 Welcome everyone to our second annual presentation of shifting the autism narrative, the impact of stigma on health. And for those of you who are like what but but I thought I was at brain club, you are brain club, it's a two in one. So this is not a typical brain club. Here we are for our weekly community conversation on everyday brain life. But in the setting of autism acceptance month, where there's so much talking about things that don't actually improve autistic health and well being, we decided to to synchronize this event with brain club. Before we get started by way of introduction and just orientation ground housekeeping if you will close captioning is enabled, you just have to toggle it on. If you would like to use it. And so depending on your version of zoom either if you look for the live transcript CC. And if you don't see that try more dot dot dot and look for show subtitles. And if you change your mind and want to turn them off hide subtitles can be reached in the same, the same way. So, we always begin our program serial brains belong with with setting ground rules, establishing safety part of neuro inclusive space. And there's a lot of safety setting that must must be set for this. So usually at brain club, we talk about how all people are welcome of all ages. For this brand club, I highly recommend mature audiences, and I will have some specific content warnings of the topics will be discussing. And you can, you can make decisions based based on that so you could be listening with informed consent, but our other home on Sarah are you seeing the waiting room still pop up. Yes, I'm hitting admit all. Okay, got it or you're on it okay so I don't have to look at this anymore. No I'm on it. I'm on amazing. Thank you so much it's like one less thing to look at. Amazing. Okay, yeah. But our, our, our other ground rules of community agreement are all the same. So you can participate a lot of most of you have discovered that you can have your video on or off. And if it's on we certainly don't expect anything of you definitely don't need to look at the camera, you know walk move stem fidget eat take breaks all of it and communicate however you're most comfortable communicating. When we think about how do we create safety. This, this, this is this we have so many different access needs things that we need to meaningfully participate in a particular activity, and content warnings, I think are an important part of meeting people's access needs. So my content warning means like naming the topic for you know language or details of potentially distressing topics so I'm just going to name the thing we are going to have some potentially distressing topics. So here are my content warnings for tonight's presentation. We're identifying health data, bullying, all kinds of distress trauma premature death suicide and ableism. These are the current state of affairs for autistic health. We're talking about the brain science of social justice. When we tell the people that they're doing it wrong or they're offensive or whatever. It's really predictable that anyone would have a limbic response. It is involuntary. It may look different for different people in different contexts, but it is automatic. So tonight as we, I would imagine that tonight we may, we've got both brain club regulars and folks joining for the first time. So these topics may be new. And if these topics are new. I would expect discomfort. And so let's plan some regulation strategies ahead of time. So, you know, for, for me when I'm, when I'm dysregulated I like impulsively, you know, want to start blurting out like attacking things anyway. We have some impulse control on zoom for this but also, you know, it's, it's okay to take a break. There may be some sensory supports that are regulating there may be some cognitive supports. For example, my cognitive support when I am uncomfortable talking about topics that are hard is I try to remember the long game. For me the long game is a reimagined life for autistic people, a reimagined sense of what's possible for autistic health. And what that means is having hard conversations about the status quo and how it's not working very well, or at all. So when I do presentations or health care providers. I often ask this question. And the responses that I get are fairly predictable. They're fairly predictable to include challenges with X difficulty doing why. It is the current state of affairs. It's the way that health care providers are often train. So tonight's presentation is going to be how that paradigm is not only unhelpful. I'm going to make the case for you tonight that that paradigm is harmful for the health of autistic people. We're going to go through an agenda, a quick agenda. So, give you a little bit of introduction since there are, there are many folks new to all brands long programs, a little bit of an introduction about me and where, and and and some and disclose some, some biases that I think are important to know about. And then we're going to go through healthcare outcomes and specific barriers to access for autistic people. So look, we're going to zoom out and we're going to say what is the autism narrative within the health care system and beyond, and how did we get there. And then we'll take some practical steps toward a new narrative. So by way of introduction. I'm a family physician, I take care of people of all ages. I, for the past year and a half my, my clinical focus has been that of supporting neurodivergent kids, adults, often multi generational families. And though I have a whole lot of professional training in this regard, where I have learned the most is from my greatest neuro cultural competence, until fairly recently in my life. There's a picture of me on the left brain club regulars have seen this picture before this picture of me on the left. A week before I gave birth to Luna there was a doctor takes care of babies. You know, so called expert in child development I thought I knew what I was doing. Yeah, well, Luna felt otherwise, and Luna made it very clear in no uncertain terms. So that hurt that that our environment and the paradigm in which we were operating was, hold on, there's a comment in the chat what happened to the sound is sound gone. It cut out for a second a second now but it seems to be back now. Oh, sorry about that. It was really, it was really brief. Okay, I got a little flicker of your internet's unstable that was. I didn't want to see that. Anyway, I hope that doesn't happen again. But I should probably or I have my backup with getting back if that needs to happen. Okay, anyways, so back to my path. I was really forced to reckon with the fact that for Luna, our environment was thwarting her self actualization of her little baby self. The world was too bright, too loud moved way too quickly. And this was a barrier to her accessing her world. And so it is for so many people. My biases. I'm autistic. I also spend most of my day and my life with neuro divergent people. But I do not speak for anyone else farther than me. I'm going to present research and data on collective experiences from research settings. As I said, the long game of inclusion for me is it is about contributing to a world where my sweet little love can grow up in a world where all brains belong. And so I spend a lot of my time functioning in the role of a cultural broker. And as time goes by, and I spend most of my day and my life with people who get it, it is becoming a lot harder, a lot harder for me to tolerate the status quo. So my medical education about autism in my pre clinical training so before starting to work with patients, I got one hour. My lecture was about the triad of impairments of autism, and it was a wrote list of the co-occurring conditions that are seen very commonly. When I got out into clinical training. I had been trained in the stereotypical triad of impairments. Yeah, I saw those stereotypes. And my the people who taught me had an emphasis on red flags, preventing, treating, intervening upon observable behaviors. And the hidden curriculum, the messages that I received as a trainee was that there was one right way to develop to play to learn to be a human. Of course we know that's not true. I'm going to now describe examples of barriers to health care access and health equity for autistic people. And then we'll go through the medical model paradigm that that that unfortunately is all too commonly used to view people and how that impacts their health care experiences. The problem, nearly 80% of autistic adults report having poor access to primary care. This is this comes from a study of people who actually have primary care physicians it's not like oh I can't find someone taking new patients it's like I haven't established arrangement, I just can't access that care. Only 70% have untreated physical mental health conditions. And there's a whole lot of healthcare expenses incurred in in the healthcare that is accessed. Only a third of autistic adults report having a good relationship with their primary care physician, despite more than 70% reporting that this would be something they'd want. And a third of autistic adults don't even tell their primary care physician that they're autistic, specifically because of fear of judgment. And so, not surprisingly, autistic adults have lower rates of accessing preventative care. Other providers don't get a lot of training about autism, I shared, I shared my training experience. And the research really supports that. And in looking at how rare it is to find that US primary care physicians actually feel confident in providing that care, only 25% feel even confident with communicating, let alone performing like. Other aspects of medical care. And when we when we think about what we see and what autistic adults widely report, you know, both in, you know, beyond research settings, and, you know, certainly in our practice where and not all that all brings together, the reasons are autistic, or even neurodivergent they come for a lot of different reasons. People generally come here because their needs were not met by the traditional healthcare system for one reason or another. But amongst that self selected group of people whose needs were not met by the traditional healthcare system. The stories that are told are of, of trauma and invalidation. The notion of attitudes and knowledge that is insufficient to meet people's needs. And that is what is described in the literature. So a darty at all in 2020 in a large study of autistic adults identified three buckets of barriers to accessing care for autistic adults. And the environment that is interactions with the healthcare environment that may include sensory processing and other environmental modification but it's but it's also thinking about communication, but that kind of healthcare interactions with interdisciplinary members of the healthcare team. I mentioned just a minute ago, the perception that healthcare providers have insufficient knowledge and skills and unhelpful attitudes that is felt by patients. And lastly, the system. There are so many defaults of the healthcare system, you must pick up the phone to make an appointment, you must fill out the 20 page packet to become a new patient. So, certainly, if, if, if a patient requested an accommodation, you know hey these forms are hard for me is can someone go through them with me a different way. I'm sure that those requests would be honored in most settings. However, it is still a default and anyone whose brain works in a way that is not that default is still going to feel other. I mentioned the healthcare culture and the hidden curriculum for trainees that go along with that are also a really important barrier to care. I remember as a medical student. I would have supervisors who would make comments like up. There's a patient with the list, as though there were something wrong with organizing your observations of your own health on paper. So if you're going up prepared for medical appointment, or someone might say up that person can't be in pain. Look, they, it's a positive cell phone sign, as though if you're using your cell phone, you can't be in pain. That's what goes on out there so often patients will will describe. You know, I get this vibe that this person's judging me, and it like they don't think very well of me yeah well. That that vibe is often real barriers to access. In the last 25 years, the World Health Organization has defined disability in terms of the social model of disability, rather than the medical model, which is that the issue is the individual, the social model of disability refers to the issue being an inaccessible when it when it when it comes to visible disabilities for example let's say I have a motor related disability and I am a wheelchair user let's say if I approach a building that has a ramp. I am going to have less disability than if I approach a building that does not have a ramp. And when we think about invisible disability disability you can't tell by looking. It's the same thing. It's just that often people don't talk about that. Oh, that's really important. But that's not why we're having this presentation. That's not why we're talking about this that's not why I quit my job to start this organization. Autistic patients are dying. The average life expectancy for an autistic adult is 36 to 54 years, leading causes are cardiovascular disease and suicide. We're going to come back to the cardiovascular disease component. But I want to just name about suicide autistic adults have a four to nine times increased risk of completed suicide. And that risk is actually higher in those with lower support needs. It has been found in the literature. Repeatedly that the increased risk of suicide is highest in those who experienced the pressure to mask and camouflage and comply with the defaults to hide one's true self to not be able to safely show up as one off one's authentic self. So independent risk factor to suicide. And so when there are recommendations about interventions or supports or whatever that encourage camouflaging and masking. The literature would state that that increases the risk of suicide of autistic people. So, what is the healthcare narrative of autism. Before I knew I was autistic. I, and I think I first started asking this question and started developing an interest in working with autistic children and families. I started asking, you know, about learning that your child is autistic. What did the medical providers tell you. And these were some of the quotes. I'm so sorry to tell you this, but I think he has autism for. Don't worry, he doesn't have autism. We need to begin intervention right away. He probably has autism, nothing to do about it. Sorry. He needs medication to stop that behavior right away. This is an article from the psychiatric times entitled how to deliver a diagnosis of an autism spectrum disorder to parents. And I'm going to play you a video clip. By the way, thank you Laura in the chat. Some jargon busting camouflaging and masking is when autistic people either intentionally or unintentionally change their behaviors to hide autistic traits to appear more non autistic. Usually as a survival skill required to fit in. Thank you for think, thank you for busting that jargon. Stop sharing and then reshare in order to turn on sound. Here we go. Really. Many parents have questions about the autism diagnosis and what it means. Autism spectrum disorder or ASD is characterized by social interaction difficulties, communication challenges and a tendency to engage in repetitive behaviors. However, symptoms and their severity vary widely across these three core areas. Taken together, they may result in relatively mild challenges for someone on the high functioning and end of autism spectrum. For others, symptoms may be more severe as when repetitive behaviors and lack of spoken language interfere with everyday life. While autism is usually a lifelong condition, all children and adults benefit from interventions or therapies that can reduce symptoms and increase skills and abilities. So that is a fairly common way that autism is discussed by healthcare providers. And when we think about where that a share string again, here we go. The problem with that narrative is that it's formed by a stereotype that was created in the early and mid 1900s and perpetuated. The word autism was first used by a Swiss psychologist named Eugene Bueller. And really what he was actually describing were symptoms of schizophrenia. And he was describing patients who were especially withdrawn and self absorbed and those symptoms were actually treated with electro convulsive therapy to treat those patients. In 1943, an American psychologist, Dr. Leo Kanner, published a paper describing 11 children who lacked social instinct to orient to other people were focused and even obsessed with objects, and had an obsessive insistence on persistent sameness. He named their condition early infantile autism. And this restricted view would shape the field for five decades. Meanwhile, turns out a few years prior, Kanner hired a diagnostician named George Frankel, who had come from Germany, and Frankel, prior to working with Kanner. This guy Frankel had been the chief diagnostician in another scientist lab, Hans Asperger. In Germany, who had been writing about similar patients in the late 1930s is now thought to be the original first person to describe autism. And in 1944 he published a paper describing a milder form. It was always all boys who were both highly intelligent, but had trouble with social interactions, and had specific obsessive interests. And more recently, it was identified that actually Asperger was a terrible person, and there were records discovered where actually he had done surgery on these kids brains, and opportunistically referred some of these tiny children to Nazi eugenics programs and you know just know that's why we don't use the term Asperger's or Asperger's anymore. Now, meanwhile, moving along the timeline in the 1940s and 50s, there was another character named Bruno Bettelheim, originally thought to be a psychologist, but turns out he had fraudulent records. It wasn't actually psychologists. He rose to fame during this time period. He wrote articles and made TV appearances promoting his view that children with autism experienced horrors at home similar to prisoners and Nazi concentration camps. And his view was that autism was a trauma response to the term he coined as a refrigerator mother. He and Tanner propagated the idea that these children should be institutionalized for their own good. This was literally called a parentectomy, the removal of a parent. Tanner himself wrote that these children were exposed from the beginning to parental coldness left neatly in refrigerators, which did not defrost. Their withdrawal seems to be an act of turning away from such a situation to seek comfort in solitude. In a 1960 interview, Tanner bluntly described the parents of autistic children as just happening to defrost enough to produce a child. And as this was all going on. There was an emerging trend that this awful thing called autism needed to be treated. The US National Autism Society was founded in the 1960s and became a multi-billion dollar industry aimed on curing this horrible condition caused by the refrigerator mothers. Now in addition to anti-psychotics being developed to sedate these dysregulated tiny humans, behavioral treatments rose to power. Eva Lovas, who is the same UCLA researcher who developed the appalling technique of gay conversion therapy, developed a therapy treatment called applied behavioral analysis, which consisted of aversive punishments to extinguish autistic behavior and reinforce the gold standard of default neurotypical behavior. And while shock treatment, which were used then, while shock treatment is not part of the ABA modality is used in Vermont today, to my knowledge, the philosophy is still the same. Lovas is quoted as saying, when you work with an autistic person, you start from scratch. You have a person in that they're people in the physical sense, they have hair, a nose, a mouth, but they're not psychologically a person. This is a matter of constructing a person. You have the raw materials, you just have to build the person. In this setting, autism entered the diagnostic statistical manual. When you look at the original description in DSM three, lack of social interest, severe communication impairment, bizarre response to the environment. That description is pretty similar to that early 1900s narrative and it's still pretty similar to the current description in DSM. So, though between DSM three and the current DSM five descriptions of quote autism spectrum disorder, we are really still talking about the same narrative. Just going to catch up in the chat. I'm sorry I missed a lot. Carolyn says when I learned about ABA treatment and saw videos of it I was so distressed and felt everything that those children were experiencing, knowing deep in my heart that they were being trained to believe everything about themselves is wrong. Thank you for sharing that Caroline. Emily says isn't the first person to be diagnosed still alive. Yeah, so there's a documentary. There's a film that was released last year about this. Kelly says, I loathe the term intervention. I've shared before but our child's diagnosis was given to us with an actual box of tissues. My diagnosis was given with a hearty congratulations. Cat says our doctors shared the dire statistics about life expectancy. And shortly after that handed us the list of ABA practitioners. So, um, I would like to say that this 1900s narrative is different now, but it's not. This shared with permission from one of my patients families. This was from an evaluation report from a quote autism expert in 2022. The seven year old does not come across as clinically having the separate in inwardly focused quality path a mnemonic of the disorder. He interacts significantly and seamlessly with parents and demonstrates empathy report is present. Ergo, his child. It's not autistic. This is literally what goes on out there. And when you're only trained in stereotypes. You only see stereotypes. So, in 2015 published a study of primary care physicians, showing that less than 10% of PCPs would suspect autism if the patient volunteers information shows interest in people discusses emotions and can see the whole picture. This is literally what goes on out there. And all of the terms through this deficit based lens, red flags restricted interest rigid. Or morbid the functioning labels. This is what goes on out there. And why this matters is that autistic people grow up stigmatized and other. We receive the message both directly and indirectly that our way of thinking behaving and communicating is fundamentally wrong, broken and needs changing. And we hear the language because for a lot of autistic people. When we hear people professionals who use these terms, that is a red flag alarm. This is an unsafe person. That is how many people experience the use of those terms because language often influences. It's not directional. So, the language you use as reflective of the paradigm you operate in, and the paradigm you're operating in influences the language you use. And so the thing is, if healthcare providers are viewing patients through the lens of canner Asperger bellheim low boss. How will they ever feel comfortable. The call to action is to shift the narrative, because I think the healthcare system is perpetuating the current narrative. And this is what we know should have updated the slide from, from our original presentation on what we know in 2023 it's still true, we all have different brains. We all have different ways of sensing processing thinking behaving communicating learning, all the things neuro diversity is like biodiversity it's the natural variation in human neuro cognitive function, which is why universal design, offering things in multiple flexible multimodal ways of everything is best practice and short of this focusing on designing supports and accommodations it's not about treating fixing, or even encouraging people to comply with defaults. Because what we know is that that's not good for health in fact it's the opposite. I'm going to catch up in the chat cat says something I saw today being autistic. It's not an excuse it's an explanation. Some doctors think we are looking for an excuse when no just being autistic it explains a lot Kelly's agreeing with that. So thank you for describing ABA for the record as well as all as these facts it's valuable to put this out bluntly. And yes we as we as as as always so this will be what available for anyone who like wants to learn. And Steve says, there's a financial aspect the diagnosis is feared to entail expensive services and schools. It's easier to get ADHD, ADHD diagnosis, which is often for many people a gateway diagnosis. So autism defined in neuro diversity paradigm. So these are all definitions that come from autistic professionals. So McCowan at all. This is a group of autistic physicians and researchers define autism as a lifelong difference in how people communicate and interact with the world. These differences lead to strengths and challenges with individual profiles, which includes special interest hyper focus often sensory differences in anxiety. So Mercy who's an autistic speech language pathologist defines autism as a neurologically based difference that results in a different culture of communication. Here in rose and autistic educator and researcher in the UK defines autism as a neurologically based difference in thinking, feeling and being. This relates to how the brain takes in processes and organizes and interacts with the environment and other people. What we're really talking about is shifting the framework to be that of considering access needs. You know at brain club, I think like every week we talk about access needs. Anything required to meaningfully and participate in one's environment or community. Everyone has access needs. It's just that for the one in five people who learn think and or communicate differently than the majority of brains. Our access needs are much less likely to be met by the defaults of society. There's all different types of access needs, and much like when I showed that graphic of the social model of disability and gave the example of the, the ramp. When it comes to invisible disability, affording these to all these types of access needs to be met that's the equivalent of the ramp. So about a year ago, we asked our community advisory boards all brains belong in addition to our governing board of directors we have a community advisory board that informs all of our programs and priorities. And so the people were serving. And so the community advisory board I asked, how will we know that the community has become more neuro inclusive. And what so many people talked about was access needs. And so really, for the past year, that's why we talk about access needs so much, because that is how we're going to promote full and meaningful participation in community, which is what we're looking for it's the longing. So shifting from access like simply just being able to participate at all to inclusion perceived belonging. What impacts inclusion we have these prerequisites of inclusion, you have to feel safe. You have to feel regulated, all of that, you know, all of it comes first. So once we feel safe, then we can engage with the environment. Once we engage with the environment then we can have purpose purposeful communication, and when we have purposeful communication, we have connection we have meaningful relationships, but that safety that regulation piece comes first, and you can't just like decide you're safe. It's what your limbic system appraises your neuroception your threat detection system. So this is how I as a doctor actually think about it so this this comes from a book called The Whole Green Child by Dr. Dean Siegel and Dr. Tina Paine Bryson. The model is upstairs brain and downstairs brain. Upstairs brain is the cortex. The, you know, thinking planning perspective taking, you know, all the complex decision making weighing the pros and cons the planning things out. That's what brings the limbic system it's the automatic fight or flight the part of your brain that keeps you alive involuntary automatic reactions to things in the environment. So when downstairs brain is triggered for any reason. The nervous system is not available. So not available for engagement with the outside world. Disregulation you know I think if I started screaming and like throwing things and punching the wall, I think you'd probably be able to tell that I'm dysregulated. The thing is, that's not the only way dysregulation presents. It can present as quite like leaving the room, leaving the building. It could be like emotional flight like withdrawing from a conversation. It could be freezing or glazing over. It could be like a flood like a flood of ideas and overwhelm and anxiety, thawning excessive people pleasing as a survival skill. It can be fatigued. All of this are equivalent dysregulation, whether it's an externalized versus an internalized manifestation dysregulation it's all. It's it's it's all dysregulation at all means that the cortex is not available. So behind the scenes and I'm not going to go just in the interest of time. Oh, look at the time. I'm not going to go into pretty much any detail about this but we have a million brain clubs about this we have a million free resources on our education page about all kinds of things related to sensory processing executive functioning motor planning we have all this stuff available. This is all the stuff that are often access needs that are not afforded, and that contribute a great deal to dysregulation and are not. If you don't address them. People are not going to have full access. So, a new paradigm. One and a half ago, we launched a great experiment of, can we support autistic health via connection. Can we use inclusive design principles, flexible multiple different options giving people freedom and choice. And can we bring people together based on shared interests to promote health. In order to do anything for the neurodivergent community we have to do everything. Because if we just opened up a health care practice and like, you know did a good job providing health care, it's still wouldn't change the world, because it's not just medical care and a vacuum. The idea that health care is like just so arbitrarily separated from the rest of life, never made any sense to me. And when I practice in a traditional primary care setting I was spending most of my time helping people problem self life outside the exam room, accessing employment accessing education making friends, dealing with isolation and loneliness. You have to do all of it to do any of it. So what we do here is in addition to health care appointments, we bring people together. And even for, you know people who aren't getting our getting health care from all brains belong. You know we have a range of community programs that most of which are entirely free and virtual and open to everybody, bring up like this. So first based social connection programs for for for actually all ages now we have been an adult an adult group that just started there's going to be some more adult groups this summer. Employment support, and of course, training opportunities to really shift the broader community conversation on neuro inclusion. So here, our healthcare programs serve 250 patients, our community programs or 454 households, and our neuro cultural competency trainings for 321 participants. And so I, what's been really encouraging in our first year is that I that the community need is so obvious, and that the response has been like, oh yeah, yeah, I guess that makes sense. So we should, we should do that. So, what is neuro inclusive health care look like. So, and again as I mentioned, not all of our patients are neurodivergent. We are not requiring or even looking for people to like come in with a specific, you know, gatekeeping diagnosis to access this month this model. Because it's all patients all patients are offered a customized healthcare experience, a co created menu of multiple different ways to schedule appointments to communicate during and between appointments supports for executive functioning, a range of environmental conditions do you want to wait in a dim light, a dimly lit space or a brightly lit space, you know what kind of furniture do you want you want to wait in your car, do you want to have an outdoor visit. So do you. So you want to use a, you know, any, any number of executive functioning supports to like, you know, past time. Many, many, many people myself included, you know, don't feel the passing of time and then it's like oh I've just run out of time and all that. So in a non traditional setting so many people have healthcare trauma where they walk into an environment that like reminds them of that place where they were invalidated or worse, and restrained or like all the things that go on. And, you know, the trauma lives in the body. And so we very intentionally don't have a healthcare facility. We, in addition to medical care of neurodivergent kids and adults. We, we've learned that a while ago I said well we're going to come back to cardiovascular disease. As one of the leading causes of death for autistic people, turns out there are a number of medical conditions that are more common in neurodivergent patients that relate to neuroimmune function related to, and I'll show some examples. So, in our practice, we, we have, we've seen a pattern that almost all of our neurodivergent adult patients experienced something related to their nervous system something related to sleep something related to their john face something related to their gastrointestinal system, something related to allergy or immunology something related to connective tissue. And the, and turns out some of the standard. Oops. Sorry, I thought there was another slide. Maybe, maybe it'll appear up somewhere out of order anyway, some of the standard management of some of these things when you treat the body parts in a vacuum silos is that some of the standard management of some parts of, of all these things are they have some parts worse so for example, some people who have chronic pain they get prescribed muscle relaxants, but turns out if you have stretchy connective tissue and you actually had your airway collapsing on itself, causing obstructive sleep apnea, well now that muscle relaxant just made your sleep apnea worse which actually made your pain worse which also made your heart rate racing problem worse, and it's all related. To quote one of one of our patients, it's like a ball of yarn, if you pulled the wrong string you make the knot tighter, you have to find the right string to pull. And what we've learned through our community health village is that by bringing people together who are navigating their health journeys together we've really created a village of learning and healing together. And we've elevated the expertise of people's lived experience, and that's how we've learned how to support people with all the things. The other thing about our village that's really very special is that it's a community that takes care of itself. And our community advisory board, for example, created a fund called the it takes a village fund. I want to make sure people keep reaching out to get their needs met without guilt and shame. I would love to set a precedent of this community supporting itself and taking care of one another, and that mutual support that pure support is a really important part of the model here. By the way, if, if, if anyone is in a place to be able to support the it takes a village fund, we would we would greatly appreciate it at any given time. You know, we have, we have so many of our patients who are unemployed or underemployed because of disability and are unable to keep up with their medical expenses and that's what that fund, the it takes a village fund goes toward our social connection programs. So again, this social connections part of health. So bringing people together based on shared interests is part of health. And that's why that's why we have these programs. And I, I think that what we have found is that our patients who are engaging in, in community social connection experiences are having improvements in their health, more so than other people. Employment support is also part of health. And, as I said, it is. There are so many, so many people who are underemployed and unemployed because of disability. And I think, David, what is it? I, I, neurodivergent people are four times more likely to be unemployed. And, and some statistics are that you know anywhere from, you know, 40 to 70% of neurodivergent adults are unemployed. So these, you know, this is this is a significant problem. So supporting supporting these are programs, this is a program for our patients of supporting self actualization through employment. And of course trainings, trainings like this. And, you know, we do in services for a range of organizations, neuro inclusive employment trainings, I think have been, you know, particularly impactful, because we're not waiting for people to disclose a disability, we're wanting to create environments for people with all types of brains to thrive. I'm I will catch up in the chat on like now. I have a couple more slides and then I'll look through the chat but I saw something pop up about, you know, can can we take autism out of the DSM I would love to take autism out of the DSM, because I don't believe it's a disorder. And we heard how it got there, and that's like a corrupt story that I certainly did not get in my health care training. So anyway, I do think that neuro inclusion is, you know, via the neurodiversity paradigm that we all have different brains you really want to be able to offer everything you're doing in multiple different ways and that's what our trainings are about. Because the long game. I'll close the long game. So last year I closed with this that that our long game was that can you imagine if all kids grew up, knowing that some brains do X and some brains do why there's not in fact a right way to do things. This year I'm going to close differently. Some people ask me, hey man, come on. Well, why don't you quit your perfectly stable job to start a nonprofit organization and try to change the world? My answer, how could I not? When I learned that the average life expectancy for an autistic adult is 36 to 54 years, I flipped my lid. I was 37 and had just learned that I was autistic. It's also the parent of a four year old autistic child. Status quo is failing the autistic community and I am driven every day to create a world for my sweet little love and all the sweet little loves where they can shop as their true self connect with the community and have a better tomorrow. I hope you'll join us. And then so with that, I'm happy, happy to take questions. I'm going to catch up in the chat. I got first hand a second. I gotta. Oh, that's wonderful. So I gotta, I gotta, by the way, you're, you're welcome to send direct messages to me if you want to send. If you want to send private messages, that's fine too. So, I was like, Okay, great. So now I can catch up. All right, so. Where are we? Oh my goodness. Sorry, I missed a lot of stuff. I'm all caught up. Okay. So Laura says radical reshaping of most of the DSM is needed by name alone is the diagnostic and statistical manual of mental disorders as long as we label always beyond the neurotypical brain as disorders we will have stigma around mental health and neurodiversity amen to that. So Laura says it's it's there's a lot of powerful lobbying behind keeping this in the DSM to prove to insurance as the clients need something to fix to get therapy. Kat says spending time in this space gives me strength and knowledge to go out into the world. Oh, that is, that is such a deeply meaningful comment. Thank you Kat. Because does anyone know anything about the co the co occurrence of autism and ADHD I think it's somewhere around. Oh yeah, thanks Laura that's amazing amazing I was gonna say the same thing, anywhere from I would say like 6668 to 70% or more. I think about these as almost entirely superimposed and diagram circles they are not the same thing, but they so very, very often co occur. And as I'm drugging away individual symptoms is not a good idea. Correct, especially because those symptoms are often caused by an unsafe environment. There's a question in the chat about what what is, what is what is neurotypical and Lynn says some recent FMR studies suggest that neurologically there is a standard pattern of brain activation. And, and, and is getting into the, the, you bring up the double empathy problem. So it is, it's been found multiple times the double empathy problem is a term coined by Dr. Damien Milton who's an autistic social scientist in the UK, who talks about not talks about like has found in research and this has been reproduced many times that when autistic people communicate amongst other autistic people. There are no, you know, it's, it's, it's fine. And it's really that just as often as autistic people may have miscommunications with non autistic people just as often. Non autistic people are not perspective taking in the other direction so it's the idea of not like one correct way of social skills it's that when there's a mismatch of worldview and mismatch of communication style that is where communication happened. And that's exactly what Lynn says, yet we as autistic do not have problems relating to each other. I'm ecstatic about the turn happening, but really need intentional community with positively minded folks around this yeah so I'm so I'm so glad that you have found us. And, oh, okay sorry it's been bouncing all bouncing all over a lot of people saying that they got their ADHD diagnosis before their autism diagnosis. Danielle says very powerful lots of my thoughts and feelings were constructively reported. That's, that's great. That's I'm glad to hear that. And Rebecca says I you know I look at autism screeners to see what what screens for autism and assume that those who score the opposite way. Yeah, I mean it's I think it's just there's there's just so much of. There's so much complexity here, but I also think that you know I really don't think about, you know, neuro typical versus neuro divergent I really do think about this, this continuum of of of of brains. And I'm happy to take other questions. Any advice for people who are currently still in the system, like, besides leaving the system. That's a great question. You know I think that we when we do trainings for for healthcare practices what we talk about is thinking about trying to get rid of any defaults that are that are happening. So, even in, you know, obviously, you know, in a large large practice there is very little you have autonomy over, but there are some things you have autonomy over. And if you do something in one particular way and that's the way it's offered anyone else's brain who does the thing differently is going to be other. So if you could think through your workflow and identify like at any stage of the workflow. One other option and offer both of them, you know three options would be great but at least two options for everything you do and we say we offer it both ways. That would go a really long way. Great question. Any other questions. Rosie says something really important, how the options are presented without stigma is so important. Absolutely. This is something we offer everybody. My name is it's about I have a question for you. I am just about to start up a mental health private practice and I have my wheels spinning on ways to make it, you know, a more supportive space. I was thinking a lot about like sensory sensitivities and during your presentation I was thinking a lot about how the standard for mental health screening is the 15 minute consult call. And I'm curious if you have kind of recommendations for accommodations or other ways to screen clients for, you know, if they're the right fit. That's a great question. So what what we do here is we provide a lot of information you know transparency is really important to us. So we provide a lot of information and for everyone you know you can get it in writing, you also could come to a virtual we do a virtual open house where we're like really transparent about how we do the things. And you know, we want people to have informed consent or like you know no models for me which is fine because it's not for everybody is because it's really different than the traditional model and there's some tradeoffs for that so so in getting information in one way is important. The other thing is, it, it, it may be around the ground rules. So here we say that when you have your first appointment. You are not in fact establishing care, the purpose the purpose of the and if you say it up front, the purpose of the first appointment is for you to learn about the practice and for you to decide if this is a good fit you can go through the whole process of reading the thing and attending open house and all the things, but then like individually you want to be able to ask your individual private questions in the context of the confidential medical appointment. And so, doing off just, you might you might want to frame that that rather, rather than like, you know, screening ahead of time like have that just be an appointment. And then as far as multiple different ways to get information to be able to offer, you know, digital forms, in addition to you know the usual paper things or to do forms with you. So that's what I'm talking about you know this is something we offer for everybody. Christina says for an autistic person I would prefer to write things down to first share because talking will distract me while I'm trying to explain something. And Christina is bringing up the idea of open ended questions, you know I was trained that you know that the default way to interview patients was open ended questions well there's some people who said, that's not accessible. They need checkboxes they need that plus, you know a free space. They need a menu, because, you know, ID eating to an open ended question is just so overwhelming it's kind of like you know, even, you know, my, my husband does not have an autism diagnosis but when I ask, when I ask him like how is your day. He's really like I could answer that in 50,000 ways and so I am overwhelmed by that question. Like, there's quite there's like an ongoing chat I'm like delighted that people are interacting with each other and I am missing entirely something about frogs and assessment and lily pads. So anyway. And Lynn is a school psychologist, an autistic school psychologist. Yeah, so we're going to do a break so lens I'm sorry, you know, at any given time, most of the ab village is an autistic burnout. And I think that we were so glad that you've connected with us and you know it's just about supporting supporting other than other we are going to do a brain club about autistic burnout in May, a couple weeks. And so my husband says how was your day there were so many hours in my day and it was so many different things exactly. Exactly. Yes. Other questions. Not so much a question just as a comment. My, my son is getting to the age where, you know, we do well visits at the doctors, and, you know, there's more self reporting forms, and, you know, it's all this teeny tiny writing of 55 questionnaire sheet handed to an autistic person with dyslexia. And, you know, here's mom in the waiting room so there goes his privacy, because now I'm helping him fill out the form. And you know I realized it at age 13 and I was like hey, you know if you're not comfortable filling this out with me that's fine like I get that we can ask the nurse if they can sit and do it with you and he was like no it's okay that you do it with me, but we just had his 14 year check. And this time he was like, there's some questions that make me feel really uncomfortable and I don't want to talk about them with you and I was like that's totally okay. I was like you know we need to come up with some ideas for these doctors to let them know that this is not the easiest way for you to answer their questions. And so he did he told his doctor like hey you know I'm dyslexic and this was really hard for me you know I think if you have less questions or a bigger paper or have it on a screen. That would help me and the doctor was like you know that something we're actually sitting down and talking about because you're not the first person to say that this is really hard. It was just, it was nice that to know that at least they're talking about it I mean obviously it would be much nicer if it were put into action, you know, years ago. But it's, I'm glad that it's happening, but I think that there's so many different aspects that people forget to think about, you know. Right, it's it's that's that's able to privilege. That's how that goes. And so I think that first off, you know, I'm so in awe of your child for his self advocacy skills. And as Laura says, kudos to you for teaching him to self advocate, he shouldn't have to. I think first off, what I hear in that story is so we have a child with a disability, who is having to come up with his own accommodations. And that's where the menu of these are all the things we offer to all the people that is neuro inclusive healthcare. And so it's, it's, there's so much room for improvement. But I think it begins with. I think it was Lynn who said intent, just intentional intentional community intentional community of people who get it. And I think that's, that's how it begins. And speaking, speaking of which, oh thank you Laura, speaking of which, you know, Aubrey belong is a nonprofit organization. And so our, you know, our community programs that that that, including educational programs like this, we're able to do that because of the support of our community members and so if you are able to support us, even even indirectly by spreading our word about our work. We have a spread the word website that if you could just let people know what we're doing, or follow us on Instagram to comment or share our posts that helps the that that helps the reach of our posts, because that that's that's that that's that's how we, that's how we change the world is spread the word about what's possible, because this is, it's actually not that hard, it's just about completely changing the paradigm. So thank you, thank you all so much for being here and being part of our village. Next, next week, as we continue our month of brain club, we're back to a usual brain club format will be it'll it's it's it's it's called designing a work life that works for your brain. It's our weekly weekly, it is our third week of the month brain club that is always around your own inclusive employment. So, and I will look forward to seeing you there. Have a good night.