad at protecting my joints. I’m bad at using the bathroom’, right? It’s this negative self-image of ‘You are a series of deficits’. Well, no. No. Here’s some ways your body works differently, here’s the supports you need. You are good. There are people like you. This is a normal way to be. And here’s how we can support you. It’s a very different message.
Dr. Mel:
Right. And one of the many things that we do at All Brains Belong is we bring people together. So, our patients, they meet other patients, and it’s this like, instant shame reduction, really. And it is also this, really, this village of learning and healing together. Because it really requires a lot of unlearning, rethinking, reimagining all these different ways to provide care and community.
Meg:
So, I’ve heard you say a couple of things that feel like they’re key elements of neurodiversity-affirming primary care. One is, like you just said, bringing people together, providing community, providing belonging. The other is zooming out and finding a way to see the whole person. What are some of the other key components of affirming primary care for autistic folks?
Dr. Mel:
Yeah, and I think that when I think about neuro-inclusion, as essentially not having any defaults. So, when we think about how, really, talking about one-in-five people who learn things and/or communicates differently than the so-called typical brain, even though that’s not really a thing, that’s a lot of people. And so, universal design is best practice. So, I’ve been trying to implement a universal design for all the different parts of workflow with the healthcare system, which is essentially what we what we do here. So, everybody gets a menu, not just because you disclose a disability. Everybody has a menu of the user the multiple different ways to make an appointment, these are the multiple different ways for communication supports, you know, you pick your furniture, you pick your lighting, you pick the format of questions that work best for you, you pick how you provide information, and what multimodal options for communication during in between appointments, you know, whether the patients who, you know, secure e-mail, they provide pictures, they sketch mind maps on their phone and send them over to organize their narrative of their symptoms. You know, you pick the executive functioning and sensory supports. And, of course, optional integration into our community programs which are open to everybody, not just our patients, because I think it’s a lot about educating people about their access needs. Like, frame — I try to frame everything about access needs. Like, access means, like, we all have access needs, regardless of whether you’re neurodivergent or not. It’s just, you know, we all have things that we need to meaningfully and fully participate in our lives. And so, people have never heard that term, and they don’t know that they could get to have access needs.
Meg:
This is so very reaching to the core of what it should mean to be an OT, breaking down barriers to meaningful participation and providing access to the things people want and need to do. I love the way you framed it as universal design for all neurotypes. I think that that is a pretty accessible change for practices and providers to make, I mean, you’re doing some things that are a little bit outside of the system and the model that might, that feel big. And it’s a pretty big leap. And while we’d love to see more people doing that, I know a lot of people are probably laundry listing the reasons that would be hard for them. But some of these things are pretty simple. And they take a little bit of legwork upfront, and then they benefit everybody, and you have better patient outcomes.
Dr. Mel:
Totally. Right. So, definitely, I had to break out of the restrictive way of practicing here. I don’t have bureaucracy here. I can be like, nimble and responsive and change our systems all the time. And like, you know, in big places, you can do that. But when I do trainings for healthcare practices, or even just businesses looking to improve their neuro-cultural competence, it really just starts with thinking through your workflow, and every step of the game, offering it in a couple of different ways. That’s it. Because anytime you have a default, anyone whose brain does it differently than that, is always going to feel other. And so, if you feel othered, you’re not gonna feel like you belong. So, it really can be that simple, of, “Oh, okay, the waiting room, maybe we can have a couple of different choices. Like, you can wait in the waiting room, or you can wait in your car.” Great, you’ve made one really concrete, meaningful step toward neuro-inclusion, right there.
Meg:
That makes a lot of sense. My genuine hope is that there’s some practice owners, practice managers, people who work in larger healthcare facilities listening right now, who are going to take this to the people who can make changes and make those changes. You know, I know that this is something that medically fragile kids, that their parents are navigating, right. And it takes a lot of advocacy, even for those more recognized and easily identified differences and needs. Like, I’ve had to say with one of my own kids before COVID, “I cannot wait in your waiting room,” during flu season. I was too high risk for one of my kids when she was too young to get a flu shot. And it was amazing how assertive I had to be with certain providers to get that option. And so, I can’t even imagine with folks who are autistic, have different sensory needs, different neurotypes, that it can be pretty hard and exhausting to constantly do that advocacy. So, this change feels really, really important and really accessible. I know there’s a lot of people who are supporting autistic folks in areas where they don’t have an explicitly affirming PCP, I would say that’s most areas. I mean, you can happen upon the person who is accidentally affirming, it’s just in their nature. But what should folks look for in a provider, if they don’t search the internet and find something like All Brains Belong?
Dr. Mel:
I would say that the lens that the provider is seeing the world is probably the most important thing. My own doctor doesn’t know about all the things, for example, so like, doesn’t have the knowledge of my physiology, because I have all the things. But like, she’ll acknowledge she doesn’t know something. And she makes it clear that she cares about me, and she asks me what something is like for me. So, I think the lens of not — and you can tell a lot about lens by the language that somebody uses, which is why, you know, you do so much training about this. Like, healthcare providers get judged by the language they use, because there are some inferences made about the lens through which they see the world.
Meg:
This is good advice for therapists listening, too, because what you said that we should be looking for is a provider who says, freely, openly without shame, “I don’t know that much about that. And I believe you. I’m interested in supporting you. I want to learn more about your experience. And I want to support you.” All of us who are supporting autistic folks, that should be our message.
Dr. Mel:
Yeah. And to make that explicit. Name that thing. I remember once in residency, somebody said something like, “Empathy doesn’t count unless you say it out loud.”
Meg:
Oh!
Dr. Mel:
Right?
Meg:
Yes. That’s true. That’s true. And I think this is especially hard for newer folks who struggle with impostor syndrome. And what that can look like is feeling the need to prove ‘I know something, I know what to do. I can help you. Let me show you that I’m not a fraud by providing information and answers’ when, really, the sign of an experienced provider is to be able to comfortably say, “I don’t know that and I’m interested in that. What do you know? What can you tell me? Where can I learn?”
Dr. Mel:
Yes. And my five-year-old’s therapists, many of them along the journey, those have been the conversations, especially because I’m PDA-er, and my five-year-old is a PDA-er, and lots of people don’t know about that. And so, we learned together. What would have been very harmful to the relationship was, what happens a lot, is that some professionals will say, “Well, that’s not a thing, because I wasn’t trained in it.” And that is, unfortunately, that’s part of a lot of healthcare professionals training. It’s like this, I call it like the Brain Rules. Like, the assumptions that get me these like, over-reversed neural pathways, but they’re not like laws of physics. They’re not World Rules. And so, I think the most important thing is finding a provider who is like, able to distinguish from Brain Rules from World Rules, and unlearn and relearn.
Meg:
I love that language. I appreciate you providing us language for that, and we can use that to check ourselves. So, give me big picture, what would it look like? What would it take for us to change the paradigm about how the medical system supports autistic folks?
Dr. Mel:
Put simply, we have to learn to distinguish Brain Rules from World Rules. Because when you can do that for yourself, to be able to say, “This thing I’m thinking is just a thought. It’s the way I see the world that makes me feel safe, and I can keep it, but I also know that it is not necessarily a World Rule.” And then, you can recognize when other people have Brain Rules, because you cannot challenge other people’s Brain Rules. Because the World Rule is that they will flip their lids. So, in order to change the paradigm, you have to like, go alongside. You don’t say, “You’re doing it all wrong!” you just say, “Here’s a better way, look how nice it is,” because — so like, for me, inclusion provides that context. Everybody wants inclusion, they may just not know what it means. Inclusion is perceived belonging, it’s more than fitting in; it is safety. And safety comes from connection. And if we orient our whole society around coregulation, I think that is a way to shift the paradigm without challenging Brain Rules.
Meg:
I’m really interested in systems change, too. And there was actually a really good podcast episode on this, on This American Life years ago. But they showed in a sort of informal study exactly what you’re saying, that when people were directly challenged, “Hey, you’re wrong. Hey, don’t do this. Hey, something that you believe to be true about the world isn’t true,” people dug in their heels, like you sort of alluded to. They often go into fight-or-flight. They’re not thinking, learning in that moment. But when they had a personal experience with someone that challenged their beliefs, these were people who were bigoted in different ways, but then they got to know a queer person who later disclosed that they were queer, the change in thinking was dramatic. And it was sustained, just from that one personal connection. So, I think what you’re describing is really important, that this direct confrontation — I mean, there’s a time and place for being direct and specific, but in our one-on-one interactions, providing a different model, showing examples of what we could do, showing the benefits, and creating these spaces where people are having personal connection to it might be more powerful.
Dr. Mel:
Right. And I think that, you know, calling people on microaggressions is important, like that is important. And you are not going to shift thinking in those moments. And that’s okay, that might not be what that moment is about. That moment might be about, you know, not promoting via permitting something harmful. And to change thinking, the person has to decide to relearn and shift their Brain Rule. Like my five-year-old, we talked about this, and you know, I tell her like, you know, like my five-year-old, she’ll say something like, you know, “I must have ice cream for breakfast or I am unable to get through the day.” I’m like, “Brain Rule or World Rule?” And she’s like, “Brain Rule, but it’s my Brain Rule, and I’m keeping it,” and I say, “Okay, fine, have ice cream,” but I want her to be able to do that and distinguish that.
Meg:
Yeah, this is a really useful distinction. And I also appreciate you bringing it back to we don’t need to permit intolerance, hate, you know, that we do call out those microaggressions and we have to find another way and space to try and change thinking, because thinking doesn’t change. I think it’s useful that we linger here for a second, because, “What do I do with my intolerant colleagues?” is a question that I get a lot. Like, how do I change the culture of my workplace? I get a lot of therapists who work in very behaviorist settings who really want to create systemic change, and they’re wondering what the skill is, what the approach is that’s effective, and I appreciate you kind of bringing us to the neuroscience of how and when we can and can’t change our minds.
Dr. Mel:
Right. And so, we talked a little bit about this before we started recording, of cortical override of the limbic system is a useful skill, it is not healthy to overly rely on it. And it is not — when you do that too much, you lose your intuition, you lose your ability to feel your body, you have like brain-body disconnect because you keep overriding your limbic system and, you know —
Meg:
Wait, before we go on, so cortical override of the limbic system, limbic system being our fight-or-flight response. And that override is our thinking brain saying, “Hey, actually, we’re not going to do that right now. We’re not going to freak out, we’re going to make a different choice.” Is that an accurate description? Okay.
Dr. Mel:
Yeah. Yeah. So, when I can anticipate a situation that is likely to trigger my limbic system, I have prepared ahead of time some scripts. I have prepared ahead of time some messages, because when I am triggered by the language, people are using, the concepts they’re talking about, the deficits-based, you know, like, seeing meetings like this happen all the time. I go to my patients’ team meetings. You, it’s very hard to have actual access to your cortex. So, offload cognitive load by like, having a plan. And so, it might be something like, “I wonder if that’s really working”, “I wonder what you can tell me about what the environment’s like when that thing is happening.” So, like, I use a lot of ‘I wonder’ statements. I use a lot of, again, like coming alongside where, you know, talking about connection, talking about safety, talking about coregulation, or I talk a lot about neuroception. There’s a lot of [questioning sound], because that’s new, so I’m not challenging the Brain Rules. I’m just introducing like a brand-new concept. It’s not brand new, like at all. But it is — they don’t realize. So, it’s like, there’s this thing. Or if I hear, for example, talking about, you know, like, “The kid loves dragons, but like, I don’t get it. I’m like, rewarding them with dragons.” But I’m like, “Oh, let me tell you about monotropism. And like, it’s like this thing that —” I’m like, you know, “This is all that the kid can think about. It’s their attentional system. It’s like, they don’t get to pick what consumes their interest. And they don’t get to pick how intensely it consumes them. This is how it is.” And they’re like, “Oh, that’s new information.”
Meg:
I love that presenting new information approach. I think that trainings are very powerful and impactful in this regard, that they’re not directly confrontational, and people are coming to learn. And it’s giving folks the right space to challenge their Brain Rules without feeling challenged. So, I’m glad to hear that you’re out in the community doing that. And I know a lot of our listeners are doing that, too. Of everything we’ve talked about today, if there’s one big takeaway you hope listeners come away with, what would that one big takeaway be?
Dr. Mel:
I would say that the biggest takeaway is that this doesn’t have to be that complicated. You just ask the people what stresses them out. Don’t do that. And ask them what makes them feel comfortable. And do that. And offer, in everything you do, offer at least a couple of different options and give people freedom of choice to pick what works best for them. It may not be, you know, true universal design, but it is way better than having one default and everything else being othered.
Meg:
That sounds great. I think that must sound great to everybody listening, that we all want our providers to do the things that make us comfortable, and not do the things that make us uncomfortable, and be curious about what those things are. What are you working on now, and where can we find you online?
Dr. Mel:
I am working on all the things, literally. We have an All the Things Task Force. It’s an interdisciplinary taskforce of clinicians, community members, patients, because we’re elevating the lived experiences of autistic people. We meet once a month and we talk about multidisciplinary approaches to this autistic autoimmune health. So, ifanybody wants to come along, like so, you know, we have physicians talking about their specialist lens, and we have occupational therapists talking about, you know, how do we use lymphatic drainage of the face to improve sleep apnea, like we’re making stuff up and it’s so cool. And yeah, so and we’re coming up upon All Brains Belong’s first birthday, and we’re gonna have a very big Happy Birthday ABB Campaign with a whole slew of new free community programs. And in the meantime, I would invite your listeners to check out our ongoing three virtual community programs. We have a Brain Club, which is a weekly discussion group on everyday brain life topics. And Kid Connections is a virtual matchmaking program for kids that matches them based on shared interests. And you can you can check that out at allbrainsbelong.org. And you can follow us on Instagram, Twitter, Facebook, and occasionally LinkedIn when I don’t forget it exists.
Meg:
I forget LinkedIn exists too.
Dr. Mel:
Thanks for naming the thing.
Meg:
Yeah, thank you so much. I will link to all of your resources in the show notes. Thank you so much for being on the podcast today.
Dr. Mel:
Thank you so much. Thanks for the dopamine.
[Ending music]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
