 All right. Well, welcome everyone. I'm so glad you're all here. I am Mel Hauser. I use she they pronouns and I'm executive director of all brains belong Vermont. For a nonprofit working to improve life for neurodivergent people through medical care, social connection, employment support and neurodiversity related education. Share screen and I'll get us word to tonight's program. All right. So tonight, we are going to be discussing our everything's connected to everything improving the healthcare of autistic and ADHD adults program. And I'll begin by saying that tonight's webinar is for education purposes only, even though we're going to be talking about medical things. Nothing discussed today is intended as medical advice. And for those of you who experience the things that we're going to be talking about today, we encourage you to seek care from your personal medical team. And if that's us, we encourage you to seek care from us like in the usual context of medical care. All right. So, by way of introduction, you are welcome to participate however you are most comfortable so you can have your video on or off. And even if it's on we don't expect anything of you, we certainly don't need to look at the camera or sit still or anything but feel free to fidget, stand, eat, take breaks, whatever, whatever, whatever needs doing. And everyone's welcome here. And a word about communication. Ordinarily, we, we always begin our educational programs by inviting you to communicate however you are most comfortable on muting and using mouth words communicating with devices typing in the chat box gesturing. And that format format is going to be different than the usual brain club because of just the size of the audience this is going to be a lecture based format, more of a like one way kind of learning. So different different than the usual brain club but we have our staff at offerings belong operating the chat box or you're welcome to use it asked your questions in the chat box and we'll, you know we'll do our best to be continuously responding to questions and comments in the chat box. And we'll just ask folks to stay on mute throughout this webinar. In addition to affirming all aspects of identity here at all brains belong it's really important to us that we respect and protect one another's access needs. And I have no idea why we can't see my screen anymore where you can't see the rest of that slide of course that would happen. There we go. Much better. So, if there's anything that need throughout this webinar. Lizzie our education programs coordinator is available you can send a direct message to Lizzie Lizzie are you around wave. And actually, you're waving might not be seen if you don't speak maybe like make a sound so that like speaker view will identify you anyway that's Lizzie hi Lizzie. And send a message to Lizzie if you need anything. Alright, last point of access related topics closed captioning is enabled just need to toggle it on at your end if you'd like to use it so depending on your version of zoom, either clicking the lab transcript closed captioning icon. And if you don't see that try the more dot dot dot and choose show subtitles, you can do the same and choose hide subtitles if you'd like to turn them off. Okay, and that's my visual support to open the chat box so that I can see it if anybody's using it. All right, here goes. Before we begin, I want to give you a content warning of some distressing topics will be discussing in the first 10 minutes of this presentation. We're going to be discussing terrifying health data. Distress in a healthcare environment trauma in a healthcare environment, death, suicide and systemic ableism. Now, unfortunately, this is part of the story of neurodivergent healthcare. So tonight we are going to be discussing barriers to healthcare access and health equity for neurodivergent people. We're going to introduce a free educational resource and show you how to use it and this is a resource that supports patients and clinicians to work through together complex health conditions and discuss some practical strategies for neuro inclusive delivery. So first, by way of introduction since I don't know most of you is hi nice to meet you. So I am a family position, I have a clinical focus on supporting neurodivergent patients of all ages kids adults often multi generational families. And although I have a whole lot of, you know, professional training, most of what I've learned about brains comes from parenting. Luna, Luna six, they will change the world, and they have taught me more about the topics that we will be discussing today than anything I've learned in medical school. This picture on the left was me one week before becoming a parent. There I was a doctor who takes care of babies I thought I knew what I was doing. Yeah, Luna felt otherwise and she let us know in no uncertain terms that her little baby access needs were not being met. She was being thwarted by her environment. The environment was too loud, too bright, everything moved way too quickly. And that was interfering with her living her best little baby self. So my journey to, to learn and unlearn a lot of the things that will be discussing today, mirrors that pattern where we're going to be talking about how there are so many people in our community, whose needs are not met by the defaults of so many systems, including the health care system. And it's that thwarting that interferes with people living their best lives. So my medical education about autism was quite limited. In my school, I had a one hour lecture, it focused on the tryout of impairments, and a wrote list of co-occurring conditions. And it was just like, yeah, you memorize these things, these are the things that people get without, without a curiosity about why, and you'll see how that plays out in my clinical training. It was really a focus on stereotypes, an emphasis on red flags, preventing, treating, and it was also suggested that this was rare. Not rare. And there was a hidden curriculum, the hidden curriculum needs like undercurrents these messages that there's one right way to develop to play to learn to be a person. And of course, we know that that's not true. So part one, the problem, autistic and ADHD patients have poor access to health care. Most 80%. This is a study of adults of autistic adults with difficulty accessing primary medical care. So, and this is a study of people who had established care with primary care practices so it's not like, oh, I can't find a practice to take me no one's taking new patients. I have a practice I just can't access the care. Just less than 70% of untreated health conditions, both autistic and ADHD adults have higher rates of chronic illness. And in a study of 143 primary care physicians in the United States, only 25% were confident with communicating with autistic adults, only 40% confident with making an accurate diagnosis and treatment. Both medical and mental health professionals, the overwhelming majority, rated their ability to provide care to autistic patients, poor to fair. Darity et al in 2020 studied the experiences of autistic adults and identified three main buckets of barriers to care. The environment barriers related to the provider and bear is related to the system. So the environment or health care interactions with the environment related to sensory processing of the different ways that communication access needs are not met. It is perceived by the participants in Darity et al study that the providers have insufficient knowledge and skills to provide medical care to them. And they perceived unhelpful attitudes. And as it relates to the system, there are so many defaults in the health care system, you must pick up the phone to make an appointment, you must fill out the 20 page packet to become a new patient. And there are so many of those defaults that are a mismatch for patients needs. And even in a setting where accommodations are granted. It's, it's still very clear that there's one right way to do the thing, and everyone else's whose brain works differently than that is other. And within the culture of medical education and in the practice of health care, there is a hidden curriculum of that plays out in all kinds of ways. So I even remember in my medical training. A patient would arrive with a with a list, you know, a list of things to talk about with me. And, you know, one of, you know, somebody might might say something in the hallway, oh, there's a patient with a list. As though there were anything wrong with that, like organizing your information and writing I loved that. I love when people bring me things right. They were in training there were also comments like oh well you know that person can't be in pain they're like sending a text message, as though there were a right way to look like you're in pain. It's all these messages that lead to so many people in our community, feeling misunderstood, dismissed, and unable to get their needs met. So when you think about how for the past 25 years the World Health Organization has defined disability, according to the social model disability, where it's not the issues the deficits of the person. The issue is the lack of access in the world. If I were a person with a visible disability like a buyer wheelchair user, and I approached a building that had a ramp. It's less disability than if I approached a building that did not have a ramp. And so it is with invisible disability. It's just that many people don't talk about it that way. But I have said enough. I'm going to instead let you hear from some members of our community. Take it away video one. Think about your experiences trying to access health care. What comes to mind? It's very hard to access health health care. 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 health care, 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 health care experiences. I have medical PTSD. So when I think of the health care 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. 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 they're 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. Oh, 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 a lot of different symptoms show up in the different symptoms of the body that were fundamentally neurologically related. Long COVID, you know, and other, you know, medical issues like asthma. It's, you know, it's very common, but it's also things that should never be ignored in a medical profession field, because those could complicate, you know, the lifespan of an autistic adult or a child. 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. And part of it was, well, maybe this is just something I'm not, maybe I am wrong. But no, it wasn't me this time. Thank you, David. That's not why we're talking about this. That's not why we're talking about this. Here's why we're talking about this. We're talking about this because neurodivergent patients are dying. The average life expectancy for an autistic adult is 36 to 54 years with leading causes being cardiovascular disease and suicide. And adults have a four to nine times increased risk of completed suicide. And that suicide risk is highest in those with lower support needs. Camouflaging or masking pressure to hide autistic traits has been consistently found in research to increase the risk of suicide. And thus it is my professional belief that any interventions that encourage autistic people to mask and hide autistic traits are in fact increasing the risk of suicide. ADHD adults also have increased risk of premature death four times increased risk of premature death. And then I learned this. It was shortly after I learned for the first time at age 37 that I'm autistic. And then I learned that the average life expectancy was like that, like where what I was right then and I was the parent of a four year old at the time. I didn't know that before. And I didn't think that most of my medical colleagues knew that, including people who cared for autistic patients. And it was a hard stop. It was like, how is this possible. This is like, this is completely unacceptable. I quit my perfectly stable job and decided to try to do something about that. All too often neurodivergent people receive the message that we're broken, defective in need of fixing. We know that's far from true. And for the past year and a half, we've been working to change that story. And when we think about how all too often health care is delivered in a vacuum, as though health care is only what goes on in the exam room, when we know that there are so many other aspects to health. Social isolation difficulty accessing education difficulty accessing employment. All of this is part of health. In the first year and a half, we have found a huge demand, a huge unmet need for neurodivergent people in our community for support for connection for a place to show up as their true selves. And we are so grateful we have a circle of supporters who have helped us co create this community health village where people who have felt neglected and misunderstood by the system. They show up as their true selves and experience genuine belonging with people who get it. And in so doing they transform their lives by shifting their own lens for how they see themselves and building trust in a community and imagining the future together a future with hope, because now we know what's possible. I want to tell you about one of our projects. I want to tell you a story about some of the early trends when we first launched our medical practice. So, you know, first and foremost, I'll say that not everyone in our practices neurodivergent, and certainly not everyone, you know, arrives even like thinking about that. What we really have in common here is that their needs are not we're not met by the traditional health care system. But what they also have in common is a pattern, a pattern of intertwined medical conditions conditions that patients have always felt were connected, though they didn't know how, or and there wasn't necessarily like a lens and awareness of like how to really put that together and certainly that was not a lens, you know that was able to be identified. You know a lot of times because of the constraints of the health care system. You know we a lot of times we talk about because we hear from folks who've had very traumatic health care experiences and you know they maybe have stories of individual interactions they've had with health care professionals, but really the health care system is the villain. The health care system gets in the way of clinicians having access to their, you know, like having, you know, having their access needs met, and certainly the health care system often gets in the way of clinicians being able to address multiple medical problems at a time you know it's very hard to like zoom out. You know when when you have 15 minutes to do all the things. And so the problem is that this constellation of intertwined medical conditions that we're going to talk about tonight. Some standard medical management for some parts of this cluster actually make the other parts worse. So, when the health care system forces the clinician to fragment. That is often at an independent barrier to making forward progress. You know so so so we saw this we saw that almost all of our new patients have this constellation, all of these parts of the constellation are known to be, you know connected by research to autism to ADHD to each other. So, you know, and you zoom way out and you see that it's, you know, it's all one pattern that makes all the difference in the world. So to figure out how how to navigate this pattern again because I said that like some of the standard management makes the other part parts worse. We assembled the task force in the spring of 2022 multiple, you know, professionals of different specialties. Community members patients coming to share their lived experience, and we gathered input through focus groups of more than 100 autistic and ADHD people in our community. And we combine what we learned with evidence based research. And by the way, these are some examples of what is included within the constellation of medical conditions commonly impacting autistic and ADHD patients. So, for example, this is not an inclusive list hyper mobility spectrum disorder hyper mobility standalone syndrome pots or dysautonomia mass cell activation disease irritable bowel syndrome fibromyalgia and other pain syndromes sleep disorders like obstructive sleep apnea symptoms like syndrome migraine endometriosis myalgic encephalomyelitis chronic fatigue syndrome post infectious chronic illness like long COVID chronic Lyme differences in the way that folate is and other B vitamins are are utilized metabolic disorders like pre diabetes diabetes. And then there are endocrine problems and problems related to the face and job. And because mostly all the people here have all the things we have been referring to this as all the things. And what we're about to share with you is what we've learned about all the things. But before I do that, we're going to share another video. Okay, video number two. I was in my early 40s I started having a lot more symptoms that I would had related probably at that time to more mental health, then not connecting my mental health to my physical health. I would get these sort of odd mysterious rashes or odd mysterious symptoms, like I would get so sick to the point where I would like get like I've had mono twice or get pneumonia and so then I would have, you know, what would be considered asthma. When I first applied to ABB when I received a list of all the things and all the symptoms in the different bucket of the systems in the body. I couldn't believe I had something in every bucket and something in every system, but I had never put them all together. Once I came into ABB the turnaround for me physically was so quick by understanding that I wasn't having panic attacks in the middle of the night. I actually have dysautonomia that I wasn't lazy because I don't want to go for a walk. It was the fact that I was in tremendous pain and all the things are related. So if I have what I would call now not a panic attack, but I would call like a sympathetic nervous system reaction. That that could trigger my mast cells. So if I went to a family party and I had a difficult interaction and came home and was just set off in terms of my nervous system, you know, shaking feeling buzzing in my body. The next day I could wake up and my whole body would be covered in pain and you know, creates tightness within my muscles, which impacts my hypermobility. Now I'm no longer able to walk. But now, because I know what that is, I go to a group medical visits, I double up on my mast cell medications, which is just like simple medications. And I'm out of pain so much more quickly. And so with support from the organization on autism research, and by the Health Resources and Services Administration of the US Department of Health and Human Services under the autism intervention research network on physical health grant. So we created and recently released a free educational resource to support patients and primary care clinicians to work through these medical conditions together and Lizzie if you can pop the link in the chat that would be awesome. And we'll also leave up a QR code for anybody wants to pull that up on their phones. I'll leave, I'll leave, I'll leave the QR code up while I'm clumsily pulling up a web browser. All right, here we go. So this is the website. And your first, I mean, and so you can read the background. There's some videos presenting the same content as text. So just the information multiple different formats. And so your first decision tree year is resources for individuals resources for medical professionals. I'll start here. Okay. Great. What happens if I shut my video off. Does that make it better. The universe sure does give me lots of opportunities to practice my skills. I don't think this does anything. I don't know why that. Okay. Well, it works now. Okay, so I'm here on the individuals and community members page. You have multiple different ways to learn about the pattern of intertwined medical conditions. You can watch several of our community advisory board members telling their stories. You can watch me giving you a tour of this website. Or you can read a list of symptoms and words you can read a list of medical conditions, and it'll look, it'll look something like this. So we're looking for categories, the categories that are part of this grouping or constellation of intertwined medical conditions. It's not really about the specific diagnosis. It's about the trend. The idea is that in this constellation, folks have multiple buckets. So, you know, it doesn't have to be every bucket. It doesn't have to be a certain number of buckets. It's just a trend. A trend toward, I mean, so there's 12 buckets. And so if you've got like several of these buckets, perhaps this project may apply to you. And then there's the instruction bring this letter to your primary care clinician. And here's the letter. So the idea would be that you might print out this letter and bring it with you bring it with you to your next appointment with your primary care clinician. And, you know, in, in, in our experience, you know, because of the time constraints that the healthcare system imposes on primary care clinicians. In our experience, I think that, you know, we've heard that this letter is most impactful if you just like printed printed and that, you know, hand it over to your, to your PCP during your appointment and like, you know, not with a whole lot of other resources and, you know, just in the letter this way they can access the clinician resources and select out the information that they think is relevant to discuss with you. So that would be our advice on how to use, how to use this. But as far as like empowering patients to really learn about these things and how they're all related. So that's what this, this, this page is about. And so in any of these different forms, you know, just spending spending some time with it and learning learning how this might apply to you, again looking for trends more than it more than the specifics. So let's say that you bring this letter to your primary care clinician or let's say that you are a primary clinic care clinician. So that letter is going to take you to the clinician page. This has a video clip from one of our task force meetings, talking about the project. And, you know, there's, there's a whole lot of information about, you know, when might you use this why is this important, does this apply to only autistic and ADHD patients ? No, it applies to, you know, a much broader population. But this is, this is like dipping your toe in the ocean of this constellation. And so the, the, the main, the main resource on this page is the autistic and ADHD health guide for clinicians. And it walks through with great detail, the evaluation and management of all of all of these components and has hyperlinks to research articles about the relationship between each of these problems and autism and ADHD and to each other. So this is just, just, I'm just giving you a tour of the kinds of information that is available on this educational page. So we invite you to explore it. And we'd love your feedback on, you know, whether in fact it's, it's, it's helpful because we get questions a lot of times. So, you know, we're about, we're about to tell you about our programs here and how, you know, how do we do health care here. But, you know, we get a lot of outreach from folks who are just having a hard time getting their health care needs met for many of the, you know, because of many of the barriers that we've talked about already. And this project is intended as a way of bridging the double empathy problems. So the double empathy problem is our, is, is our theme of the month here at our, so I didn't actually say this so Tuesdays at 6pm Eastern is typically a different kind of program. It's a weekly program called brain club about it's a community education program about everyday brain life things. And so this is taking, this is, this is not a typical brain club but you know we invite you to come back on a different Tuesday for brain club but anyway, brain club all month every month we have a different theme. And this month's theme is the double empathy problem, which is a term coined by autistic social scientists Dr Damien Milton, which says that it's not that there's like one correct way to communicate. It's that when there's a mismatch of worldview and of communication style, that's where misunderstandings happen. And so, you know, in healthcare, the double empathy problem in healthcare, I think is an independent barrier. And this project is aiming to bridge the double empathy problem, providing information for clinicians in the way in which clinicians are trained to approach problems like these. And information in what we're hoping is like meaningful formats for people to learn about their own bodies because truly individual people are the experts in their bodies and their health and that's that's just the way it is. A new way forward. You know when we started out a year and a half ago our premise was just, we all have different brains. We all have different brains that think learn communicate differently. And different brains have different needs. So let's offer healthcare in multiple different ways and give people freedom and choice to pick what works for them. Let's create a model where people feel heard, listen to understood and let's build something where people can have their access needs met so access needs being anything that's required to meaningfully and fully participate in one's environment or community. Everyone has access needs. It's just that for the at least one in five people whose brains work in ways that differ for significantly depart from like the majority of brains or the brains in which society has deemed, you know, typical. Even though that's not really a thing. You know, that's the, you know, neurodivergent people are far less likely to have our access needs met by the defaults of society. So when there's all different types of access needs, and this plays out in all, all kinds of ways and so, you know, to go into these in more detail we invite you to come back to to regular brain flow this is what we talk these are the kind of thing that we talk about a brain plug. So anyway, so so universal design so that is offering everything we're doing in multiple different ways and giving people freedom and choice to pick that's like a core of our model here. And also that we're really removing that arbitrary separation or distinction between health care and the rest of life. So let's stop thinking of physical and mental health is separate. It's just health, and let's stop thinking of healthcare as only medical care medical care that takes place in an exam room like I said before because it's so much more than that. Let's acknowledge that social connection education employment are all fundamentally part of health. Think about a person holistically and think about like what does this person need. And think about all the ways we can support people provide services, make connections, try to move every obstacle out of their way. And along the way, we build a community, a community of people who are learning and healing together. Because health care is community. And what we have learned over the past year and a half like the one of the major reasons that we know anything about all the things is because our community health village. We co learned this together. And that is, that has made all the difference in the world. So like reimagining health care as community that grows together and journeys through this world together and figures out how to, you know, how to get our needs met. How do we do health care here. And so, you know, did you know this could be health care. We've been so proud of our community, and the way in which this community has grown and transformed together to really answer this question like every day is more and more reimagining did you know this could be health care. So I'm going to tell you about our programs. So, our medical programs. So, are essentially managing the medical conditions more common and neurodivergent people as as described in our all the things project. So, all of our patients really co create a customized Medicare experience, where there are as a menu, a menu right when you first become a patient where there's multiple different ways to schedule appointments, different ways of communicating during and between different kinds of executive functioning and sensory supports that are offered to everybody not just people who disclose a disability and request accommodations this is like everybody's offered this even people who don't like, they're not they're not coming really be related to neurodivergence at all. And because like maybe they have long COVID, which is part of all the things and so they come for their long COVID and so it's everyone because universal design benefits everyone. And, as I said, integrating with social connection educational employment support programs because all of that is part of health. So, we have a very non traditional setting. This does not look like any medical office I've been to and we do that by design you know there's so many people with health care trauma. You know you walk into this like healthcare facility and it reminds you of all the other times you've been in healthcare facilities and you know had really not good experiences and so that lives in your body and then you know your limbic system reacts and then you go to your cortex and now it's hard to communicate and it's hard like all of it. So we very intentionally have a non traditional seven. And, you know, I think that the social connection the community building is is is such a crucial part of the healthcare delivery. And so I'll also mention that social connections programs are open to everyone here. Most are virtual and so they're really open to everyone located everywhere we do have in person outdoor COVID safe things for folks who are local but are receiving healthcare here that's open to you to but but we have lots of virtual programs so if you're located in California or wherever you're located we you know we invite you to connect. So, you know, for kids, kid connections is a customized friend matching program and Lizzie if you can pop the link in the chat for that. So kid connections is a program that was created by a child was a child on our junior advisory board I asked, this is a they were eight at the time when we first opened and I said you know how are you going to make kids feel like they belong. And without any hesitation, this child said, you let us do what we love. What, if I'm doing what I love and that kids doing what they love, like, we'll feel like we belong. And that's that's a kid connections is all about it's customized friend matching based on shared interest. So if you have a monotropic focus on dragons we're going to find you another kid loves dragons as much as you do. That's Linus monotropic focused. Anyway, and then we have, you know, locally and virtually sometimes some groups focused around shared interest for adults. We have brain club. So brain club is our as I said our weekly community education program and you know if you're a brain club regular you start to get to know other brain club regulars and build community around that. We also have a number of other adult social connection programs for for folks in our patient community. And this is our kid connections program as I mentioned, and we heard from a parent that their, their child looked up at them and said, So this must be what it feels like to finally have a friend. Social isolation is so harmful for health. So bringing people together to connect with other people is the core of what we do here at all brands belong. At the same time we also work to help the rest of the world appreciate people who think learn and or communicate differently. We also bring education to the community at large, whether that be healthcare practices schools employers, you know, to better understand neurodiversity, and so that people with all types of brains can get their needs met and thrive. So, just to wrap up with our vision here. We are so grateful for our community members are volunteers are supporters. You know together we are making life better for neurodivergent people, and we envision a world where everyone knows that just some brains do it this way and some brains do it that way like my six year old we've been talking about brain since she's two and a half and, you know, truly inclusion begins in toddler hood. And the idea of growing up, knowing that there's no one right way to do anything. And to capture healthcare and community reimagined in this lens. I'm going to play one more video clip. And what I want to see for it is a collaborative system. Everybody wants that way. It's more collective ABB is sort of like, there is this kind of social justice, you know, like, you are not the problem, the problem that we have a world that needs changing. Instead of like, like forcing people to change or like getting in people's face about change the approach is just to show people that it can be done and do it really well. And that I just think that's just such a beautiful, a beautiful model and a beautiful way of like, like creating the world you want to live in and just, anyway, I think that's inspiring. So, so anyway, this, this is, this is about building relationships right so you know if you're new to all brains belong, and you know what you've heard tonight resonates with you, you know, we just invite you to stay connected with us. I'm going to share screen and show you how to do that. So, signing up for our monthly announcement list we like we don't send out a lot of we don't send out a lot of mailings we send out a monthly newsletter it takes it's too much executive functioning to do more than that so anyway. So we send out you know free resources and free programs all of our community programs are free by the way I should have mentioned that earlier. So, and certainly that's that's where that's the best place to find out the next time we do educational events like this. We also have probably the the social media channels that we're most active on our Instagram and LinkedIn. So anyway, we invite you to connect with us that way. And with that, we'll have about 10 minutes. I'm happy to take your questions. Well, there are 54 unread chat messages. I am hoping that. Oh, that's awesome. Okay, I am hoping that if there's any questions that I think probably that the all brains belong team was was a replying along the way maybe. Okay, great. Amazing. Anyway, so I'm happy to. I'm happy, happy to take other questions either in the chat or if you raise your hand. We're usually not a raise your hand kind of organizations but I feel like with 94 people we should probably raise some hands like regular hands you don't need to use zoom hands. Think Sandra Catherine go for it. That took me a second to figure out how to raise my hand I was like where am I going. I guess the biggest one that is on my mind right now and this may not even be the most appropriate forum to ask it is how to scale up what you are doing. So, and let me take a couple steps back because I am entering into health care from a former career as a teacher and the biggest reason for that is because of the students that were my students. And I was teaching them I chose them because they were the quote unquote special needs students. Not realizing that I am a special needs person myself and so I'm a late diagnosed autistic ADHD person and I have been since I started school I'm in nursing school. When I started school, my whole end goal is to become a provider so you know as soon as I get some experience under my belt it's going to be straight into nurse practitioner programs and the whole end goal is was to do what you're doing. You're already doing it. I didn't even know it was here in the States. So, when I stumbled across what you're doing and I checked it out I was like, they're doing exactly what I want to do. And so in my mind I'm like, you know, don't reinvent the wheel, what you're doing is amazing. Like, how do we scale this up how can we bring it to more neuro divergent communities and reach more people. I think that often people, not you but but some people talk about how systems change, you know like we got to do, you know that we have to have the system change from the from the top down. And yet like yeah that'd be nice. Because it's not the only way to change the system. So, you know, systemic change from the ground up that's what we do here. And it's the idea of just, you know, we don't have to wait until we have, you know, health care payment reform and like this that and the other I just started doing this now, like I started this as a volunteer physician and just started doing all the things and it, you know, the community really rallied and the organization grew from there, but it doesn't it doesn't take a lot of resources It doesn't take a lot of time. It takes a group of committed citizens who what's that like Sarah what's that what's what's the What's that it's Margaret Margaret Mead like never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it's the only thing that can I think something ever did. Right. Right. Yeah. Yeah, exactly. Right. I mean that's what we're that's what we're doing here. And so, thank you. Thank you for the question. Oh, cool. Beth, thank you for bringing up the the Stanford neurodiversity summit. We'll, we'll, we're, we're presenting as as a as a panelist at that summit so it's coming up in a couple of weeks. Thank you for. Thank you for sharing the link. We're looking forward to that. Jennifer. Thank you again. I'm a wonderful couple who's here today recommended that I come and it's exactly where I needed to be. I came to one of your 6pm meetings months ago and I'm glad to be back for this special event. My question I filled in all the things online to say I want to be part of this and learn more, but just as the anxious person that I am and wanting to do something. You know, years ago for my daughter, who's 18 pda or autistic and me newly realizing ADHD myself, wanting to get exactly on the bandwagon with getting her doctors who have been pretty open that this is not ideal that we're going to a million different people and there's got to be something going on connecting all these things that are right here. And I think that as soon as possible to start besides giving this letter to every, you know, to the primary care and to the different doctors. Is there anything I can do to be part for our family to be part of your study, Dr. Hauser, so that we're kind of giving you our information and getting help kind of being the givers and the receivers. Yeah, so, so, so you don't you don't you don't even need to trade anything. So all of the resources on the website they're free they're just like freely available so you know you could you could go to the all the things website and like print off that here and bring that to your child's doctor and see if that, you know, um, see if that, like, token of like the, the branch the olive branch of, you know, here, here. This is how how what I've been telling you might be playing out for my child's health. That would be my my suggestion and we'd love to see like how that how that works. I also say that, you know, the, the clinician guide was vetted by a team of primary care physicians who practice in a traditional system. And so it's the idea of it's like it's really presented in a way that, you know, we're hopeful is is going to land the way it needs to or onto physician brains. Because, you know, the, the, the, this is, this is new. You know, I would say that, you know, as a up until two years ago, I was a primary care physician practicing in a traditional system and this pattern I definitely saw it, but it was very much diluted. It was, and so if you don't have a practice that is seeing mostly neurodivergent kids and adults. The pattern doesn't, it doesn't necessarily jump, jump out at you, the way that it does in a more, not to say that a, you know, not to say that our practices, you know, homogenous in any way. But, you know, there's a lot more trends in common. I see there's in I sure I seen the chat there's a question it looks like they're, you know, a mismatch of communication there so masking you're talking about masking camouflaging. So is it's okay and it was a thought that this was masking like COVID. Oh, by the way, I'm going to say this this isn't doing I'm I can't believe I would make it through and you know so any any kind of talk without saying this is that neurodivergent people have higher rates of long COVID. Because of these underlying neuroimmune conditions and tendency toward neuroimmune conditions, aka all the things. And so, for my health equity lens I am very concerned about the like, let's say the COVID conversation but there are no more conversations. So part of neuro inclusion means providing click like safe air to breathe. Because if you can't safely breathe the air, how will you ever feel like you belong. And if you have to choose between your health and school or your health and having a job and like just this is so far from neuro inclusion. So anyway, I'll say that but that's not what Kelly that's not what you meant you meant about the other kind of masking so so the the the masking like the N95 can 95 I am a fan of that kind of masking. The other kind of masking you're referring to is camouflaging like you know hiding ones true self. And for many people. This is involuntary automatic it is a safety mechanism it's what people do to stay safe. And so I. It's a privilege to be in environments where one can unmask. Many people don't have that privilege, because it's simply not safe to show up as their true selves. But I would say, and I think sometimes it's easiest to speak about related to children. You know, we, we, you know the collective we society teaches kids are very early on that like this is how you do the thing. This is what it looks like to be polite. This is what it, you know this is what it looks like to be paying attention, you know if you're not looking at me that means you're not paying attention, even though I have the kind of brain that I actually pay attention better when I'm looking at myself. I process auditorily better when I'm not also getting visual input. Anyway, like, just sort of zooming way out and saying like what are the, the cultural beliefs what are these like neuro normative things that the sweet little loves are like picking up on already. I think that that's what I would say is is very, very important. All right we have time for one more question Jane go for it. Can you hear me. Yeah, go for it. Okay. I have a quick question. Do you have any resources on your site which I just learned about tonight. For to assist adults who have shut down about taking care of them that their physical health, and maybe their emotional and mental health, because they have been dismissed. And their needs haven't been recognized is often being treated that a lot of it's in their head. To bring them back to the abyss of being shut down and just not going to doctors anymore and not doing those things anymore because of their past experiences do you have any resources or suggestions for older adults who had that experience. Thank you for that question. That's so common. That's like so common. So I think that two things come to mind. One is just the idea of shutting down, not taking care of one's health. That's separate from not accessing medical care so I'm going to take, I'm going to actually break your question up into because I have something to say about both parts of that. So I think it's really important to learn about the phenomenon of neurodivergent burnout. So neurodivergent burnout is the very, very common phenomenon characterized by physical mental exhaustion, loss of tolerance to stimuli and loss of skills. This is what happens from chronic toxic stress. This is what happens, living in a world that's not designed to meet your access needs. And in fact, your access needs are forwarded all day long in all these different systems. So, very often, that's actually how many, many late identified neurodivergent adults actually become identified is in the context of burnout. That's certainly how I got my autism diagnosis. So I think that when we see someone shutting down, I might ask myself like, are they in burnout? Because you can't like will someone out of burnout, you can't like talk to them out of burnout, you can't like get them to think their way out of burnout. I think it's burnout is what happens when you're the demands of your life chronically exceed your capacity. And if you have multiple intertwined medical conditions that are not managed, you're actually going to like burn through your capacity a lot sooner. Having all the things, having untreated all the things actually worsens burnout and sets you up to be in burnout also makes it harder to recover from burnout. And burnout worsens all the things. All the things, these are neuroimmune conditions. So a dysregulated autonomic nervous system is going to worsen these health symptoms. So anyway, I don't like that. There is no, so I'm going to say like I didn't have, I didn't tell you a solution. There is no solution. There is no solution that's magic. It's like zooming way out and learning about your access needs. And so I would invite folks to come to Brain Club and learn about their access needs that way. So Brain Club is our free weekly Tuesday program. So, you know, you learn about your access needs, you learn what drains your battery, you learns what charges your battery and you, again, this is, there's all these like intersectional aspects of privilege that come in here. If for example, you have a job that is a forfeit for your access needs and is chronically invalidating you and draining your battery. Well, like it's going to be very hard to get out of burnout. But if you're a kid who's in school and you like don't have your access needs met or you're anyway like all of these things that if you're not addressing and that's why we say that all of this is part of health because like, certainly it is. So that burnout bucket, the other bucket. If I were that was that was like so three minutes ago. I think what you're really asking about is like when people lose, lose faith and trust in the health care system. Yeah, that's that's that that's all they long here is that's those are our people. And so it's, you can't talk people into trust. You just have to be trustworthy. You just have to queue safety. You have to figure out what stresses people out. And you have to not do those things. You have to know what regulates people and makes them feel comfortable and safe and you have to do those things. And so if a health care setting is not doing that it's going to be very hard for a person, particularly who has experienced in validation trauma and healthcare setting it's going to be very hard. And that doesn't mean that that doesn't mean that their health can't improve. I think that connection supports health. And if a person who is shutting down not taking care of themselves can can experience connection. You, we may find that that safety, that safety is queued in a way that allows that person to transform their own life by shifting the way they they understand their themselves understand the way like what's going on for them. And sometimes it is really sometimes you can better understand what's going on for your own self through hearing someone else talk about it, or reading someone talk about this is like why neurodivergent people learn so much about all the things on social media. Social media knows these things are all connected to it's just the healthcare system that like the word hasn't gotten out quite yet extensively. And this is, it's that community building and all these different forums so sorry that was like a super long winded way of answering your really important question. Thanks for the question. Anyway, thank you all thank you all so much for coming tonight and connecting with us and we, we, we hope to stay in touch.