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The Profound Autism Conversation We’re Not Allowed to Have with Tyler Hudson · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to an incredibly special episode of the Inchtones podcast. Today, Tyler Hudson is here. And if you are a parent of a child with profound autism, you will be thrilled to be able to have more of an intimate conversation and experience that through this episode today. This conversation sits right in this tension that so many families feel but don't always say out loud. Tyler and I are going to explore what real advocacy looks like. Is it acceptance? Is it autism prevention? Is it both? And Tyler believes that autism has two very, very distinct voices. Those voices focus on the here and now. Inclusion, support, dignity, making the world more accessible for autistic individuals. And also that second voice, which aligns more with what I tend to focus more on, is about the future, asking really, really hard questions about causation research and whether prevention is tied to the advocacy campaign and the conversation. Tyler, you. You celebrate autistic individuals like I do. And I celebrate my children every day, but I don't glorify that, that disorder. And I am so excited to sit here in conversation with you today. We write and share very similarly, and I know that both of our voices can amplify the uncomfortable truth surrounding profound autism. So, Tyler, thank you so much for being here today on Inchton's.
• 1:23
  Speaker B: Thank you for having me. Inch stones. I love it. That's what. It's not milestones, is it? It's centimeters.
• 1:33
  Speaker A: There's no way through anything where you snap your fingers and it's a mile jump. There's not a single chance. And the fact that not a single parent. I was going to say in this country, but a single parent in the world, really, because I know you're based in Australia. There's not a single parent that doesn't have the word milestone embedded in them. Day one of bringing a child home from the hospital and to divorce that profound autism. Parenting is like the challenge of our lifetime.
• 1:58
  Speaker B: It is. And it speaks to the, you know, the difficulty. Look, my son is. He's just turned 18, so he's officially an adult. And he has the same capacity mentally that we can see that. We're aware of that, that. That is functional in society as he had at 2 years old. So they are inch. They are inch stones. You pay attention to the little nuances. But we're not. We're not discussing these major life milestones. And that's. And that's all part of. Part of the process of. Of having a child with profound needs is you. You just celebrate the. The little wins. And that's what we. We do, is we celebrate but it's, it's definitely a long journey, that's for sure.
• 2:46
  Speaker A: You know, one of the things that I love that you hit home about so often is the unconditional love that we have for children like ours, like Liam and Millie and Mac, does not mean that we can't be open to what a painful experience it is to know that their life is so dependent on our hypervigilance as parents. Yeah, and I always think about this from a primal sense, like primarily as a woman who becomes a mother being, taking care of a newborn, nursing round the clock, just that mode of mama bear protective nature. I remember holding all of my newborns and remembering reading that, you know, when people come to visit, I had such a hard time with like passing the newborn over. And that's a primal sense. And I wonder what your thoughts are on the primal protective nature that I think fathers have to their children as well, that doesn't, isn't allowed to, to lessen in profound autism parenting. Could you talk a little bit about that?
• 3:45
  Speaker B: Sure, I'll do my best. I've. I believe, you know, women are more typically a nurturing, a caring support to a child and fathers tend to focus on provision and problem solving. Now obviously you can't draw a line and it's not the same every, it's not a gender specific role, but usually these are the partnerships that find each other. You've got a carer and you've got a provider and as a father with a profoundly autistic child, that provision aspect gets highlighted. And as a problem solver, you've just been presented a problem that there's, there doesn't appear to be a solution to and that can, can wait on your soul to a debilitating degree as, as we experience. I'll just be completely honest with you. I, I grew up in small town Texas. I had very religious upbringing, was part of the prosperity gospel, which is which the belief is that it's God's job to make you healthy, wealthy and blessed. And if you're not healthy, wealthy and blessed, it's your job to remind God of his job. So when you're presented with a child with autism, my son was diagnosed at the age of two and you think, okay, this is now my role is to fix him. And that rubs people the wrong way, but it sends you on this journey of how do I, how do I take my child and lead him out of this existence into a different existence. And for us that manifested itself in chasing a miracle from God which never came. And that's all part of the processes of, you know, which I will just say grief. You can't accept that this is reality. And so you begin going through the stages of grief to, to process it. And it's taken us, well, my son's 18 and I would say it took us 16 years to, to get to where we are now, which is where we've accepted it, that this is what life is. And, but you still have the same innate desires as a, as a father to provide and protect and mom's still got the same desires to nurture and care for. And that's not going to be an issue because my son's going to be with us forever. So he'll always be nurtured and cared for. But my role as a dad, what do I do? I'm not a support worker. I don't want to be a support worker. I want to have a protege. I want to invest in my son and have him supersede me. And you know, you're slowly dying to all of these perceptions of what you thought fatherhood was going to be like because you now have this person who requires one to one care life. And you know, for me, in the, the deepest, darkest parts of our grief journey, when I was, when we'd, you know, accepted this condition and you know, we got into the depression and the isolation and I just worked because I didn't feel like a good dad. I didn't feel like a good husband. I didn't feel like I had any purpose to serve other than to provide. I don't know what the future brings, but I know going to need more money. So I'll just work and I'll, I'll just do what I can that, that I'm drawn to because I just want to feel good at something and I don't feel like a good dad or a good husband. So I'll just, I'll just bring in money and that's not a great strategy for, for a healthy marriage. And it nearly cost us my marriage, to be honest, because you never stop grieving and that's, that's where we're at currently and just trying to figure out how to put this energy into making the world a better place for. We've accepted our, our son's condition now, now what does it look like for future generations? And I've begun to step into this minefield of let's talk about prevention. Not in the eugenics sense, you hear me? Not in the eugenic sense. It blows my mind that people can't understand. We're not talking about aborting children that have a genetic predisposition to autism. We're talking about, you know, if. If genetic vulnerabilities are the gun and environmental triggers are the bullets. Let's just identify some of the bullets and let's pull them out of the gun, shall we? Like, what's wrong with that idea? But it challenges people's. Yes, go ahead. So.
• 7:46
  Speaker A: Because. Because I could not agree more. I said. I said exactly. Nestled so deeply next to you and your wife on this. What, What I hear, what rises in me always, is you and I are in the ring. We're in the arena. We're discussing it. We're talking about the complexities of what even being able to talk with such truth and power behind it requires going through the phases of grief, which arguably for me and for you, will always hover. But they become integrated in your system as a whole so that your orientation to life expands because your ability to process grief. Right. How do we. How do we. As profound autism, let's say truth tellers per se, share an example like that, knowing that we're not talking about eugenics, knowing that we're not talking about abortion of autistic fetuses, but how do we tell that truth to people who don't understand nor desire to sit next to the acute realities that you and I live. Because that's something that is so uncomfortable and I. Discomfort is so. Well, listen, we in modern America, all of. All of human civilization has led towards comfort. How do we have more comfort? What's comfortable? What's comfortable for you? You know, even in therapy talk. Well, that's not comfortable for me to talk about. We've become like. We've become cloaked in conversational comfort, relational comfort, boundaries, boundary talk. That. How do we. How do you and I. And share examples like you're saying about why we want to discuss the cause or. And possible prevention without. Without negate. Without having to have a conversation about people's comfort. And that. That, That's. I don't know. How do we even go into that?
• 9:25
  Speaker B: Yes. Well, you've highlighted the problem. What the solution is, I don't know. I have just recently written a book and I'm hoping to release that soon. It's called the Missing Lyrics. My son's name is Lyric and he's nonverbal. No, the irony is not lost on me. Hearty har har. But, you know, he was reaching these milestones right till he was receiving. Well, until he was about 2 years old and then he Just stopped and he, and he went backwards. His voice went missing. And as I tell our story, you find out there's thousands of parents that have the exact same story. And where are our children's voices gone? And how do we get them back? And, and how do we keep this from happening? Let's just observe. Let's, let's take in all, all the data surrounding this regression into autism and let's analyze it. But the issue, the issue in society is exactly as you say, we seek comfort. And I have this theory that we are developed a societal autoimmune disease. So autoimmune disease is when your body begins attacking itself and produces any host of adverse reactions in your body and your immune system is fighting itself. And I think that that's what's happened in society with, take cancel culture for instance. The we perceive the wrong thing is the threat, right? So Dr. Novo out of, I think it's UC Davis. He released this study recently where he's examining this signaling molecule called the eatp. And when the body is under attack, this signaling molecule runs and alerts the immune system. Hey, something's going on here. And it puts the body's defenses, the body's immune system into defense rather than growth. And so your body's receiving these warning signals and this signaling molecule is just going haywire because it's like something's going wrong. Something's going wrong. And that to me is a picture of what's happened in society where you've got parents of profoundly autistic children saying hey, something, something's gone wrong. Let allow our story to help society, allow us to help the societal autoimmune system. But what happens is we get attacked. It's the body attacking itself. We've been sent out as a warning signal and you're rejecting our warning and you're instead attacking us. And that's, that's an autoimmune disease and everything is perceived as a threat. And that's I think what happens to the stories of those that want to highlight that something's gone wrong and we would like to prevent this for future generations. Not in a eugenics sense, but in an identifying the triggers and society because they're seeking comfort so much, they just reject our reality. And they don't want to hear that story because it's too uncomfortable, because you can't sit next to it. You don't want to be in the room with it because it could happen to you. And you want to reject that reality because it scares you. And I think what that what that is signaling is that society is actually having a grief response to autism. And we don't want to call it an epidemic, but I firmly believe we're in the midst of a neurological disorder epidemic that's steadily increased. Yes, there's increased awareness, yes, there's, the diagnostic criteria have changed, but it has grown exponentially. And I think history will look back and go, something happened here in society. What was this? And you see that by talking to educators, the kids in the classroom, like they need as many support workers as they can get in here in Australia, one in six boys, school aged boys, is receiving funds from our government in support for autism spectrum disorders. One in six, that's an epidemic. I don't know, I don't know how you can deny it if you want, but, and that's, that's what society does. We're starting to go through these phases of grief which starts in denial. Like we're denying that we have a problem. Those of us that have gone, gone on the journey first and we've processed all the way through, we know what stages are coming, you know, denial, anger, bargaining, depression, acceptance. And so we've, we've come all the way through and so we can look back and go, all right, so society's just at this stage here, they're just denying that we have a problem. And that's why. So when you zoom out and you ask the question that you ask, how do we, how do we get the, the reality of our lives into the mainstream? Well, it's going to be very difficult because you've got a society in grief and they don't want to hear our stories. So.
• 14:03
  Speaker A: Okay, so I have to, that's the question. I feel bad I didn't prep you with this because this is, it's all, everything you said is just, it's so spot on. And I'm, I would love to. Well, I wish your book was coming out tomorrow because I think that that processing through the lens, processing this massive topic through the lens of grief, what I, I think would soften the masses because grief is something that the majority of people will say, yes, you can't, you can't erase grief from the human experience. And so I hope that this becomes a bridge because you're absolutely right in that when you pro, when you go through it for yourself, leading, living in such a truthful situation, that profound autism really, really forces you to do whether, whatever your timeline looks like, the majority of people in this, on this cannot say with the straight face that grief doesn't Exist. So I, I think you're. They hit the nail on the head there, that we are going through a massive cycle of grief as a human species. I have to ask you, have you ever read the book by Eric Hoffer? It's like it was printed in 1950 something, and it's called True Believer, The Thoughts on Mass Movements, the Nature of Mass Movements.
• 15:12
  Speaker B: No, I haven't.
• 15:13
  Speaker A: Okay. Because this, this, this is like probably the book of all books for me this year. He argues that mass movements, like, often attract society to do a few things. We're searching for certainty. We are searching for belonging, and we're searching for meaning. And it sits so tied to, like, ego. Right. Because ego is always searching for certainty. We need to make meaning of our life, and we need to belong. And because of profound autism, jarring sort of this path towards certainty and, and, and understanding and acceptance and belonging, identities become fused with these causes. And so there's a lot of disagreement in what the existential threat actually is, even though their intent isn't bad. And I think that what you and I, and I know a lot of others in this space right now are trying to do is to separate or how there's a lot of fusion with identity politics right now and how people get very moral. There's so much moral posturing around. Well, I'm a good person. I'm a good. I believe this, and I believe there's a lot of moral posturing to it. But when you're not cycling through and understanding why you're so fused to that identity and the moral posturing of your. Why you, Tyler, are hitting on something that's so primal to all humans, you cannot run away from, which is grief for who you are and what you are and how you are and who you are and how you came to be. And as parents of profoundly autistic children, we don't have the luxury to run away from that.
• 16:38
  Speaker B: No, we don't. And when you've come through the grief process and you've accepted it, you then you see reality for the first time. It's almost, you know, we spent 10, 12, 13 years. I mean, these stages, they don't happen quickly. Like, it takes time. I mean, we lived in denial that not that our son had autism, because that was obvious, but we lived in denial that he would have autism for the rest of his life. Because you think your goal is yet your, okay, I'm the provider and the protector. I'm going to take my child by the hand and we're going to walk out of this dark room into the light. And you live in denial that that's not going to happen. Like you said, this is, this is my goal. I'm going to heal him. I'm going to, we're going to whatever. Whether it's God or whether it's medicine or whatever, the goal is them living a full life when you and that and that's just part of, so that's part of the bargaining phase of grief, you know. And you see that in society now with the call to celebrate autism. You watch it go from. It started as autism awareness. We just want people to be aware that kids like ours exist. Then it merged into autism acceptance. We want society to be accepting of autism and now it's bordering on autism glorification. We proselytize these stories of miraculous ability. Telepathy tapes for instance. Unreal like amazing podcast. Love it. Don't deny it. However, that's not the autistic experience for most people.
• 18:10
  Speaker A: Centering that becomes a balm for people's uncomfort and discomfort. I'm sorry, like I don't I again, I mean I, I, I had Kai on the show recently. I love her work. I see, I see feel, experience the, the sixth sense of children like mine who are, are so peaked to a shared consciousness period. That's my experience. But the questioning, questioning of why our children are how they are and where curiosity to why they are how they are and why they are never going to be independent. And when holding complexity becomes taboo, that's where I get my tin hat on and go. We ride at dawn because I can't longer only having to center the positives, only having to center the things that make everyone else feel comfortable to the reality that I have no choice but to sit in every day and when the conversation around the discomfort shuts down. You know, I remember last Easter season a woman with, I mean she was. She's not a content creator, she's not a influencer. She's not sitting on social media to do anything but just share. Her family talked about why she couldn't go to mass on Easter Sunday with her son with profound autism banging his head into the wall. And she got burnt at the stake for sharing that reality. And the reality of the truth being than a position where people stone and cast you out is really scary for me and for my children. And to your point about what you will live with forever, the permanence, the permanence of our children's realities being necessitated by my ability to be alive, to care for them and that we as a country here in the states, that you grew up here, we moved facility level care into the home and then said, but you're such a good mother. You're such a good dad. Oh my God, you're so good at this. Oh gosh. What it takes to do you. We move facility level care into the home and pat the pat. Pat women and men on their shoulders and said, well, this is what you wanted, right?
• 20:11
  Speaker B: Yeah.
• 20:12
  Speaker A: You know how and thoughts on that and that.
• 20:14
  Speaker B: Well, that just echoes, you know, what you talked about, the stoning. Like that just echoes that societal autoimmune disease. We, we don't like the reality of this, so we want to attack it, we want to callous it, we want to blister it, we want to separate it from us because we don't want that here. And that's a grief response. And that. That move to celebrate autism is they. Well, talk about moving it into the home. You know, my. I just recently had a comment that someone said, I think your son's great. I think you're a dick. I think I posted that it's because I'm speaking about the reality of what life looks like. And you want to see the highlight reel so that it reaffirms your idea that autism is to be celebrated. You're actually. And I called this person, I said, actually, you just follow my page so that you can be entertained by a disordered person. How does that make you feel? Like that you don't want reality. You don't want to be accepting of autism. You want to indoctrinate yourself into you the worldview that makes you feel good about it. And that's the bargaining stage of grief. You, you, you start rearranging your mental framework in order to say, my child is supposed to be this way. And the reality is it's based in fear and helplessness because you don't feel like there's anything we can do about it. So it serves you best to just accept it and just celebrate it because it's scary, because people are scared. That's the denial. It's the anger. It's the bargaining.
• 21:48
  Speaker A: Well, project. I mean, yeah, projection, especially in the online space. I mean there's so much to discuss on that. But the, the projection that they so unconsciously do is such good data collection. Right? You actually aren't a dick, Tyler. He knows he's a dick.
• 22:01
  Speaker B: That.
• 22:02
  Speaker A: That's what's so interesting about it. Is that like any sort of forward. I don't want to say. I mean, I guess the term is like cyber bullying or whatever, but like any sort of focus where the projection of a label or a. Or a sin is thrust from a person taking in a story to the person living the story and then calling them any number of names or asshole, dick, whatever. Like, I've been. I've been told that I'm a. I'm a child. You know, I exploit my children for what I share online.
• 22:31
  Speaker B: Yep.
• 22:32
  Speaker A: And what. What. What's so interesting is that the exploiting that I find whenever people look deeply at their own lives is actually, what, false narratives. They're living within their own. So when they find accounts or people standing in such truth and sharing that truth with. And holding such complexity, their inability to do so is too uncomfortable for them to even process alone. And they're not even doing it live. They're. They're trying to just project that the discomfort of the lack of ability to hold complexity part of that bargaining cycle of the grief.
• 23:02
  Speaker B: I do. Yeah, because it's all. It's all seeking comfort. It's. It's coping mechanism, your rejecting reality. And you're just trying. You're just trying to rearrange things where everything makes sense, because as you said, we crave certainty. And if someone's worldview disagrees with yours, you want to argue. You want to. You want to push back and forth because you're trying to figure out, am I thinking about this correctly? And then you curate your own views, you curate your own news that reinforce your own ideas so that you. Okay, no, no, no, I'm not crazy. Yep. We're gonna. We're gonna celebrate this. That's what we're doing. These guys are the enemy because they want to prevent it. But we. That's too uncomfortable. So we. We're gonna attack them, and we're gonna stay in our own bubble. And I think I did. I did pull this up when I was writing my book. The autocorrect kept capitalizing autism. And I'm like. I wanted to not capitalize.
• 23:56
  Speaker A: Really?
• 23:57
  Speaker B: And, yeah, so I was like. So I took to the Internet for goddess issues. Should autism be capitalized or not capitalized? And this was the. This was the AI summary that came up. Generally, autism is not capitalized as it's a disorder, but many in the autistic community and some organizations capitalize autism to signify it as a distinct identity, culture or way of being. So it's an identity first language capitalized autism and autistic to reflect that it's an integral to a person's being. Not Just a medical label. And this, this is the. Where we're at in society that it becomes an identity first progression that you, you don't, you're not Sarah with autism. You are autism and you're Sarah because you projecting, because you're proud of it, because you're going through this process. It's what's, it's what serves you best. So you lead with that. I am autistic. And that's where the minefield comes in when actually autistic people begin putting their rebutting your perspectives. It's because they think they are their neurological disorder and it's what makes them unique. They can't see themselves apart from all of their unique sets, set of characteristics. And that's fine. It's beautiful. It's lovely that you're so accepting of yourself and you should celebrate yourself where the sticky point gets. And this is what I, what I like to talk about in my, what I call my first voice of advocacy and my second voice of advocacy. Would you willingly, as an autistic person, would you willingly take the struggles that you faced and intentionally pass them on to unknown others? Most people would say no. So how do you get from, okay, I get that you're living your, your life and you have to, and that's great, but if you wouldn't willingly pass on your struggles, how are we going to get, how can we make that happen? It's through knowledge around causation. It's through difficult conversations that people don't want to have. But that's the information we need so that you don't pass on your struggles to countless unknown others. And I call that the second voice of advocacy, which is focused around prevention, avoiding the triggers that, that cause children to regress into autism. But it's such a minefield because of this identity first language surrounding autism. And you know, you know, I, I
• 26:31
  Speaker A: got to get into the identity stuff because. So my partner does a lot of work on the theories of John Boyd. I'm not sure if you're, if you're familiar with. John Boyd was like a military fighter pilot in the mid-1900s. He created the OODA loop. You know, observe, orient, decide, act. And it's much more, it's much more of a dynamic model than just this round circle. But the, the engine of it is or is orientation like your orientation to the world and how we, you, me, every human being on this earth, how we orient to the world is the lens which we interpret reality. Right. So my orientation from your orientation, we have a shared orientation around profound autism, parenting. My identity as a female, as a woman and mother goes into my orientation, my genetic heritage, my lived experiences before I, you know, my being a. Like I said before we recorded, geriatric, being a millennial, you know, this all goes into how I orient to the world and identity, how I identify as a 42 and a half year old woman living in central New Jersey who never in a million years thought she'd be raising her children in New Jersey. I can't. It makes me every time I say it, but I'm like, I spent a lot of time in New York City. Okay. Anyways. But I say that because that all goes into our orientation. And I think what we're living in right now, to go back to your point, is that we are so fused and we are so certain that our identity is how we oriented the world, that we will do anything in our power to not allow for the other things that are in our orientation to matter, even though they do matter, they are a part of your orientation. And you and I both can sit here all day long as people who have processed our identity through the lens of expanding our orientation through our children and who they are and the realities of it. And if you beg of someone who is so fused with their identity to expand their orientation beyond that, I mean, they will come at you with everything they have. Because if they don't protect that, everything shatters. The house of cards falls.
• 28:36
  Speaker B: That's correct. Yeah. So at risk of being.
• 28:41
  Speaker A: Cause it's so heavy, it's so dense. But when you confront someone and with. Around their identity or their discomfort around the truth of profound autism as it relates to their identity and if it comes into conflict with them, because honestly, everything in life as a human's conflict, everything, even you and I, in this conversation. Conversation, Dialogue is conflict. I'm not you. I have no idea how your entire life has gone since you were a little boy. You have no idea how my life has gone since I was a little girl. We are in conflict with our realities right now. Even though my, My belief in your reality allows us to have a much greater dialogue in what we share. Right. So talk to me more about how we share as profound autism parents about that identity as a way to forward the conversation around acceptance and prevention.
• 29:32
  Speaker B: I quickly want to talk about this identity first thing before we move on from that.
• 29:37
  Speaker A: Yeah, yeah.
• 29:38
  Speaker B: You know, autism, the Greek, the root word is autos, which is Greek for. For self. And you know, Leo Canner coined that term because these children, who was. Which was very Rare at the time, by the way. They had retreated into their own self worlds. So that gave rise to the term autism. It's just self. You're encapsulated within yourself. And when you take that and you broaden the diagnostic criteria and. And now people that, you know, had. We can talk about the diagnostic criteria later if you want, but. So now that we've handed people this label, they wear it as a badge of honor. Often that identity first politics, in that sense, in my experience, has become autism in its truest form of selfism. You. You actually. Those actually autistic people. And I say I. I use the hashtag actually autistic because that's what started popping up in rebuttal to some of my commentary that you need to listen to autistic voices. I'm like, I'm trying to listen to my son. I can't, because he can't talk, he can't spell, he can't touch. You know, like this. This is the whole point. We want the same thing. But you're wanting me to think about you and your quirkiness, whereas I'm trying to assist my son and his profound disability. So autism for you is about you. It's selfism. It's. It's that badge of honor that you wear because it's your identity.
• 31:07
  Speaker A: Can I go a little dark? It's narcissism.
• 31:10
  Speaker B: Yeah.
• 31:11
  Speaker A: Can I say that?
• 31:11
  Speaker B: It is.
• 31:12
  Speaker A: It is a. It is a dark, dark, narcissistic way of centering because it centers the self over all else.
• 31:20
  Speaker B: So then what do you do with that? And this is where I. This is probably the biggest minefield and I have. I'll unveil it here because I've not said it publicly, but I honestly don't know if autistic people have the capacity for empathy yet. They're the ones ruling the conversation. Their slogans are nothing about us without us. My perspective is completely discarded because I am not autistic. So you're letting a group of people who. We love them and we celebrate them, but they have commandeered the power of conversation that could lead to mitigating disorder in future generations because they don't have the capacity for empathy. And it's very possible that, you know, they say, don't talk about us without us, but if you continue to behave in the way that you are thinking about self, we may have to discard you from the conversation because we don't want to. But you're not exhibiting the capacity to not transfer your disorder onto countless unknown others. Because you're bound in identity first selfism.
• 32:31
  Speaker A: Correct.
• 32:31
  Speaker B: And we have to take a step back and just say, I might have to pry that power from you in order to assist others. I don't want to. What I would love is your help.
• 32:44
  Speaker A: Right. But that becomes. Then we. Then we have to become. What you just described is a parent to a toddler going, I told you how to use X. You keep using it in a harmful way. It's now going away.
• 32:59
  Speaker B: Yes.
• 32:59
  Speaker A: But then we become the caregivers of us sitting on the, on the extreme side of profound autism where our children, I mean I speak just from Millie and Mac. They do not survive 24 hours without me or a caregiver, period. So their existence is.
• 33:16
  Speaker B: Is you facilitate their survival. So the conversation includes you because you. You are into.
• 33:24
  Speaker A: I feel, I feel sad that this is a reality that emerges consistently in my life. My. My son wiggled out of his car seat and, and the. And the strap across it and my son was running out into the street. That is me as a human just admitting that this is what kind of hyper vigilance it takes to keep a child profound autism alive. So when they say that like that we can't be a part of the conversation. The children that, that they're wanting to support would be dead without us. And I don't mean to say that in a way that makes. That centers near you at all. I don't want to be part of this conversation. I have to be because my children would be dead. And it's so, it sounds so dramatic, but it's not. When you, When I saw the look on my partner's face when he came in clutching my son, that experience. Experience does something to your central nervous system. And when you know that you are going to go through life and my son is going to grow into the size of Lyric one day and is going to get stronger and stronger that he. That that is going to happen again. You. You do brace for impact. That is a central nervous system response. That's not an autoimmune disorder. That is real. That is. That is life or death. And that's what I, I was just writing about this conversation that you're saying about, you know, the actually autistic crowd is. I'm not saying. Saying. You're not saying that your experience doesn't matter and your voice doesn't matter. However, you are living an independent life.
• 34:49
  Speaker B: Yeah.
• 34:50
  Speaker A: Period. You are not. How do we. Because I know we were emailing back and forth about this before we recording right now. I've Written a piece calling, saying that we should separate the spectrum. And you back and you said, I, I have different feelings on this because I. Because in separation we're saying that, that the disorder is, is different when it's really just a spectrum of severity. So let's talk about.
• 35:11
  Speaker B: I'm not a doctor, not a scientist, I'm a dad living in the wilderness of Tasmania. All I have this, these are just my opinions. When our son was diagnosed in 2010 with autism, when, when autism was still autism, the DSM 5 changes came in. I think it was 2013. And I remember my wife told me, she said, oh guess what, they're moving Asperger's syndrome, it's just all going to be called autism now. And my response was interesting. Good. Yeah, that's great. My initial response when that news came out was this is good because I had an innate.
• 35:50
  Speaker A: How old was Lyric then? How old was Lyric then? And where were you and your wife on the grief timeline?
• 35:56
  Speaker B: Yeah, 2013.
• 36:00
  Speaker A: Where were you?
• 36:01
  Speaker B: He would have been four years old. We were still very much in the. Well, with. I paint this picture in my book, but the, the. You don't go through the seasons of grief in, even in order or singularly being all of them at the same time. Right. So I found we were always spinning this plate of denial, always spinning this plate of anger and always spinning this plate of bargaining. So you've got these three plates that you're constantly keeping in the air. This can't be reality. We're working as hard as we can to fix this and God, I'm angry.
• 36:39
  Speaker A: Yeah.
• 36:40
  Speaker B: But that anger manifests itself into bargaining energy of working. Like we're gonna, we're researching everything, we're trying everything. We're trying every diet, every medicine, every fad, every spiritual practice, whatever. It all manifested itself in trying to control the situation. So when the DSM changed and they put Asperger's in with, with autism and said that's just going to lump it all into one thing, I said, oh, well that's, that's good because then there will be more help because this will apply to more people and they'll realize that this is an issue that we need to further investigate. So I, I would initially thought it was a great idea. And I've. So from a medical, scientific point of view, I have heard doctors like Dr. Corporations, Paul Thomas, he's. He says that everyone in the medical community agrees that it's all a part of the same disorder. In reality, this is the misconception Autism spectrum disorder that is a category of disorder. Autism is what describe to describe to me without listing a comorbidity such as.
• 37:51
  Speaker A: I was just gonna say adhd, I can't describe that.
• 37:54
  Speaker B: Well, you, you, you and I had this dialogue online. I posted a photo because I'm trying to figure out ways to explain this again, just, just to paint a picture to help the conversation evolve. So picture an electric fence that's like the temporary like ribbon style that you touch and it just gives you a little static shock. And picture a Jurassic park level electric fence that's meant to keep in a T. Rex. Both of those fences are in the category of electric fences. But the experiences are incredibly different. So autism is the category. Autism is the fence. Comorbidities are the wires and the voltages running through those wires. Everybody's list of comorbid conditions is different and at different severities. So when you talk about autism in a monolithic thing, well, number one you're talking about a category of disorder and number two you're describing your unique set of comorbidities. But everyone's are different. So you might have as comorbidities, adhd, light, you know, social anxiety, a little sensory sensitivity. That's on the top level. Fence, you might also have intellectual disability, seizures and epilepsy, whole body apraxia. Pick a OCD off the chain, you know, so you've, it's, it's an inadequate picture. But I'm just trying to come up with models that help explain this, to take away this monolithic voice. Right. So, but then in that, so when you talk about.
• 39:29
  Speaker A: Well, I mean that, that, that fence description illuminates the realities so, so well, and maybe there's, maybe there's, part of the ability of your platform is to have those visuals become more baked in, you know, to all of ours. Because I think that the ones that are so damning to forcing the monolithic approach to this are often the ones that can't visually understand until it's actually presented in a visual way that maybe calms their own nervous system. And realizing that the erasure isn't coming from saying that you're not, that your, your low support, you know, high functioning autism is, is still real. It's still very, very real.
• 40:11
  Speaker B: Yeah.
• 40:12
  Speaker A: And you're still going to have an experience of being an autistic individual with true life. That that has, comes with many things that you need support in, period. But the visual of that, I mean I, when you just said that about the T. Rex fence at Jurassic park, remember in that Actual scene in the movie where the boy is climbing up that fence and the guy, who's not even his dad, this is just a. That's the researcher guy. His eyes lit up in that scene because you basically. That just. That is such an absolutely genius way of putting it. Because once you see it, you can't unsee that. You can't unsee the severity difference.
• 40:50
  Speaker B: Well, and he was climbing that fist while the voltage was off. And then when the voltage flipped on, he went flying. Yeah.
• 40:59
  Speaker A: And that's basically how people are afraid of. Because people are afraid of getting so close to that high voltage that it's going to affect their ability to process their own reality. And by saying everyone can't see, you're going to. You're going to push down your own. Everyone has things in their life that they feel so uncomfortable or unable to talk about, yet the ability to even talk about it is. Is what you and I are saying actually lowers the voltage on your experience.
• 41:28
  Speaker B: Yes. Yeah. And people are the spectrum. This is the issue whether it's. It might be, and I do believe it is scientifically accurate that all of these conditions are related and they stem from, in my belief, neurological injury that is sustained when your body, whether through genetic susceptibility or environmental factors, is pushed beyond the tipping point and you sustain an injury that might manifest itself in. I really can't handle that noise. Or it might manifest itself and never fucking say in a word like, these are the severities. Right. It's hardcore. And so then when we talk about it. All right, so for picturing that, that fence, how do you split that? Like, how do you divide. How do you divide a line? Oh, well, this would be high functioning. This below function. Well, no, because that wire exists here and it's a really high voltage for this person. And then this wire is down here and it's not really affecting anything. There's. I mean, even the poor level twos, they get left out of this conversation all the time because we're talking about quirky people and we're talking about profoundly people. And I feel terrible for the level twos and how difficult it must be to have the function, to have the capacity to function in society, but yet really struggle with those comorbidities that. And you. You would feel absolutely invisible. Yeah, and I feel terrible for them.
• 42:45
  Speaker A: Don't you think that people are so afraid to center the truth of profound autism and the caregiving role of what it takes to live in the reality of profound autism, that if we don't begin to tackle the most deeply affected first, how are we ever going to acknowledge that the spectrum actually exists? Because the level twos will actually be more heavily provided for and comforted and cared for and integrated the more we center the heart. I mean, the analogy that I've used because a veteran came to me and suggested this on my substack. He said, a friend of mine had three limbs blown off on his second tour. And when he was welcomed home, the Society for Missing Appendages club came to him and said, you should really join us. How? There is not a, there's not a snowball's chance in hell that a person that lost a pinky could have the same devastating life experience here on earth as someone who lost three limbs that was blown off in a war. If we don't center the highest voltage, though, how can we ever even touch the difference? The struggles of someone who's lost an appendage. How.
• 43:55
  Speaker B: Well, that's, that's where scientifically and medically I believe the spectrum is accurate. Societally, it is an absolute minefield because what it requires is for the highest functioning to concede that they have a disorder and that they can't succeed. What I'm finding is that, that, that selfism because they falsely equate acknowledgement of a disorder with lack of acceptance. And that's the hurdle that we can't get past. So I am in favor of the spectrum. Staying the spectrum. Am in favor of. And I don't know how to do it. But what I want is accurate advocacy voice. I want to be able to talk about autism and people actually know what I'm talking about because it's my experience and I'm not projecting on you. And this solves the selfism problem because we could go right, we're going to have a conversation about this, which is not what you have. We're going to, we're going to talk about a. Kick us off the spectrum, like from, from a label point of view. Boot the profoundly autistic people off. We're not precious about the label. Those that want it as their identity, first language, they can keep it. We don't, we don't want it anyway. So you have it call us something else. And maybe that's centered around limited to no communication ability and you know, the high support needs requiring one. Maybe those are the two like anybody that falls into that. Which is. Which is the current subgroup of profound autism, less than 50 IQ, limited to no communication, requiring significant care. All right, so let's, let's just call them Something different. Let's call them something different. We still acknowledge that it's a part of the autism spectrum, but let's call it something different. And then we have the freedom to say, okay, what surrounded this regression? Let's look at, let's identify all of this. Okay, something's gone wrong here. Like when a plane crashes, you don't point to the 99% of planes that landed safely and go see, everything's fine. No, you investigate that one that crashed to figure out what went wrong. So let's figure out what went wrong. Let's move towards prevention and education and. And then you guys, if you don't want any part of it, that's totally fine. You don't have to, because I can talk freely and openly, and I'm not imposing my view on you simply because we're under the same diagnostic title. And then you can have as much autism as you want. If you don't want what we uncover, do what you want.
• 46:31
  Speaker A: It comes. It becomes almost like a, like a masochistic choice, though, to like pain and suffering of the, of the Autism Identity movement because they are able to advocate and help themselves through using their voice and platform. It's awesome. I think that that's so great. There's, there's, there's ADHD coaches out there, you know, Asperger's coaches, to help and support. Like, isn't that the main goal is saying we need help and support and if we center the hardest, most difficult to use your example, like, like plane crash example of. And comparing it to profound autism. Don't you think you actually, as a byproduct, unearth even the smaller possibilities that would help even the more lower support needs autistic individuals? Like, I think about myself as a.
• 47:20
  Speaker B: Absolutely, you would. But I mean, I have.
• 47:24
  Speaker A: But as a, As a mother and human of children with profound autism, I gave birth to them. My body's built these bodies of these children with profound autism. I can't divorce the fact that my genetics and what have been put in their bodies and put in my body caused this disorder. But that gives me such peace and calm to know that through there, my advocacy and through unearthing and through centering the greatest hardships on the autism spectrum, it actually helps even those of us who are doing the caregiving work to realize our own, maybe false narratives or false presumptions about our own neurodiversity, if you will, but that's really hard to look at unless you decide to center the hardest realities.
• 48:07
  Speaker B: Yeah. And it comes the Reason why that's so difficult, as I've said, is it requires those that are higher functioning to admit that they need assistance. It requires, it's. Why would you want to, why would you, why do we need to work to prevent something that we're being asked to celebrate? Like it's, it's antithetical. Right? So we've got to have a way of advocacy that you can be celebrated. And honestly, this is going to make me sound like a dick and I apologize, but you can have as much autism as you want. I'm not going to try to take it away from you. The plane crash needs help. And so I'm going to title it something different so that we can assist these people as time progresses and we uncover more and more things that would be of benefit to you. If you want to admit that you need assistance, those have access to you. But I cannot let you have control of the conversation to prevent like autism speaks. They're like they systematically deplatform profoundly autistic voices, number one, because they're coming from people who are not autistic. The parents, the caregivers. And they say nothing about us without us. And, and okay, fine, then we'll do it without you.
• 49:24
  Speaker A: We'll do without you.
• 49:25
  Speaker B: Like I'm not like going to not help these people. I will do it without you then. Sorry.
• 49:30
  Speaker A: Right. It's, it's, I mean again, this starts to get into what I know creeps a little bit politically, but it's, it's a systemic failure in this country is that we have centered identity politics so much that the ones of us that are on the fringe and are literally drowning, our children are literally drowning. Like my child. Like the first thing I think of when my child elopes is where's the closest body of water? Because the highest cause of death in under 14 year old profoundly autistic children centering that is so destabilizing to any identity movement that our system right now would completely crumble if, and I'm not saying even the reality of profoundly autistic, I'm talking about even, you know, severely wounded PTSD Laden veterans in this country if we centered their experience on war. No one want to hear it in this country, no one wanted to hear it in the world because that reality hits too deep. Right? You know, that is what I believe systemically needs to happen is that the realities of the hardest, most intensely hit on the autism spectrum disorder in. And again, I believe it's just nestled so deeply and combat veterans who see the realities that affect humans and human beings if they're not centered on what that does to your psyche and how. And how the truth has to be centered in all this. We are going to continue to evolve around ego and self. Identity politics, period.
• 51:01
  Speaker B: Yeah. And I think there's a pendulum swing. It's as bad as it's been, and I think it's coming back towards sanity. I think that the identity politics nonsense is starting to swing back. We're not there yet. And there's nothing I would love more than to just be able to stop arguing about this. And like. Okay, I don't. Oh, you're. You are 100% correct. Not to be patronizing, but. Because I know I can't win argument
• 51:30
  Speaker A: with you, bless your heart thing, you know, it really helps.
• 51:33
  Speaker B: I.
• 51:33
  Speaker A: My, like, gross Pittsburgh, sort of, you know, like industrial does not. Doesn't land as. As calmly as yours does. But you're absolutely right. I mean, if space is going to. Has to be, you know, it can't be louder. It has to be wiser.
• 51:51
  Speaker B: Yes. We just have to. And that's. That's the minefield. Matthew McConaughey had a. A poem I think he released in his book last year, and it said, it's called A Good Man. He said, a good man stands for certain ideals, and when those ideals are contested, a good man is not a nice guy.
• 52:09
  Speaker A: Yes.
• 52:10
  Speaker B: And, like, that's. That's the reality. We have to walk. I would be going at this 10,000 times more vicious and angrily than I appear. But I'm trying to keep society together. I'm trying to be the nice guy.
• 52:25
  Speaker A: Yeah, yeah.
• 52:27
  Speaker B: So that. So that the maximum amount of people can be assisted. Yes. You know, you've gotta try. We have to at least try to bring people on the journey. At the end of the day, I'm gonna do what's best for my family, and I'm gonna do what's best for my girls. And I actually don't need your permission.
• 52:49
  Speaker A: Correct.
• 52:50
  Speaker B: But we are going. We're moving towards sanity. You can come if you want. You don't want to come. I'm not. I'm not going to drag you. We're. But we're gone. And I think that's the line coming in society that people say, we're going to move on without you. We don't want to leave you behind. But if we have to, we're going to, because society has to heal. And we have to treat this as. It's an epidemic. We have to treat it like it is. And Actually look for causation. And here's how I know. Here's how I know that society is having a grief response to autism because I released a poem that my daughter wrote, and it was from her perspective about raising her. I might just read it to you if I can.
• 53:28
  Speaker A: Yeah, please do.
• 53:29
  Speaker B: It's titled Tell him, not me. He's 17, caught at the top of each evergreen. He's never been to a party, never walked into a friend's house. He won't ever say his vows or have a spouse. He loves cars, mumbles about them like prayers. But he will never drive one. Not here, not like this. Not with a system like theirs. Nero. Sparkly, not broken. See? But tell that shit to him, not me. If I could cure him, I would. See acceptance looks really nice on a T shirt. Until your kid bites himself so hard he bleeds. Until he has to take antipsychotic meds to leave the house. The help he needs doesn't come from prayer beads. If I could cure him, I would. If only we could. I love him more than hands could hold. But that's why we fight until we're old. If there were a switch, I'd flick it. It's something that no one should go through. For the sake of my kids. I'd turn it off if I could. Wouldn't you? It's not love to let him suffer, not love to stand still. It's love that makes us fight for a cure, a life and a will. As his sister, I cried till my eyes ran dry. Tears, tears I thought I should hide. Maybe I'm the bad guy, just accepting. Accepting the chant on repeat. Instagram makes his pain look sweet. Autism is a disability, but on TikTok, it's chic. Where is the space for those who can't speak? He's the happiest boy. Just let him be. But he's not the one choking on grief. It's me. It feels like they want him frozen. Some untouched art. But I want him living with a voice and a heart. I want him sneaking out, yelling at games, kissing lips. Not trapped in routines and medicine. Scripts to fall in love, to drive, to speak and to be understood. If I could cure him, I swear to God, I would not because I don't love him, but because I do.
• 55:04
  Speaker A: Like, first of all, how proud you must be as a father that your
• 55:07
  Speaker B: daughter wrote that I wept. I hope that. That she didn't even show me. She just. She wrote it as a protest piece for school, and it just quietly showed me one night and I freaking bawled my eyes out like she's 15 years old and she sees the struggle.
• 55:22
  Speaker A: And yeah, I have a typical 13
• 55:25
  Speaker B: year old and I can't argue with that.
• 55:30
  Speaker A: Young girl writes something like that. If you have a pulse to have any extra bit of emotional bandwidth to give to know that a 15 year old girl with a brother with profound autism is able to write with her words, type with her hands, think with her mind in a way to share the depth of the pain aligned with profound autism. I dare you to look away.
• 55:53
  Speaker B: I dare you to look away. That's why our stories are so important. Because in reality, she represents the closest voice, voice to what the celebrate autism crowd wants. She's lived in proximity to autism her entire life. It's normal for her. But that perspective provides the reality of the profundity of the situation. And we can't discard her voice, but we systematically do. Now, I released that poem and people were calling her Ableist. They were saying I was raising Ableist children who. What is there to cure? What needs to be fixed? Because they just, they don't live with it, so they don't see it. But here's what lets me know. Autism is having a grief response because when I introduced that poem, I said, my daughters know they will be the ones to facilitate my son's care after his mom and I are dead. And the outrage was visceral because they said how? No, no, no, you can't expect someone else to care for your son after you're dead. Hang on a second, hang on a second. I'm meant to be celebrating this, remember? So why is it an issue for his next of kin to go on facilitating his care when I'm dead? Shouldn't they be excited to live in such close proximity to the next iteration of human evolution?
• 57:17
  Speaker A: Would they be three? Shouldn't they be so thrilled that their children and the children they have in the families that they decide to go on and build are going to have this constantly attached, Right?
• 57:26
  Speaker B: But here's the issue. Society expects the parents, the mom and dad to grin and bear it and just endure it. To take that responsibility and place it onto an innocent other is seen as abuse, Right? That's what lets me know society is having a grief response because we see that that is wrong. What I'm asking, and now I don't think that my son's going to live with them, but someone will have to facilitate his care if he's in a group home, if he's in a nursing home, someone has to know where he is and make his financial choices and administrators care. That's what I'm talking about. And I was absolutely berated and drug through the shards of glass over that one. I'm just asking society to take that one step further. That sentiment, you have to protect my daughters as innocent parties in this whole scenario. What about their children? You want them to. What if it's just genetic? Well, they're likely going to have autistic kids themselves and their brother to care for. So can we not assist them with knowledge of prevention and every single tactic we have, all of the knowledge we can give to future generations about how to avoid these profound situations and take that sentiment and choose to protect my daughter's unborn children rather than invite me to celebrate this? Because that's all it is, is bargaining. You're just rearranging your mental framework to make you feel better about situation. That's why society is in grief.
• 59:04
  Speaker A: I cannot wait for your book to come out on this. I think that you are striking something that is so much deeper than just profound autism. And as someone who's lived through and is going through and, you know, sits deep in the acceptance phase now and gets to use my voice as a platform alongside yours, I think that this is going to resonate so far beyond autism. I cannot wait for this to launch. How can I. How can I be a beacon for this? Because you are sharing that the complexity within the grief of. Of truth is not a weakness. It's maturity. And if this space is going to move forward and be wiser, it is going to require us all to loosen our grip on identity and stay just long enough in the room together not to win. Not to win, not to. Not to do anything, but to understand. And I just. I really thank you so much for. For your platform, for how you've spoken your truth, how you've completely. You have. You have done such an incredible shakeup of the profound autism movement. And I thank you as being a father in this because I think that there's been so many mothers like myself and a number of others that have shaken awake certain pockets of profound autism. But to have the dad do it, I just want to. I want to say thank you from all the families out there doing and living this.
• 1:00:21
  Speaker B: You're welcome. And here's the reality is my son, is he. Honestly, he's a happy kid. He's so.
• 1:00:27
  Speaker A: So I always say I've got happy kids.
• 1:00:30
  Speaker B: Like, our life is easy compared to some, but I get the dms. I've seen it firsthand. I know how difficult it was for us in the beginning, but we're sort like I'm gonna have. I've got a tiny house in the backyard. My son's my best friend. We'll live, we'll grow into old men together. Don't worry about me. I'm fine. But I know the reality that's going on and I have because I don't. I'm not required to keep my son from putting non food items in his mouth. I can come out here and do a podcast and make a video and write a book.
• 1:01:00
  Speaker A: Right?
• 1:01:00
  Speaker B: Okay. Because he's just. He's just in the house right there on his iPad. I know where he is. I have, because I have that capacity. I have to speak up has to help future generations. And those of you that are on the deep end, that do not have that capacity, that the moms that are struggling for survival every day, they don't have time to let their voice be heard. Whereas I've got the capacity to do that. That's why I'm doing this work. And to complicate the grief thing, it's very possible you go through the cycles again. I came through to acceptance and what serves me the most is just to unplug from society and just live out the rest of my life and just enjoy this beautiful Tasmanian wilderness that we live in and just be happy. It would serve me to just celebrate my situation. But then I think about my girls having children and I start the process over again. I start going through denial. I cannot believe society is no closer to sorting out this problem that makes me really angry. So I think I am pre grieving the society that my daughters will raise their children in. And I think that's why I've written this book and I think that's why I've started speaking up because I'm going through the whole process again for them
• 1:02:16
  Speaker A: and I'm trying, I think help realizing and you're illuminating and you're modeling really, really beautifully for any human that's taking in or sitting in our realities or as I say, like holding vigil, like sitting outside the door of it and saying tell us more is that we are never not going to be cycling through this process if we're staying really truthful to the, to our realities. And I just, I'm very thankful for your willingness to sit in the nuance as the processing continues, as people join, as people throw stones, as people try to challenge the passion and the movement forward. I believe in your purpose so much and I thank you for believing in mine. I really do. So thank you.
• 1:02:57
  Speaker B: Thank you. And I think we just keep raising our voices and we're heading that direction and we're going to step on minds along the way. But this is where we're going. Whoever wants to join us can join us, but that's where we're going.
• 1:03:08
  Speaker A: At the end of the day, it's not about. It's not about winning an argument. It's about expanding the possibility for. For the protection of the dignity without denying that. That responsibility. Tyler, thanks for being here today on Inch Zones. I am so thankful for the work.
• 1:03:22
  Speaker B: Thanks for having me.
• 1:03:23
  Speaker A: Absolutely. Absolutely. Be posting all of how you can follow along with Tyler Hudson's content about his story as the father to Lyric and his family. And cannot wait for this book to come out. You're gonna make some moves. You're make some huge moves.
• 1:03:36
  Speaker B: Oh, thanks, Sarah. I appreciate it. Thank you.
• 1:03:38
  Speaker A: All right, awesome. Well, until next time here on Headstones podcast. See ya. All right.