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Parenting in the Era of Neurodiversity: Inside the World of Profound and Nonspeaking Autism with Rob Gorski · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to Inchtones podcast. I have the autism dad, Rob Gorski here today. Rob and I connected, actually, probably like two years ago, and he said, it's nice to meet you. And I'm like, this is what happens in our world. We are so sensory overloaded that even the people that were, like, following or not following, I mean, we are absorbing so much as autism parents. And one of the things I think Rob's platform does so well is responding in the moment and to the fullness, the bigness, the energy consumption of being a parent of children with autism. And, you know, I think you and I sit very parallel and get a lot of comments about how raw we are, how we're very honest, maybe sometimes too heavy. And in a world that seems to want to erase the realities of very real things like the facts of our lives, Tell me how you felt. You've risen to the ability to go, yeah, I'm all that and what I'm here to do. Because I believe when I. When I found your work years ago and then sat really parallel on a journey, there was something so powerful about going, no, he's saying it. He's saying it. And a lot of us are living very. Something very similar, and no one wants to talk.
• 1:20
  Speaker B: Yeah. Well, first of all, thank you for having me and for not being offended. Like, I have the memory of a goldfish sometimes. I have a very.
• 1:28
  Speaker A: Mine smaller. I'm a gnat.
• 1:31
  Speaker B: Okay, you win. I never thought about that. You got it. That's a really good question. I'm not even. I'm not even sure. Not even sure how to answer that. Well, could you ask. Could you ask me the question again?
• 1:45
  Speaker A: So I guess my thing was, how do you respond to the community that we both serve in some capacity or. Or the people that stand close vigil, or the people that take in your content about your actual lived experience being seen as too raw, too heavy, too honest. You know, what is that? Because as people that sit in this advocacy world with a public voice, is it par for the course?
• 2:15
  Speaker B: Well, that's a good question. So to be completely honest, like, I've been doing this for a really, really long time, and there. There were people in the beginning that would be like, oh, my gosh, you're oversharing, or whatever. And. Okay. I mean, like, I was learning as I went. Like, I never intended to do any of this publicly. My. My whole thing got started because back when my son, my oldest, was diagnosed, there was nobody talking about stuff online, Right. And so I started this What I thought was a private journal, and I was, like, dumping all my emotional baggage there. And, like, not. Not. I mean, stuff that I realized today isn't bad or embarrassing or anything. It's just, like, the reality of what we're feeling. And I assume because I had to sign in to. To write, that you would have to sign in to read. And I just wasn't going to give anybody, you know, whatever. Well, it's not how the Internet works. And because no one else was doing that back then, I got caught up in, like, indexed by Google. So when you would search for autism, what you would find is Rob's private thoughts. And it took me a while to figure out, like, that's what was happening because I started getting, like, emails from people I couldn't figure out, like, how do you know that?
• 3:23
  Speaker A: You're like, oh, my God, the Matrix is real. They're inside my mind.
• 3:27
  Speaker B: Well, I'm thinking, like, this is like a camera. Like, I had no idea. I was so naive to how it worked.
• 3:33
  Speaker A: Yeah.
• 3:34
  Speaker B: But, you know, there was. Back then, it was. Maybe it was more shocking because there wasn't anybody doing this. And so there. There was some pushback about people being uncomfortable with saying certain things about kids that have a diagnosis of autism because they're like, oh, you shouldn't say that because they're autistic. I'm like, my kids drive me crazy. Like, absolutely nuts.
• 3:54
  Speaker A: Yes.
• 3:55
  Speaker B: Every day of my life. I love them dearly. I would die for them in a heartbeat. They're better than me in every way, but they drive me crazy. And that's because they're still kids. Right. So there's.
• 4:04
  Speaker C: No.
• 4:05
  Speaker B: There's. I don't feel like there's anything wrong with, you know, talking about my experience with my kids like any other parent would talk about their experience with their kids. Just because they have a disability doesn't mean that they shouldn't be, you know, treated equally or. Or they're not going to fall down that same path that kids do for parents, you know, and drive them crazy or frustrate them or whatever, because it's. That's, like, normal stuff.
• 4:29
  Speaker A: Right. I mean, that. That's what I always think is so interesting about sharing the highs, lows, small wins, big wins, milestones, all these things is, like, at the end of the day, as a adult raising children, there's, like, statistically proven things that we are going to experience. Frustration, empathy, loss, you know, all these things. They're just in a different capacity, but they still happen. And I think that this Whole, like, masquerading of wow, like, you know, autism moms or autism parents, like, that we shouldn't feel those things at all. That we should. That we should show the world our truth but not act as, like St. Rob of Ohio.
• 5:17
  Speaker B: Yeah.
• 5:17
  Speaker A: And I'm not here to be a martyr to it. I, I really am not. I'm really just hoping that someone else goes. I'm so glad she feels and experiences this too.
• 5:26
  Speaker B: Yeah, that and that. And that's the thing, because there's. I spoke out about this. Well, so there's a lot of people that are, like, discovering me for the first time.
• 5:35
  Speaker C: Right.
• 5:35
  Speaker B: And. And wanting to, like, they make a lot of assumptions and whatever, and that's fine. I, I don't care anymore. But, you know, I, I spoke out recently about some of the things that are going on around us and concerning our community and whatever I had, I had people attack me because I don't know what, in their view, because my kids are doing pretty well right now, that I don't know what it's like to struggle or I don't know what it's like to experience, you know, higher support needs. I'm like, you know, five minutes of research would answer that question for you. And so I try not to let it get under my skin. But like I said, I watched my, My oldest, when he was 4. He regressed, like, so much so that it was. I grieved the loss of a kid that I still had. I watched him go from the person I knew all the, you know, first four years of his life to. To like a, Like a, Like a clone, like he had been abducted by aliens.
• 6:32
  Speaker A: That's deep loss. That's a deep loss.
• 6:35
  Speaker B: And, and there is no one, there's no support group for that because. Because you can't go to, you know, a loss support group because you have people who have kids who have actually passed away.
• 6:44
  Speaker A: Right.
• 6:45
  Speaker B: Yeah. And I don't feel like. I don't feel like I qualified for that. I didn't want to complain about something that, you know, there's a lot of people out there who would give anything to be in my shoes.
• 6:56
  Speaker C: Right.
• 6:56
  Speaker B: But it doesn't, it doesn't invalidate the experience that I was having. And I try to explain to people that, like, everything is, is relative and if we don't share, if we don't share openly and honestly, you know, even within your comfort zone or whatever, but there's going to be people who, who benefit from it and feel connected or validated or seen. I think A huge problem we have currently is, is there's a large segment of people in this community who don't feel seen and heard and haven't felt seen and heard for a long time.
• 7:30
  Speaker A: Yeah. And I'm aligned with a lot of them.
• 7:33
  Speaker C: Yeah.
• 7:33
  Speaker B: I mean, I, I, I, I worry. Well, I have a lot of concerns about that. But you know, I've been advocating for that for 15 or 20 years, however long it's been. And you know, just because our experiences are different doesn't mean that there's nothing to learn or that we can't be supportive. And you know, there's a lot of scary things that are happening right now and it shouldn't matter whether your kid has high support needs or fewer support needs. We're all part of the same community and we all need supports for our kids. And if it's impacting you, it's impacting me.
• 8:07
  Speaker C: Right.
• 8:07
  Speaker B: I mean like it's, we, we have to understand that there are people in our community who experience autism not as just quirky and weird.
• 8:19
  Speaker C: Right.
• 8:19
  Speaker B: It, it's profound. And those people need support. And if every time, you know, people speak up and they share that side of things, there's always pushback, like, oh, you know, you're just looking at the negative side or you are, you know, you shouldn't feel that way cause they're your kid or like, like nonsense stuff, you know, like we're human, we're going to feel all kinds of, of things. You know, I guess I just, I've been doing it long enough that I just like, I don't care what people think. It's like if someone comes at me and they're like, you're oversharing. Okay, then don't watch or don't listen. Like I'm not going to lose sleep over it because I know there's just as many people out there who needed to hear that or needed to know that they're not the only ones who are frustrated or upset or angry or whatever. And, and that it's okay, you know, or, or that you can go through all of those struggles and you know, five, ten years from now, it may not be the same way. You know, there's, there's no way to.
• 9:19
  Speaker A: The openness, to the evolution of everything. Yeah, it's not pre written parenthood, including your own parenthood.
• 9:25
  Speaker B: Yeah, it's not predetermined.
• 9:27
  Speaker A: I can probably reflect on those first few years. I mean, I get asked that question a lot. What was it like when you had Millie diagnosed and you had a Newborn. And then I started to realize that Mac was gonna. Was autistic as well. And that whole process, and it was like this overlapping. And when I really sit in it, I'm like, I was the woman going autism parent and finding Rob Gorski, like, because you're like, someone tell me what to do. Give me the guidebook. You know, you're. You're. You're in a completely different bucket of realness to your experience. Then 10 years later, you know, for you, too, like, you know, 15 years later, we are different, without a doubt, by what has shaped us through that experience. So it's good to find models of resilience and models of parallel life journeys and at the same time, own yours and know what you can and are okay to share and ask for.
• 10:23
  Speaker B: Yeah, like, I always. I always tell people, I mean, you don't have to share the way that I do. I mean, I. I know that I have overshared in the past, especially when my kids were younger and didn't. I mean, weren't impacted by anything. As they've gotten older, I've had to pretty dramatically shift how I approach things and make it more about the parenting aspect of it, you know, And, I mean, they're still. They still love to be involved in all this stuff, but I don't. I don't do anything without clearing it through them now. But it matters, you know, because even. Even when my kids share something, there are parents out there who gain an understanding of what their kids might be experiencing. You know, and so it's. It's. It's so important that we, if we're comfortable with it, that we feel that we can share our stories and our journeys in an open, honest, transparent way. Because anybody that tells you, anyone. And I've had debates with people about this. I don't know why I waste my time, but, like, you know, we never. I never get upset with my kids because, you know, they have autism and, you know, they just deserve me to not yell at them or be frustrated. And, like, they come down on the people who do feel frustrated at times. And it's like, you're either lying to me or you're lying to yourself, because there's. There's no way that you don't experience frustration or. I mean, and. And to tear other parents down because they're openly expressing that. Yeah, this was really frustrating for me, but this is what I did. It's not a reflection on our kids. It doesn't mean, like. Like, if you're frustrated with your kids, doesn't mean they're bad kids.
• 11:59
  Speaker A: Right.
• 11:59
  Speaker B: It means that you're human and you're dealing with something that's very challenging and you've kind of hit the wall. You've hit your limit. And. And I guess the.
• 12:05
  Speaker A: What I hear, though, and I. Because I agree with that so fully. Like, I so, like, the relativity is a hundred percent. When I really, really step back, though, and I think that we're aligned in this, and please feel free to engage. There is a problem systemically with how we're talking about the high and low support needs, because I. And I really get. I sit with this a lot. And I, you know, my children with profound autism are 10 and 8, almost 8. And I know I have years to go until, you know, they fall off the cliff. And I'm so conscious to know, like, I don't know what I don't know.
• 12:43
  Speaker B: True.
• 12:43
  Speaker A: I do not know what that looks like. What I do know is that I sit in a place of privilege from the system. And I know there are women and men and parents and caregivers out there whose children are eating drywall and licking screws and literally bashing their head through the wall who cannot and do not have the respite, support the medical care. All these things. I'm thinking to myself, I agree with the emotional response of autism parents to feel and to dig in to find your people. But at the end of the day, I do believe the erasure is happening to the people that aren't sitting like us talking on podcasts. They're literally hustling and getting home and never getting a break, and their central nervous systems are fried. I mean, if ours are fried, theirs are on the fritz.
• 13:33
  Speaker B: Yeah.
• 13:33
  Speaker A: And I just keep going back to, this is a problem with the system. This is not a problem with our children. This is not a problem with who we are as a mom and autism. Mom and autism dad. It is not. It's a problem with the system. Because if I want to hold space for everyone's experience with this, I think that neurodiversity is so awesome. I love when I hear that someone, they're like, oh, my God, like, I heard that idea or that. That business. Like, do you know what? Like, he was severely dyslexic growing up. And you're like, I freaking love that. I love that they found their way to, like, get these ideas and their mind works. I love it. And there's this part that. That keeps on rearing its head to me, which is like, that community of the severely, profoundly disabled Autistic are just like, well, that's a different thing, but it's not. Cause those parents are like, literally like clawing for support, I think.
• 14:25
  Speaker B: Yeah. And part, part of it that, that I have experienced over the years is, you know, it, it there, there is so much tension within the autism community, right. We fracture off into these groups, right? You have your high functioning or what would be what used to be considered high functioning. So your level one, maybe level two ish people. And then you have like your level two ish, level three ish people who are impacted profoundly differently. Then you have autistic adults who are capable of advocating for themselves, which is great. But the problem is that we, we tend to assume that everybody else's experience with autism mirrors that of our own, and that's not the case. And so, you know, what I'm seeing from a lot of people right now is there's a lot of fear right now. I was just having another conversation earlier today about this and uncertainty, more so than what there has been in the past. And there was already more than enough in the past. And we are becoming more and more divided. You know, so now it's like if you have a child who's level one or level two, it's automatically assumed that your life is easier than someone who has a kid with level 3 autism, which may or may not be true because everything is relative. But we're discounting what other people's experiences are. And the large part of the receiving end are the people who have very high support needs, kids, you know, who are struggling. I mean, I know what it was like. I mean, my, you talked about, you talked like we dealt with pica. I cannot tell you how many times I spent in the emergency room with giant wads of paper in his stomach or pulling things that I didn't even know were possible to ingest, like pulling the carpet fibers up to where you have big, long, you know, 10 foot strings of carpet that he ate, you know, paperclips, anything that he could swallow, he would, he would do it. And he doesn't do that anymore, but he did for years and years and years. And you, you have to be resilient and you have to be constantly on the ball. And not only are you dealing with the things that in your immediate life, in that moment, but you are still held responsible for all the things that everybody else still has to do in society, right? So not only are you doing what feels like an impossible job, sometimes you still have to work. Probably. You, you may or may not have any type of respite care, or you have to live inside of a very. A very thin line in order to ensure that your kids qualify for Medicaid so that they can get the supports and services so you can't make more than a certain amount or you endanger the things that they need just to get through the day, you know, like, yeah, it's a broken system.
• 17:06
  Speaker A: It's a broken system. And that's like, what I've continued to call out in all of this is like, it's not about erasing the experience and the, the truth and the stress and the, the questions and the deep paralysis of the anxiety of the what ifs and the questions. And at the same time, experiencing it from the more profound end is that I'm seeing. Do you think that there's a quiet privilege with being a digestible quirky autism versus the undigestible realities of the deep end of the spectrum?
• 17:38
  Speaker B: That's a good question. And someone will hate me either way. I mean, having, having three kids who are in, you know, my, my oldest is. Is more profoundly impacted. So I feel comfortable saying that. Like, I think, oh, man, I don't know. I think everything is. So. Is relative. But I do think that there are challenges associated with higher support needs. Like my, my oldest, you know, that I don't have to worry about with my other two. But then there, but on the flip side of that, there's. There's things that I have to worry about with my other two that I don't have to worry about with him. So it's, it's. It's not so much like, it's not a one to one comparison. It's. There's challenges on both ends. But what I found with, with him specifically is that it is absolutely exhausting. Like, exhausting. I just, you know, he moved out about a year and a half ago. He's come a long way from everything that he's been through. He has come. I just lost you.
• 18:38
  Speaker A: Me. Hello?
• 18:40
  Speaker B: I'm here.
• 18:40
  Speaker A: Okay, I'm here.
• 18:42
  Speaker B: Sorry. The browser minimized.
• 18:45
  Speaker A: That's why.
• 18:47
  Speaker B: He'S come a long ways. So people make assumptions like, well, he's able to move out. So you don't know what this is like, you, you have no clue what this was like, reddish brown, right? I. I had hair. I had a career. I was a fire medic. I mean, there's all of these. I was married for 18 years. I mean, there was all of these things that, like, I get it. But, but just because that's not so much what the challenge is today doesn't mean that I don't know what it was like to experience it.
• 19:13
  Speaker A: Right.
• 19:14
  Speaker B: Because like I'm on the. I'm on a farther end right now.
• 19:17
  Speaker A: Right. And so I think that what I hear you say and what I know that I live is like profound disability doesn't bend to our emotions. And so I think when I people say or express like around the holiday, I guess it was like around, like Easter, Passover, April, the, you know, RFK said that all the inflammatory stuff and like you saw these. I saw some profound autism moms like showing like, I'm not at church right now because like this is my son. And there was like exploitive nature of like showing the meltdown, showing the disruption, showing the harm, the self injurious behavior. And I sat with that so deeply thinking. I know that there is such sadness and anger and that exhaustion is so real. And then you think about the relative nature of it. People are so uncomfortable with seeing the extreme, like seeing and hearing what you just shared about like he had a wad of toilet paper in his stomach. Okay, this is not, this is not him just eating chicken nuggets every day and you worrying about his health. This is like severe systemic to his system issues that we are not allowed to say because people go and that just sucks. Well, that's a lot for him. But like that is so that's traumatic. That's. That enforces that, that is, that becomes these like core memories of your parenthood. And then when people are live that over and over and over again, that's just their norm and it never goes away. I know, and I cause I just, I read all these comments from, you know, parents, mothers, caregivers of like older children like that never leave and are full time care. Like they're basically saying like, we're not the same. And I think that that's like, I feel like we can't keep flattening it. We have to somewhat divide. I mean, I love that the Princeton study came out. I think that it, that it showed the different, you know, sort of parameters of autism where there's like ones that have, are broadly affected and ones that are less effective because it at least gives some categorization to like, well, love and high support look so different. Like I'm someone like, if you told me right now, Rob, you're like, sarah, we have a gig. We're gonna go speak to some Japanese moms tomorrow and we're bringing the kids, I'd meet you in China. Or Japan, I wouldn't meet you. And I'd be there and I'd get it done and I'd be like, we freaking got to China. And I, because I know I can do it. That's, that's just me, though. I was raised in a family that goes and moves.
• 21:44
  Speaker B: Like there's people who need to go to the grocery store.
• 21:47
  Speaker A: That's so, so what I'm saying is that using the facilities of what make us innately who we are is what we can inspire to say, like, you know, my children have high support needs. I can still address things because of who I am, not because of what we have high support needs. Now I'm going to just ruminate about their high support and I'm going to find things to confirm that this is the hardest thing in the world. And I'm going to find the emotional biases that, that say, you know, I actually got really, really charged about. Did you see those superheroes that were coming? I remember everyone was doing like, you know, like, if it was like you put into chat GPT, like a description of yourself.
• 22:28
  Speaker B: Yeah, yeah, yeah.
• 22:30
  Speaker A: And you put in Rob Gorski and it puts out, this is like such, this like vacuumed autism, okay?
• 22:36
  Speaker B: Superhero stuff.
• 22:37
  Speaker A: Some magazine in our neurodiversity world put out like the autism mom, okay. And it was one of those things. I'm like, oh my God. This is what the system is doing to us. It's affirming that we're exhausted. It's affirming that we look like we're schlepping around. It's affirming that we're 30 pounds overweight. It's affirming that we've let our ourselves go.
• 22:58
  Speaker B: Yeah.
• 22:58
  Speaker A: And it bothered the heck out of me because it's assuming and it's confirming what they want you to do, which is to feel bad, to complain, to not feel like you can rise from this and to find a way to get through and not in this, like, depiction of what, oh, well, yeah, my life's over. I'm gonna isolate and like, this fucking sucks. You know, I just, I, I, I think the system does it to us. We're like being told we should do that.
• 23:27
  Speaker B: Well, okay, so privilege I sit in.
• 23:30
  Speaker A: I don't want to be able to. I know I can say that I want to give every other Mother of Level 3 High, High, High support, need autism the ability to press pause. Like I can see.
• 23:42
  Speaker B: And I think part of the, part of the problem, honestly, is I think a lot of this is resource Dependent too. So you, you have a lot of families who just don't have the resources.
• 23:51
  Speaker A: And why is that? That should not be the child with severe autism. You should be getting a team from the government immediately.
• 23:59
  Speaker B: Well, sure. What happens? And I hate, I've gone, I've gone, I will die. On this hill too. Where they talk about like autism, parents are like superheroes or super warriors or whatever. Because what happens, happens is like you send that message to parents and when they don't hit the mark, because they're not always going to hit the mark, then they, they fall.
• 24:19
  Speaker C: Right.
• 24:19
  Speaker B: And that's a hard fall because you're already feeling like a failure majority of the time because you can't help your kids a lot of times. And, and we build them up.
• 24:27
  Speaker A: That's right.
• 24:28
  Speaker B: And what we need to be doing is helping, is helping to surround them with the supports that they need. And it shouldn't be dependent on where you live, what state you live in or what you know, I mean there's people out there with, with financial means to take care of a lot of this. I know, I know I'm connected with some people who are very well to do and have kids that have autism. And I've discussed this with them before and it's like I, like I, the struggle that you're experiencing is real and I can relate to it because I know what it's like to go through that. But there's a lot of people out there who have to go through that and don't have the resources to have a one on one aid in their house every day or you know what I mean, get them to a really good specialized school or something like that. So there's people who are just trying to, to make it through the minute and I, I spent lots of my 25 year journey living in like five minute chunks. Like, okay, I'm going to just try and make it through the next five minutes and then in the next five minutes and you do it sleep deprived, you end up burning out. Because we have this built in thing in society where we have to put our kids first no matter what. And that's not sustainable long term. I have burned out multiple times and, and it just, it just, it just festers and you can't. And like if you want to. I've had so many people tell me over the years like, well you know, you're struggling, just go get a job. I'm like, okay, I had a career, I was doing really good, I was good at my job. But the situation with My family was such that I needed to be home. There was no way to manage it otherwise. There's no benefit for that, because I want the contact with other humans. Like, I don't want to be locked away all day dealing with really frustrating, overwhelming, exhausting things. And there were no really, really good options. Like, I would build computers. I mean, I just worked odd jobs out of the house, whatever I could do to try and make things work. And I paid a price for that.
• 26:22
  Speaker C: Right.
• 26:22
  Speaker B: You know, I'm 47. I have no real plans for retirement because I've had to watch, I had to walk a very fine line to make sure that my kids have what they need. Because I would have to go, like, to get off of something like Medicaid or Social Security. You have to go from whatever it is to qualify for that to at least six figures. And it can't be a transition. It needs to go from here to. All of a sudden now you're making 150, $200,000 a year.
• 26:50
  Speaker A: Right.
• 26:50
  Speaker B: In order to make up for the cost of, like.
• 26:52
  Speaker A: That's right.
• 26:53
  Speaker B: Gavin's my oldest. Medication. There were times where he was on $30,000 in medication A month. That's zero chance that I could cover that.
• 27:01
  Speaker A: Yeah.
• 27:01
  Speaker B: You know what I mean? So, so, like.
• 27:03
  Speaker A: And that takes your. That takes my breath away. Because it's like, I know that that's true.
• 27:07
  Speaker B: Yeah.
• 27:08
  Speaker A: And I also know that for as vocal as you and I are, Sarah and Rob, we are not unique. That's why we're talking about. That's why we're doing this. Because, I mean, I, I, I have to go back to what you said about the superhero comment of these, of parents like us, because I, too, feel like it continues to do a disservice.
• 27:31
  Speaker B: Yeah.
• 27:32
  Speaker A: To the humanity of us parents. And the phrase that has risen for me in this, it's like, it's the glorification of compassion. So we've, We've become so compassionate to God. It's like the pity becomes. I'm just gonna. I'm gonna tell them that they're this and. Cause I don't live it. I don't even know. I don't even.
• 27:53
  Speaker B: Or we just don't. Or we just don't know what to say.
• 27:55
  Speaker A: Can barely even hear what their reality is, but, God, they're a soup. I mean, that. Superhero warriors. That's what they are. And I'm thinking to myself, I'm bleeding out. I'm literally bleeding out over here. And you guys are like, stay in the good Fight. And you've, and they've, and they've had a pinky severed. And I'm like, y' all are, you're, you're glorifying your compassion for me by standing far enough away to not realize the realities.
• 28:22
  Speaker B: Well, it's, it's, it. So I saw, I saw this online meme or whatever where it has the difference between, like, like you have an autism parent who's stuck in this hole.
• 28:29
  Speaker C: Right.
• 28:30
  Speaker B: And you have people who combine, like, will climb, climb out or they toss a rope down to let them climb out themselves. But then you have the fellow autism parent who puts a ladder down and then climbs down into the hole with them.
• 28:43
  Speaker A: Yes.
• 28:43
  Speaker B: And then helps build them up so that they can come out together because they know what it's like to just. Even if you have that ladder, you're so exhausted.
• 28:51
  Speaker A: Yes.
• 28:51
  Speaker B: That you may not even recognize that it's there. You need somebody who's, who's, who's going to get down into the trenches with you. And like, you know, to me, we're at a place right now. You know, you mentioned the RFK incendiary stuff. Right. I have parents who, in Ohio, where I live, it's a three year wait list to get evaluated for autism.
• 29:13
  Speaker C: Right.
• 29:13
  Speaker B: And we all have those fears.
• 29:15
  Speaker A: We should be absolutely ashamed of that.
• 29:16
  Speaker B: Absolutely. We should. You know, we have to worry about the future. We worry about what's going to happen tomorrow. Are they going to sleep through the night? Are they going to elope out the window or, you know, whatever. Now I have parents who have been on the wait list for, for almost three years who get called up for their appointment, who, who now are afraid to get their kids a diagnosis because they don't want them put on a registry because they don't know what that means. So now they have to choose protecting their kids over helping their kids.
• 29:44
  Speaker A: And it's a double bind. And it's.
• 29:46
  Speaker B: Yeah.
• 29:46
  Speaker A: Absolutely unethical. It's, it's, it's, it's, it's not transparent. And it puts parents that are already in such a marginalized state of emotional exhaustion in an even tougher situation.
• 30:00
  Speaker B: Yeah. Lists of people have historically never been a good thing.
• 30:03
  Speaker A: Really. Probably not a good thing.
• 30:05
  Speaker C: Yeah.
• 30:06
  Speaker B: And. Well, and then, and then, and so now you, you have even just a three year wait list. You know, we beat into parents heads about early intervention and the importance of this, but you can't get the services that you need without a diagnosis. You can't get the diagnosis because there's not enough people out there diagnosing. And then you can't get insurance to cover anything without the diagnosis.
• 30:24
  Speaker C: Right.
• 30:24
  Speaker B: So, like, I mean, you're literally self.
• 30:26
  Speaker A: Licking the ice cream cone and you're like, like, you're just constantly like a.
• 30:31
  Speaker B: Dog chasing a tail.
• 30:32
  Speaker A: You're literally. It's never going to happen. And there's no. And the, the biggest thing that, again, it's the R word. It's like relief. Like, there's, there's never a sense of relief when you're not believed. You can't make motion. And the actions that you want to take that have been proven to help are you're. You're being met with a wall. And then you find people like you and I again, in different capacities. It's like, all right, I got a brick wall. I'm going to start licking, chiseling away at it, and I'm going to start picking every little brick off and every little bit of cement, and I'm going to find my freaking way through that wall. And then. But time is the only commodity. We can't back, so cannot get back. So then you're left with exactly what you said is three years later. Well, we're not even in the same situation now because the behaviors have. My child has grown because I watered them. I always say, like, when people are like, kids have gotten so big, I'm like, it's amazing what happens when you.
• 31:24
  Speaker B: Feed and water your kids.
• 31:26
  Speaker A: Yeah.
• 31:26
  Speaker B: And the things that were workable or manageable when they were little kids become much more difficult challenges as they get older.
• 31:35
  Speaker A: That's right.
• 31:36
  Speaker B: And you know, it's like being a parent to a child with autism is hard, period. There are, there are challenges that there. As bad as my situation was, as challenging as it was, there was never a day that went by that I didn't know that there's someone out there who's struggling worse than I am 100%. And what I took from my experience was that I've experienced enough to recognize that.
• 32:01
  Speaker C: Right.
• 32:01
  Speaker B: Because there's people out there who would always invalidate or try to invalidate what I was saying, or they didn't believe it or whatever. And it's like, you don't want to believe it. Don't believe it. If, if I, if I wasn't living this, I would not believe that he would have eaten six paper clips or, I mean, like, peel the paint off his wall.
• 32:17
  Speaker A: And your presumptions, assumptions, and statements over someone else's lived experience. And I know that that creates a lot of discomfort for People, though, like you said, people come to you and they're, like, in disbelief. And you're like, I just want to remind you, why would I ever share this about my child? Have it be mirrored back to me by hundreds of other parents going, God, that's happened to me, too. He swallowed four dice, thinking it was like a chicken nugget. And people are going, wait, really? I mean, there's no.
• 32:47
  Speaker B: And it. Flip that around. And you have people, you know, like level one or two people who have maybe significant challenges, but it doesn't look like that on the outside, right? So they're trying to get help, but they don't. You know, the kid doesn't look like they need help, and so they're. They're struggling to find resources simply because they're. You know, the kids are judged by how they appear on the outside. Like my oldest, the one. The one thing that makes it easier for him is that you can't meet and speak with him without knowing that there's something going on, right? So, like, if you started to have a conversation with him and he says something weird or mildly offensive because he just doesn't understand, like, the context or the meanings of certain things, you would be like, okay, well, he's obviously dealing with something, right? So you don't just. Whatever. But if one of my other kids were to do that, you would react to them like they were anybody else, even though there's still emotional delays or anxiety or depression or adhd, things that impact that, you know, so. So, like, the advantage to Gavin, in a sense, that makes him a little bit easier is, is that I don't ever have to prove to people that there's something going on because they can just look at him and see.
• 34:00
  Speaker A: Well, then I think, though, Rob, is the emotional impact of any lived experience of an autistic person or, you know, the mothers and caregivers of profoundly autistic children, is there. Is, like. Is the story dependent on people not looking at the hierarchy of needs? Are we trying to say, like, there is a hierarchy of needs? I mean, the end of the day, like, maybe that's where this sits, where I really believe that it's not dividing the community. It's like saying we need divisions to qualify and quantify the care, or this all is privatized and, like, it's capitalism, baby. And, like, that sucks, and I don't want that.
• 34:39
  Speaker B: Well, part of. Part of. Well, I think the overarching problem is that we're cramming an infinite level of combinations of people under one umbrella term of autism, Right? And, and I mean, I, I have an issue with that for one thing, because I would, I would like to think that, you know, what my oldest is dealing with is same diagnosis for the most part, but impacted in a profoundly different way. But yet on paper, it's autism. And so, like, how are we supposed to understand or even educate the public as to what it is when there's no, there's no poster child for autism, right? There's no, there's no example. Like if you're diabetic, you're diabetic, you're 1, 2 or 3C or whatever it is. If you are left handed, you're left handed. If you're right handed, you're right. I mean, there's like, you can, you can quantify that, right? And it can be proven. Like with autism, everybody is so profoundly unique, just like everybody else.
• 35:37
  Speaker C: Right?
• 35:37
  Speaker B: So the combination of personalities and maybe some of the challenges or the way they're wired can present in a very different way. And yes, and yet it's still the same diagnosis. And I think even parents have a hard time with it. I think autistic adults have a hard time with it because, you know, I've had people come after me for talking about how autism is a struggle or how I'm exhausted or frustrated or whatever. And you can have self advocates who are capable of self advocating who have had a rough life. Maybe I don't know all the details of their lives, but there's even judgment there. You know, it's not an inconvenience. You shouldn't say stuff like that. Like, but it's like, you know what? A, you're not a parent, most likely, and B, you're not walking in my shoes. Like, you don't know, you know, if I'm, if I'm advocating for, you know, some of the challenges that we're dealing with so that people understand that this is what can go on in someone's life. It doesn't invalidate what your experience was. It's just showing what someone else's experience is. You know, I've never tried to take that away from anybody. Just like, I don't think you have parents who will go back and forth about, well, you know, you're not my kid's mainstreamed, why can't yours? Like, what are you doing wrong?
• 36:53
  Speaker A: Yeah.
• 36:53
  Speaker B: And it's like, okay, well, they're not the same kid, right? So I'm doing what they need. And if that's what your kid does, fantastic for you. But like, that doesn't mean that I have to be doing the same thing or that my kid benefits from the same thing.
• 37:06
  Speaker A: Right? Right.
• 37:06
  Speaker B: There's just too much, there's too much infighting. And then you have like the RFK crap that they've been spewing out now. And now you have a group of people in our community who have not felt, seen and heard for a very, very long time now feel like they're being recognized.
• 37:24
  Speaker A: Right?
• 37:24
  Speaker C: Right.
• 37:25
  Speaker B: But it's by the wrong people for the wrong reasons. And as a community, I feel like we have failed each other because we have allowed differences to divide us and we have become so tunnel visioned in what our own experience is that we invalidate or dismiss people that we just don't understand because it's not our experience. We have to stop that. We all, everybody belongs. If you have an autism diagnosis or you're someone who works with autistic kids, maybe a special ed teacher or whatever it is, we're all part of this community. And if someone is struggling, regardless of whether they have a kid with level one or level three, they need support. Maybe it's different, maybe the intensity is different, maybe the challenges are different, but it's, you know, it's exhausting for them, you know, and, and we just need to be sensitive to the fact that like, I mean, it, it is relative. You know, it's just, it's frustrating because, like, I know the struggles that I went through with my oldest, and so I know that there are so many people out there who are dealing with something similar or worse somewhere in between. And I also know what it's like to have kids that are level one and doing really, really well. So I feel like I'm in a unique position to be able to stand back and recognize that guys, like, we're all dealing with something.
• 38:48
  Speaker C: Right.
• 38:48
  Speaker B: It all falls under the same umbrella. We're all part of the same community. And I understand how, like, someone who's dealing with the challenges associated with level 3 can be significantly more challenging than, than some of the quirky, weird stuff that's going on.
• 39:03
  Speaker C: Right.
• 39:04
  Speaker B: And we just, we just have to, we just have to acknowledge.
• 39:09
  Speaker A: We just have to have talk. We have to talk and we have to. I, I ran to a mom and listen. And listen. And again, one of my charges for this platform or whatever this is, advocacy work is staying curious to someone else's life does not erase yours. It doesn't mean that your life is gone by acknowledging what someone else is experiencing and going through and saying it Might, if anything it might challenge you to expand your orientation about what autism and the and struggle means. I, I believe that that is has meaning. You know, I ran into this mom at like a hot works, you know, sweat studio or whatever for working out and it was so quick and it was like this immediate connection. She said, I overheard you saying that you have two autistic children. I have a son with autism as well. I come here to sweat it out during my meetings. And I said, yeah, this is, you know, we all, we all have our things for self care. And she said, she just started crying and she said, can I give you a hug? And I. And we did and we hugged and I said, we are so like, like thirsty for community now that like somehow this whole global village of social media has like, I love the way that I found autism friends and mothers that to share, you know, story with. And at the same time there's something about it that's lacking in the physical community of support that like, is so apparent because, you know, when's the last time that someone has been hugged through it or when's the last time you've actually grabbed the hand of the woman that is doing the same kind of work as you're in like, you know, physically, like, I see you, like, that's energy and this transfer of like positive I see you energy. I just want to keep coming back to you because curiosity, if we're not going to be in person, let's at least stay curious. Let's at least stay, you know, if we're not going to be hugging and saying, I see you, I love you, I'm so proud of what you're doing. If we can't have that, at least say like, how can I help you today? What's going on in your world today?
• 41:07
  Speaker B: Let's be curious, not judgmental.
• 41:08
  Speaker C: Right.
• 41:09
  Speaker B: That's Ted Lasso. There was an episode of Ted Lasso where he talks about that like, you make assumptions without knowledge.
• 41:16
  Speaker A: Yes.
• 41:17
  Speaker B: I was telling people recently that it's like we get judged based on the decisions that we make.
• 41:23
  Speaker C: Right.
• 41:24
  Speaker B: Without anyone knowing what our options were.
• 41:28
  Speaker C: Right.
• 41:28
  Speaker B: So like me staying home to be full time caregiver, that was judged because they didn't understand or even bother to ask, like, well, what were your options?
• 41:41
  Speaker A: Right.
• 41:41
  Speaker B: There are no options. There was nothing that would work that wouldn't create more problems than it solved.
• 41:46
  Speaker A: That's right.
• 41:46
  Speaker B: And you know, everything about autism parenting is outside the box thinking for the most part, I think and it's not going to make sense to Everybody. There's maybe things that you do with your kids that don't make sense to me. Like, I may understand conceptually, but it doesn't resonate with my life or whatever. But you know what? Maybe there's something I can learn from that, that I can adapt to the needs of my kids.
• 42:08
  Speaker A: And if I faster at doing that, like, becoming more to saying, like, that's why I love that. I know it's a risk for you and I because we're voicing this. Like, we're putting this out into the universe. Like, this could be a private phone call that I just share with a fellow parent. We're saying that. No, we want this to be helpful. It is. So. Isn't it so cool when a fellow parent in whatever part of the spectrum you're parenting goes, God, you know, have you tried this? And then you try it, and you're like, I really never thought in a million years I was gonna work.
• 42:41
  Speaker B: Yeah.
• 42:42
  Speaker A: I just really didn't. And you. And you're like, I understand how if we can reorient to possibility without closing in on our presumptions, assumptions, and statements. It's uncomfortable. Don't get me wrong. It's so uncomfortable to sit with others that you think, how would they know? Or, like, they don't know.
• 43:01
  Speaker B: I've learned a lot from neurotypical parents, like, parents raising neurotypical kids, because I spent a large part of the first younger years with my kids parenting their diagnosis more than I was parenting them as kids. And it took other parents coming to me and saying, like, are you sure that's, like, autism? Like, they weren't arguing the diagnosis, but, like, that. Like, my kids do that.
• 43:20
  Speaker A: Yes.
• 43:21
  Speaker B: And then. And then it just. It just connected. Like, oh, my God, they're still kids.
• 43:25
  Speaker A: Yes.
• 43:26
  Speaker B: There's. There's going to be. Kids make dumb decisions. They do stupid things.
• 43:30
  Speaker A: Right.
• 43:30
  Speaker B: It's not always. They may be more prone to it, or maybe judgment can be impaired or whatever. Whatever it is. But they're still kids.
• 43:36
  Speaker A: Yes. And I. And I love that, too, because I. In a. In a different way, I thought similarly about having a boy and a girl with the same diagnosis two and a half years apart from. Sometimes I wish I could go back and get a PhD on, like, what really is autism here? And what is, like, my son being the only boy with two big sisters.
• 43:55
  Speaker B: Yeah.
• 43:56
  Speaker A: And what is him being a boy like? I took them both to the pool yesterday. My daughter is just so sweet and just puts her letters in a row, and she's Swimming. And, you know, she has her outburst and she screams because she doesn't have her talker and whatever, but my son is thrashing in the water. Thrashing. He is thrashing like a wild, feral puppy dog.
• 44:17
  Speaker B: Like, having fun kind of thrashing or.
• 44:19
  Speaker A: Because that's what little boys do. Right. And so there's this, to your point, like, you live in the diagnosis so much, and I'm like, you know, I can think to myself, this is really good. He's getting all that sensory input, all this stuff. Or maybe he's just a little boy.
• 44:34
  Speaker B: Maybe they could both coexist at the same time.
• 44:36
  Speaker A: Exactly.
• 44:37
  Speaker B: Maybe.
• 44:38
  Speaker A: Exactly.
• 44:38
  Speaker B: Any. Any. Give me. Most little kids or boys that you toss into a pool are going to splash. They're gonna throw water, dunk it, like, do all the stuff that kids do. They may do it, like with my kids when they were younger, they would do all of that stuff. They didn't always understand the social aspect of it, like when to quit or when was too much or reading the room. And that can complicate things. But the bottom line is they're still doing or trying to do things or have the same needs. Correct. As other kids. You know, and there may be challenges that interfere or that exacerbate things or make it more challenging or harder or whatever, but they still have those same basic needs for connection and acceptance. And, you know, it's very easy. And the world at large sees our kids and they see the autism. They don't see the kids.
• 45:32
  Speaker C: Right.
• 45:32
  Speaker B: They see dollar signs of how much it's going to cost to provide accommodations for them at school or, you know, I've had plenty of times where. Where my kids haven't progressed or my oldest didn't progress far enough or fast enough in, like, physical therapy. And so the insurance company decides that they're no longer worth the investment when it's like, let's give them, like, six more weeks.
• 45:54
  Speaker C: Right.
• 45:55
  Speaker B: Because you're going to end up having to cover something else because he's going to fall.
• 45:58
  Speaker C: Right.
• 45:58
  Speaker B: And, you know, it's like, we just. We just need to be kind, be.
• 46:04
  Speaker A: Open and be kind and stay curious and say that, well, I.
• 46:09
  Speaker B: And stand together stick together.
• 46:11
  Speaker A: Correct. And I. I really believe that when we ask for what we need, that it shouldn't be seen as a thing of, like, taking from anyone else. That when we ask.
• 46:23
  Speaker B: Or you just want special treatment, or.
• 46:24
  Speaker A: You just want special treatment, like, yeah, genuinely, there's no re. It's so hard to ask for support. It is. So it. It is Such a, it's such a quieting of the ego. Right. To. To go, I need this for my child. And I know that it's such a big ask and that it. That takes a lot of conscious reservation of your own feelings of self worth. And so I think that what, you know, I love that. No, it takes courage. And it takes courage ask for help and support. And if we can just. If that can be an overarching theme of anything that you and I ever talk about, it's that stay courageous to what your life and your children need, because what you live and experience is real. And by standing firm in that and then saying, I need support for my child in this, that is never the wrong thing to do, ever.
• 47:10
  Speaker B: It's. It's equity.
• 47:12
  Speaker A: Correct. Exactly.
• 47:13
  Speaker B: Yeah.
• 47:14
  Speaker A: Rob, this was a really deep conversation. I always thought we were going to talk about, you know, self care, going to the gym, the things that we had to do to like, keep our mind sharp.
• 47:24
  Speaker B: Yeah, well, do a whole other one on that. Die on that hill, too.
• 47:29
  Speaker A: Well, thank you very much for your time. You have. And you know, the quote says, you know, we're all like, currently any leaders are standing on the shoulders of giants. And you have really been one of those giants that allowed me to realize that sharing and asking questions and discussing profound autism was a worthy cause for my. From my heart and soul. So thank you for what you.
• 47:47
  Speaker B: Thank you.
• 47:48
  Speaker C: I.
• 47:48
  Speaker B: Well, thank you again for having me and for everything that you're doing because it matters. And connecting with like minded people is never, ever a bad thing. I don't think so.
• 47:56
  Speaker A: It's not. It is not. All right, well, Rob, thank you very much. Back to our busy wild.
• 48:01
  Speaker B: And I'm gonna go find my allergy eye drops because.
• 48:03
  Speaker A: Exactly. Exactly. Well, until next time then on the Inch Zones podcast.
• 48:09
  Speaker B: See you guys.