Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Beyond Stereotypes: Autism Parenting, Communication, and Community with Chloe Barnes

Transcript

Beyond Stereotypes: Autism Parenting, Communication, and Community with Chloe Barnes · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:01
  Speaker A: Hey everyone, welcome back to the most recent episode of the Inch Zones podcast. I love to share and shout from the rooftops these lived stories, the experiences, the one on one interactions that individuals in this country and around the world have and have integrated into their lives around children like mine with profound non speaking autism as well as anyone affected by the autism community. And I am sorry, so grateful today to have Chloe Barnes here of the Alethea Project. Chloe's story resonates not only from a structural sense of what we need more of, but that her desire to create, her mission and project and intent is based on her real world experience as a part time caregiver to a individual with autism. Chloe, thank you so much for being here on the insurance podcast today.
• 0:54
  Speaker B: Thank you so much for having me. I am so excited to be here. How I found myself as a caregiver is very unconventional. I have been involved with the disability community for a really long time. Nobody in my immediate family is impacted by disability, but I've had a couple different best friends growing up who had siblings with special needs. So that population has kind of always been on my heart. I knew that that is who kind of I wanted to, to work with and be around as a professional, but obviously, you know, didn't know what that looked like as a 12, 13 year old. Um, and I got invited at 14 years old to serve at a camp for families impacted by special needs called Johnny and Friends. And they're all over the country, but I went to the Texas retreat specifically to serve as a volunteer. And kind of part of what that looks like for volunteers is they get matched up with a child or an adult with a disability and that can be anything from developmental to physical. It just, it's. We serve anyone and everyone. And so driving into that camp, I was so ready and so excited because I knew I loved working with this population. But I remember distinctly thinking to myself, I really hope I don't get matched with a child with autism because that was the one diagnosis that truly intimidated me. I, I don't know why. Um, and as a 14 year old I was like, I, I couldn't do it. I couldn't do a week with a child with autism. I wouldn't be able to handle the behaviors that, that's for other people, that's not for me. And I'm a believer and firmly believe that God has a sense of humor because who did he match me with? A absolutely phenomenal 8 year old boy with autism. And he was a little bit higher functioning, probably more like a Level two. And that week completely changed the trajectory of my life. Getting to spend those four days with him and getting to know him as a person and learning about his story and all the things that he has had to overcome just at 8 years old, right. Hearing from his mom, all of the different things that they had been through as a family, and getting to see for the first time, okay, this is what autism is like. Wow, this is nothing how I thought it was. And really from there, the rest is kind of history. I went on to really, really, really want to get to know more about this particular demographic, more about the autism community, and just started putting feelers out there. Okay, you know, what are families in my community needing babysitters? Do they need respite? Like, I've got this experience now. I, I think I can do this. And kind of fell into caregiving just completely by accident. A mom in our area and I connected over a babysitting app, and she said, I'm looking for somebody to take care of my son Monday through Friday in the afternoons. And I said, Yes, I was 17 years old. And yeah, that's. That's the origin story.
• 3:40
  Speaker A: No, it's. It's phenomenal because, I mean, you touched on it when you said that the child that you were matched with at camp, you immediately realized that they are living in this reality and truth that is almost impossible to realize the weight of when you consider it's being lifted and lived by like an 8 year old. And I think about that a lot because I think that we put so much emphasis on childhood development and what is the capacity of children to learn and intake, and I'm oftentimes very humbled. And then to hear you echo this as well is that these children are deeply aware. You know, their receptive language is 100%. They are full humans inside. And I think that the awareness of that and what they're carrying can resonate and provide a little bit more empathy and humility for those maybe aligning or trying to learn, learn about children with profound autism and special needs. Because it's through the levity, the heaviness, and the, the gravity of what these children are actually living as children that allows for the truth to come out. And I think that's what I love about your project, is that, you know, this isn't just a storytelling platform. I think that you and I nestle and are very deeply sympathic on that. It's a pressure valve for change. You know, what do you think that pressure actually looks like in practice to continue the road of evolving from the discourse that we're sitting in now and what you hope moves forward?
• 5:09
  Speaker B: That's a really good question. For me, it starts first and foremost with education. Like, as a kid, I was somebody who was so involved in the disability community, but autism was still closed off to me. And so in my mind, I'm like, okay, if I was able to exist in a space for so long where I didn't know anything about autism, how much more so for people who are not at all associated with the disability community at any point? And that's. I mean, that's a huge portion of the population. It just. It's intimidating for a lot of people. And kind of my mission is to communicate to people, okay, A, you don't have to be intimidated by this. They're. They're people just like us. But B, these children and adults have so much to teach us if we're just willing to take a minute and listen and learn. And I think everybody could stand to experience a lesson in what it means to be unconditionally loved. And children with autism exist in this. Such a unique space where they love unconditionally. Like, they are up against so much opposition from everywhere. And it does not matter your background, it doesn't matter who you are, where you come from. They just give it out. They. They give out this love and understanding. It's constant. I don't. I don't know how they do it. They have just an incredible gift. And so even from, like, people often come to me and they're like, it's so amazing that you're willing to. To sacrifice all that to be a caregiver. And I'm like, I don't think you understand. It's not a constant giving. It's a 50. 50. They are giving just as much to me as I am giving to them. As a caregiver, Yes, I provide independence and consistency, and that's all well and good, but I get so much more out of the relationship. It's not transactional. It's. It's relational. And so trying to put that into words and explain to people, okay, this is what you need to understand in order for us to be able to enact change. Like, you have to buy into this idea that these kids have so much to offer. They just need a community. Come behind them and give them that platform and give them that opportunity to be able to participate in a world that has been closed off to them for such a long time.
• 7:14
  Speaker A: Yeah, I mean, you bring up the point of that, of it's not transactional, it's relational. And it's something that I speak to often as well, is that the needs of children like mine and so many other tens of thousands in this country require such a deep presence. Right. Such a deep being where your feet are. Be here. Now, I believe you, when they're exhibiting behaviors that, that are, that I believe are all behaviors are communication in some aspect. And I think that the lesson that's so deeply embedded in this is, what you're saying is it's the relational transaction, not transactional in and of its essence, that ends up becoming the greatest luxury of working with this, this specific population. And it's so hard to verbalize that unless you actually go through the doors of these homes, get into an environment, get into a camp, because truthfully, unless you follow in the walls of a home with children with severe disability, it's very difficult to understand. Take in the external world while you're living in the external world, you have to get so insular to it. And I always say the best witnesses, the best support systems to me and my kids and to so many others are the ones that cross that threshold and put down any sort of agency or control around what their expectations are, because you have to lay those down first. They are not going to respond in any way that you've been societally conditioned to expect. And a lot of that takes a lot of conscious undoing and unbecoming.
• 8:46
  Speaker B: Yeah, I would absolutely agree with that.
• 8:48
  Speaker A: Yeah. So, so, so what would you, what would be some charges that you have for people that, like you said, you're telling them, you're sharing with them how beautiful these interactions can be, how beautiful these relationships can be with children like, like mine, like. And the ones that you've worked with. Tell, tell people what are some, like, first steps that they can in putting their guard down, laying down that control and realizing that they do have the agency to connect? Can you speak to any one or two tips or practical ways in which to give that agency to people that want to know more and learn more?
• 9:19
  Speaker B: Yes. So it again comes down to what you were saying about being present in the current moment. And that is really hard for a lot of people, especially young people. We live in a society that has conditioned us to constantly be multitasking or doom scrolling or, you know, we've got TV going and we're working on homework. It is hard for us to be present and working with the autism community. It forces that you don't have a choice. You have to be there with them in that moment. And so, first of all, being willing to put down the phone and be present in the moment and just practice that right, to whatever extent you are able to do that, whether it is signing up for a week of family retreat, it's. It's three days of your summer. Give three days of your summer and go and be there and sit with those families and experience what life looks like with disability. Or, you know, maybe if that is. Is too intimidating, you go to a church that has a disability ministry and you say, hey, I'm willing to volunteer an hour of my time. How can I help? And just take those small steps. But honestly, I am such a huge proponent of stepping into that summer camp space because it's a bubble. You have to, like, you leave your home and you leave your community and you go someplace that you have never been before and you're there with those families for three days straight, that it will change your life. Like, I cannot tell you how many volunteers that have come out of that space, like myself, like others that have said, okay, that those three days completely changed the trajectory. They, they changed what I knew about myself. They changed what I knew about a disability. They changed what I knew about, about love and about faith. And it, it challenges your perceptions on everything. And that can be an intimidating space to step into. But it's also so inspiring and unique, right? Like, how many opportunities do we get to experience something that's going to challenge us? Right? We don't put ourselves in those situations willingly very often.
• 11:16
  Speaker A: My generation doesn't anyway. But I, I think that again, it comes down to how it is spoken about. I do believe words matter and I do believe in deep complexity and nuance to this. Because you're not saying that it's not going to be difficult. What I do believe, though, is that the power of it expanding what you believe to be true, about unconditional love and about communication and about what real luxury is in life, is what people, mothers and caregivers like, I know of innately after mothering these children. But those that hold vigil, jump into the world, become deep advocates and allies, do have to. I give a lot of credit to that, that community because it is a conscious choice to unbecome as a way to expand. And I think that, you know, my children don't have the luxury of being articulate. So learning to sit with, listening with, to what isn't said becomes this almost, you know, like theological way of looking at the world. But it really is the presence of someone. They are so worthy and I think that that's like this byproduct that you're sharing with these camps or anyone that, that joins as a, as a part time caregiver or an RBT or a one on one aid is that that choice alone is so counterintuitive. Yet you can realize that we've been conditioned to a society to choose the easy route to take the thing that's going to create more comfort. Discomfort is not unsafe. It's something that I've been talking about a lot recently. And being uncomfortable in a situation and then reflecting on it, choosing to do it again and again is actually what will provide expansive nature to your understanding of what love and belonging actually is. And I'm just so thankful that you share your experience about that because it's mothering and caregiving on my side is just one part of the story. You know, it takes those that are outside the system to share what those, what that looks like and what that impact is as well.
• 13:16
  Speaker B: Yes. And you do learn so much about communication by being around non speakers. Like it's actually amazing the ways that they find to communicate so clearly exactly what it is that they're, they're looking for in the like whether, you know, it's amazing like YouTube videos, the gestures, like they, the little boy that I worked with.
• 13:35
  Speaker A: Yeah, I mean they, they, they, they, they have listen. I mean again, these are full human souls. I believe that so deeply and I experience it. I was at a basketball tournament for my older daughter this weekend and a fellow. Well, mom said I was just so in awe of how your son holds his hand, puts his hand on yours and it's not just resting there. You can tell that he's, he's showing like an intimacy while you're holding him and he's watching his, his show while the basketball game's going on to regulate and sort of, you know, drown out all the background craziness that when others start to witness it you become this beautiful reminder of how different and how beautiful other forms of communication are that the general public has no reason to look for.
• 14:18
  Speaker B: Like one of my favorite examples is I'd working with him for maybe three or four months. Big fan of the Wiggles. That was his like constant always on the iPad. And it was springtime, I had allergies. I was sneezing my brains out working in the kitchen and about 15 minutes into my shift he pulls up the allergy song on the Wiggles, proceeds to press play and like dance it around the kitchen. And he's just laughing and I'M like, dude, first of all, no need to make fun of me.
• 14:45
  Speaker A: I would have been like, I feel so much better. Like you, you totally get it. It was amazing.
• 14:49
  Speaker B: Like he, he genuinely so pleased with himself because he, he figured it out. He's like, okay, I want to acknowledge whatever's happening in there and in a way that she's going to understand. So he pulled up the video and played it for me and I'm like, that, that blew my mind. He's 11 years old, right?
• 15:04
  Speaker A: Yes. Oh, it's. And it's. And again, it's not only just blowing your mind. It is this confirmation in real time that they are here with us. They're not in some of their La La Land. My son does this thing where we play. He's, he's a Daniel Tiger fanatic. And so we play all the Daniel Tiger songs during bath time. And one of them is Grown Ups come back and it's like, you know, talking about mom goes out on a date with dad or mom goes on a vacation, mom goes on a work trip and grownups come back and I'm divorced from their father. So there's a few other. Every other weekend that, you know, my children are with their dad and we play this song, you know, after the weekend is they're back with me. And it is, he's absolutely, look at me going like, you came back, I came back, we came back. And it's like, like we sing it together and you get. He gets this absolute elation of like he's even confirming the song. Which makes me just want to give all my money to, to Fred Rogers Productions. Right? Because I'm like, thank you for creating the medium with which my son with non speaking autism can, can, can, can, can convey that he understands something that's so typically developmental for a little 8 year old boy that when mom's away, she's away for work, she's on a separate weekend. But grownups come back. It's like so damn pure and it makes me want everyone to, to witness that.
• 16:18
  Speaker B: Yes. Well, and it's just a testament again to like their resilience and their adaptability because how many kids have the patience to sit there and think through, okay, I don't have the words to be able. I need to say. So I'm going to figure out a way to do it in a way that she's going to understand. Again, just tying back to their. They want to connect, they want to have those relationships. And so many of them are just, they're putting forth all the effort, but we need to meet them halfway at some point.
• 16:48
  Speaker A: Yeah.
• 16:48
  Speaker B: And that's what I tell people. I'm like, listen. They are trying. So the least you can do is just sit and be present and listen because the communication's there. They're there and they're doing as best as they can to try to communicate that. But they need someone who's willing to sit and say, okay, I hear you. What are you trying to say? And just be open to receiving that communication, whether it's through YouTube or a speller device or whatever it happens to be.
• 17:11
  Speaker A: I think also too simply the presence is the support in and of itself. There are, there are times, don't get me wrong, you know, I'm working, I'm writing an article and I'm sitting on the couch with my laptop while Milly watching her Count Von Count from Sesame street do songs in Spanish. And part of it is, is simply being in presence with them. It's not, doesn't have to be constant, like forced, like engagement. Sometimes it's just parallel work and parallel play. You know, as someone, you know who really does, I do better in coworking spaces than I do working alone in my home. That like, there is a lot to be said for just presence of another human. And I think those, I think kids like Milly and Mac and those that you've worked with, they, they are the best answers to why that works. Because just being another person's presence and going, I hear you then thanks for playing that for the thousandth time. Don't get me wrong, I totally know it now. They look over and laugh like it is a shared, even just shared space.
• 18:02
  Speaker B: Yes.
• 18:03
  Speaker A: Ooh.
• 18:03
  Speaker B: And I love that you bring that up. Yes. Shared space. That's another thing that is so important and so unique. So again, I'm going to drop another camp story just because I feel like it just is best illustration. A lot of the families who come for the first time, what they share with us, that was the most pinnacle and like life changing moment for them when was coming into the dining hall and sitting down at a table with their family. And A, not being the only family whose child is stimming or running around or has special dietary needs or whatever. Every single family there has a child who's impacted by that. But B, their child could play music loudly, they could get up in stem, they could walk around if they needed to and nobody batted an eye. They continued having conversations. They interacted with them as they wanted to interact, but they were just there. It was a Community eating together and not making a scene out of a child who was stimming and just accepting them for exactly who they are and what they needed to do to regulate in that moment.
• 18:59
  Speaker A: You know, I'll, I'll, I'll even be the first to admit like I sometimes find myself not stopping their stimming but, but being so overly conscious of it in public spaces that are specifically around like an expected quiet time. Right. And I think what I've learned over time is that the best beauty in it is almost that is like exposure for others that, that I can understand that. You know, guess what? On an airplane, Mac is going to be giggling the whole time because he's so, so happy that he gets to watch his shows for two hours straight right now. That the reaction of others obviously in this world is not our business. Really. And I do believe in somewhat of exposure therapy.
• 19:41
  Speaker B: Yes.
• 19:42
  Speaker A: And why absolutely. Families get outside the walls of their house. Lay down your expectations, put your ego down. It is so natural for the world to see mismatch. It's very natural for neighbors and community members to look or stare. There's so much negativity around. Oh, I get looked at too long or maybe you know, the gaze is, it makes me so uncomfortable because I don't know what to expect of my child's behavior in public. I challenge people so often don't see that as a negative. That is innate human to notice mismatches. It doesn't mean the person has the best, has the wrong intent. And I think if we can start doing more around that because I'm sure you know in a camp situation how beautiful and loving it's received. But like any sort of vacuum, you get out into the real world and the expectations are not there and the, and the judgment and curiosity can look blended. And I think if we can give more proactive. What is the best thing that this person is trying to look at and understand? Maybe they're just. This is the first time they've ever heard a little boy flap and jump while listening to music with their mom. You know, there's, there's a lot of intent based choices to see how the world might perceive children like mine and those that you've worked with beyond the walls of a very safe environment.
• 21:02
  Speaker B: Yes. And it's again, it's just that education on both sides. Right. Like to tell parents it's okay if people turn and look. It's not innately bad. It's still okay for you to take up space just because they may glance over at your Child doesn't automatically disqualify you from being there. Right. You belong at the restaurant just like anyone else. And then on the flip side of that, educating people who are outside of the disability world, hey, if your child is curious about the kid over there in a wheelchair, go talk to them. Say, hey, let's go introduce yourself. Go say hi. If that is what helps you kind of educate your child. And here's how you interact with someone with a disability. It's okay to be curious, but don't turn that curiosity into fear, essentially. And so how do you educate children and how do you educate adults even? Yes, you're noticing something that's abnormal, but we don't necessarily have to respond negatively. Right. Like, let them take up space. That's okay. We. We all have weird personality quirks, and we all do things that, you know, sometimes might make other people stare. I've seen some fashion choices that I'm like, man, that's a bold look, but they have a right to wear what they want.
• 22:03
  Speaker A: You left the house and thought, I look good. I look really good. Yeah, no, and you're like, gosh, that looks for you, you know? Yeah, exactly. So. So, Chloe, talk to me about the Alethea project, then, and where this. Where its roots are and what you're working on right now and currently.
• 22:18
  Speaker B: Sure, yes. So that's great. Alethea Project started probably two years ago is when I started working on it and trying to figure out, okay, how am I going to develop? Because I had an opportunity to attend a conference in London called the Art Conference. And essentially what the purpose of that was was to bring together people and thinkers from all over the world to discuss issues that are prevalent all over the world. So there were representatives talking about, you know, energy and global warming and religion and anything and everything you can think of. There was somebody presenting and kind of addressing, okay, here's how we need to move forward, united and in a way that is going to foster family, foster life, and build a better world. Right. So just a big think tank. Autism was never brought up one time. And so I left that thinking to myself. All right, so these are the, like, the great. Some of the greatest thinkers in the world who are actively trying to fight against, you know, what's happening right now, you know, in the conflict and economy coming apart and whatever. They're trying to preserve society and they're trying to preserve life, and none of them are taking autism into account. And it's huge. It's. I mean, it's everywhere. Every single country is impacted by this. So why wasn't that discussed ever? And another thing that stood out to me was there were maybe two other people that I interacted with over the course of the weekend that were under 40. And just not a lot of young people, none from the United States that I interacted with. Again, set off a flag in my mind. I'm like, okay, all of this innovation is amazing, but A, if we're not talking about a very important issue, and B, if there's not young people here to continue having these conversations, what are we gonna do? And so after that, I kind of came back and I'm like, okay, I'm gonna get online and I'm gonna try to figure out, is anybody talking about this that is not a parent and is not over 50? Is anyone bringing this up? Haven't found anyone yet. And so that is kind of why I decided to launch the podcast, because I wanted to not only amplify the voices of these parents who are trying so hard to create a better world for their kids, but to also show people that you don't have to be raising a child with autism or have a sibling with autism to be invested in trying to make the world a better place for them. You can be a caregiver, or you can be someone with no experience at all and, and still help. Right. And how do you do that? You start by education. Learn what autism is, learn what these parents are facing, learn what these children are facing, and orient your own life in a way that is going to help your community and help the families impacted by autism in your community. Because one in 31. Right. Odds are there's probably a lot of them just in your neighborhood. And so the Alethea project was designed not only to be a platform for parents, but also to be an educational platform to be an alternate voice to Autism speaks and the asan, Because I don't believe they're doing a super good job educating people on the whole spectrum. They're trying, I give them credit for that, but to kind of try to create a platform that speaks for the other 50% of families that aren't high functioning, able to live independently, all that good stuff.
• 25:30
  Speaker A: Talk to me about, you know, when you, you say your generation, and I'm gonna guess this is the heart of Gen Z, right?
• 25:37
  Speaker B: Yes.
• 25:38
  Speaker A: So I was having a discussion about this. I'm in a different context. We're talking about the discourse problem right now within autism space. Right. And there's two sets. There's two. There's two discussions going on all the time. Right. And one which I believe is more rooted in, in, in your generation of Gen Z that I know that you don't ascribe to. But, but what seems solidly there is that autism is for identity and dignity, which I believe is so powerful. And then there's this other conversation about like stability and safety and there's this, there's this discourse disconnect that seems to be most disrupting the identity, dignity autism people because they fear that support and resources from the safety security autism people that I firmly sit in is somehow going to take away their identity or take away their support needs. Talk to me more about your thoughts on what I like to call, you know, the TikTok autism folk. Right, the identity first autism. Autistic individuals who are living independently, who are able to ask for the support they need. Yet it's never enough. It seems to never be enough. And when I think about that from a generational standpoint, I believe that you're challenging that narrative deeply. And I'm in such supportive. But talk to me about your thoughts on that. This identity and dignity autism versus support, safety and care. Autism.
• 27:06
  Speaker B: Yes. So identity politics and autism again. Another pattern that I noticed that I feel like a lot of people aren't talking about enough. Had the opportunity to do a presentation for a college about this. Specifically the logic behind why autism is not an identity and what happens when we start perceiving it as such. And I think when it comes to Gen Z, we are, I don't know why it seems biologically hardwired to try to seek out an identity of some kind, whether that's a religious identity or, you know, LGBTQIA identity or whatever that happens to be. We want a label and we want to belong to a group.
• 27:46
  Speaker A: That's right.
• 27:46
  Speaker B: At least seems to be my. What I've experienced anyway of Gen Z and autism. Maybe I want to say it was maybe 2021 that I started noticing a integration. The LGBTQIA community specifically started bringing autism into their focal point of identity. And it could be because there's a lot of times where there will be somebody who is, you know, of that group who receives a late autism diagnosis or because the diagnostic standard has become so lax that a lot of them just kind of took on the identity. And then around 2023 started noticing another trend of people speaking out against receiving an official diagnos at all, saying that you could just take on the title of autism if you felt like your experience matched autism. And so then I'm like, okay, now we have people speaking for this community and they don't even have a actual diagnosis. And so I took this question to a couple of people who I knew were late diagnosed and I said, hey, listen, I know you and I don't agree on a lot, but I'm curious, why do you feel it's okay for you to speak on behalf of the autism community as someone who's self diagnosed, but someone like me can't? What, what, what is the logic behind that? And a lot of the times the response was fear based because they felt that to question autism, questioned them as a person. It, it's like you're trying to pull the rug out from under them in terms of how they view themselves and how they've constructed their worldview. So it's, it's a defense thing. Like you come after autism, it's not, you're attacking, you're not questioning the autism narrative. I'm questioning you as a person.
• 29:28
  Speaker A: That's right.
• 29:29
  Speaker B: And that's going to get anybody kind of up in arms a little bit. Like it automatically is going to trigger that defense. And so that is where like the inter meshing of identity politics and autism, I think is probably one of the most prevalent issues right now. Because I'm like, if we can take identity out of it and look at this diagnosis objectively, like, objectively speaking, 50% of the population are having a really hard time, whether that's dealing with comorbidities or getting insurance covers or finding care or whatever that happens to be. And so, yes, they need answers and they need research and they need awareness to be raised. The other 50% have found stability, right? They've, they've found a community, they've built an identity, they are happy with their autism. They are, have accepted it's part of who they are and they enjoy having that diagnosis. And so they don't need the same type of research and support. So I think what it comes down to really is that the high functioning group, and they don't even like to be called high functioning, but we need a way to understand it, right? And that's kind of, I'm like, we, we have to give a label to an extent, otherwise people don't know what we're talking about. So the high functioning group, they need to be okay with and realize that these parents advocating for autism research, they're not attacking them personally. They're not saying you can't exist, you can't have a voice, that that's not what's happening here. And it's, it's not about you. So it's a matter of, okay, don't take it personally. Like to, to put it bluntly, it's, it's, it didn't. I know also too sometimes for a lot of these adults, because most of them are adults, if they really do truly have autism, it can be difficult for them to kind of put themselves out of their own like brain space and it's hard for them to empathize. And I get that.
• 31:14
  Speaker A: Yes.
• 31:14
  Speaker B: But you don't necessarily have to bully people on social media, Right? There's a fine line between disagreement and outright harassment.
• 31:20
  Speaker A: Well, I think that you're pointing to what I just wrote about today in an article. Is that from the grandfather of PR, Marshall McLuhan, which is the medium is the message. And we live in a day and age where social media is the medium of discourse. And because of that we are going to listen to the loudest, most viral voices in any given space. And also our identity is basically our algorithm, right? What we, when I open TikTok or Instagram, that is a reflection of me, right? It's a reflection of my inner work. I'm sure that maybe I might probably open your accounts and I'd be like, oh, these are so great. Like I know, follow, follow, follow. But if I open my, the account of, you know, my 90 year old neighbor across the street who probably, you know, goes on Instagram to follow her grandkids, you know, it's going to look a lot different. But that's also a reflection of the medium, right? And what the medium does to one's body and one's thoughts and one's minds and the identity focus of what the today's day and age is, the medium has to be discussed alongside this. But again, that discussion alone creates such discomfort and it makes people so angry that they're being attacked, that they're actually not being attacked. Things are being revealed. And I think that that one of the words I really want to start using more is what does profound non speaking autism reveal to us in the autistic community? What does high support needs, or I'm sorry, low support needs, high functioning autism? What does that reveal to us as a population? It reveals that support is still needed. It reveals that having having other individuals and adults and caregivers and teachers and educators and clinicians and therapists in your life is needed, is you're worthy of that. And it doesn't take away from the realities of others from an identity point. Because I'll tell you right now, my little Milly has the most stunning strawberry blonde hair, just like you. She's a. This little strawberry blonde. She does not give a rat's tush about her hair. You know why? Because she doesn't align with how she looks. She's not looking for any sort of identity. She's just who she is inside. Right. And it's something that I think is a lifelong goal for the majority of typical humans in this world is to get back to the real truth of life. These kids are living the truth of just their inner souls, knowing they don't identify with anything more than what is real and true. And I think that stating that somehow creates a ton of friction for the identity autism community.
• 33:56
  Speaker B: Yes. And I would absolutely agree because, I mean, I've had so many comments and different people reach out being like, well, we trying to invest in causation research or trying to research how to better support profound autism is like trying to do research to change someone's hair color. It's just part of who they are. And I'm like, okay, listen, your hair color doesn't cause you to elope into traffic. Like there, there is a difference.
• 34:19
  Speaker A: Hair color doesn't mean that you're going to go into open water in a lake and drown before the age of 14.
• 34:25
  Speaker B: Right. That is what. I don't know why they have a harder time understanding that. That it's not, it's not about trying to change the autism. It's about trying to make the world safer, make them safer, kind of give them supports to where they're not having gut issues and they're not having behavior issues. And that's what the root of causation research is. It's not how do we eradicate autism, it's how do we eradicate all these different comorbidities and complexities that make it almost impossible for these children to exist in their own bodies. That's what the causation research is geared towards. Well, and I think having those conversations because again, you get trapped in those little echo chambers, right. And you just, you don't know what you don't know. That's kind of what I see.
• 35:08
  Speaker A: Well, I. Sometimes it's ever enough for the, for the other end of the spectrum, like what, what will ever be enough? It's, it's almost like going to, you know, like a narcissist who you've given everything to. And it's never enough for them that their supply is needed from the drama and swirl. The supply is needed based on your reaction to, to their identity that they are so hell bent on being the only way in which to live. And so when you and I and other people in this space that I'm not, I, I will, I'm not, I'm not at all an advocate of cancel culture. I really believe that every voice is oriented at the table. I firmly believe that refusing to let one experience stand for all the cost of people that insist upon that is not theoretical. It's actually the cost then gets born into the families. Right. That they're trying to actually secure the basic care and safety and a future for children who can't do that for themselves. And I just don't think we can keep affording to get that wrong. And at some point the loudness has to be challenged, even if there's a destruction of identity, if that makes sense.
• 36:15
  Speaker B: Yes, because we are told, I mean, they call us Allistics, right? People who are not autistic. At least that's the name I've been given. And they say, you know, if you're going to learn about autism, you're going to learn about autism from me. You're not going to listen to these parents, you're not going to listen to these siblings, you're going to listen to me. And that is the expectation. And so in my mind I'm like, okay, we need other people who are speaking on behalf of these parents and these siblings because Allistics are told to listen to the high functioning end of the spectrum. And if we don't get in and we don't buy into their worldview, then we are not autism allies and we are not supportive of the autism community. And that's the narrative a lot of people have bought into. So kind of what my goal has been is to challenge that and be like, no, we, we can listen to parents if we want to because they represent a huge majority of people experiencing autism and their children don't have the language to be able to share about their experiences. Why wouldn't you listen to parents? They are, for lack of a better word, their kids voices right to us. So it's, it is unfair for that end of the spectrum to discourage people from that. And I think what I am hoping to promote is that it's okay to, to not buy into everything all the time. It's okay to ask questions, it's okay to get outside the echo chamber. It doesn't make you any less of an advocate ally, support. It actually is going to benefit these families, it's going to benefit these kids. It's not something that we need to be Ashamed of.
• 37:45
  Speaker A: That's right. It's about capacity and the capacity of what support looks like and what the needs are. And even. Even the ability to hold the conversation should, be, like, determinative of the need. And so I think that. Well, first of all, I just. Before we wrap up, I'm so thankful that you're leading, in a way, a generation that might not be parents themselves, but I think that might be what the special sauce is in your work. Is that because you haven't experienced it as a mother yet, there's something incredibly transformative about getting close enough to it before you experience becoming a parent yourself. Because I can only imagine what that does to your brain and heart and your narrative of the choices that you have as a. As a single person to then really evolve and embrace possibility for the future. Because I know I'm a. I'm a geriatric millennial. I'm 42, almost 43 years old, let me tell you, growing up in the 90s. I'm sorry, your algorithm is showing you. It was a. It was wonderful. Okay. There was no talk. Yeah, we have no. We have. I have all the stories. I've got none of the videos. All the wonderful things of the. Of politics and life was good. The byproduct of that is that we didn't step into doing really hard things because we were sold a narrative and that it was always going to work out how it was going to work out, and that there was no conflict, there was no change, there was no chaos. If you just kept doing what the 90s told you to do is just keep on dreaming big, Pursue what you can do, be all that you can be. Guess what. Life hits you hard. Whenever the world and mass movements and time does what time does, it changes up the narrative. And so I'm just so thankful that you are proactively changing up the narrative in a generation that I think is so deeply bound to identity. And I'm very, very thankful for your work as a mother to children on the severe end of the spectrum, it is not lost on me one bit that every voice in this arena counts. And I believe that those of us that are in the arena can silence those that are, you know, in the peanut gallery trying to credit this kind of very truthful, real work. So thank you so much, Chloe, for all that you're doing.
• 40:01
  Speaker B: Yeah, thank you. And honestly, it's been a privilege. That's what I tell a lot of people. Like, I am so fortunate to have received the opportunity to step into this space and exactly like you said, to be able to learn from these incredible moms and dads, too. But mostly moms are the ones that have had a biggest impact on my life. And just to see, I mean, they just go to bat for their kids every single day. And so the fact that I have the opportunity to get to witness that and to get to share with other people all of the incredible things that I've gotten to see, it's just. It's hugely profound and it's hugely impactful for me. So I'm very fortunate to be here, honestly.
• 40:37
  Speaker A: I'm so thankful for your work. We will be hosting all the details where you can find Chloe online on social media as well. Because I do believe that the more we create tribes and pockets and waves of individuals in multiple different generations, that is how this work snowballs and that is how this work becomes prolific across the United States and beyond. It's going to take these pocketed little communities of the Inchstones of your project and constantly pushing that needle forward because at some point, the growth of that goes up that exponential wave and we're going to be here for it. I really do believe that we're going to be here for it. So thank you so much. And we will again post everything on the episode summary of where to find Chloe Barnes and her work and her project. And until next time, everyone here on the Inchstones podcast,