 And Sarah, do you want to introduce yourself? Sure, I'm Sarah. I use she they pronouns and I am the community programs coordinator for all. And I think most of you have been to a brain club before but this one's going to be a little bit different. So this is part of our community education series this brain club we're actually going to spend most of it watching. Dr. Melissa Hauser give a talk to a lot of CVMC Center Medical Centers medical staff and her talk is really focused on cultural competencies competency with neurodivergence and geared towards a medical audience. And I'm sorry my voice is a little bit gone and recovering from COVID this week our household got it. So let me know if you can't hear me at all. But I was just going to start off with a few slides just kind of introducing some of the topics that Mel is going to be talking about. And then at 615 Orca media with their magical ways is going to stream Mel's talk from Microsoft Teams to Zoom. So we'll be able to watch it during the presentation if you have anything you want to ask. Ask Dr. Hauser or ask her anything feel free to put it in the chat we won't have video into Microsoft Teams or sorry. We won't have audio into Microsoft Teams. But if you put it in the chat then we can talk about it after she's done with the presentation. Awesome. Can you guys see the slides that I have up. Okay, perfect. Awesome. So, most of this topic and most of kind of what we wanted. You guys get out of this topic was communicating your access needs in healthcare. We'll talk a little bit about what that means. We are all brains belong. We are a neuro inclusive healthcare and community center and Mel Piliar. And just some ground rules for brain club and for any of our zoom meetings all forms of participation are okay so video on our office fine. We have a lot of information for you to make eye contact, smile, anything like that. And feel free to walk around, move, fidget, take snacks, take breaks. Kids, animals, whatever is coming in that's totally fine. Any type of communication is okay so speak type in the chat box, gesture emoticons reactions, mix and match and everything. And in Mel's presentation we won't have audio in so if you can ask questions in the chat box, and then we can talk about it after, or you can just save your questions and speak it after. And then safety come first so we affirm all aspects of identity here. And we respect and protect ones access needs. So on this note. A lot of times when we're talking about these things we're talking about a lot of healthcare trauma so we're talking about a lot of traumatizing experience. And so if you're talking about something that was traumatizing to you or you experienced as traumatic, just let others know so they can listen if they want or not listen if they don't want. So there's a little content warning and then giving 30 seconds or so people to jump out or meet if they want. And then we are able to do closed captionings, I believe. And this is how you can do it at the bottom of the screen there should be a live transcript, which I'm actually not seeing. Let's see if I can. Are you getting closed captionings. Yeah, I'm getting perfect. Yes. Perfect. Awesome. Thank you. Okay, so the agenda for tonight. We're going to start for the next 10 minutes or so talking about communicating your access needs in a healthcare setting. And then live presentations in central medical center about neuro inclusive healthcare to an audience of healthcare providers. So what is an access need. So I'm not sure what is other people can see these green lines but that's okay. So what is an access needed access need is anything required for somebody to meaningfully and fully participate in one's environment and community. Everyone has access needs. Some people's access needs are easily accepted and easily available some people's art. Do we want to record this or do you think we're good with work that thank you so I will record it. No problem. I am going to. Yeah, I have a question. Yeah. Can I can I turn off the closed captioning. Can I just be able to. Yeah. I've transcript button at the bottom I have an option to hide some titles. Okay. Sometimes depends on what version of zoom that you're using where the option is but usually it's the live transcript. I'll look, I'll look around. Okay, so access needs. So access needs are anything required for anybody to meaningfully fully participate we oftentimes think of access needs as accommodations kids get in school or people need at work. So access needs are really in every part of our life, whether we're talking about healthcare whether we're talking about relationships, whether we're talking about accessing a grocery store. Anything, and everybody has access needs, no matter if they are neuro typical or neuro divergent or anywhere in between. So here's some examples of access needs. Physical access needs so environment mobility or sensory so things like wheelchair ramps, seating options or sensory needs so needing different types of sensory seats to sit in a waiting room for example. There can be emotional access needs people either needing to be able to share certain emotions with each other people need to protect themselves from other people's emotions. Communication access needs is when we see very often so how information is given how we're expected to process it in terms of processing time and speed. And then other so interpersonal and social access needs, which comes up a lot in relationships we've talked about in past brain clubs about how hard it is to have conflicting access needs and relationships, whether we're talking about parent child or whether we're talking about romantic relationships or whatever technological access needs. Whether we're using technology to meet an access need, or an access need is I can't stare at a screen all day. Any of those, and then allergies other medical access needs, which can be really kind of big and far between. Examples of access needs that they frequently ask in their everyday life. I often depending on the situation of course but I often ask people to text me rather than email. That's a really important one. A lot of people. I hate. Sorry. No, that's okay. I'm deaf in my right ear. And so I often have to ask to reposition folks either in a room or in a walking capacity to be on the right side in order to be able to hear. That's a really great example of one. I can say one that I use a lot is meeting to be able to have something to fidget with whether that's somebody giving me something to fidget with or just being allowed to use one of my own fidgets in a space. So if you're thinking about access needs in terms of the health care settings so communicating what your access needs are to health care providers whether we're talking about if you are a patient in the hospital a primary patient in like primary care specialist or if you're doing any other type of medical setting are there certain things that you feel like you have been able to ask for access needs have been easy to ask for other certain things that have been hard to ask for I'd love to just hear anybody's experiences of access needs and specifically in health care. I think, well, one of my access needs and I just really came to it recently was being comfortable with asking questions and challenging and challenging the doctor's opinions. That's been huge for me stopping a procedure that was painful. I guess participating and making it patient centered instead of physician centered. Absolutely. Yeah, for me it was the thing that's really key is being able to write out and send early in what I'm going to talk about because it gives me time to gather my thoughts. It helps a lot. That's a really good one. And then in the chat we have. Emily saying I can't be in heat because of pot so I asked to meet people indoors are in shade on a cool day. That's a really great example and I asked to have a support person with me so I can have help communicating with people I'm uncomfortable with. This is the only ask that is usually accepted. Absolutely. Yeah, I think one thing that we see a lot with healthcare settings is that there's certain access needs like bringing a support person like physical access needs in terms of mobility wheelchair ramps and that type of stuff interpreter services there's certain ones that healthcare settings are used to and do day in and day out. And then they often don't accept any other ones or aren't kind of willing to discuss other ones again that's not every healthcare setting. But similar to kind of any setting it's rain rules of the world that oh everybody should be able to come and sit outside on a nice sunny day everybody should be able to communicate what's been happening with their health day of in the visit during that stressful time and not write it out first. And that's not totally feasible for everybody. The team that was working on me that I was and I was in too much pain. They were so confused. When I told them to stop. It was, I said, step away from my body. And they said, what. We've got a schedule to keep. And I said, well, I don't. It's a really good point Matt that like in healthcare settings you always have a saying what's happening to your body and having that like stop and step away from my body I think that's a really great. That's a really great script to use to like actually get people to like stop and take you seriously I wonder if anybody else has scripts that they've used or other ways that they've been able to get access needs met in settings, specifically healthcare settings or any tips and tricks for other people who may be having a hard time asking for those. And then chat, creating collaborative settings having deadlines to help to share work and communicate effectively. That's a really good one. Sarah said, in response to Matt I learned how to do that in childbirth as well out of getting access needs very clearly absolutely. And that's something we talked about in childbirth having a birthing plan and having a plan of what you want before going in, and then also having like backup plans and contingency plans as like what if this doesn't work. And it said something we talked about with childbirth and not much else not any other procedures. And yeah, and whether that's, I'm not sure why that is specifically, but I think that's a really good point Sarah that that's somewhere that people I think are a little bit more comfortable or at least, maybe not more comfortable but more used to getting access needs. Laura in the chat says in childbirth we also talked about having to do lower support person who is fully informed about your birth plan, who can help help advocate for you if you become unable to communicate your own needs, absolutely. Yeah. And I think, I mean I certainly see that in, I worked in hospice for a long time and I certainly see that in hospice and people talking about the ways they want the kind of end of their life to go. Whether we're talking about advanced directives or kind of whatever having that plan ahead of time. And that can be really helpful for lots of places. And Sarah in the chat says I think sometimes we get great practicing communication access needs on behalf of our children, then we can turn around and apply it to ourselves absolutely thanks to really good point Sarah. I think that we talk day in and day out about access needs in school, and kids being able to have digit chairs and kids being able to take breaks and I know I live next to a middle school and it's very common for breaks to be walk around and seeing kids walk around my house because they need that break they need that time to have some physical sensory input. And we talk about that with kids all the time and then we forget that these kids grow into adults and have the same access needs often. And this is inspired me at some point when I, when I get a minute to create a plan and communicate it to my doctor for the next time my shunt fails. I'm a neurosurgeon so I've been at UVM because when I, by the time I realized something is wrong. I'm on my way to dying so it's always termed an emergency, and I get transported to the hospital and it would be so helpful because I know the medications I react poorly to. I know medications I prefer. I know medications I need all these different things and preferences and all these things and I can, I can write them down and create my own shunt failure plan. I really love that idea Matt, I think having having those things right now, especially if you have a chronic illness where you know that there are likely going to be times when this thing happens again. I don't know what your hand raised you want to unmute and try and we may be cut off at some point to listen to those presentations. Yeah, well, you know, one of the things that I have anxiety about and I've never needed hospital treatment, like for many years but as someone with issues with my body I'm a tans woman, autistic tans woman and basically there's this. Like they've like I'm okay to understand terms of medical for medical context in a medical context, but there've been cases where they've spoken about bringing body cameras in for clinical like nurses. And I find myself wondering will they have will they have them in, in treatment rooms, and I've heard paramedics also. And this is, I feel there's this culture where basically they say that it's to tackle violence. And it feels like there's this culture that if you ask questions about it or if you oppose these measures then you're against, then you're against safety for staff and that's not the case. And it's like I'm afraid to to ask questions for fear of being accused of things like of not caring and and yet at the same time, it might prevent me from going to the hospital or or calling an ambulance. And it might deter me and like what people don't get is that it's dangerous putting people in that position like where they're unsure about. And yeah I guess sort of it would be. I'd like to get to a space where where sort of it's safe for people to to ask questions and. I think that's a really great plan thanks for sharing me I think that it's healthcare settings are really hard to ask those questions and I think a lot of it is because of that. There's that inherent kind of hierarchy there's that inherent power difference between a provider or healthcare worker and a patient. Especially when people aren't used to people communicating for their access needs. You can be met with a lot of pushback absolutely. And Laura says in the chat as a nurse who has been assaulted many times in many different ways this is a huge issue of conflicting access needs. Absolutely. Yeah, there's a. Yeah, there's access needs of the healthcare providers as well we talked about the kind of conflicting access needs is access needs of the people who are working with people who you're trying to communicate your access needs to as well. It looks like we've got. All right, let me just ask, because I forgot how in in teams, I can't see you when I'm in my own screen. Has Orca media rejoined the participants. Yes, they have. Oh, perfect. All right. Here we go. Recording in progress. Now I really can't see you for real because now I'm in full screen mode so like just unmute if you want to get my attention. All right, so, again, I'm really excited to be here with so many people I haven't seen in such a long time. And as Chris said, we're going to be talking about neuro inclusive healthcare tonight. And while I have no financial disclosures, I'm first going to tell you about something super cool before we start. So thanks to a partnership with Orca media to nonprofit organization Montpelier that uses super fancy amazing telecommunications technology to promote community engagement. Right now, my organization all brains belong is holding our weekly community education program called brain club. And thanks to Orca media, we are now joined by brain club participants, which is a group of community members, patients, some interdisciplinary healthcare providers that are that gather week to week. We're now talking about everyday brain life things and so thank you to to Chris and Christine and Alicia for collaborating to make this super cool thing possible where we have one way live stream of this presentation to bring up so hello brain club participants. So what we're talking about at some of our community education programs is something called a double empathy problem. And the double empathy problem, which was first named by an autistic social scientist in the UK named Dr. Damian Milton talks about how rather than to think about one normal correct way of communicating. In research studies are out repeatedly over the past 10 years it's been shown that when autistic people speak to one another communicate to one another on that communication is efficient and not particularly error prone. So this does neuro typical participants again efficient communication, but in both directions. There are communication breakdowns when people have a mismatch of worldview and communication style. So often what we do at our brain club series as we talk about bridging the double empathy problem. So, and we talk about that in all different settings in relationships, romantic relationships, family relationships, employment relationships and here what we will be talking about the health care relationships that that we all are in with autistic or otherwise neurodivergent patients. Often, the double empathy problem is a framework for understanding sometimes when it does not go well. And what I what I will share about that is that, you know, having trained and practiced, you know, for past decade in in the system, like the same system that most of you all trained in, you know, I've had to, I definitely did not intuitively have neuro cultural competence. And in fact, it was not until my experience as a parent that first prompted me to recognize that to recognize the limitations of my training and the way I saw the world as a doctor. Because there I am on the left, I remember it was a picture was taken shortly after I started, you know, working at CVMC and met many of you for the first time there I was like, a week before I gave birth to Luna. There's, and, you know, here I was, Dr. Keeps takes her patience, thought I would knew what I was doing. But then, you know, there's Luna on the right and Luna made it clear in no uncertain terms that the framework of my medical training, the framework of my thinking as a human were like fundamentally inadequate to meet her needs. She made it clear in no uncertain terms that it was the environment that was causing trouble. The world was too bright, too loud, moved way too fast. And the environment was getting in the way of Luna being her best little baby self. That's Luna now. Luna is the world's wisest five year old. And Luna has taught me so much, and has made me a better human, and certainly a better doctor. So, sorry. So, as Chris said, what I do now is I not exclusively but the overwhelming majority of my patients are neurodivergent kids and adults often multi generational families and what that what that looks like. And I'll tell you a little bit more about my nonprofit organization at the end. So what we're really talking about is that one in five people learns, thinks and or communicates differently than the so called typical brain. And I'm not really sure there is a typical brain. We all exist on this continuum, in the infinite number of ways in which brains brains work we all exist on a, on a, on big continuum. But if we're really thinking about one in five brains that substantially departs from the, the majority of brains or the, the way of doing things that has been, you know, normed as the most desirable way of doing things by, you know, like this society in this day and time. So, we're going to talk about how those one in five people, unfortunately, in a lot of instances do not get very good health care. And we're going to look at some of the outcomes and the reasons for that. And I started referring to this as a neuro cultural competency, because just like other forms of cultural competency. There's like things that we can do by better understanding this lens. Because this, this, this, I think can bridge that gap for the health care outcomes, the health inequities that I will soon tell you about. We'll look at the specific systemic barriers to health care access for neurodivergent patients. And really, take a look at the social model of disability where just as I was saying that Luna's environment was a mismatch for her needs. So it is for so many of our patients. And we'll look at some concrete specific actionable steps but hopefully it can you can just start implementing wherever you are in all this many settings that you practice in. Cultural competency. So, you know, when I, as, as sure most of us have have received all kinds of cultural competency training in our careers but the for those those joining us. My brain club I'll just include this that the American Hospital Association defines cultural competency as the ability to provide care to patients of diverse values beliefs and behaviors and tailoring to meet patients needs. And this please out in health care provider behaviors attitudes policies, everything. And when we look at approaches to reducing health disparities. Cultural competency is an important step. So I'm going to before I get into some we're going to look at the current state of affairs for neurodivergent health. I'm going to play a quick video clip. I hope this works. This is Dr Rachel Lovens who is an internist hospitalist faculty at Dartmouth that I'm a member of my board of directors at all brains belong and this this recording comes from a previous brain club about what what what her experience was when she first started learning about these issues after, you know, having, you know, been in practice for like three decades and having never never heard about this before. Let me know if this, if you can't hear this or if it's in some way not working. Well, I know this is something I think about all the time when we talk. Because I because I have learned so much from you so much. And yeah, so just to get that part out. I think that learning about this learning about about neurodiversity as a grown up physician has been practicing for a long time. Or just as a person really more as a person to change my perspective so that I can identify different patterns and see it less as, oh my God, this person is driving me crazy because they're not like me. But like this person's brain works differently than me and that has many benefits and and it causes me frustration. But if I can understand it better, then I can then two things happen. I get much less frustrated. I also learned what how to appreciate I learned what I'm getting from this other person who's trying to stick with me and much more patient. And, you know, just aids in communication, which is the communication is sort of everything in the universe. But in my mind, communication is all thanks. So, without further ado, we'll get into our part one. So, let's talk about the current state of affairs for neurodiverging health. Otherwise known as what I didn't learn in medical training. Autistic adults and of course, neurodivergency is a broader umbrella but we'll take a look at autism to start. Autistic adults have core access to health care. So in a study of over 1000 autistic adults who had established primary care relationships. 80% almost had difficulty accessing primary care, almost 70% reported untreated physical and mental health conditions. This is in a study of Medicaid claims, looking at four to five times the outpatient cost six times the emergency department cost twice prescription drug use. And, despite 73% of autistic adults in this study reporting that it was important to them to have a good relationship with a PCP only about a third actually did. And in fact, almost 40% don't even tell their PCP that they're autistic, specifically because they are fear of judgment. And not surprisingly, autistic adults have lower access to preventive care. Dardi et al described really helpful study that greatly informed the design of my current practice, looked at instant extensive barriers to care and broke it down into three bits. The environment and healthcare interactions, which includes sensory processing aspects in the environment, lights, the ticking clock like things and specific communication challenges within the healthcare environment. Looking at the system where there's, you know, there's so in society right there's so many things that are offered in the default way, you know, and, and, you know, it's not just healthcare but if you look at healthcare you know there's a lot of defaults in healthcare where you know, you must pick up the phone to make an appointment you must fill out the 20 page packet to become a new patient. And in any time you have a default, and someone's brain doesn't that it doesn't do it in that way by default, they're going to feel other. And so while we, you know, we certainly being able to offer accommodations is is great we want to be able to do that, but they're still going to be other because they weren't able to access it, but default way. There's also the element of, you know, we talked about the hidden curriculum in medical education right like I remember, even as a medical student. I remember things like you know my attendings would comment like oh, you know they say they've got 10 out of 10 pain but they've got the positive cell phone sign, you know, as though someone's able to use a cell phone they're not in pain, or like, you know, just kind of thinking about that but there's one default way that someone might present in that that means something. But what I thought really interesting about this study was that autistic adult patients described specifically that they're perceiving that their health care providers have insufficient knowledge and insufficient skills to take care of them. Particularly, unhelpful attitudes that they are able to pick up from their health care providers. And this was that well, while while this study was looking at primary care experiences specifically. I would hypothesize that that that what what is described here plays out in all different types of health care interactions. I don't know why we're talking about this. We're talking about this because autistic patients are dying. The average life expectancy for an autistic adult 36 to 54 years. When I learned that I quit my job started my nonprofit organization. And I was mortified that I didn't know that I'm going to give a content warning for suicide. And just if anyone, which is why everyone to be able to listen to this in with with informed consent. And I'll, I'll, I'll just ask that my staff type into the chat box when when I'm done after my next slide. The leading causes of death for autistic people are premature cardiovascular disease and suicide. I'll come back to the party you asked the disease component in later on in the talk. But specific as it relates to suicide, autistic adults have four to nine times increased risk of suicide. With almost seven, you know, 72% of autistic adults having had a history of suicidal ideation. And then depending on you know, a variety of wide range of studies looking at this anywhere from a seven to 47% attempting suicide. And interestingly, the suicide risk is higher completed suicide risk is higher in those with lower support needs. With research further identifying that pressure to camouflage or mask in some way not be not not be able to show up as one's true self is independently associated with an increased risk of completed suicide. Forcing to comply with the default, the messages explicitly and implicitly that there's one correct way of being a person end of content warning. But I learned about about autism and medical school. I had a one hour lecture focusing on the triad of impairments and a root list of co-occurring conditions. And with out out in my court ships and certainly out in residency my development of pediatric training, you know really limited the stereotypes with an emphasis on red flags and prevention and emphasis on treating behaviors. And I had the idea that this was rare. You know you're there autistic or you're not and that. But this was, you know, not very common. And, as I said before, when, when, when a person, you know you're going to see a little kid receives the message that there is one correct right way to develop play to learn, otherwise be a human. That stigma has a profound impact. And what I didn't learn in medical school was this, I didn't learn anything about the way that narrative was constructed. When we look at the way that in 1943 a description of lack of social interest obsessive insistence on sameness. And when you follow that through the the historical shame here. That is not that different really from from how even in DSM five. And the stereotypes are really still illustrated. And when we think about the 1960s and 70s with Eva Lova first developing applied behavioral analysis. That is still the go to mainstream treatment for sweet little loves. And this is part two of our Lova side might also mention is the developer of gay conversion therapy in 2022. This comes. This is shared with permission from family. And by an evaluator in 2022 that the seven year old does not come across as clinically having the separate inwardly focused quality path and mnemonic of the disorder. He interacts significantly and seamlessly with parents and demonstrates empathy reports present. There go. He is not autistic. So when you're only trained in stereotypes. I'm not surprising that Zerbo et al in 2015. Fascinating. So yeah, but at Kaiser that less than 10% of primary care physicians would suspect autism if the patient volunteers information shows interesting people discusses emotions and can see the whole picture. So here's what one of one of my patients would like to share. I know what you're probably thinking. You don't really look autistic. You're speaking to me, you're making eye contact or having a conversation. You're definitely not autistic. And probably about five months ago, I would have agreed with you. I recently got my autism and my ADHD diagnosis back in January of this year. My entire life has changed, to be honest. Prior to this, I didn't realize that a lot of the struggles I was having in my day to day life were pretty much all connected to autism and nobody had screened me for autism. Nobody had ever indicated that I might be autistic. Some of who is autistic, I thought of like an honorable young boy who was kind of just lost in his own head, not super connected to his surroundings. And that is one way that autism can present. Yes. However, autism is not a linear spectrum. There are many different facets of your life that it can impact from motor skills to executive functioning, the language to social skills. To a thorough section, literally every aspect of your life. So it's having learned that I'm autistic. My life keeps on which percents. A lot of the behaviors that I find as a child, continuing up into adulthood, the way I proceed into the world, they are all impacted by autism. How much energy I exerted, social interactions and masking. All the internalized ableism that I am working so hard now to try to dismantle. I'm a late diagnosed autistic. I got my diagnosis at 31 years old. So all of the, the coping mechanisms and the skills they built up to mask my autistic traits. I'm now having to, I feel like it's very, very important for providers to please be aware that autism. Looks different for everybody. It's like, I'm trying to rotate some of these conversations and having conversations about neurodivergency. There are so many more people in your life who are neurodivergent than you probably realize. All right. Thank you so much. Take care guys. All right. So, the thing is, that's not all we're missing. We're seeing these folks. And, you know, if, if, if certainly if we, if we know that we are taking care of an autistic patient, we may know about the things that are associated with autism. But that's not how the people come in. They come in with their, with, with, with their medical problems. This slide is intentionally busy. And to some of us, but, you know, if you know that your patients autistic and you may know that these, you know, things like obstructive sleep apnea, autonomic dysfunction hyper mobility, you may know that some of these things are associated with autism, but they don't, they don't, they don't, they don't come in. They come in with, you know, all of the medically undifferentiated symptoms. They come in with their chronic allergies, their multi organ immune system stuff. They come in with their sleep stuff. They come in with their GI stuff, their nervous system stuff, their connective tissue stuff, their vitamin absorption stuff, their face dental jaw stuff. And when you zoom way out, the nervous system goes everywhere. And since everything's connected to everything, it's one of my, I included this, one of my patients came up with this, that was so fascinating. If you pull the wrong string, you can make the knot tighter like a ball of yarn. So when this, this is, we did some internal quality improvement stuff in my practice. This is, we've got about 100 more people in the practice than when we did this last, but of our first 140 patients, 70% had this cluster. And this is stuff I didn't know about. I didn't, I didn't know that neurodivergent people had this predicted pattern of anatomical airway differences. I didn't know that for those who describe transient brain fog, it's actually correlated with like objective relative like 93% of a young healthy person, 20s. And that standard management of some of the components of this cluster worsens the others. People with chronic pain on a muscle relaxing turns out it's making their floppy connective tissue in their airway floppier. When a dopamine bound brain ends up on an anti-psychotic, that doesn't work out very well. When someone is, you know, doing some compression therapy for their, their dysautonomia or their hypermobility, if they also have blood flow differences, we're seeing they're scheming. So patients, you know, the experience of the patients in this community are that having a unified narrative to understand their health. That they don't have 45 different things, quote, wrong, has made a profound difference in their lives. And in fact, if you're interested, we have an, my nonprofit organizational brains belong has a task force. We sometimes refer to this autoimmune multi-organ system cluster as all the things because all the patients here have all the things. Where once a month we have an interprofessional collaboration of clinicians, researchers, patients who come and talk through best practices and contraindications. And I'd love, love for you to join. And in fact, in collaboration with my colleague Dr. Laura Lewis at UVM, we are, we have a community research project. And in particular, when I think about number number three in the developing of a management support tool for primary care. We would love, love to collaborate with folks of all specialties to talk through these different parts of how of how this please out for autistic physiology. So please reach out if, if you're interested. And for next I'm going to shift to part two of this talk on the lens and language of neuro cultural competency. So, as I, as I said before, you know, we really all exist on this continuum because we all have different brains with different ways of sensing processing thinking communicating learning all the things. And we all have unique patterns of strengths and challenges. You know, when we think about the, you know, the DSM five diagnostics for autism, for example, really, those are those are autistic dysregulation behaviors. That is when, when, when a nervous system becomes so dysregulated, we may see these more extreme presentations. But in day to day life, truly just we all do things differently. And I like this, I like this cartoon I use this a lot with kids. But I think it's helpful for adults to with with thinking about how like we all different phones ring you don't try to have the iPhone run the Samsung apps. It works very well. Let's do it differently. Or my, my, my colleague Sierra Miller. It talks about having like a map brain like brain in a PC world. So, you know, when we think about, you know, yeah, for sure, they're, they're impairments sure real impairments when we think about disability. Disability is on a is relative, you know, rather than the medical model, where it's all about the deficiencies within the individual. The World Health Organization for the past 20 years has defined disability according to the social model where depending on the barriers to access for meaningful participation in the world. A person is going to have more or less disability. So if I'm a wheelchair user, and I approach a building that has a ramp, I'm going to have less disability than if I approach a building that does not have a rent. And when it comes to invisible disabilities, it may not be as clear as in that example with the ramp. But this is how it's playing out all the day. So, lens and language count as barriers to access and inclusion. So when we think about some of the terms that are commonly used in the healthcare system, the neurodivergent community met many, many members of the neurodivergent community find these terms triggering and offensive. And in fact, you've heard me refer several times using identity first autistic person. Despite the way I was trained in my in my medical training. And it's because that for the majority of autistic adults, autism is experienced as an important part of identity. So when people get the message, both directly and indirectly that their way of thinking behaving communicating is fundamentally wrong, broken and needs changing or fixing. It has a profound impact on their interactions in the world. And when we think about nervous system regulation and borrowing this model from the book local brain child by Dr. Dan Siegel Dr. Tina P. Brason, upstairs brain downstairs brain. When downstairs brain is triggered by day to day interactions within the healthcare system interactions with us, not going to be able to have access to upstairs brain. And what we may see this playing out we might see you know overt fight or flight behaviors, but we might see something else this regulation can present so much more broadly than that present as profound fatigue, a lot of ideas, excessive people pleasing, blazing over or, I don't know. And when we think about sensory processing, in addition to you know the five senses that you know we may we may think about with the other four senses. We may think about proprioception, vestibular and care reception sensation of internal body signals, one that I think that that I don't know anything about until recently was neuroception. All of us are monitoring the environment safe, not safe. And when someone is wired such to be more sensitive to threat, whether that is just how how how they're wired or acquired trauma physiology, have a profound impact on interactions. So, when we think about environmental things within healthcare system that may be because again those I'll go back a second, these sensory systems are not separate they all interact and we all, we all differ in our sensory processing and that made it's not just going to different person but it may differ within a single person over over lifetime or even just context dependent, you know, if, you know, a, if I have, I've eaten, I'm well rested, I drink water, and someone's like clicking their pen, you know, I'll hear them but I may not like fully flip my lid. If I have not met my other physiologically, you know, that sound may sound like somebody stabbing me in the brain with a screwdriver, because all these senses interact. And when we think about how this plays out for patients in our environments, whether that be an inpatient setting or outpatient light sound temperature the smells, the opportunities for movement. If you have the kind of brain that actually processes auditory information better when moving and the default is to sit in the chair. You know, for how long the appointment is, well, maybe that person didn't necessarily encode anything we said. Maybe the specifics of how that communication is going is also playing out in a way that is not meeting the person's needs. I remember in medical school you were trained, you know, open-ended questions. That's the way you do it. Well, there are some brains that neuroceptive system says no. You know, this, this, we're turning questions of any kind into statements. Sometimes yields more information. Providing choices, menus, providing multiple different ways to provide information. Maybe it's the previous planning process. Maybe it's to be able to write stuff ahead of time and show up even though, you know, harking back to what I said about the hidden curriculum. I remember being, you know, I'd have, I'd have attendings, you know, refer, or actually mostly it was like a dysregulated residence would comment about the patient with the list as though that meant something as opposed to this is a person who organizes information and writing. Processing time, visual supports to anchor attention and having, you know, as I said before, options for communicating asynchronously, whether that being able to, you know, send emails or in some way pre-visit planning that's not during, you know, that 15-minute encounter. Or the, you know, the 15 minutes around. So when we think about executive functions, like high level cortical functions, right, like this, you can think about how this, how everything, everything in daily life relies heavily on these. And so this impacts everything in healthcare interactions. Think about patients with frequently missed appointments, people, you know, not following through with recommendations, medication errors, the perception of time, like I think about like, you know, someone who, you know, a conversation that seems to be going on forever. Well, there are lots of brains who don't perceive time in the same way and really are very much supported by external executive functioning supports for the passing of time. And I can't not include this. Neurodivergent people are at higher risk of long COVID, which relates to the autoimmune picture that I mentioned before. You know, long COVID is all the things picked off by COVID. And so as I said earlier, you know, 70% of our medical practice has long COVID or long COVID like autoimmune symptoms. It's like a lot of people. This is, I didn't know this is how I was going to be spending my whole day, but this is how I spend my whole day. So as I'm going to leave plenty of time for questions. But what could this reimagining what's possible. I found myself last year wondering, you know, because I then had a four year old. And my four year old had has grown up in a neurodiversity affirming household. And she's always been taught that some brains do this, some brains do that. And like, there's not a right brain. And so, you know, we just we talk about our brains a lot in this house. I mean, me and now her, I don't know that my husband talks about brains very much. But I, what could be possible if all kids grew up that way, because inclusion begins in toddler hood preschool the leadest. As I said before, anytime there is a default, everything else is othered. So therefore, anytime there's a default, there's no inclusion, because inclusion is perceived belonging. And if you feel like other, not going to feel like you belong. So what we do here at all brains belong isn't very complicated, we just ask people what they need, and we're small enough to be able to do what they say. And starting with literature on big picture some of which I've shared today of what the broader population is looking for. We designed our little system. And when I really think about how I was spending my time in a traditional healthcare setting. So much of it was helping people problem solve school employment, how to make friends, how to deal with the systemic ableism, or the widespread belief that it is superior to be able to do the thing and not really to do anything for the neurodivergent community, we have to do everything, because it's everything for this place out. We began with a community forum, bringing bringing folks together and asking them what inclusion meant to them. And then we did it. So all brains belong, offers not only healthcare, but educational and social connection opportunities where we try not to have any defaults, where it's really thinking about connection as the pathway to health. And, as I said, trying to not have defaults, all patients, not just those who disclose any certain diagnoses or any particular disabilities, everybody gets a customized menu, where they have multiple different ways to schedule appointments, communicate with us during and between appointments, censoring executive functioning supports, and if they if they choose to, to be to have integration into our community programs. One of the community programs, me health programs that that that we've done, done this four times since since the winter, including a couple weeks ago on the State House lawn we're doing again on the 24th of September. A inclusive design for COVID vaccination clinic, where everybody six months and older, everybody gets this menu to be able to pick, you know, drive up in your car, or an outdoor slide in the winter they headed to. They pick their furniture they pick their lighting they pick their sensory tools they pick what we talk about they pick music in the background. It's just like a totally customized experience. These are some some pictures. It's not the thought I remember. Oh, that's a lot I remember. I wanted to have a couple pictures from from from the outdoors event a couple weeks ago. I'm very proud of those are my medical students learning about universal design and it. There's some pretty happy people getting vaccinated. We also have social programs for kids and adults brain club I mentioned going on right now. Hello brain club participants and kid connections which is a customized matchmaking kids age three to 17. We make custom matches based on shared interests and communication styles. Because everybody deserves to have relationships where we can shop as our true selves. That's funny. Anyway, this is an example of a virtual program that we held a couple months ago we had 40 kids age three to seven. We had facilitated breakout rooms where stuffies communicated together and then they all came together for a stuffy dance party. And they had different types of visual support to know what to expect. This is our weekly free community education program where we talk about all different kinds of everyday life stuff. Next week about communicating access means at work and all different all different topics, and we do a wide range of audiences. We also have trainings and consultations about becoming more neuro inclusive, including that this this and those trainings those trainings are offered free for Vermont healthcare providers and their practices. So, um, that's that we got plenty of time for questions. I'm seeing in the chat. I see the speaker but no sound from 40 minutes ago. No, you've had sound. Oh, thank goodness. That was going to be completely embarrassing. Does anyone have any questions for Dr. Hauser, Dr. Miriam had to sign off and go to bed because he's in Scotland and was totally almost midnight. All right, I don't see any questions. Dr. Hauser, I want to thank you for a very informative and and and really fascinating talk. I just appreciated having you join us and talk from a perspective that we don't often hear and it sounds like you're doing some pretty amazing work. Thank you very much. Thank you very much. Thanks for having me.