 and record. Recording in progress. Thank you. Well, hello, everybody. It is great to see all of you and or feel your energy. And I am Mel Hauser. I use she, they pronouns and I'm executive director here at Albrains Belong, Vermont. And welcome to Brain Club. Share screen and we'll orient everyone. All right. Tonight we're gonna be talking about reimagining healthcare. This is the fifth week of the month and all month we've been talking about life reimagined in all the various domains. So it's only fitting that we cap up with what we do for a living. So by way of introduction, all forms of participation are okay here. Looks like many of you have figured out that you can have your video on or off. And even if it's on, we don't expect anything of you. You can, you know, we certainly don't have to look at the camera, you know, you can walk, move, fidget, stim, eat, all the things. And everybody's welcome. And because everyone's welcome, including people of all ages, we are very big about safety and about consent. And so we, you'll see me in a second, we have a content warning for some kind of shocking healthcare statistics that I'll include at the beginning of this presentation. And we just ask that you use content or you're welcome to talk about, you know, a variety of topics. We just ask that you give content warning so people can listen with informed consent. But I would say that even though we're talking about healthcare today is for education purposes only, not medical advice. And just because we really wanna be respectful of people coming from a variety of perspectives and some of them, it's really hard to hear about traumatic experiences. We just, just individual traumatic experiences are best processed in a therapeutic setting because we're not in a place to be providing medical support in the context of Brain Club. Last bit of access, just word about language. You'll hear me and maybe other participants tonight use identity-first language. I am autistic, that's in contrast to quote a person with autism. And people are welcome to use whatever language you use for your own self. But just if you're new to Brain Club and you haven't heard language like that, I wanted to set the stage that that's where that comes from because for many neurodivergent people, neurotype is not needing to be separate from identity. And so that's why I use that word. And we welcome people to use whatever language for themselves that they use to describe their own identity. Okay, all right, one more thing about access. If you'd like to use closed captioning, they are turned on already. You just have to toggle them on at your end to use them. So depending on your version of Zoom, you may see either live transcript CC or if not, try the more dot, dot, dot and choose show subtitles. And you can choose hide subtitles if you'd like to turn them off. Okay, now I'm ready. So some Brain Club regulars have likely seen this slide like a million times, but hold on a second. While I'm, I just wanna make sure, I'm gonna make a couple of members of our team here, co-hosts to let people in from the waiting room because I'm no longer gonna be paying attention. There we go. Sierra, Sarah, and Lizzie can I make a co-host too? Just in case we have some backups. Sure. Great, all right, awesome, okay. So I, as many of you know, I did not know really anything about brains until I became a parent. Despite having a whole lot of medical education, and there I am as a picture of me on the left, a pregnant a week before I gave birth, a to Luna. And here I was, a doctor takes care of babies and knows all the things about child development, quote, all the things about child development. Yeah, no, I did not know all the things about child development. And I thought I had it covered, but Luna felt otherwise. Luna made it clear in no uncertain terms that my medical education like was profoundly inadequate for her needs. And it was my environment that was a problem. My environment was a mismatch for her needs. And she let us know in no uncertain terms that the world was too bright, too loud. And so much of the defaults of like being a baby, like the defaults that were imposed on her and what that's supposed to look like, that did not work for Luna. And she let us know by screaming for two years. And healthcare, healthcare was a place that Luna, so as Luna's six now, and Luna continues to make it known when she does not feel safe. And healthcare environments were a place that Luna has never felt safe. And so many people that is true for, except people get the message that if something's hard for you and you look around and everyone else seems to be doing the thing, people get the message that there's something wrong with you. There was never anything wrong with Luna and there's never anything wrong with someone who feels uncomfortable in healthcare environments. But that's not the message that people receive. And so tonight we're gonna be talking about part of reimagining healthcare is shifting that narrative from the healthcare system as expert to putting power back in the hands of patients who almost always know what we need as human beings and are the experts in our bodies and know when an environment is not meeting one's needs. So before we get into that, I wanna share some background information that I think is pretty important. It's in fact why I quit my job to start this organization. So I'm gonna give a, actually I tried to do a little animation and forgot that I did it. All right, so we're talking about empowering patients as I said and we're also referring to the double empathy problem. So the double empathy problem is a term that we refer to a lot during brain club. It's a term coined by autistic social scientist, Damien Milton in the UK, referring to rather than like one normal set of social communication skills and like everyone else, it's about a mismatch of worldview and a mismatch of communication styles that is responsible for misunderstandings. And there are so many misunderstandings in the healthcare system. And what we've come to learn in the past year that is involved in building a connected healthy community. So now my content warning before I get into some background information. So I'm gonna show you some pretty terrifying health data, particularly in reference to autistic people's health. And in so doing their mention of healthcare trauma, mention of premature death, suicide and a reference to ableism. So for the next, I would say for the next three minutes if you would like to shut your sound off or leave the room, I will be done with that in three minutes, I promise. And Sierra, can you tell me when three minutes is up so that I can be true to my word? Excellent, okay. So, Darity et al in 2020 did a study of autistic adults looking at the barriers to accessing healthcare. And in fact, in this particular study, these were all autistic people, autistic adults who had established primary care relationships like they were an established patient. And yet of that group, almost 80% had difficulty accessing healthcare. It's not like they couldn't access healthcare because they couldn't get an appointment like they couldn't get a practice to accept them. They had that and they still couldn't access healthcare. And the themes of that study are about the barriers of why they could not access healthcare related to three main buckets. The environment, including like interactions with the environment, including with the people in the environment. So that included sensory processing, communication challenges with staff and interdisciplinary staff. Barriers with the provider, it was perceived by the autistic people in the study that their healthcare providers had insufficient knowledge and skills to take care of them and that they had unhelpful stigmatized attitudes. And back in the same study, about only a third of autistic adults sampled, even told their primary care physician that they were autistic, specifically because of fear of judgment. Whoa. And problems with the system. There are so many defaults in the healthcare system. Now you must fill out a 20-page packet to become a new patient. You must pick up the phone every time you want an appointment. Yeah, I guess who rarely gets healthcare because the phone and the culture of the healthcare system and I get to say this because I was trained in it. Like, you know, there's a hidden curriculum for trainees that there's a correct way to be a person. I remember as a medical student, you know, hearing doctors talk about, oh, there's the patient with the list as though there was something wrong about like organizing your thoughts and writing or, oh, there's a positive cell phone sign meaning if someone were using a cell phone that means they can't be in pain. So many people have kind of a pain on their arm and you can't do the thing. So there's just this, these myths that are harmful, harmful for health. I mean about this because autistic patients are dying. The average life expectancy for an autistic adult is 36 to 54 years and I didn't know that. When I first learned that, I flipped my lid. I was 37 and I had just received my autism diagnosis. The leading causes are cardiovascular disease and suicide. We're gonna talk a little bit about what we've learned here in the past year about the cardiovascular system and in neurodivergent people, not specific to autism and suicide as a leading cause. Autistic adults have a four to nine times increased risk of suicide and that risk is higher in those with lower support needs. And it's been shown in the literature that pressure to camouflage or mask one's autistic traits is independently increased with risk of completed suicide. And so there are so many messages that actively encourage camouflaging and masking. This is not only bad for health. We talk about that at brain club every week but it increases the risk of death. Consent minutes now. Thank you. Right in track, I'm losing. It's for someone who doesn't feel time. Now it's pretty good. So when we launched all brains belong and many of you have seen this graphic many times, we set out to improve the health of the neurodivergent community. And yeah, it would have been really easy to just open a medical practice and say, okay, we're doing healthcare now. But I don't think that would help many people's health because to do anything for the neurodivergent community, we have to do everything. It's not just medical care. It's, I mean, medical care is like a huge unmet need but it's social connection. It's accessing education, it's employment. It's all part of health. So removing the arbitrary distinction, part of reimagining healthcare is removing the arbitrary distinction between medical care and the rest of life or healthcare and the rest of life because it's all part of health. So when I was in medical school and residency, I got taught that there were co-occurring conditions more common for autistic people. But it was never really told to me or it didn't seem like anybody was wondering why. There were like some, you know, some assumptions made but what we learned here in our first year at Albrightons Belong and, you know, we don't have all neurodivergent patients but we have mostly neurodivergent patients. We were forced to zoom out and recognize some patterns because we're pattern matching systems thinking people that our patients had a lot more in common than being neurodivergent. What they had in common was different connective tissue. The nervous system, the musculoskeletal system, the blood vessels, the gastrointestinal tract, even the shape and presentation of the face were different and turns out connected tissue holds the whole body together. And so a lot of the common medical conditions that neurodivergent people more commonly experience has to do with connective tissue. And because everything is connected to everything, one of our patients came up with that. I thought a pretty profound quote. They said, hey, the way you explain that to me kind of reminds me of a ball of yarn where if you pull the wrong string you make the knot tighter. Sounds like you have to find the right string to pull. Yup, but the problem is that so many of the, so much of the healthcare system is so fragmented, right? So like the body parts are fragmented and like, well, we're gonna, we gotta take care of this one part. And you know, in the 15 minute appointment we can't take care of the rest of the body. You can take care, it doesn't work. And in fact, some of the standard management from some parts of this big picture that we call all the things cause it doesn't have a big picture name yet. It's cause mostly all the people here have all the things. So part of the standard management of some parts of all the things make some of the other parts of all the things worse. So for example, there is a condition called pots or a postural orthostatic tachycardia syndrome has to do with when you stand up, heart rate gets really, really fast and people get really bad symptoms related to this. And I wonder how many people in the audience you can have that without maybe even having a name for it. Anyway, but the point is one of the standard management for pots is compression. And it turns out when you have a really extra stretchy connective tissue that impacts your blood vessels, turns out if you compress those blood vessels you cut off your blood flow. Well, it turns out that's not good for health. And that's just one of the many examples where some of the standard managers from some parts make the other parts worse. I made this slide and called it the many names of suffering and invalidation. This is, there are so many medical conditions that have a lot of stigma associated with it. And patients who have these conditions, they often don't get their needs met. And the healthcare system doesn't frequently do a good job at meeting their needs. And the last item on this list, long COVID. So in April of 2022, we did some internal quality improvement looks at our practice. And we found that 70% of our practice had long COVID or long COVID-like conditions. And we're like, what? So we started learning about long COVID. And here's how we did it. We established a task force, not just of interdisciplinary clinicians, but of patients. We invited our patients and other members of the community with all the things and we got together. We prioritized the value of lived experience. And we started the process of building a community village, a community village of learning and healing together. We didn't know how to manage long COVID. We didn't know a whole lot about all the things despite me having all the things. I still didn't know the best way of managing all the things. So we brought people together and we learned. And since we've began that process, we haven't had a single new case of long COVID in this practice despite starting out with almost like the majority of the practice having long COVID because neurodivergent people, for those who don't know, neurodivergent people have higher rates of long COVID. That's a known thing in research related to the immune system, just higher risk of complications of COVID including long COVID. So it wasn't like, I mean, it was 70% was really surprising to me, but we has having more neurodivergent people in a concentrated area. We were gonna see more long COVID than other primary care practices. But to turn that around to say, by shifting the script and empowering patients to be part of learning and healing together, that's how we've been reimagining healthcare. So because instead of zooming in to the different body parts, it's zooming out and seeing the big picture. And like all of the many, we say this like probably in every brain club in one context or another, that safety and regulation and co-regulation between people, that's the path to health. And so bringing people together, many of our patients come here because they're looking for connection. They're looking to meet other people, navigating similar health challenges. They're looking to engage in the broader community. And that has been that peace alone is such a, when I tell people we do that, like healthcare people, when I tell healthcare people we do that, they're like, but HIPAA, like, uh-huh. We in fact can not violate HIPAA and help the people get their health needs met, turns out. There's so many myths about what healthcare has to look like. And as I showed you, it doesn't work. So I had a couple of ideas of things I was wondering from you, but we can talk about, we can take this in any direction folks wanna know. Maybe we can talk about what you wish, what you wish healthcare looked like. I mean, what's some strategies you found helpful to get your healthcare needs met or that you've seen done. Or we can, you know, I just want to hear your comments about some of what you've seen so far. Hi, I think with healthcare, what we need is we need, like there needs to be sort of, the social model needs to come into play and we need to get rid of the medical model, but medicalizes people and people's differences and then neurodiversity. And we just need to, and it needs to be more person centered. It's like, who often there's like, okay, this is how we're going to do it rather than like, this is what we'll want to do. And like, yeah. I mean, in an emergency it might be harder, but that's not to say that it would be impossible and that what the patients feel is taken into account and they're not just seen as being difficult. Yes, thank you, thank you for saying that. You know, I did a training earlier today for nursing students. And what came up was exactly what you said that the healthcare system often talks about patient centered care, but it's not the fault, it's not of the individuals in this, it's the system. The system is developing like the opposite of customized individualized care a lot of the time. Becca. Well, I kind of have two things, but one, I feel like even just getting access to health insurance is a hard thing. I recently moved to Vermont and so I had to switch my insurance and had to do it in this very stressful type window of open enrollment and had the experience of like the way that the information was presented when it was like being sold to me was different than the information packet I got in the mail after signing up and basically misunderstood what would be covered and what wouldn't be covered. And so I think, yeah, some sort of assistance to even just navigating how to get health insurance so that you can get healthcare would be helpful. And then also along those lines, just like, I feel like mental healthcare is kind of this like cherry on top, like it's like this special extra thing that you get if you pay more or whatever. So it would be nice, especially like after you shared the like statistics of how helpful it would be to have easier access to mental health that I think could make a really big difference in the whole picture of a human. Absolutely. Thank you for sharing that, Becca. I'm so sorry that you've had to go through this as so many people have health insurance makes no sense. I don't understand health insurance. I ask like, we have a resource coordinator here at all brains belong works with our patients to understand so many of the and overcome so many of the barriers to like things outside of our organization, like Amy tells me everything about health insurance because I don't understand it and I'm a doctor. It's so hard and it's so unfair and it's so, it's so awful. And yes, the other thing is that, I think the healthcare system really unhelpfully makes a distinction between physical and mental healthcare. Like this is one thing and it's health and it's treated by separate systems. And that's not helpful. And so often people tell us the stories of, the initial explanations for their symptoms of all the things. Oh, well, you must be anxious. Yeah, I would be anxious if my heart rate were 150 also. Like, yeah, that feels really awful. But like just the idea that they're mutually exclusive and that's so not just unhelpful, but it's harmful. Like it's harmful. It's harmful to tell people that anything is in your head. Yeah, it's in your nervous system. The one that goes through your whole body. Emily has a hand up, Mel. Oh, sorry, it's, Emily, you have to be, and you're also in my periphery or you're in my upper left corner. I'm so sorry for not seeing you in my peripheral vision. Yeah, no problem. So you updated to, it's normally yellow and now it's like skin tone, which like I don't think I actively chose. Very strange. Anyway, I was gonna say that the thing that I find most frustrating is that it feels, and I don't know if it's just a, you know, where I live, but the primary care system doesn't seem to function as I think that it should. So my primary care doctor will see me and refer me to all these specialists. And then the specialists will give contradictory advice. So like one will say, hey, take this NSAID for all your inflammation. And then the allergist will say, stop taking the NSAID because of your gut biome. And I'll be like, oh, but these two doctors told me to do these two different things. And I understand that I might need one. And then I'll want to ask somebody who knows more about medicine than I do. Okay, so there's risks and benefits to each of these. And please tell me all of the information so that I can make, you know, what are the potential harms and helps that are gonna be caused by taking this medicine or not taking it so that I can then make an informed decision. And nobody has the time to do that. And they don't know each other's specialties. And then my primary care physician doesn't, you know, have the time to, because of the way the system works, not because she doesn't want to, I think she's wonderful. But, and so that's where I'm like, I wish that there was just somebody who could actually, that they would, the specialist would tell the advice to the PCP who then would go through my options with me because like, I don't doubt that it's a real thing that I should both take NSAIDs and not take them, but that is actually not possible. And I'm gonna have to pick one. And I would like to make an informed decision with somebody who knows more about medicine than I do. Health care, yes, I'm, yes, yes. Like, so I, that story just encapsulates so much of the problem. And we hear versions of that story all day because that's what goes on. You know, the, you know, the piece of education or the strategy I might, I might offer is that since you do have a good relationship with your PCP to be, to be something you feel comfortable going in with a clear agenda. I am here to talk about the conflicting advice between these two specialists so that you can actually have someone who, quote, knows more about medicine than you do thinking through that with you because other ones it's how could you not feel overwhelmed and confused and super stressed out. I'm reading in the chat, sunrise shares. I wish I had a doctor who understood autism. I'm fairly newly diagnosed. So I'm talking about past experiences. When I would give my true symptoms I was treated as if I were lying and not believe that is so common. We hear that all too often. When I put those past experiences together they point to typical symptoms that those on the autism spectrum have. Yup. Probably, or sorry, my dyslexia gets in the way of reading often. Possibly neurotypical people lie but as is typical of a neurodivergent person I do not lie. Wish I had been believed and might have been diagnosed earlier. My diagnosis came at age 72. And some of my confusing life experiences would have had clarity and some of the losses I agree would not have been losses. Amen to that, sunrise. Thank you for sharing that. And I think that, and this is what I shared with the nursing students that I presented to you earlier today. The system, like the medical education system contributes so much to the experiences that you had. In medical school I was taught that people who have this particular symptom they present this way. And as though there were one way to present it makes no sense. And when you're thinking about the natural diversity of human beings, people are gonna experience things in all different ways. And I think that, especially in the case with, with all the things, this, these multi-system immune neurologic hormonal differences that most autistic people have, there's no training about that at all in medical school. Reading in the chat, CB says, I wish I could text back and forth in medical appointments, but it's not an option. Access to mouth words and processing others responses in 10 to 15 minutes is inaccessible. Absolutely. So one thing, and again, this is part of the ableism of the healthcare system is that the onus is on the person with the disability to come up with their own accommodations that is ableist. And I can share with you that in our healthcare practice we text back and forth with our patients all the time. I wonder if you tried asking for, whether it's using your phone, using, if you bring your laptop and you type something, whether, anyway, just bringing that up and asking for it, you shouldn't have to ask for it. I'm upset, I'm upset as an understatement. I'm really pissed off that you have to ask for it. And most people don't even know they can ask for it. We think that inclusive design offering flexible, multimodal ways of engagement to all people, not waiting for someone to disclose a disability, but to all people, we think that's better. And short of that, you can ask for things. And it is really hard to come up with your own ideas, but you have the idea already. And it's really hard to advocate for yourself in an imbalanced power dynamic. So maybe that suggestion is useless, but I just wanted to put it out there that you are allowed to ask for things. And maybe the thing is to think about what might make it safer to ask for things, whether that's bringing someone with you, making your request ahead of time, reading in the chat. I think like most autistic people, I have a long list of ICD codes, diagnosis codes. And they see this and automatically think that I'm exaggerating my symptoms or something, or maybe I am deemed way too complicated, even before I open my mouth. Yup, yup. I'm reading from Cat. And I think probably Cat, maybe you typed this when Emily was sharing their story. Yeah, okay, all right, yeah. Yeah, that is what a PCP is for. Yes, absolutely. And Christina adds, even when attached to a giant document that was categorized in specific symptoms listed and even links sometimes, they don't read it and they want me to go over all of it right there in the visit in a short time. Yeah, and that may be conflicting access needs, but that's not what's presented to you. So in our practice, we try to have just open conversation about conflicting access needs. So if someone prepares a really thoughtful document, it's my access need, because of my dyslexia, like I can't just like read a bunch of emails, I gotta print it out and I gotta highlight it and I'm gonna do that with you during your appointment. I'm gonna read what you wrote and you're not gonna have to rehash the whole thing, but we're gonna do it in an appointment, because it's laborious and I'm gonna do it because you put in the labor of preparing the thing, but that's not what's communicated. It's just like, oh yeah, tell me what you're here for. When this is all about access needs, I think conflicting access needs is the key to the universe. Sarah and then Mia. Yeah, I was gonna say about access needs. I was talking to a friend recently who was asking for support around going to a doctor and what might make it easier and the conversation centered around things like, well, bringing a legal pad with you to write notes down or having notes, taking notes while you're at the appointment, just all kinds of different things that might be helpful. And I wound up reflecting on my experience giving birth and realizing that I have two children and the first birth, I didn't really know that I had rights. I didn't know how to advocate for myself in the system and consequently, I didn't have a lot of ownership over the experience. And in between my two children, I saw the documentary business of being born and it was a completely different experience the second time around. And what I was reflecting on recently in my second birth was that I had a birth plan, a document that was at the door and anybody who walked through that door needed to read the birth plan. And what I was reflecting on is that really my birth plan was me stating my access needs. So it was like I wanted low level lighting or I didn't want a thousand med students coming in and out of my room while I was giving birth, like all of those things and recognizing now through the lens of access needs that that's really what that document was about. Yes, yes, oh, that's so, that's so, yes. Thank you for sharing that. Nia and then Becca. Yeah, I think what was said about people not always knowing they have certain rights. I mean, I don't know a lot of my rights and I do feel because of having an abusive past I do feel quite intimidated asking for them because I wanted people might think I'm, yeah, I mean, I haven't had any particularly bad experiences in like physical health but with mental health services. A lot of people have made me out to be the problem and I think also I was talking with someone today and they were saying about how when it comes to mental health a lot of us, a lot of these things are created to sort of because they don't want us to be in a state where we can question the status quo and how so much so many natural human reactions to things that sort of made out to be sort of disorders just because like I think when we're sort of in a good when we're in the place to, when we're off, when we're in a good place, we can mentally, we can sort of stop and just question the whole system and that isn't, a lot of people don't want, a lot of people in the system, they don't want us to. Or they may not be able to because they may not have access to their cortex either. Even, you know, and I'm gonna write this down so I don't forget because it's not my turn yet. Becca, go for it. Yeah, just thinking about access also I, so I was diagnosed like a little over a year ago at age 35 and in my health insurance experience also learned that certain ASD services are covered and it seemed and I could be wrong because again, I don't fully understand health insurance but the way that the information was presented led me to believe that the sessions with my mental health provider would have been covered if I were under age 22. Like for some reason there's this like age cutoff for any sort of services related to autism, which I don't know if that is all insurance or just mine. I have Blue Cross Blue Shield, which seems like a relatively universal health insurance. So anyways, that was also a strange thing to learn because obviously like autism doesn't go away when you turn 22. Yes. And we are diagnosed later in life. So it's like, well, then can I get the 22 years of care that I didn't get back then now? Yeah, no, you're absolutely right. There are these like, these boxes, these like really arbitrary. Anyway, I mean like services, you know, it, anyway, things are not created equal and insurance makes distinctions between, you know, mental health support and occupational therapy. And like just as, and both are very much supporting, I mean, one of the most common supports for mental health that I refer my patients is to occupational therapy. And anyway, yes, so confusing. What I also wanted to add about Mia's point about difficulty with like asserting rights and feeling like those in power don't want you to, I think it's even, it's even more basic from that, I think in a lot of instances, which is that the system dysregulates patients and healthcare providers. The system dysregulates everybody, it's the system. And so dysregulated people don't have full access to their cortex. And so so often, you know, and I don't remember what month it was, it might have been like June or July, one of our healthcare related brain clubs, we had a nurse on a panel who was talking about how, you know, she was, you know, made to work like a 17 hour shift and like taking care of all these patients and feeling so awful that she couldn't do the right thing. And like that this was typical, like the inhumane working conditions is really common. And the, there's so many people who don't have their access needs and might who don't even know that they have access needs, including unrecognized neurodivergent people. So it's such a messed up system. I'm just catching up in the chat, sorry for missing all this. So sometimes insurance can deny things because the person in medical billing made a typo and wrote the wrong medical code for something, which results in hours in multiple phone calls and autistic nightmare and CVS adding. Yes, it's so frustrating. I tried to reach up to disability services to advocate for the millions of time in a medical assist facility and you could only call them. No messaging or email to access. Yep. Kelly says, it seems that even our health is being viewed from what will keep the status quo lens rather than what do we need, right? Systems perpetuate systems. And this is a very big system that is designed to perpetuate the system. I, yes, Luna is singing in the hallway. I wonder, has anyone had any good healthcare experiences? Are there any strategies that they've personally found helpful that others might be able to learn from about like things that they've done or things that kind of worked out? Cat sharing, one of my favorite specialists when I first met him gave me the option to choose between a short visit where he basically told me what he thought I needed to do or a two hour visit where he taught me about my condition and gave me suggestions to consider. I chose the long visit and took pages and pages of notes and even though he saw that I wrote it all down, he printed out his notes for me too. I got a whole file. That's pretty interesting, that's a story. I think that story is gonna be hard to beat for sure, but anybody else have any stories of things that have gone well? Linda? I have had enough experiences where I went in and I said, this is happening and I was told I was wrong. And we go through this dance five or six visits and then I ended up being right. And between that and now being technically old, I finally just started to tell people, no, I am right. And go ahead and do the test and then we'll meet back to discuss what we need to do next. And they say, well, it won't be covered. And I said, well, once you find that it was needed, we can go back and recode it. And that has worked a couple of times. So I guess part of our system to remake the old system is to reinforce each other that we actually do know what our body is doing. And we know our kids and we know our families and we're right. Amen, that's right. Because how could it not be true that an individual is the expert in their own bodies? How could that not be true? It's obviously true. Yes. Emily's adding, my PCP is only allowed to spend so many minutes with each patient. So in the time's up, she asked me to message her through the system. She spends an hour after work each day responding to everyone's messages off the clock. I love that she does this but wish she didn't have to. Yeah, so it's a conflicting access need thing. And I think that, if you work for a system that violates your own autonomy as a professional as far as how much time you spend with people, but maybe that doesn't have to limit how often you can see them. So if you run out of time, you're running out of time and then, but again, the system also is a barrier to that work around. Because then there's maybe not any room in the schedule for another three months because the system is set up to incentivize the system to over admit patients, despite the lack of capacity to fit them into the schedule. The system perpetuates the system. Christina's adding, Linda, that's so hard to hear that you had so many appointments for them to agree with you. Every appointment's a challenge for most of us and I give up a lot of the time before I get what I need. Yeah, and that's all too common, all too common. I presented a couple of weeks ago for Academy, which is a really cool autistic led organization in the UK. I presented on all the things. And we covered and Lizzie, can you link to that in the chat, Sierra and I prepared some like strategies for how to talk with your healthcare provider. And anyway, so there's some like practical tips in that recording that we'll get in the chat. But in summary, I think like two of the strategies that I talked a lot about on that recording were the idea of like scripting what you're gonna say ahead of time because if you're in dysregulating environments with the overhead lights and the clicking ticking clock, yeah, right, it's hard. And then you have the pressure of the 15 minute visit and it's just that. So being really, really being specific to about what you wanna make sure you get across that and bringing someone with you, not just to like take notes for you, but to like co-regulate you. If you're used to being othered and invalidated by the system, you go in there and even before anybody walks in the room, you're dysregulated a lot of the time. So co-regulation is really important. Reading in the chat center says, for six years I was seen in a community health clinic. I had no insurance and paid a percent of my salary for visits. A physician assistant was the best provider I ever had. I am a question box and of course I've been shunned for this by some, but this provider would find on her computer screen a website with the answer to my question and she in effect over a period of time taught me medical websites that I could find answers. She never questioned my symptoms. She accurately diagnosed my benign positional paroxysmal vertigo and she provided care for my broken wrist which mended with absolutely no residual effects. And she taught me to exercise the wrist daily to keep it from losing its, yeah, I think range of motion. I think that's a turn I'm used to. I felt so safe and well cared for by her. She has gone on to be in some type of rescue medical person for those needing medical attention on wilderness trips. And I bet she's happy in her work, at least I hope so. Oh, oh, oh yeah, you're saying goodbye. Thank you so much for being here. And Kelly says, because my husband isn't facially expressive, they don't believe his pain, right? So yeah, he isn't formally diagnosed, can't afford it, but he presents textbook autistic. Yeah, so he can't get his arm fixed. Oh man, right, because the one right way to present in pain thing, like that makes, that's how could that possibly be true? It's obviously not true. So sorry. Healthcare, the opioid crisis has made this harder. I think, yeah, I think that there are, talk about conflicting access needs. I think many healthcare providers have been taught certain things. There's regulatory requirements, there's like threats of like losing your license and like these threats are real, they're really there. And I think like we say in so many instances that transparency is the way out of chaos. And I think that naming that, naming, like if people could just, people within the healthcare system name the stresses and pressures, I think that's the first step, right, of transparency so that your patients don't think you're judging them. Because it's interesting when Summary's gave the examples of what her provider did that was so helpful, some of it was so basic. And it sounds like just the never questioned my symptoms, told me she believed me. Sometimes that is the most therapeutic thing that someone can do. And I think that, you know, yeah, most healthcare providers are not gonna know anything about autism, they're gonna know anything about all the things. It's about being able to say, I don't know, but I believe you. I don't know, I believe you and I'm gonna work with you to figure out this together. And that's a paradigm shift. And that is, I think, another really important part of reimagining healthcare. So I appreciate all of you being here today and joining in this important conversation. And we hope you'll join us back next week to, hold on, I'm just reading the chat. Becca says, someone has recently moved, I don't have anyone come to appointment, but I love that idea and it'd be awesome to have a volunteer group. Yeah, we talk about that in our medical practice a lot. And I think that's kind of one of the things about building community. And I think that this is a place that you can meet friends at. And there's so many people that don't have that connection. And that's one of the things. And that's an important part of health is having those community connections or social connections. So please, please, please keep on coming here. And next week we're gonna kick off our theme urgency urgency culture, the impact of urgency culture on our health preview. There's bad impact on health for urgency culture. So next week is urgency culture and internalized ableism. So we look forward to seeing you next Tuesday. Have a good week, everybody.