 Alright. Hello everybody. I'm so glad you were patient enough to wait it out for your Zoom link and I'm glad you're all here. Let me turn on the backup recording. Okay. Recording in progress. Alright, so let me pull up my slides. We'll get going. So tonight is our monthly book chat. We're not broken. Changing the autism narrative by Eric Garcia. So I, oh, I like I literally forgot to introduce myself like it's a anyway for the for the recording purposes. I'm Mel Hauser I use she they pronouns I'm still executive director here at all brains belong. And this is brain club our educational space to educate about neurodiversity and topics related to inclusive community. This of course is for education purposes only this is not medical or mental health advice. All forms of participation are okay you can have your video on or off and even if it's on we certainly don't expect anything of you. So do what needs doing and communicate however you are most comfortable. I am finding it more difficult to communicate with mouth words as you might be able to hear. So anyway, we'll all just do our best to do what needs doing. Anyway, so I'm in addition to affirming all aspects of identity. We want to make sure that this is a safe space for all people, and if for whatever reason you feel uncomfortable for any reason. Lizzie can you can you wave hello. This is Lizzie our education programs coordinator direct messaging is enabled. Lizzie will see a direct message before I will if I'm in sure screen mode so feel free to send a private message to Lizzie if you're uncomfortable for any reason so that we can take action. Okay, last bit of access to close captioning is enabled you just have to toggle it on if you'd like to use it so depending on your version of zoom. You can click either live transcript closed captioning if you don't see that more and choose show subtitles, and if you don't see that. I mean if you change your mind. You can choose hide subtitles. And that's the chat box, the speech bubble. Okay, so we are completing our month of theme but certainly not completing our reimagining of community by any means. This book written by Eric Garcia, who is an autistic journalist, who is the senior Washington correspondent for the independence is a political journalist previously has held additional high profile positions for the Washington Post and other publications. And what this book is about is Mr Garcia discusses examples of systems that were not designed with autistic people in mind sound familiar healthcare education employment. And we in just a minute will watch a brief video interview with Eric Garcia talking about rewriting the narrative of autism. And then after that clip will watch Mr Garcia discussing. He's going to talk about some of the examples in the book he goes into many more examples than he does in the video clip that that will play. But but he writes quite a bit about what we talk a lot about during brain club, which is intersectional privilege and intersectional marginalization, and gives examples and interviews with with people who are autistic and have various gender class employment status social isolation. And with that. I'm going to stop share. And David you can take it away. And in fact you now that I've introduced both video clips David you can play them back to back and and cut down on cut down on the steps of cognitive switching for all for you and me. There we go. What I would say to parents who feel that autism needs to be fixed is we do not tell children in real chairs that they need to walk. We do not tell deaf children that they need to learn how to hear they need a culture. We don't tell blind children that they need to see. But for some reason when it comes to developmental disabilities we assume that we need to change or alter that. In order for them to deserve an education in order for them to deserve being treated as a human being. And I think what we need to say is that autistic people are fully formed human beings as is they are not partially human and that being autistic is part of them. It's not something that afflicts them. It defines how they see and live and interact with the world. This is the last day on my way to the office. I'm in New York City right now, and I had to think about how do I get to the office how do I deal with all the stimuli going on with the sound of the car horns, and cars wasn't buying people walking past me. It's an integral part in my day. I think about it constantly with how I move and interact with the world. So in the same way I am asking able-bodied people and able-minded people to keep autistic people in mind and be understanding and accepting. Because that takes oddly enough a lot less work than trying to change autistic people. The most important thing to recognize is that plenty of autistic people of color go on diagnosed or get misdiagnosed. Plenty of black autistic children are misdiagnosed as having a behavioral disorder. And if you're misdiagnosed as having a behavioral disorder, then schools are going to treat you differently. And they're not going to give you the same kind of services that maybe a white presenting child might have. In the same respect, a lot of the diagnostic criteria is still delivered with white male autistic children in mind. So as a result, a lot of children from English as a second language homes are avoided. On top of that, plenty of girls are overlooked or people who are assigned female at birth, they're often overlooked. And I think that often prevents them from getting the right services that they need. And on top of that, I think because for a long time, we tend to think of autistic traits as something that boys have. When it comes to girls, if they're quiet or they're not a socially interactive, we tend to think, oh, they're just a mirror or they're just, you know, a quiet girl. Or if they talk too much, then oh, you're just a chatty girl. And in the same respect, I think when it comes to the LGBTQ plus community and I say this is assisted or heterosexual male, I think a lot of times their needs aren't taken seriously or a lot of times they are dismissed simply because they're autistic. Or their identity is dismissed because how could they know what they want if they're autistic. But I think once again, their needs to be taken seriously or what their desires and what their plans are should be taken seriously and should be taken at face value. On top of that, I think the other thing to remember is that misdiagnosis and a lack of diagnosis has a cost. Plenty of girls who get diagnosed later have difficulties with eating disorders or have trouble with interpersonal violence later on. And that's not to blame the girls to say that if you don't understand how you move through the world and how you're disabled, that can lead to people really bad people taking advantage. And on top of that, with many people of color who get misdiagnosed or undiagnosed, that can lead to really terrible interactions with law enforcement. It can lead to incarceration. We need some quotes as we usually do in our book chats. We don't know what autism in and of itself looks like. We only know how autism informed by trauma presents itself. What I'd add to that is that DSM criteria for autism are autistic stress behaviors. And yet, on top of that, it is also true that autistic people of color are misdiagnosed or inappropriately labeled as quote, misdiagnosed and behavior problems, everything that Eric Garcia said is true. And there's just so many different layers of what the medical model of autism offers and how harmful it is to so many people. And this, autistic people's value and work should not be tied to whether they are employable. No matter if an autistic person holds a high paying job or receives government assistance, autistic people should be viewed with the same dignity that all people serve. This is the last, the last quote and then we'll, we'll discuss. If there's going to be a policy that has seismic impacts on their lives, meaning autistic people's lives, they deserve to have a say in it, no matter how a person communicates. This comes from the chapter on non-speaking communicators. Furthermore, while many parent advocates, clinicians and other quote experts may have good intentions, centering their voices continues to give them power that should lie with the autistic community. To achieve any true sense of freedom, autistic people need to take this power back. And here's Eric Garcia's website and Twitter account. And then I would love to know how all of this is landing on folks. Hi, this is Sierra. I think the, I think the point about that we, we don't necessarily know. We might not frequently see what autism looks like without a basis of trauma is a really important point because I think I, I fairly, fairly often hear that like, oh, well we can't diagnose autism because this person has so much trauma or we can't separate out what's trauma and what's autism. And I think that exactly it's a myth. And I think that that's that's that's such a common thing that is kind of thought about in it's certainly in the medical community but I think elsewhere too. And I think that just knowing that those because of the way our world functions and because of the expectations put on people, those are necessarily intertwined. And that you can't, you can't necessarily separate them and we shouldn't necessarily have to always. Thank you, Sierra. I could not agree more. It's interesting when I am better regulated. My time processing is different, like in full transparency, I, I think I might be like experiencing time more accurately right now like I generally would never sit in silence this long. I was totally noticing that I was like, this is so nice. Everyone can really have a chance to chime in. There's no space for someone like me that like, like silence. I was going to say that the parenting thing you know the first part of the clip that you shut that you shared. It resonates a lot with me as a parent. The idea of, you know, just the idea that you know it needs to be fixed and that you know it, we would never say that to somebody who had the other things that you know he listed. And yet that's such a prevalent mindset when you look at, you know, we're going to teach them how to be social and, you know, do all of these different kinds of trainings and classes to make them fit. And so that just really resonated with me as a parent. I think Sarah and I think that so much of that is driven by the medical system. So I can say as a parent that when my child received the diagnosis it was like here. So now you get on the train and you do the thing. I'm like, Oh no, we're not, we're not going to do that thing. And of course you're going to do the thing. Everyone does the thing. No, we're not going to do the thing. So but that's that that is hard. I think it's also hard. I mean it was interesting. He had so many points, but I think it's also hard as the adult who, for instance, I was late diagnosed just just like a year and a half ago. I'm putting all the pieces together, but I'm still trying to catch up and put all the pieces together for my child and catch up to where she is like she's starting to go through transition out of high school. And now there are all these things. And I'm like, and then I, you know, so it's the catch up I feel like even though in our community of the neuro diverse and that's one thing I just wanted to mention. I really don't like the word divergent, because it feels like then that that those who have different brains or bodies have diverged from what you should be. I'm like, no, I'm diverse. I'm just it's I'm I'm one a different flavor. I'm not wrong. And I feel like that that labeling really really bothers me and that's what everybody uses. That was like a side note. But yeah, so, so I remember as a kid, my sensory issues before any trauma happened, and then then, you know, growing and then learning that you have something going on after the fact. So it's it's just, I don't know, I feel like we're trying to learn my own stuff, my kids stuff, and teach the world that stuff. And it's great that it's like changing but it's a lot. That resonates with me so much and like intellectually I might know a bunch of stuff and you know I I only learned that I was autistic two years ago, and I don't feel like in the thick of the challenges of parenthood. I'm able to necessarily apply most of what I've learned about myself in real time to support my child, because of all of the competing stimuli and the conflicting access needs and like all of. This is added in the chat, my daughter works at a very inclusive firm and marketing, she was told by the owner today that she needs to dress better. There's no dress code, and can't go in tomorrow and she finds some clothes that aren't leggings and t shirt. She wears these clothes because of her sensory processing she needs to be comfortable. It's hard. It's hard. Nature lovers added, I like Garcia's quote of parent give on Stasan. I would not change my son for the world. So I will change the world for my son. I also agree with Garcia that the medical model is wrong and the social model is correct, biggest obstacle to disability is a world around disabled people that does not accommodate them right and forks. Forks and obstructs. Yes. So moving back to, you know, to Christa's comment, right, how, just like zooming out and like taking the, like the theme of Christa's comment and sort of just just imagining how many times something like that plays out for a person over the course of a life span. Cynthia saying, I thought leggings and t shirt was a work uniform. Certainly my work uniform. So, so it's, it's, it's the idea of being that it would be, you know, and I, and I think, you know, communication is everything right so, you know, I think how this plays out like it's a pretty pretty close example. So my child generally is not wearing clothes. And I have a, you know, the language that I have used to describe why I feel like she should wear clothes when she goes outside. It's not because there's anything wrong with not wearing clothes. It's just that like the, the perceptions and the brain rules, this is the individual collective brain rules that comes out like, I want her to be aware of that which is in which is informing my anyway so I could see in a workplace for school or whatever. You know, all of these competing things but the idea is to accompany a narrative with, like, this is not because the what you're doing is wrong. It's just that we have all these other issues to balance. And that takes a lot of fun. And that's that. There's a lot of competing priorities that interfere with the perspective taking and like bridging that divide. And which one is right I feel like is the quandary for. I think neither. I think neither one is right. It's, it's the idea that it's kind of like, all right, let me give a better example. On my parents visit. I grew up in a house where there was judgment and commentary on styles of communication that are commonly used in my house by multiple members of my household. So, I made a comment to Luna of just to let you know. You might see this reaction. I just want you to be aware of it. I think it's fine for you to communicate with me this way. And I just want you to know that, you know, there might be a reaction so that you're not surprised. Not because you need to change the way you're communicating but just so that the world makes sense. And that when you have the kind of nervous system that derives safety from predictable systems and like, you know, I'm just just imagining if, if, if, if I am experiencing a particular workplace or school or whatever environment as of being like flexible and inclusive and understanding and whatever. If feedback is given that doesn't fit with that. I think it hurts and is more distressing than if it is feedback that's like consistent with, you know, we do things of this way. It's just hard. It's just, it's anyway, when it comes out of left field for many brains not all brains we all have different brains of course for many brains that is even more destabilizing like I thought I had a sense for how it worked here. And then something happened that did not fit that system. What does that mean about the way my sense for the world, the world must not be a predictable and safe place. Or sometimes we see this with kids when they see they encounter, you know, bullying for the first time and they're like, you know, I had a conversation with a kindergarten or last week, being bullied and just let me know it was very specifically like I don't understand. I don't understand how someone could be treating me this way. Cynthia adds just you know trying to help a teenager kid just understand social systems and all of the inevitable unpredictability of that right the predictable system is that it is unpredictable. And as a piece Garcia briefly mentioned about how LGBTQIA to s plus autistics are often told they aren't able to know their own gender or sexuality resonated. As a team my parents were told I was too disabled to know my own sexuality that I was just copying what was popular in the media. At the same time I wasn't given robust medically accurate sexual and romantic education. I got some biology education at home and abstinence only education at school. And as an adult, I've spoken on panels and worked with professionals on dismantling this myth that autistic individuals are too disabled to know their own gender or sexuality. Sierra shared with me a study was a qualitative study of Sierra was it was it was it all trans autistic participants in the study, who and like those those quotes that were so intense. Let me see if I can find the, let me see if I can find the study but it was a study of trans autistic and gender non conforming young adults I think, and then, and they kind of interviewed them about what the experience was like being at the intersection and most of, most of the responses were about that about people saying oh well you can't know yourself enough or this is just a, this just a obsession this is just a hyper fixation this isn't actually. You can't actually be gender diverse or whatever. I don't have the study and I'll put it in the chat if I can find it. Thanks. And when zooming out like how in like just help profoundly invalidating to not trust someone's expertise in their own self goes on every day. Thank you for sharing this chat. Well, and it's also so ironic. I mean, that there's this part. I mean, part of the thing they want to change is the idea that you know I'm I can't, I can't like, not tell, I can't tell a lie I mean I, you know, I mean, I just blurred out like the truth is I see it. And then when I like, so the part of what they want to correct is that part of me that is like, I can't not, I can't not be true to myself and say the truth as I see it. I can't conform more socially that way but when I say that when I say that this is my gender then they think I'm just conforming. They think they think, oh, well you're just conflu, you're just you're just so susceptible to what everybody else is doing it's like if there's anybody who is not susceptible to what everybody else is doing. Recording stopped. That would be us. Recording in progress. I don't know what I just clicked. Yes, exactly. Exactly Sarah. And you know, even, even amongst autistic people, the you know there's there's not not not everyone is incapable of lying. You know, many of us, you know, like, blurt out things to like avoid the pain of criticism and you know all of the anyway. So it's, it's, it's but but but you're absolutely right of just the, the irony and the nonsensicalness of, of any of that. I think I know when we've done tabling at pride events and that type of stuff I feel like we often get asked oh why is there, why is there this overlap between the two why are there so many LGBTQ people in the neurodiverse community and I mean we don't know why but I think that in some ways if you're already an outsider and if you're already other than it's a little bit easier to sometimes easier to accept other marginalized entities because you're already on the outside you're already being really already facing discrimination and in some ways that can make it easier to just kind of buck the buck the social norms if you're already kind of being forced into that place now that it's easy at all but I mean, and in Sierra I think like zooming way out I should just, you know, but I should just also name for, for anyone who for whom that's a that's that's new, especially anybody watching on recording that there is a relationship between neurodiversity and diversity of gender and sexuality. And, and so, yes, while the, while the, the mechanism of that relationship is can be it can be so many different things it is probably not just one thing. Thank you. Yes. Very good point. I think I was thinking about how people like to think of certain things as as the normal bit. If you look at it from a biological evolutionary thing. Biology is totally different for every single individual, you know. Yeah, neurodiversity is like biodiversity it's the infinite number of ways in which brains do things. And so circling back to Cynthia's point now I'd love to hear what others think about this. I think that when you know there's like all the like, having word finding difficulties but I see a lot of, you know, comments on social media amongst people who use the term neurodivergent. They are careful to distinguish the like semantics of well groups can be diverse, and people can be divergent and then gets into like the grammar thing and you're like, Well, how about just learning what words that people use to describe their own words and like, honor that. And it doesn't need to you know and so I think that if, if people use the word neurodiverse to describe themselves. I don't care as much about the grammar or the whatever or the whatever about that it's like whatever word that someone would use to describe themselves. Same thing with if people use, you know, I use identity first language because autism is part of my identity and there are many autistic people who for whom that's not true. And so they use first and first language and you know, I was I was on a panel recently and you know I was asked to comment on the, the controversy, the controversy of person first versus identity first. It's like, ask the people what they want to use and everybody uses the word that speaks to their own selves. And so it's, you know, it's, it's such a, it's like part of neuro inclusive space and you know I don't, I don't, I don't think we get it right. A lot of the time I think it's like commitment to continuous continuous reflecting and you know, zooming out and revisiting and looking at things and perspective taking and all of it is the idea that you figure out how to negotiate conflicting access needs and there are, you know, people whose cognitive access needs are around certain things that their view of the world that derives, you know, the good that they derive safety from like, well, this is the world, this is the way the world works. You're like, well, it doesn't work that way for me. The way the way the world works for me is this way. But that means, and then it's destabilizing so it's like how do you just acknowledge that that's that that is going to happen it's inevitable it's inevitable that because we all different brains. We're going to have these conflicting cognitive pictures of the world. The other day. One of our board members shared a story about how their, their eight year old was in the car with them and their partner, and the eight year old wanted needed music on rhythmic music because that is a trick for the vestibular system to get nervous and the vestibular nerve share a cranial nerve and a lot of times car sickness can be helped by rhythmic organizing music. So, the eight year old needed the the rhythmic music because of car sickness which is a trick a trick we taught them and the other parent driving needed complete quiet in order to like think and like be safe while driving and so the eight year old names, we have conflicting access needs. I was really proud hearing that story. I think there one is correct. We have to figure out how we're going to balance that if, if society had that framework. I think we would have a very different society, just to be fully transparent. In addition, oh, thanks Cynthia. Thanks for coming. You know the, the how do you balance the creating space for people to join conversation to queue safety to know that there's no right to participate all of that had, you know, balancing with like internally. So the, the narrative of and I remember on when, when, when Sarah was a panelist, I don't remember what the topic was but Sarah was a panelist, and they said, you know, I am always like doubting that I'm sorry Sarah I'm not doubting you but but you said something like, you know, I'm, I find myself doubting whether people are going to want to listen to what I'm saying on this panel, maybe I don't have anything interesting to be saying about like, and so many people are with me with so many people, and certainly did with me. And so in the, in a space where there is quiet, and there is, you know, the appraisal that, well people are disinterested they're not engaged and it's, I have to do something I have to do something. Even though there's often nothing to do. It's like, so that's me having to do on learning of like how it's ever been modeled for me in four decades of facilitating a group, actually because depending on the group. There's also like, I don't know it's often don't actually get a lot of opportunities to practice, because if, again, because we all different brains when you have a lot of brains in a space that are, you know, rapidly ID eating and you know, you have an idea connected to mouth and it comes out very quickly like that if that's happening more than not. There's not. There's not practice. So, I'm really grateful. To have this, because when one of the things that I personally really struggle with is how to create this when it's not provided to me. And so I might try something like, you know, hey, I'd really like to hear from someone I haven't heard from, but I actually don't even really mean that. Because I don't actually need to hear from anyone. And this is exactly what Kat just says. I spent the last 30 minutes processing the first video like it's so okay to be processing in parallel with community like that's so cool. And I don't have any other scripts other than I need an excuse to not call on people who are clearly like available for participation, but yet create silence for the people who need it for processing. So, um, parallel processing. Yes, Sierra. Um, I think that maybe my new script is just going to be a queue for parallel processing times. Let's have some parallel processing. Now Amy has a hand raised. Oh, thank you I did not see that Amy. I'm really appreciating the sort of parallel processing. I feel like I've had some things to add to the conversation as it's gone, particularly the difference between diverse and divergent. And there's something about diverse that feels more inclusive of like, oh, we get to all be different and divergent means like, oh, we've beard away from what we're, and that we've somehow. It's our fault and then like it kind of swirled me back to this idea of like, this need to change behavior that we do we even know autism is that we haven't really seen what what that was and that's based on like normative behavior. And how how so often maybe we've met or we've changed the way because we don't want to be disruptive but it's really the feet are actual sensitivity, or like I'll speak my like my actual sensitivity to the environment. And that is is sometimes corrective because I don't necessarily want to be the one, like I don't necessarily want the attention on me if I'm not behaving what would be deemed as appropriate or not appropriate and, and I just think it's so interesting how I feel like with children, there's like this reigning in or they have to behave a certain way, but it's actually probably the environment that's dysregulated. And that it's not necessarily even like sometimes it's our own dysregulation but I'm realizing more about exploring about what it needs to be a part of the ABB community and exploring my dysregulation within like how do I participate in dysregulated states and it's really sometimes the environment is dysregulated because if there is, if there is particularly like in family environments multi people, you know, many people who are neuro diverse and maybe don't even know it how there's like this movement back play of feeling into the environment, and that one can trigger somebody else's dysregulation. And it's more of like when we can have this space to come into, you know, you've been recently teaching me this of like, kind of queuing other people's dysregulation, and then coming back to how that impact your own sense of being in the environment, and maybe even just stop talking to come back in, and just like allow that, that ebb and flow, because I've been like, throughout this whole evening, really dysregulated when I think I'm going to speak and then I'm like, oh, I'm not going to and then it like calms back down and so it's like, I've been watching my own, but the pace to me tonight in this evening has been one that I've been able to like hear whatever what actually hear what people are saying, I've been able to like, watch my own like movement of dysregulation and regulation, and, and just like your honest email around like what what's been a challenge for you or like the or just like naming the thing. And then I feel like that then allows other people. So for me tonight it just feels like there's, if it's like, there's some times where we get to be in the ebb and flow of of our own experience and then just be able to be present with other people and their experience so I just wanted to say I really appreciated that. Thank you. That's awesome. And I think that, and, you know, from a, even a conflicting access needs standpoint there's something about like even the like, because, because, because clearly it's the slowing down that allows so much. There's other like processes of the cortex to happen. And yet like there's, I almost often like have a, is it almost or is it often notice both is is like a PDA response to the, the directive to slow down, coming from outside of me. And that, that, that often it only happens when my own brain slows down, because it's not like firing on all cylinders right now. So, and that's everything's a trade off, there are some real benefits to that. So, as Christa says that was beautiful and you know I could not agree more. Yes. So I, I am grateful to all of you for being being part of our community being part of our parallel processing tonight. And I look forward to kicking off a new month of Brain Club with you. So next week, I'm sorry, next week is August. So, hey, oh yeah it is it's August 1 that's what that's what happens I was to say I'm like to whisk her up. Is it Mr. more July. Anyway, next month's theme is interdependence and next week, the initial brain club will be about unlearning the myths of independence. So I look forward to seeing you then Rachel I could not agree more how is next week August already. Yes, yes, yes. All right. Thanks everybody. Have a good week. Bye.