 All right. Hi. Welcome everybody. Welcome to Brain Club. There's a couple people I don't know yet. So welcome. I'm Mel Hauser. I use she they pronounce and I am executive director at all brains belong. And this is brain club. I'm just green and get us oriented. There we go. So, Brain Club, our weekly community conversation about everyday brain life. This is an education space that we created in January of 2022. I believe it's been so long, you know, for the, for the broader ABB community for purposes of educating the community about neurodiversity. You know, this, this, what that just, sometimes it helps as by way of a shared community agreement just to name what this is not and why. So we have lots of different programs here. We do have medical programs and we do have pure support programs, but this is not one of those programs. This is an education space. And why is because some of, so some of you have those other kinds of relationships with us, but many of you don't. And we want to make sure that that if folks are in a space of processing individual situations or individual trauma, it can be a thing that if you start processing that and don't get to finish and you don't have support afterwards, that actually can be harmful, which is why we really delineate Brain Club as an education space. All forms of participation are okay here. You can have your video on or off. Many of you have figured that out already. And even if it's on, we don't expect anything of you. You certainly don't need to sit still or look at the camera or anything, you know, feel free to fidget and stem and eat and take breaks and all the things and everybody's welcome here. And all formats of communication are okay. You can unmute and use mouth words you can type in the chat. And you know, given the size, size of brain club to kind of depending, you know, I sometimes I can read everything from the chat sometimes I can just keep up with selections, but we often have a robust chat box going throughout. And in addition to affirming all aspects of identity, particularly as the size of brain club has grown. We think it's really important to protect the group's collective access needs with very specific communication ground rules. So how we respect and protect group access needs is with respectful language, particularly because a lot of folks are participating with video off there may be little ears listening nearby so just be aware of that in terms of the language that you're choosing and the topics that you're discussing. And we want to give space for all participants to participate. Observation is a completely valid form of participation. And if you would like to participate, you know, directly, we want to make sure that you have space to do that. So if, you know, when we get to the point of group discussion after our panel, just, just, you know, if you've shared if you shared out loud, make them just just be aware of given space for other participants to have a chance. All right. Well, last bit of access closed captioning. It is enabled just have to toggle it on if you'd like to use it. So depending on your version of zoom and look for either the lab transcript closed captioning icon. And if you don't see that book for the more dot dot dot and choose show subtitles, get you do the same thing that choose hide some title to turn it off. And mention the chat before that's the chat box window. And that's how you can find it. So we are continuing our June 2023 theme of neurodivergent health. We started to discuss healthcare experiences last week. And we're going to do a recap for those who missed it. So recap the status quo of neurodivergent health is not good, not good at all. And we talked about how there are extensive barriers to healthcare access for neurodivergent folks flustering in these three buckets, the environment or healthcare interactions, issues with the provider. Patients perceive that provide providers have insufficient knowledge and skills and unhelpful attitudes to provide care. These are the study of autistic adults in primary care and barriers within the system and the defaults of the healthcare system. We also talked about how healthcare providers unfortunately still in 2023 don't get a lot of training in autism, ADHD, dysfraxia, dyscalculia, dyslexia. And we talked about how in the example of autistic adults when primary care clinicians are only trained in stereotypes, not surprisingly, folks go unnoticed and this gap between someone's experience and having a narrative to explain it gets wider and wider as time goes by. We also talked about how medical providers don't get training in the particular physical health experiences of autistic and ADHD. That there is a cluster of neuroimmune conditions that involves the entire body. And so in a world where unfortunately healthcare is often so fragmented into body parts, often not zoomed out enough. It's like Google Maps when you're so zoomed in, you don't know what continent you're on. And many people have this pattern of neuroimmune conditions that goes unrecognized often. And it goes unrecognized often for decades. Lizzie, can you pop in the chat the link to our Instagram post on the all the things project and maybe also the link to our website, the specific all the things website with the video and stuff. Okay. Just for folks who want background background. Because the idea is that this is contributing to a non-autistic healthcare needs. Last part of recap is we talked about the double empathy problem where it's not that and by the way that that term coined by Dr. Damian Milton an autistic social scientist in the UK who found in research studies that miscommunication happens when there is a mismatch between autistic and non-autistic people. But it's not that there's one set of normal communication skills and then everyone else. It's that it's when there's a mismatch between worldview and communication style is break down. So we tried to bridge the double empathy problem between patients and healthcare providers last week. So, so we had a, it was, it was our medical providers here at Albrightons Belong, myself, Sierra Millard, Dr. Dave Borzella, and we had a discussion about what our training was like and how we were able to make our own journey of unlearning. So, so if you missed that last week, we can, well, we can, we can link to that in the, in the chat also. Because today it's time for part two. Part two is patient stories, the patient experience of being a neurodivergent person accessing healthcare. So before we, we play our pre-recorded video, which it will run about 25 minutes and we'll have the chat going while the video plays. And then we'll have plenty of time for discussion. So just wanted to first off thank our community panelists. These are five members of our community advisory board, Sarah Knudson, Matthew Lafleur, Amy Noyes, Linda Riddle, and Zeph. Thank you all so much. And many, many of you are here tonight. So, so with that, David, take it away. When you think about your experiences trying to access healthcare, what comes to mind? It's very hard to access health, healthcare. I think it's hard in general. I think our system is broken for pretty much everyone, but the amount of additional layers that come when you have, you know, in a way, any type of disability just, it makes it truly a monumental problem. When you think about your experience trying to access healthcare, what comes to mind? This is going to be kind of a bummer of a conversation, so here's a content warning because I don't have a whole lot of really great healthcare experiences. I have medical PTSD. So when I think of the healthcare experiences that I've had, a lot of them have been very challenging, particularly from communications perspectives, trying to make myself understood to the doctor and being understood. What comes to mind is a doctor or physician or the nurse, you know, willing to understand that this individual is different than all the others, and how can he or she adapt to that individual needs? But with me it's more about, you know, will this doctor, nurse, physician accept me for who I am, not what I am? Obviously I've been autistic my whole life, but I didn't know I was autistic, so I never knew what the challenge was. I think about myself even as like a little child and someone had to put attention on me or had to touch me in any way. I think I had a real fear response that I'm just starting to really start recognizing, and I didn't always feel like I was asked permission, and that I realized in retrospect is huge. So I kind of didn't access healthcare or access that very, very minimally. Even in emergency rooms, like not being able to tolerate the environment and being, you know, potentially written down as an uncooperative patient because I had to leave before they were done with their stuff because I just couldn't tolerate it. What are some challenges that you faced in accessing healthcare? The challenges that are faced accessing healthcare is accessibility formats, documentations that they give you new patients or existing patients, you know, forms that you had to fill out per meeting or pre-form meetings when you get there for your doctor appointment that day, which, as you know, is not accessible. It was very anxiety producing for me. The thing I think is like what I've recognized even in like a basic wellness exam, there wasn't a connection. I didn't have a connection to my body and I didn't have a connection to understanding why the question was being asked. So if I went to a wellness exam and they're like, tell me about your teeth. And I would just be like, I don't know, I don't know how. And I, because I'd be so anxious, I don't think I had access like to my fully functioning, like speaking. I just wouldn't know what to say. Nobody believes you. And then there are different levels of that in, you know, well, you look at it wrong or you couldn't possibly know yourself because you're this subgroup or that subgroup. And then there are the ones where, well, they, everybody looks fine. So it has to be fine. And I found out a lot as a parent that I would know something was wrong, but my kids didn't look disabled. They looked cute and perfect and just the right amount of chubby. But no, no, I'm just one of those moms. Yes. The difficulty health care system for me was the physicians of trying to understand my complexity of my learning knowledge and how I learn and how can they adapt to my learning. For me, it's more about, you know, not only speaking to them on that same level, which is very, very tricky, but also complexity of the healthcare system in itself because they're running on the medical terminology of the healthcare college insight. And when they use those or explain those two patients, sometimes patients like myself with disabilities cannot get it because it's, you know, it's like you're teaching a seminar at a university, but you're doing it with a patient. Well, she has staring spells. Well, she can walk a straight line and touch her nose. So there couldn't possibly be any neurological difficulties. You know, it's coming from otherwise knowledgeable people. You start to wonder, where is the problem? I have spent a lot of time not getting a lot of things. Part of it was, well, maybe this is just something I'm not, maybe I am wrong. You know, maybe there's this big cosmic thing that 95% of the populace gets and I don't get because I'm me and I don't get it and I didn't know why I didn't get it then, but I just knew I didn't get it. But no, it wasn't me this time. A lot of different symptoms show up in the different systems of the body that were fundamentally neurologically related. On COVID, you know, and other, you know, medical issues like asthma. It's, you know, it's very common, but there's also things that shouldn't ever be ignored in a medical profession field because those could complicate, you know, the lifespan of an autistic adult or a child. Even though I talked with them about the other symptoms of the autism, my symptoms were brushed off as PTSD. And I can just feel when I walk in, I don't know if it's a safe space for me. And I know, I don't know that it's like a safe space for me, like being neurodivergent, but I also don't know if it's a safe space because of the way that I'm going to be treated and disregarded in terms of like, just go lose weight. I'm terrified to go. I think there's a lot of assumptions being a fat person. And so like if I go get my blood pressure checked or something like that, there's this like quality of, oh, I can't believe that you have normal blood pressure. Like just like the things that people are saying to me, you know, I just recently had a routine mammogram and like what was said to me during that appointment was incredibly inappropriate. When I came to Vermont and, you know, I moved here. So you had to get a new medical home, this old country doctor. Iceman otherwise took a look at me, weighed me and signed me up for like the entire list of every health test you could possibly have. And I'm like, I don't really want to pay for all these, but okay. And then I was like, no, we don't need to do the cholesterol. At least I know that one is fine because I'd had it done recently and I inherited low cholesterol from my dad. And he wouldn't believe me. So we ran the test. And my cholesterol actually had gone up. And I said, well, should we worry because it's gone up six points in a year that's the most it's ever gone up. And he told me to be quiet. And I was like, okay. I couldn't really voice anything back for me because we're trained not to do that. So how is your menstrual cycle? And I was like, fine, great. Well, when was your last cycle or whatever? And it was like, I have no idea. And I immediately like was yelled at. And what they said to me was it's my, I think of, and I started crying. And they said to me that it's my job. Like I always think it's a good sign when people are crying because it's my job to make sure. I have to yell at people to make sure that they're taking care of their health. Going through that time period was super frustrating. Trying to like get attention and go into like all these different specialists and not getting a whole lot of answers. So many of these experiences are me advocating for what I need. It took me five years to get a diagnosis for my autism. My healthcare provider said, well, we can't say you're autistic. Or like, you know, like my chiropractic care was like, no, there's just no way. Like just like not asking me, not curious at all. Like not saying why, what makes you think that you're autistic or how could we find you an autistic specialist to figure out or. To give you some idea how powerful it was. Number one, learning that I was with learning that I was autistic was like a kaleidoscope coming into focus for my entire life that made everything make sense. And I was also diabetic at the time. My blood sugars literally dropped 20 points overnight and stayed down with a self diagnosis of autism. I find that hypocrisy bothers me a great deal in general. And, you know, we're supposedly, you know, a society where we're supposed to take care of ourselves and be informed and make decisions and be self actualized and everything. And even if you're all those things, and in many ways, if you are those things, healthcare isn't designed to work for you. You know, it's sort of designed for you show up and they send you places and put you in little cubbies and folders and if you actually are like, no, that doesn't actually affect me. This over here affects me. Nobody quite knows what to do with you. Doctors I don't think are really taught how to work with patients who don't fit the expectations of, you know, what the profile is. They're trained to make decisions in a very specific way. They need to in order to be really good with their time. Because nobody else lives in your body but you, right? You think after a certain amount of time you would become an expert in it. Yeah. I mean, that's kind of how I look at mine. Yeah. Thanks. Knowing that just because somebody shows up in front of you and may appear normalish enough, but there needs to be given some amount of space or grace to allow for the fact that maybe this person has other things going on that you don't know about. I try very hard to communicate, but then when I get frustrated I become very blunt. And the new doctor I have at least can deal with that. But a lot of people in healthcare are still sort of trained in that, you know, I am in charge and you are here at my whim sort of thing and, you know, we must be respectful. There's so many different layers of those nuances that I'm like, no, I had to wait 45 minutes for you. I could never go back. So in that one moment and I like I went to therapy and like we had, we're starting to get all these strategies of how do I go back? And that's when I found ABB. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Basically I was going through another round of low mood and fatigue and sort of growing hopelessness about the possibility of having a future. And I had exhaust pretty much exhausted mainstream healthcare options or at least the mainstream healthcare options. I was willing to try. And I heard this. I was sitting with this friend. I was sitting with this friend. I was sitting with this friend. I'm a doctor in Montpelier who was out as autistic and starting a medical practice. What do you wish healthcare providers knew about neurodiversity and neurodivergence? It's really like, I want them to know about ABB. I want them to know what Mel has figured out. I want them to know. This connection. Between all of the things. I was waking up because I wasn't breathing because I needed to sleep study. I was waking up because I have dysautonomia because my autonomic nervous system doesn't work correctly. Everyone was putting this on me that like my thoughts were causing these panic attacks. Like I don't know who has panic attack. I wasn't having a thought in the middle of the night. And the way in which Mel has reframed. That it's my fault that I'm not doing something correctly that I am broken, which is I feel like what the healthcare would say, like you're not doing enough. And what I hear Mel saying is no, the medical system isn't doing enough for you. And so that's what I would love to say is that if the medical care system didn't blame people who have. Difference. That instead was curious about that. And we have made some not enough. But some progress over the last 40 years. Learning. To accept people a little bit to give people a little bit more grace, a little bit more space to be themselves. When we can tell. They need it. But if you look like you should fit. And then you don't. People get cranky. And if the cranky people. Are the people that we're relying on to give us the referral. To actually listen. To think about what we're saying and try and put the pieces together. And I think it's just that we aren't knowledge about, because nobody can know all of this stuff. And if they're just grumpy. Because we don't fit what they think. No. For me. I see that, you know, process of the healthcare industry. Is starting to come around and understand neurodivergent. Neurodivergent individuals. And neurodiversity. And neurodiversity around my experience. Like. Asking me, do I understand where the question is coming from? Providing a space that I can feel. Comfortable in and safe in. Helping me make connections back to myself. Not making presumptions about my body, but asking me if like that makes sense. I can't imagine being yelled at. I can't imagine like. Not being cared for. I think the whole first wellness visit that I had with Sierra. I think I bawled the entire like, I just remember. Like my sure being all wet because. I was just couldn't believe the care that I was getting. And I couldn't believe the access. And I didn't even know what I needed. I had zero idea. I had zero idea. I had zero idea. I had zero idea. I had zero idea. I had zero access. And I didn't even know what I needed. I had zero idea and. And the, that was all these different options. And. So it's just so radically different for me. The idea that we can. Just say. This is my access need. to actually look at this problem? What is the actual problem with access? What is the actual problem with communication? What is the actual problem with coverage? Oh, then maybe we can fix some of this shit. I think that's what we need. What I want providers to do across Vermont statewide is to understand the individual needs. If we can understand your needs, we need to be respected in the same way. And for me, it's more about having that work individual participant relationship. Basically, you want the doctor to get to know you better, vice versa, the patient should get to know the doctor better. What helps move things along quicker and make the process more easy for both parties, the doctor, the nurse, and the physician at large. Plus, the individual patient would fail at ease of coming back to those services. So I did the intake, which invited me and then that invited me to share among other things what I care about and also offered to have a provider spend time discussing things I cared about, which really impressed me. And among other things like the possibility of how do you structure an appointment in a way that it's comfortable to you and you feel comfortable. And I thought, things I never thought about as even possibilities of sitting in a doctor's chair with a comfortable blanket or pillows or something like that. And so it was just nice that people thought about things like that. And then I was sitting, when I was sitting in the waiting room for my first appointment, there was this really short book written for kids. And it basically told my life story of losing it. And I remember reading it waiting for my first appointment. So sort of losing it and having these public meltdowns that I was so ashamed of. And it explained those things in terms of the flight, the fight flight response, which I was totally on board with already. So and then there was also something on the wall in the office about polyvagal theory, which I was also totally on board with already and thought that I was impressed that that ABB knew about and was thinking about. And so at that point, I thought, wow, it looks like these people speak my language. And what I want to see forward is, you know, that sense of belonging within the health care field industry, but also understand everybody's access needs is different. We're all different. We're not the same. And for me, it's for about trying to connect that universal connection between each industry or each systems and try to make it a collaborative system where it's cost effective and more efficient, because everybody wins that way if it's more collective than having these barriers or what we call silos that are preventing us from providing those services in the first place. And then and then this is like a sincere attempt a really sincere attempt, the most serious attempt I've ever seen in a medical practice to meet people where they are at to serve everybody well and to leave nobody behind. It's, you know, it's an incredible effort to make groups and meetings and medical care accessible and and interpersonally practically financially. There's the and I love that the practice is really developed in consultation with patients and like we're in these advisory groups and and and invited to join them and and and and and and that and that what happens in the practice after that is informed how the practice develops is informed and driven by what we say in those meetings and basically informed and driven by patient needs. I just didn't know that I would make it and so when I say like I know I'll live a longer life, it's not only do I live a longer life because I have the health care but now I have community and making friends, I feel understood, I feel like all of the all of the things that seem so isolated in the issues with my health are now understood with very simple medications you know like you know it's like it's just changed my relationship to being able to get up in the morning like like limited my limbic response so that I actually can be here right now speaking to you. All of these things that ABB are providing for me and then it's like the other patients are just I learned so much. This is just like so amazing to me there are these amazing group medical visits where Mel and Sierra offer this cutting-edge information and but they and they also allow lots of time for questions and in-depth discussion around areas that the areas that concern us and there's and beyond that you know and and and there's more because there's also an opportunity to meet others in the community who are going through the same or similar things um which then gives you know us the opportunity to learn from each other's experiences and to really value and feel valued by each other and feel a lot less alone and a lot more hopeful. That was awesome. I really just want to begin with just expressing my really profound gratitude to Amy, Linda, Sarah, Jeff and Matthew for sharing for sharing so much of your stories and including the painfulness of so many of your stories because you're not alone. I mean as we as as we watched here the so many people chiming into the chat sharing their versions of traumatic memories of of interactions and I think that what I'm also seeing is that at least those who have shared so far today is that right now we have the lens of like well that interaction is unhelpful that interaction is like not a thing that ought to happen um but like in the in the moment that is not that doesn't it's not always that clear um and I think that um one of the things that that that we hear a lot is when people have these interactions and they it's normalized right it's normalized and if we think back to the conversations of last week around how these things come to be normalized and the the system right because it's it's a story of individual interactions but the context is the system it's the system that is thwarting the individuals and needs to I mean I'd like I'd like to assume unintentional harm what's standing out for folks today about this conversation it almost seems like the believability you know the the doctors realizing that what this patient is really describing is they're really experiencing I'm almost wondering could that be a function of them being burnt out myself because I've run into doctors are burnt out yeah yeah I mean it's it's it's it's like we like we talked about last week right so if you have the system that is if you as a healthcare provider have the system dysregulating you thwarting you left and right and placing toxic expectations um and toxic works in working conditions um it it's a recipe it's a recipe for not having full access to your cortex and the downstream consequences that is that patients are are dismissed invalidated traumatized I forget who it was that said um that they were an expert in their own body and how could they somebody not understand that but it that really resonated with me a lot and um it makes sense that like if you live in your body every day I it's hard to understand why a doctor wouldn't like understand that Linda said it okay thanks yeah and I and I think that intellectually probably probably most do understand that I think that it's the interactions it's the interactions within the context of a dysfunctional system that interfere with that expertise of lived experience being appropriately elevated um and there's you know a lot of um there's a lot of what we call the like the hidden curriculum in medical education where um health training trainees are they're provided a narrative that becomes like part of the culture around like oh well there's a patient with the list there's the patient printed out the thing from WebMD um and like that it's it's it's um it's again got back to the double empathy problem because I think that no healthcare provider wants to be invalidating or dismissing I think it's I think it's unintentional I think it's it's like the the intersection of trauma dysregulation and culture often really quite unhealthy culture Sierra or Gabe is there anything you want to say about that it's okay if not go ahead yeah I think um I think that um medical training is very much trained in um systems and algorithms and looking for the specific picture that you read in textbooks um and as we know people's bodies don't follow textbooks and they don't read textbooks um and so if you don't fit that traditional picture of what providers have learned and been tested over and over again about then um it can be really hard for providers to be able to see that given their training given kind of how they're how we are um how how we're trained and the the basis on so much of medical care I think is also algorithm based and providers sometimes have a really hard time kind of strain off of that um understandably want to be safe for our patients I actually found connected to that that reminds me of something that Zef said in their comments about um acknowledging that doctors are trained in some of these juristics these decision-making heuristics that's not the word that Zef used but the idea of like for efficiency there are these like rules that allow things to be like eliminated because they're less likely and they're they're based on neuro normative presentations there's like a really important piece of physiology missing I can say I can only speak for my own self um I had this um this injury last year that I was like legitimately worried like like more worried than I think you know that I had been in in recent time about what I what I thought I did um and I actually thought about like I thought about seeking health care and I tried to avoid it because it's you know like we all describe anyway um when I finally saw health care and I described what I was experiencing my the response was very much like yeah well you're a young healthy person I'm not I might be a young person but I have all the things and my blood vessels and my connective tissue are different than the average 40 year old connective tissue um and I it's just it's not part of training but so these juristics these you know and and you know Steve's mentioning algorithms as a crutch it's it's it's it's it's um in addition to that it's like you know the the in a world where any one symptom might be attributable to like a gazillion things there needs to be a way of clinical decision making that makes things feel more or less likely um otherwise it would it really would be chaos um but those juristics that are taught and practiced um are incomplete just because someone is young doesn't mean that there are things that are you know eliminated or just because and now in a you know in in a world where we have so many people who have had COVID who now have um you know that this has a trigger for stepwise progression of their neuroimmune conditions we have we have young people with very very complex neuroimmune conditions that um tradition teaching would say would not be what would be expected um I'm going to I'm I'm also going to I'm going to I'm going to pull up um WCAX came to all brains belong and talked about the covered the like the health inequity for autistic adults and this this this what I just said was was was what I talked about there which is that like you know neurodivergent people present in ways that are not what a medical provider might be expecting and so it's again this you know you you you have this expectation you look for it when something I think like Sierra said when something doesn't match not just what you learned about from the textbook but what you think you've seen and rehearsed and overworked even for you know very long careers I think I like the example that I know you have used before Mal of like pain presentation and a lot of times I know um when I worked in healthcare there was a lot of like oh somebody reports 10 out of 10 vain but they have a but really clinically they look like they're in less pain or they have a positive cell phone sign where they're using their phone and not acknowledging that some people especially people with chronic pain use things as regulation mechanisms and might be on their phone as a form of regulating their pain um and also might not show pain the same as somebody who doesn't have chronic pain um and that that assumption that it's all everybody's going to present exactly the same way and then you can rely on that to make decisions um yeah one to tame pain scales are I was just going to add add to that and add to what what mel had said before um and I like how you frame it as conflicting access needs I mean like and then and then throw someone who you know was not trained or taught to really think about speaking for a medical provider think about how um like dysregulating stress can be and how that can change how you interact socially and professionally and if you're like mel was saying you're thwarted by like the system that requires you to like be a certain way and see a certain number of patients every 15 minutes and then you get yourself into a situation where something is unfamiliar I mean just think of it in that context something that's unfamiliar to any anyone is kind of like scary and threatening and we don't that's not part of medical training I mean we get a little bit we get we get a little bit of you know coaching on bedside manner right like how to how to like really make connections with patients and and how to present in like a you know a comforting and caring way but like I would argue that's even like less than we focus on nutrition it's it's it's like a concept like hey you know obviously you need to you need to know how to be like comforting and caring and how to present that way to people um but now we're just going to have you work 80 hours a week and do overnight call and do all of these things and you don't know that you're dysregulated that whole time and um yeah and then it just becomes the norm that's the other thing it's like the the the culturally accepted norm that that providers are are overworked and burnt out and um and our healthcare system puts us in this position and it's like just how it is you know um I think that's the that's probably like the biggest thing is like we just keep working in a broken system I think attempts to try to change it are there but I don't know exactly you know big big bigger bigger systems have have to make bigger change which requires lots of moving parts and I think that's part of the problem too and and you know I I think that changing systems um is is complicated that's why I'm not really very interested in changing systems we do parallel play we we we do the thing that we think our patients need and we are you know we try to be co-creating an experience and there's definitely trade-offs um definitely trade-offs um but it's the changing changing a system is is daunting Christina asks do other countries do better with limiting hours um to um you know I I um there's a there's a a group of physicians um belonging organization called autistic doctors international and um this is this is everywhere this is this systemic dysfunction is everywhere and it's um um it's it's a huge problem um David says so many practices are being bought up by big systems right yeah so so again when we think about dysregulation if you have an access need for autonomy or you had autonomy or agency to make adaptations to meet your own access needs even if you don't have that language or that framework for understanding that's what you're doing and then it's taken from you and um that's really hard um and I think that you know in outside of healthcare I think many people have had the experience of you don't know what something is what role something is contributing in your life until it's gone and you're like oh I guess that thing was doing something that that thing or that practice or that habit or that you know that accommodation or like whatever it was and you're like oh I didn't know I needed that because most people don't grow up talking about their needs um it's like the um I often quote my patient who said I don't know what my needs are I just know they're not met Steve's commenting I like the parallel plane metaphor not change the system but create a parallel system right yeah it's um have an access need for for self-efficacy and um the the idea of that it's actually not in a small in a small little microcosm um you can actually do the things you're trying to do for people with people but large systems large systems have so many more barriers and so many more opportunities for forwarding access needs well and it also I mean I think it um it also depends I mean what what seems to happen with large systems is that oftentimes large systems the the the the primary focus of the large system is how do we keep the large system going which is a different question than how do we continue to how do we respond to the the evolving needs of the population we're serving in the moment and so if the large systems were asking that question then then maybe they would be evolving in a different way but I think but but so much of the time the large systems are like how do we not how do we continue to be a large system and grow our system and that's and when that's your question it's not that that and that's your top priority you you know however you meet patient needs is secondary and or however you meet your service population needs is secondary to be to be coming in sustaining your large system and and I think that's a real difference that um and often with the value of small systems as they start out with like they're but they're free to start out with we are we're addressing this issue this is our concern and what and how and and we want to and we're studying the concern and we want to respond be responsive to the concern thank you sarah and I think two things come to mind based on what you just said so one is I mean isn't that the case with with all systems of power um that powers perpetuated the person the system the entity that has more power stays in power without doing some the hard work of of shifting that um and then the second thing that I might I might add is that like it is it is um like the looming threat of like recreating something that doesn't work is is is is also real um and so you know shifting from you know and I think I I think here at Albright's belong you know the conversation starting to be had around well how are we really ensuring that we are having the impact that we are serving the people in a way that they would define as successful not how we would define as successful and that's that takes some intentionality to it but like that's that's what has to be done otherwise um you know like I uh I have I have a mentor so I've got a business career who you know is trying to teach me about like the history of like evolution of businesses and the different phases things go from like I don't want that for that um I had a big pda response to my history lesson um uh so so you know it's just that um David saying yeah systems exist to perpetuate themselves and grow right there's very little to be done about that parallel systems yeah yeah thank you David and uh Kat says after one visit I got five separate bills right so you know it's it's some that a big system is complex in that way and um I think that what could be done a lot better is transparency right so if so some of these like you know these stories of like oh I got you know these five bills from these five different components and so if how on earth would anyone have a framework for understanding that when that's not what you do that's not your world and so transparency ahead of time of this is what you can expect and it might look and sound ridiculous but this is what it is and then you can decide you can have important consent about whether you want to interact with that um I think that's another really important component um of of shifting away of it's a component that drives dysfunction when you don't have transparency and it's not because and and that's a systems problem I don't think that's an individual healthcare provider problem so when we think about you know on social media um I I often see there's you know uh there's a lot of narrative around around financial incentives you know well you know this healthcare provider did this to me because you know it puts more money in their pocket that's narrative is probably not true in 2023 most of the time um uh most most healthcare systems are hospital owned system owned system dictated most healthcare providers who work for those systems are salaried um so but but that narrative persists and in fact the system works an individual healthcare provider from even knowing how much something costs they don't tell you and I remember as a resident like a trainee being like how much does it cost to order this lab test and my supervisor would be like we don't know like don't like how do you find out and they're like I don't know and I remember like how hard it was to try to find that out and turns out the amount that a test a particular like a particular lab test not just labs but like a particular you know each of the line items the things that gets checked have their own cost and so um the individual like price tag of an individual lab test differs depending on what your insurance situation is um it's just a nightmare so there are systemic barriers even to transparency and transparency of course is the way out of chaos uh Steve says um systems in the best sense compel people to change their behavior there's a lot of resistance to that kind of system a big difference in a system a system versus the system yeah yeah yeah and I think that um one of the things that that Dr. Warzella included in her panel comments last week was just talking about um the system often stigmatizes even people who within it who dissent and that is that's a common theme as well and I don't think that's unique to healthcare I think that like you know the problem child the you know the the the the instigator the you know um the agitator you know that role who questions and demands better um and points out dysfunction that person is often pathologized and thwarted and often ousted when conflicting access needs situations arise um and so just understanding that as a as a framework I think explains a lot of interpersonal and like institutional conflict because it's common speaking of which um next week uh we will be oh Sarare and saying dissent being pathologized yeah so that's that that's that that this is this is what goes on and this is you know when we think about the poor healthcare outcomes for neurodivergent people barriers to healthcare access is is one inadequate knowledge from within the healthcare system of the needs of neurodivergent people that's another but what about everyday life all of the thwarting that goes on that contributes to an autonomic nervous system that is dysregulated drives people into neurodivergent burnout etc which is the topic for next week's brain club we're going to be joined by Annie bro who is a human rights attorney from australia um and disability advocate and we are going to be discussing um she and I are going to be uh uh uh presenting on autistic burnout and employment and the relationship of burnout employment related aspects to burnout and the impact on health so I look forward to seeing you then thanks for coming and thank you again so much to our panelists bye everybody