Bonus Conversation with Dr. Mel Houser on Navigating Healthcare Systems While Neurodivergent

Debbie Reber  

So this is the official welcome to the February expert call, and so happy to have Dr Mel Houser with us today. I always start by reading the bio, reading your bio, because, you know, that’s a formality. We want to do that so people can understand your experience and where you’re coming from, and then we’ll just dive in. So Dr. Mel Houser, she/they is an autistic, PDA, ADHD, dyslexic, dyspraxic, dyscalculic dyscalculia. Sorry, my brain is not reading very well today. Board certified family physician and founder and executive director of all brains belong Vermont, a nonprofit organization in Montpellier. Vermont, is that? How you say that Montpellier, Montpellier,

Mel Houser  

it’s not as fancy as I’m sure. Maybe at some point, there may have been some French background for it, but that’s not how it that’s not that’s not how it’s said today.

Debbie Reber  

Okay. Montpelier, Vermont, 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 Hauser holds a Doctorate of Medicine from the University of Vermont, College of Medicine, and has completed their residency training in family medicine at Middlesex Hospital in Connecticut, where they served as chief resident. She also completed a fellowship in medical student education from the Society of Teachers of Family Medicine, as well as several 100 hours of training in neural development, autism, ADHD, dyspraxia and learning differences. So you’re in the right company. This is a good synergy for us to all be hanging out together. And thank you again for joining us today. I’m gonna spotlight your video, if you don’t mind, and all of you who are here, and I know there are some more folks joining us, but feel free to keep your cameras on if you can. But if you need to do your own thing and eat or whatever is happening, that is also no problem, and the chat is open, and this is for you. So I have some questions that have come in. But as we talk today, things come up. Just pop them in the chat, and we will address your questions. So to start with our theme this month, we always have a theme in the club, and we’ve been talking about advocacy, and so just our role as advocates, as parents in general, that it’s often a reluctant role for so many of us, it’s not really what we planned on being. We’ve been talking about things that we find most paradoxical or frustrating about what we’re required to do for our kids and ourselves, and also how we’ve learned to strengthen our advocacy muscles. So as a way to get started, would love to hear a little bit about your relationship with advocacy. And you know what your journey has been like, kind of moving into that role? Is it who you have always been? What has that been like for you?

Mel Houser  

Awesome question, and the way I’m going to answer it is maybe different than the way I would have answered it a few years ago, but I think that my my journey has shown me that my PDA, autistic brain involuntarily, automatically notices unsafe aspects of systems, broken systems that are hurting people. And I think that I’ve always, like spoken up when I noticed dysfunction, and that hasn’t always gone well, like I’ve been, I even remember like, being a middle schooler and being like, whatever, this routine, this workflow is, like, not good, and just being like, you’re a student, get back in your place. That’s kind of like what my experience has been, even like as an adult learner, and, you know, in various systems that I’ve been in, truly at this point in 2025 I think I’m just tired, and I think advocacy. I just don’t I think that I appreciate when people are asserting their rights trying to change systems top down, but I’m too tired for that, and the way I’ve been approaching, quote, advocacy or systems change, I don’t think about it as advocacy. Anymore.

The way I’ve approached systems change now is like, either you bring a bunch of people together and you figure out what you can build to meet people’s needs without having to change systems top down, like, it’s this bottom up change of like, Yep, we’re gonna have a parallel play healthcare system right now. And we’re gonna, you know, bring kids together to make friends, because, like, school’s not doing it. And we’re gonna, you know, like, like, that kind of advocacy, like, bottom up. And then also the oblique angle, you know, I think that systems do not receive it well. When you tell them they’re doing it wrong, I think that’s what the middle schooler in me, like, you know, figured out. So you could, like, assert the oblique angle, for example, Hey, employers, you’re doing it wrong. That’s why you have all these empty positions and everyone’s quitting do to do. But like, or you could talk about employee engagement and inclusion and like, you know the oblique angle to like, why you might change your routines and practices so that people with all types of brains can get their needs met. So I guess that’s the long winded answer to your question. Is like, like, I don’t fight with school anymore. I got my I personally, I was coerced. My family was coerced out of this public school system that refused to meet my child’s needs, and I have hundreds of patients that I’m responsible for, caring for and trying to figure out their needs. I can’t fight with school. It’s not effective. They have too much power.

Debbie Reber  

Yeah, yeah. Thank you for that answer. I think it everyone’s relating to that sense of overall exhaustion, and it does feel like there’s so many moving targets. And you know, the way that you have, the work that you’re doing through all brains belong, has been so inspiring for so many of us, and it seems it’s such a need. So anyway, very, very inspiring. And let’s talk a little bit too. And here’s where I’m like, of course, I want to ask all these questions, and we don’t really talk about politics in our in my community, and I also think that they’re just in this moment in time. I feel like we can’t talk about systems and and how we do this work without kind of talking about the climate that we’re trying to do this work in right now. And I don’t even know what my question is. I guess I’m the next question I was going to ask was going to be about kind of the barriers that you see us being up against. And you mentioned the systems like and that does feel like a behemoth, right? Like we’re up against these huge things in this moment in time. Are there any specific barriers or obstacles that you are kind of mindful of or paying attention to, specifically in the space that you are doing this bottom up change work in.

Mel Houser  

I mean, it’s everything right? The world is on fire. The world is on fire, and it is my job to zoom out and like, think about all of the forces that are coming to bear on my little ecosystem. And I think that’s what I think that’s what any human being is doing right now, if you’re paying attention. And I think that all what? Again, we can’t top down, change the things, but we can as pattern matchers, system thinking. Pattern matchers, we can predict the we can predict some things, and we can plan for some of those things. So, for example, my patients are, you know, I would say that, maybe just to describe who it is that I take care of. So our brains belong, in general, serves a group of people whose needs have not been met by traditional systems. 86% of our patients have complex chronic illness, including children, and 40% of our patients are really struggling at the margins, struggling economically, really dependent on federally funded systems to just survive. And so we, we at this time, are like planning for survival, to so that, so that my people don’t go without, so that they obviously, like, will continue to get health care regardless of whether they get lose their insurance, because that’s the only ethical thing to do, in my mind, is to provide them with care regardless. I mean, like, we’re not a free clinic. We don’t have any funding for this. We’re just, like, doing the ethical thing, which is to provide people with health. Care, because health care is a human right. We’ll, like, figure it out. But that sucks. It’s just everything sucks all the time, right?

And so like, and we can so actually, we’re really cool thing that I can tell you about, that’s that is actually, like, a good news. Thing is that, inspired by the urgency of all of this, a group of my patients organized, and last week, launched the all breeds belong, community health and access fund where people can donate, like offer registry over the counter, medicines and supplements that people can’t buy anyway, and grocery cards, like people are doing this. People are showing up and doing this. So I think, like in a world where everything’s broken and everything sucks community. Community is what happens, right? Like, we can come together and we can that’s the like, radical thing, because it’s very tempting to, like, isolate in the suck them, but, but really just coming together as a community and thinking about, like, what can we do? And I think that’s like, that’s the lens that I’m trying to go by. Like, all these new constraints, just what can we do? Like, it’s not an, it’s not a, you know, foregone conclusion that we can’t do anything. I think we very much can do things together.

Debbie Reber  

That’s great. That is really cool to hear about. And I know that community is a huge part of your work, and always has been, and I agree now more than ever, that is really the way forward for us. So love that. And is there like, I want to make sure that we share a link to that in the in the recording, so I can grab that from you later, or for sure, yeah, very cool. So we got a couple questions in in advance, and I’d love to make sure we get through those. So let me start with this one. How do you advocate for a neuro diverse individual who has a plethora of subjective symptoms that combine for a significant impact on quality of life when doctors are unwilling to look further than standard, measurable testing and instead point to anxiety. Anxiety seems to be the answer all the time for everything. I’ll give you a little context for this question too. This is an 18 year old female diagnosed with ADHD recently also got an autism diagnosis. She’s starting college in the fall. Over the past three years, she’s had a history of all these kind of health concerns, intermittent fever, syndrome, low energy, stomach pain, persistent nausea, mild chronic gastritis. And blood work with results that don’t follow a consistent pattern for diagnosis.

Mel Houser  

It sounds like she’s got all the things she’s got the constellation of intertwined medical problems that 97% of my autistic adult patients have. It’s like, very clear to me, I hear that I’m like, Yep, I know that pattern. It’s just that, like the nutritional healthcare system, they don’t know I’m going to share screen. So one of the I would say the biggest surprises of my work at all brains belong, is that like because, you know, I think these patterns were always here, but in traditional primary care, it was like diluted by non autistic people. So now, in general, the people who come here are more likely to be autistic and or ADHD, because they, like, find out that we know something about that. Um, or and, or they have basically what you just described to me, and they find out we know something about that. And so they come, and then they also learn their autistic and, or ADHD while they’re here. So they, you know, so, like, what I learned is that, hold on, open this, um, these patterns of what people were coming in with, they were coming in with symptoms in multiple areas of the body, not all the areas, necessarily, but like a lot of areas.

And turns out what that is is a constellation of intertwined neuro immune conditions. So in 2023 all brains belong, formed a task force. Actually 2022 formed a task force of multi disciplinary professionals and patients, elevating the value of lived expertise, and we studied best practices for this constellation, as well as things to not do that. Unfortunately, are things that are like typically done in the traditional healthcare system because they don’t know. And so in 2023 we released this free resource on this website. And one of the things, one of the best things, if you if you know that someone has an autism or an ADHD diagnosis, that’s like your gold ticket, because then you can come to this website. You can print out this letter, bring this letter to your primary care clinician. Don’t say anything. Just hand the letter. I found this process. Project. I’d like to share it with you. I’m hoping we can look at it together. And the QR code goes to the doctor version, and the doctor version is like written in the way that clinicians are used to understanding that letter was vetted by 20 traditional primary care clinics, like traditional system primary care clinicians, and then it brings them to the 16 page guide about how you diagnose and manage this constellation of intertwined medical problems. There are no blood tests for these things. So it’s like outside the traditional framework for that, a lot of primary care clinicians are trained in it’s all right here, it’s all free. There’s no strings attached. Just take it. So that’s what I would say, is the answer to that question.

Debbie Reber  

Your resources are incredible, and I checked them out when you were on the podcast, and I now I’m feeling like I want to go spend a lot of time on your website and really become very familiar with all of those things that are impacting my human for sure. And you know, I guess the just as a quick follow up. Then if, if the person or people that we are, you know, in engaging with to get support for our kid is not open to looking at the documentation or any of that, and then, then what we do is we find somebody else.

Mel Houser  

That’s exactly right. I’m glad you said that. Like, like, I don’t know as a PDA or like, I opt, I try to opt out of things that are unsafe. And it is unsafe when someone cannot establish relationship with me and have reciprocal idea exchange like that feels unsafe to me.

Debbie Reber  

Yeah, yeah. Cynthia said, if they don’t, if I don’t have a diagnosis, but my children do, and I have complex and chronic health conditions. Do you recommend I give this letter to my doctor, to, Oh, so you’re saying, Cynthia, for you to give it to your doctor, because…

Mel Houser  

you spot the pattern. You’re like, I know that I have that I live that, yeah, I think that, you know, it is the way I would pitch that. Because I think a lot of a lot of medical professionals like are trained top down, like, these are the medical conditions associated with this top down diagnostic label, and you don’t have that. So what I might say is, you know, my children are autistic, and I’ve came across this project, and genetically, I really,  I’m wondering about the overlap here. I’d like if we could look at this together. It’s not what we don’t want. I think what, you know, I think what happens? Because, how could it not happen? You know, like somebody might print out, like, 40 pages of everything they find on the website, that is not going to be well received, because I think the healthcare system is torturing the clinicians. You know, you must see every you must see patients every 10 to 15 minutes. You don’t have time to eat, you don’t have time to pee, you spend 40 hours a week documenting in the electronic medical record like people are drowning. So the idea of, like, here’s the 40 pages. I’m hoping you could read it like on your off time. There is no off time, nope. But like, I have this thing, I’m hoping we can look at it like during our appointment time together. There should be no barriers. And if that, if no one will look at you, look at a thing with you during an appointment, like I opt out of that.

Debbie Reber  

Yeah. Awesome. Thank you. Another question that came in, how does the chronic stress of living through decades with these poorly treated medical conditions and potentially undiagnosed neuro divergence shape how this constellation of health concerns presents. And put another way, this is just context. This is an 11 year old, twice exceptional autistic girl. How might the long term health of our kids like ours, who we are working to raise with this better understanding of their brains and in a more affirmative way, look different down the road, and what else might we as parents be able to do now to help mitigate all the things, all those things for our kids as they grow up. Great question.

Mel Houser  

I love this question. I want to actually say something else about the 18 year old that also connects to this question, self knowledge, self understanding of what is going on with your health. I can’t state how invaluable this is. So like, I was an 18 year old with this constellation of intertwined medical problems, I’ve had this probably since, you know, puberty, that’s when a lot of a lot of these things start becoming more evident, because the immune system, and in particular a part of the immune system called the mast cells. Mast cells are sensitive. They’re sensitive to a lot of different things. And actually, another link I’ll put in the chat. We did a free webinar about this in January, and I, like, go into details about the constellation. And, like, why, what are the triggers, and how do you manage it? Like, with specific treatments. Hold on, there’s a thing called, what’s called ATT webinar. Okay, there you go, link in the chat. So the idea of, like. Constantly searching for answers. Oh my gosh. If you could just, like, skip that. Just skip it. Save decades of your life. Here you go. You have this. My eight year old has this so, like, they know all about their mast cells, so that when they’re outside last weekend and there’s a campfire, and then all of a sudden they like, you know, are all Hi, V and stuffy, and feel not good, um, you know, it’s like, Yep, that was expected.

You put your head in the smoke, you have mast cell stuff. So it’s like, oh, yeah, great. And so they’re not, like, worried, just like, Yep, that was expected. So this set of tools. And there’s, you know, we try to use universal design principles. So there’s a list of words, there’s a list of diagnoses, there’s videos of people telling their story, you know, just just, you could match the pattern. Be like, oh yeah, great. Okay, well, now I know. And to understand, like, you may not have a doctor who can hold that big picture. Hopefully you can find a doctor who can hold that big picture with you, but you don’t need a professional to agree with you, because you already know. And I think one of the things that is most impactful about community is like, when my patients come here and they’re like, looking for answers, like the way that the way that all the people are, and they come here, and we match the pattern, we give them resources, and they meet other people on similar health journeys.

That’s where the transformation happens, because now they’re like, oh, there’s other people who struggle in the ways that I struggle. I’m not alone, I’m not broken, I’m not defective, I just like, happen to be an autistic person, and autistic people happen to get this that’s all neutral language to describe these things. The earlier you can teach someone about this, the better. So that’s like my first answer to the 11 year old, technically, like, what do I do as an eight like, as a parent of an eight year old, like, what am I doing differently in my child’s life? I have this lens of neuro immune health. So like, I, I’m not good at this, but I’m trying to keep a low allergen household. I’m like, trying to be like, please don’t put your face in the blanket you just dragged all over the house. And then, like, PDA response, like, don’t tell me what to do with my blankets. So it’s like, we just try to survive. But I’m, like, washing blankets a lot. I’m washing sheets and pillowcases. I’m trying to, like, at least have, like, a smush in the face that is less dust. So there’s that, I think, that a lot of neurodivergent people are hyper mobile, and there’s information about that in the clinician guide, meaning the connective tissue is stretchier.

And so if we see even in a young child, that they’re like, rolling their ankles and getting hurt more than other people, and they’re complaining of growing pains, and they’re getting stretch marks, or, like all the things that happens when you’re hyper mobile, I might think about some, maybe some like proactive referrals to physical therapy or occupational therapy that people can, like, the young kids can learn how to move their bodies safely so they can play the games and the sports and, like, all the things they want to do in a way without getting hurt. My child, you know, likes to wear, you know, no ankle support. Just likes to, like, run around without any shoes on, and they keep rolling their ankles, but they understand it now, because, you know, they, they their clinician explained hypermobility to them, and they understand and well, that was expected that I keep getting hurt. Maybe I’ll put some socks on when I run around the house. So that kind of education, like, just, yeah, we, we as neurodivergent people, we our bodies are different. Our brains are different, our bodies are different. There’s no right type of brain. There’s no right type of body. It just is. It’s a neutral description of just what is. And here are some like, extra things you can do so that you can live the life that you want to live.

Debbie Reber  

Yeah, yes. So let me ask you this? This is a personal question, but I’m hoping it has value for other people. You know, I just think of my kiddo, who’s 20, who I’m sure, if I look at that list, would tick so many, like, so many things, of all of all the things, right? And over the years, there have been so many things that we’ve tried, with the allergies, with the gut stuff, with, you know, with all, all of it, and with very little success, and no, no surprise, but to a point where my child, and I think this probably happens to a lot of people, they’re just like, what’s the point of doing any of the stuff, none of it works anyway, like this sucks, and I’m tired. I don’t want to try anything else, right? So I just would love to know your your thoughts on that navigating. And I’m sure you work with you know, you have clients who come in, who who are in this state, like for parents whose kids are kind of have reached that point. How do we anything? How to kind of, especially kid who is demand avoid in a person who you know, like, how do we navigate that?

Mel Houser  

Yeah, totally. And it’s interesting, Jen just asked literally, the same exact question that you just said. So what I would say? And I don’t know, I don’t know how both of your kids learn, but like, I would potentially just like, hey, I learned about this project. Check it out and give the website, give the webinar, like the recordings on YouTube, like, just hand it over and say nothing. And because it’s like, the reason, and what I say in the webinars, the reason people don’t get better, is that the healthcare system tries one thing at a time. The healthcare system fragments out your body parts, and it’s like, here we’re going to treat your gut. It’s like, um, wait a minute, I have an immune system, and my immune system is going to reject that thing you just gave me for my gut, and oh, I’m going to give you a muscle relaxant without knowing you have a connective tissue disorder, which makes your floppy airway get floppier while you’re sleeping, which obstructs your airway, which makes your heart rate go up, which makes your Pain go up, which makes your you know, like, this is what happens in healthcare. I treat one thing at a time in the in the 10 minute visit. I don’t get better so, so, like the idea of the hope comes from this is like an entirely different approach. This is like, you gotta zoom out, look at the body as a whole, and treat the immune system. Just treat the immune system, you will. You will probably get at least a little bit better treating the immune system without like looking at the individual body parts.

Debbie Reber  

Okay, that’s great. Thank you. Just checking in the chat here. Okay, so you guys, thank you for participating in the chat as, again, use this if you have questions as we’re talking about this stuff, okay, let me go to a question that came well, actually, I’m going to circle back to something that came up in our coaching call yesterday, which I thought was connected to this conversation We discussed. You know, we were specifically talking about 13 year old who’s who’s having big, kind of explosive behavior and some violence. And the person was wondering, you know, at what point would I call the police? That’s what we discussed. Was preemptively informing people the police department, like just giving them a heads up, you know, if we notice, if we think there’s a chance, we might be calling on the police making sure they know my child’s autistic, this is happening in my house, so that they come already with that information. And so we were talking about doing that same thing with an emergency room, for example, or with kind of the health care providers that we know we may be interacting with if we have a child who’s struggling, who might have suicidal ideation, who might have some other things going on. So just wondering about what you think of that idea of kind of preemptively, not in crisis mode, building relationships with some of some health care professionals that we may need to interact with depending on what’s happening with our kids.

Mel Houser  

Yeah, it’s an interesting wondering. I think that we need to remember that the professional has no, most likely has no, idea how to help so, like my child’s autistic means literally nothing that is useful to that child and that family. So I would be more so like providing information about what is actually helpful like. So this is my child, and these are the things that soothe them. I also like, if there’s the situation of chronic, recurring explosive dysregulation and violence. I would also be, like, broadening my team. I would like make sure there’s an occupational therapist on the team. I would like really be learning a whole great deal about nervous system regulation, because I don’t know that police encounters, I don’t know that that’s going to end well for anybody. And if we can preempt that, if we, if we’ve even thought about that situation being something that might happen, I do think that an OT to problem solve around regulation is, like, really critical. And thinking about, you know, preventative and then de escalation, all of this, because that’s not what happens. That’s not how professionals are trained. Mm, hmm. Yeah, yeah. Train to restrain it sedate,

Debbie Reber  

yes, yeah. And that was where we kind of ended up on the call too. Was like, that would be like, do everything to try to prevent that from being a reality. Because, yeah, it’s not a road that any of us want to go down with our child. Okay, this question came in in advance as the parent of a lonely, autistic 6/6 grade girl, I was so excited to learn about the kid Connections program provided by all brains belong, but when I shared it with my daughter, she seemed hesitant, largely because it is a novel way of connecting with peers. For her, she’s unclear how it would work or if it would work, and she has grief about past difficulties making friends, so this is a big source of concern for her. So this parent would love if you could talk a little bit more about the program and maybe give a couple examples of a success story or two that’s come out of it.

Mel Houser  

Totally. I even wonder. It’s making me think about something. So it’s really it’s rather unfortunate, because this program is amazing, and we were like, just ready to prioritize expanding it and expanding resources that comprise it, and then, like, the world got on fire. So we just hired a new coordinator for this program who had dedicated protected time to, like, create visual supports, maybe do some interviews with current participants, so we can have, like, a video chat of people talking about stuff, but like, we’re trying to put out some fires. So let me tell you about the program. So kid Connections is a virtual friend making program for free. We you can fill out you or your child or teen. Can fill out a profile about the things that the child or teen loves, things that are stressful, things that make you feel comfortable while interacting with other people. And then Reagan makes a customized match.

She works really hard to make the match really good. And have like, it’s really the idea of like, the thing that you love. We find you a friend who loves that thing. And it’s 266, plus 70, I don’t know that’s a lot of people, 310, or 20 something like that. Kids from around the world serve 29 states and seven countries. So cool, and a kid came up with it, a sweet little kid, sweet little love. I was just like, oh, how do you think we can make kids feel like they belong back in 2021 and they’re like, without any hesitation, let us do what we love. What do you mean? Sweet little love, if I’m doing my what I love, and that kid’s doing what they love, we are going to feel like we belong. That’s the premise of the program. So cool anyway. And like we try to normalize that, you know, if the match doesn’t work out because, you know, the interest change, or the schedule doesn’t work, or it’s just not a good vibe, it’s not a big deal. You just tell Reagan, and she put you back in the pool, and we find another match, and we try again, just like in any time in any time in real life, sometimes you don’t click, and it’s not a big deal. But what does it look like? It depends. So like, if I’m thinking about the sixth graders. So like, what are some stories I know about middle schoolers?

We have a pair who, what they like to do is they send each other like memes. They’re like, you know, through the through like Facebook Messenger. I think this particular pair is using they’re sending each other memes. Some people are like, making crafts or drawing things, and they’re sending each other pictures. Some people talk on the phone. Sometimes people do zoom. Some people are playing video games together. My child feels too much pressure to be expected to show up synchronously with another human. So they write each other letters and draw each other pictures like like an old fashioned pen pal, um, yeah, I think I and, you know, sometimes the matches they like last for a couple of months because the interest change. And you know, when your monotropic focus is dragons, and then, like, you make a match about dragons, then you don’t care about dragons, literally at all, like you moved on to the next thing, like, it’s time for a new match. And that’s what happens to our kids a lot of the time. But you know, we have, I’m thinking about a pair of 16 year olds. They’ve been in the program for a year, and they’re still because we check in every so often to be like, you still hanging out. And yes, it really depends so but it’s for ages four to 17.

Debbie Reber  

It’s so cool. It’s such a cool program. And so you So, just to clarify the what you offer is really the matching, like, like, right?

Mel Houser  

And then the parent like, caregivers, like, that’s the other thing. Like, in an ideal world, we would have like, because. Has like, five hours a week dedicated to kid connection, so she can’t, like, facilitate and have meetings and run groups. When kid connection started, actually, it’s there was a whole bunch of kids locally who loved Pokemon, and a bunch of my patients, and so we did Pokemon club, and I used to run Pokemon club between patients on Thursdays. And I don’t know anything about Pokemon at all. And I’m not, like, I’m not interested, but I’m interested in brains. So I’m like, so interested in like, these kids coming and like, info dumping about their Pokemon characters and showing their cards and throwing their craps and their stuffies and, like, it was the coolest thing ever. But we can’t have a thing for every single type of interest. So we just try to make the match. And I think the next step besides like, creating like, visual supports for like, what you might expect is maybe visual supports also for parents of like. This might be what you might say to another caregiver, because it’s like also executive functioning burden on the caregiver to like, even. So here’s your match. Well, what do I do now? Well, copy paste this blurb I would love to get together. What works for you, like, copy based like that could make a lot, a lot of lives easier. I think

Debbie Reber  

I’m still doing that kind of social support for my kid who’s not living at home at the moment. Like, totally Yeah.

Mel Houser  

I mean, like, people write scripts for me all the time. Like, I’ll I don’t know what to say. What should I say? Chat G P T, writes my scripts for me a lot.

Debbie Reber  

Chat G P T is great for this kind of stuff. That’s awesome. Yeah, I’ve shared that, you know, ever since I learned about it, when you’re on the show, I’ve been sharing that a lot, because there there’s just so many kids who don’t have the person, they don’t even have that person to have that conversation, and it’s just such a need, right to feel belonging with one other person, just

Mel Houser  

one other person. You don’t need a lot of friends. You need one person who you can show up as your true self, who understands you, you understand and like you feel good around like everybody needs that. Yeah. And what we find is that our kids and teens who are monotropic in their interests, fewer things captivate our interest at a time and do some more intensely than other brains. Forging those relationships based on shared interests is more likely to be effective than like a random encounter or like the kid of the parents friend, like, if they don’t both love dragons, we’re done. True.

Debbie Reber  

Okay, very brief question, but when parents are are interacting with with their children in certain clinical settings, specifically, an example would be the dentist or the orthodontist. Do you have any thoughts on when or how to disclose or give information? Is there kind of some best practices regarding that?

Mel Houser  

Let me tell you a story about my child’s last dental encounter. So dentist really hard for lots of humans, adults with medical trauma, they are usually still reeling from childhood dentistry restraint. It’s still impacting them when they walk into a medical encounter. I want not that for my child. So new dentist, I already knew that what I think was going to be helpful was for my child to be able to preview the environment and the routine. So I established care with the new dentist first. And the reason we switched, by the way, I should say this, this is important. This is like a public health thing. Neurodivergent people are at increased risk of complications from COVID, including long COVID. I have, you know, I’ve got, like, like, my youngest long COVID patient is five, a five year old girl. Life’s ahead of them. Like, what the anyway? So horrible. So I my old dentist has, like, an open floor plan, and they weren’t wearing appropriate masks, and the person in the stall next to me coughed. I flipped out, PDA, or not safe. Left a dentist. We need a new dentist.

So I went first, and I said, Hey, my child is going to become a new patient. They do better when they can preview the environment. Is that okay? If I take some pictures in a quick video of your waiting room, in your hallway, in your little chair, they’re like, sure, because who says no to that? And I was like, oh, oh, can you just like, can I just confirm that they have the same routine that we just did with me today? So it’s like, and by the way, like so I do that at the beginning of my appointment. So I’m taking pictures of every stage of my appointment. So time to put the glasses on, picture of me, time to put the bib on, picture of me. And just just confirming what we just did, that is the routine that you think will happen for for my child. Well, we might take. X rays. Okay, can I take a picture of the X ray thing? Yes, you can. Okay, great. I leave, I go home. I have my pictures of my video on my iPhone, and I put them on the iMovie app, and I put them together, and I record myself dictating what the steps are. You don’t even have to do that.

You could just use your pictures in your video, or you could talk while you’re taking the footage anyway. This took like two minutes to edit, make them all together, put them in the right order, and then I say, Hey, we’re gonna go to the dentist. Anything? Let me know. Let me know if there be anything that’s helpful for you. I do not impose my video, and they say, I want a video, and I want to know exactly what they’re gonna do to me, huh? So I take out the video, and I play the video, and they’re like, Okay, we get there. They’re all upset the morning of we get there, they know, it’s a no choice situation. We go to the you know, and then they’re like, Oh, look at that the waiting room, that thing, you know, the thing in the corner, that’s just like the thing in the video, yep. Okay, so we walk in amazing appointment.

By the end of it, they’re like, this is the best dentist I’ve ever been to. When do I get to come again to the dentist my child, right? So anyway, um, that is how I do dentistry. It’s how I did it to the last dentist, too. It like, really, it was, it was a, and also, like a, in my mind, I have this, what’s the word I’m looking for? Like this, this premise that, like, we are not restraining my child, I really don’t care if they get their teeth brushed. I mean, I brush their teeth, but I don’t really care if they get a dental cleaning. I don’t really care if they get the X rays. I don’t really care. I just really care that we went and we tried and we got, like, a little bit of dental care today, and with that mentality that impacts my energy as a parent. So when I go into the encounter and they’re like, fighting over sitting down, I’m like, Okay, we might not leave. We might not do this today, and then they’re like, Okay, I’ll sit in the chair, because it’s like the nonchalantness. You can’t think. You can’t fake it. You have to genuinely believe that the important thing is a positive healthcare experience. That’s the goal. The goal is not the vaccine. The goal is not the, you know, whatever is going to go on for dentist. It’s just like we’re going to go and we’re going to do the thing, and my kid will not fight me the next time I come back. That’s the goal.

Debbie Reber  

Yeah, that’s great. Thank you for sharing that story. I love it. I I used to do PowerPoints for things like that, yeah, and, you know, just to piggyback on what you just shared to like, I think that going into those things without being attached to an outcome is so important. And I just thinking of like, times we’ve gone to the doctor for like, an allergy thing or something, but there was an unexpected, oh yeah, well, we are going to take your blood, or there is going to be a shot today. There is and so just being willing, like you said, to just be like, you know, you have to do this. It’s totally fine. We don’t have to do this today if you need, because that surprise, right? Being surprised by things is can be so dysregulating,

Mel Houser  

yeah, and sometimes, I mean, sometimes it doesn’t work out. But especially if you’re like, seeing like a specialist for a consult, they tend to be pretty formulaic. So calling ahead of time and being like, hey, you know this this because in my dental story, you notice I never told anybody my child’s autistic. I didn’t need to. My child does better when some of their business they also, like might have preconceived notions of all the other autistic children they restrain or not. This is what my child benefits from. So you could, for example, if you’re going to see a specialist, you might call ahead and say, Hey, is there a nurse I can talk to my child’s really anxious about their upcoming appointment. I would love to, just like, hear what the what the consults like, so that I can prepare them. If you’re going to a consult at like, a tertiary care Children’s Hospital, look online and see if the hospital system has a Child Life program. A lot of times Child Life, they won’t like tell you about it, or maybe they’ll tell you about it when you’re an inpatient. But like our, like one of our local child life, when my child needed to see a bunch of specialists when they were younger, I called ahead. And because the, you know, the tertiary care center was two hours for me, I’m not gonna like, go there and take pictures and video, but I made contact with Child Life, and I was like, Hey, can you go around and take pictures for me and videos for me, and can you go talk to the nurse and find out what the console is going to be like and report back to me like and they’re like, happy to do it, because they’re come. Completely underutilized resource. Most of the time, they’re like, I’m a project. I’ll do that. And they’re amazing. They’re really, really helpful, yeah,

Debbie Reber  

and just the way you’re describing that too, like, I’m thinking, there might be people who feel like that’s asking too much, or that’s imposing, but, but really it’s it will make everything so much easier for everybody involved. Yeah, it’s easier for them.

Mel Houser  

The appointment will be faster. It’ll be smoother. There’ll be no screaming. It’s it’s win, win. Yeah. Me a picture of the exam room please. Yeah,

Debbie Reber

yeah, that’s great. I’m just gonna remind people that we’re coming towards the end of the hour. So if you do have a last question, a burning question for Mel, please share it with us. This question came in in advance. The resources you pulled together in all the things project are amazing as they are, as we have discussed today, but they are largely aimed at improving the care for Neuro divergent adults, many of whom may be late diagnosed and may have suffered for years while having their health concerns being misunderstood or ignored. And so this parent wants to know if you were to produce a version of that for pediatricians who are interested in improving the health care for autistic ADHD kids and teens, would it look any different?

Mel Houser  

Nope. Okay, these kids have this. Okay, um, what is challenging is that this is where like, I’m like, legitimately having this urge to, like, on my second monitor, pull up chat, G, P, T, to write my script for me right now, but like, I’m just gonna, like, hope for the best that this comes out. Okay. There is an openness in the medical community. In the primary care community, there is an openness to acknowledging that they don’t know anything about neurodivergent adults because it wasn’t part of their training at all. It’s the oblique angle, like we began our conversation about so it’s the niche of openness, which is why we tailored this project this way. There is a premise that the management of autistic children is a well understood construct and does not need to be elaborated upon. Again, like I was talking about the workplaces when you tell the people they’re doing it wrong. They don’t like that. So we put this out into the ether in a in a way, to be most impactful, this resource has been accessed by more than 21,000 people from around the world. It is my hope that with the right pediatrician, I there’s an openness to look at this, but from a strategic mass impact standpoint, that’s why the resource was titled.

The way that there is also, you know, everything in this guide is evidence based. Um, there is not as much research on the treatments for these things in children, because it’s not recognized. How many people have this. So what do you do? You’re like, oh, autistic kids. They all have messed up guts, and they all have all these food allergies, and they have, you know, allergic rhinitis. And they, you know, they have the big, puffy blue eyes, you know, the purple eyes from their swollen allergies. Oh, and they keep getting injured because they’re so clumsy, like, oh my gosh, give them antihistamines, because it treats their mast cells for their whole body. Um, or at least consider that like, it’s not, it’s it’s not, they’re not united, it’s one thing. So a lot of the treatment described for adults, which are over the counter, medicines and supplement. It’s just a matter of dosing. It’s just like the doses are different for kids, but it’s the same interventions out there, like, that’s a pediatrician, so like, mast cell activation. I’ve never even heard of that, right? Because. It’s like, kids don’t get that. Kids don’t get long COVID. Kids don’t get that. Kids don’t get medical problems. Like, kids do have medical problems. They totally do.

Debbie Reber  

Yeah, I’m already like, do I have paper in my print? Like, I want to, like, I really want to devour your resources. As soon as we get off this call, I’m super inspired. Any last thoughts before we Oh, hold on telly. Just posted a question. Did I hear right earlier that all things, all the things, often come to the fore during puberty?,

Mel Houser  

Yeah, hormones trigger mast cells, so it’s any shift in the hormone. So it could be puberty, could be pregnancy. It could be no longer being pregnant. It could be menopause, you know, any hormone shift

Debbie Reber  

Or kids who are on HRT, potentially, yeah, yeah.

Mel Houser  

I mean, kids or adults on HRT during times of dose changes, like of loading up doses often, we need to give more mast cell support during those dose changes, and then we can back it off when the dose is stable.

Debbie Reber  

Interesting, super interesting. Mel, is there anything that you would want to, I mean, you’ve shared so much with us, so I hate to say, like any last wise thoughts to share with us, but is there something that you would like to leave this community with, again, we are parents of very neuro, spicy, complex, neuro, divergent kids of all ages. Yeah,

Mel Houser  

I think just, I really appreciate that, Debbie, that you have structured this like global community of caregivers like who have felt so alone in the world, and now recognize that there’s, like, you know, a gazillion people who are struggling in similar ways, and have resources and come together. And you know, if all brains belong, can be a resource to this community. We’d love to be. I’m going to put another link in the chat called Brain club. Brain Club is a free weekly community education program where we, you know, provide education about neuro diversity, and, you know, related topics of inclusion and all kinds of things. We have guest speakers and panelists, and you know, all kinds of things. And so we invite you to invite you to if brain club would be helpful to you, we’d love for you to come check it out. It’s every Tuesday at 6pm Eastern, but it’s also recorded, and all the archives are on the website for the past three years.

Debbie Reber  

That’s wonderful. You guys. I will grab the chat as well so and make sure all the links are with the recording so you can and I’ll have it posted by tomorrow if you want to go back and grab anything. I’m so grateful for you, and just for you, like everything that you do, it’s so we’re all so excited that you’re doing this work like I want to amplify I’m in the EU now. I’m like, I want everyone in the Dutch medical system to be like, tapping into your resources. But it’s just exciting. So I just want to say thank you, and thank you so much for just joining us today and sharing all of this. It means a lot. And we you know, especially as the world is on fire and everyone’s exhausted, like for you to take this time is really wonderful. So thank you.

Mel Houser

Thank you so much. It’s been, it’s been an honor to be here. And I, like Debbie, I’m so, so grateful for you. You know, as a, as a, as an ambassador for this work. Oh,

Debbie Reber  

Thank you. It means a lot. Thank you. All right, everybody, get on with your days. Great to see you all and take good care and thank you again. Bye, everybody. Bye.