[00:00:01] Speaker A: Welcome to Shining Inspiring Voices of Autism.
[00:00:04] Speaker B: With show host Jennifer Dantzler.
[00:00:06] Speaker A: My name is Emily and I have autism. Thank you for taking the time to learn more about the world of autism. If you enjoy what you hear today, don't forget to follow this podcast. Hey everyone, this is Jennifer Dantzler and I'm the executive director and founder of inspirend, a nonprofit whose mission is to create truly inclusive communities through education and engagement. The goal of this podcast is to shine a light on real people and their stories in hopes of inspiring, inspiring others who are on this journey of autism. Either themselves, their child, their loved one, their co worker. I truly believe ignorance is not bliss and we cannot be inclusive communities if we do not understand the people in the community.
With autism now affecting 1 in 31 people, we need to get louder about this topic. We recognize that autism is a spectrum. There are a lot of people with a lot of different needs, a lot of resources available or none available. And we know that in every episode we can't meet everyone's needs for their specific interest.
However, we hope that in each episode you do gleam some kind of insight as to how you can help your child or yourself be a better advocate. And as we go through our podcast, our goal really is to address the entire spectrum, the various needs, the various environments that we're going to be in. And we hope that there's something in every episode for each one of you. So let's get started.
We are so honored to have these three women on our show today. They are the writers of an amazing book titled Autism Out Loud. Their book is on the New York Times bestseller list. It really is a how to manual support system and awareness tool all in one. The best part about this book is that it gets real. It talks about things that are people are hesitant to talk about normally. After listening to a podcast about a book, I often think, I don't know that I need to read it now. But I promise you that is not true about this one. There are so many incredible passages, beautiful insights and insightful messages that you'll want to read every word of it two or three times. I think the biggest thing for me was your transparency and vulnerability. That really helped break the cone of silence. So with that said, I'm here today with Kate Swenson, an author of a huge online presence with Finding Cooper's Voice and a parent to Cooper and three other children, Carrie Cariello, and author of several books, what Color Is Monday? Someone I'm With Has Autism and a TED Talk letter to Jack, A Blogger, another huge online presence, and a mother of five, including Jack. And then Adrienne Wood, an author, a doctor of philosophy, blogger, a mother of four, including Amos. All of these people have had incredible speaking engagements and have a huge presence online.
I am so honored to have them today with their book talking about autism out loud. So thank you all for being here.
[00:02:42] Speaker B: I love that. Thank you.
[00:02:44] Speaker A: Well, I mean, I could spend the whole time talking about all of your accolades. So we will just let people. But we will talk again at the end about where people can find you. Why did you all write this book?
[00:02:55] Speaker C: I can start Kate here.
So we came together, we met online, much like the support system starts in the world of disability. I think a lot of times we're isolated in our communities. How do we find people?
We started our pages online, found each other, and I think we wanted to tell a story from start to. And I'm air quoting finish because there is no finish. But from beginning to present. You know, you just said, I love this how to manual and support system. Give the parent that is struggling or looking for community or looking for something a place to come to and find everything in one place. We wanted to wrap it up for them.
[00:03:33] Speaker A: Wonderful. Who would you say is your ideal reader?
[00:03:35] Speaker B: This is Carrie. I get a lot of feedback from my audience that says I didn't know anybody in my world who had autism. I don't have a child with autism. I think the beauty of this book is it truly is three stories in one. Three very different autism profiles, three very different children, three very different families. And I think it appeals to a broader circle. You know, neighbors, grandparents, teachers, clinicians, service providers. Anybody who wants a better understanding of the neurodiverse world that we live.
[00:04:07] Speaker A: Yeah. So I guess I could almost say that was a trick question because yes, the answer is everyone, even people who are not necessarily in the world of autism, should read this book so that they could understand the world of autism. Right.
As of today, with recording this, autism now affects 1 in 31. So as I always say, ignorance is not bliss. And so we need our communities to.
To become more knowledgeable. So as all of you or you just said, are in a slightly different phase of the journey. What would you say right as of right now is probably the most important skill that you have taught or are teaching your child that is moving them towards independence.
[00:04:41] Speaker C: Here you go.
[00:04:42] Speaker D: First, you've done the most independent.
[00:04:44] Speaker B: So Jack just turned 21 this spring. He is living in a supported community with a lot of scaffolding and a lot of you know, we're still working on life skills and building those muscles and all of that. So what is the most important thing? Well, it's a really interesting.
[00:04:58] Speaker A: It's.
[00:04:58] Speaker B: It's a phrase I call untethering. When Jack moved away three years ago, he was still so deeply connected to us. It could be 30 texts an hour sometimes about what kind of taco he ate for lunch.
And we had to work really carefully at getting him to understand that, you know, his frontal lobe could stand on its own. So that was a big piece of it. And then secondly, I share a lot about sort of what I call when autism grows up and some of the things we're facing now, you know, alcohol consumption, online dating, sexuality, like you said earlier, all those things that people sort of put their hands up and say, no, no, I'm not, I don't. I, I'm not going to talk about that. We really had to get serious about providing Jack with this, the toolbox, to stay safe online because he did connect with people he thought were peers online. And then it turns out in, in person, it was two men. So, you know, launching him has showcased all the gaps in our parenting and things we thought we covered, but we didn't. So it's an, it's definitely a never ending journey.
[00:05:58] Speaker D: Adrienne Amos is the youngest. He will be 12 in November. And I think for us it's these baby steps. But last summer he went to spend the night camp for the first time. This summer he went to two. And so that was big for him, but also for me. So I think some of this, when we think about independence and I'm pretty new to it, but I think we think of for the child, but it's for me too, because I want to be tethered. So I'm trying to step away just so he knows what a world is like without me in it. So the camp thing and experiencing normal homesickness, you know, I celebrated like that's a normal feeling to have. So I think any practice of just doing something without me is a benefit and a benefit to the people that come after me someday. And that's really important for my, particularly for my other three children who will be here when I'm not. And you know, what I do to help him be independent.
[00:06:53] Speaker A: Okay, Kate, you're up.
[00:06:54] Speaker C: Cooper has significant challenges, you know, related to autism. He's considered severe. He's considered non verbal, can be a really tough guy sometimes while being lovely and wonderful. You know, both things can be true.
But I think when you have A, you know, a child where Cooper falls, you don't know what they know. And they may have a very large and high unwillingness to learn or try. And so for Cooper, I would say for the first 10 years of his life, everything was no. Like, he wasn't going to try a new cookie. He wasn't going to try riding that horse. He wasn't going to try. You know, I could list all these things, and I had a mom years ago, I can't even remember her name. I interviewed her, and she said to me something really, like, really firm, and I did not like it. It made me uncomfortable. She said, you're not doing him any favors by doing everything for him. Made me feel prickly. And I was like, you know, you want to get defensive. But in reality, she was so right. Because, you know, I'm gonna say the thing no one wants to say. One day I am gonna be gone. Or one, I'm aging. I'm getting older. I won't be able to do all the things he needs me to do for him anymore. So he needs to learn. So I think the biggest thing that we've done is we've started pushing gently. Not to melt down, not to. But you can get your own plate. You. You know, it's always, no, but you can do this. You can do this. And the progress we've seen, the gains are huge. He's doing things I never thought possible.
So push gently when you can.
[00:08:20] Speaker A: Great.
[00:08:21] Speaker C: Doing them any favors by doing everything for them.
[00:08:23] Speaker A: That's a wonderful statement. I love that. Thank you. You know, in one of your chapters, you talk about your new normal. And I absolutely love this chapter. I actually present workshops on this and how to help parents if they can not get backed into that corner. And I know, like Kate, I think you talk about making dinner by a headlamp because of not being able to have light bulbs in the house at the time. Is there any advice in that you could all give parents to help, if possible, prevent yourselves from getting back to the corner. I know one of you talked about not being able to make left turns on the way home. And we talk a lot about that in trainings about from the beginning, go home a different way because of construction and traffic and accidents that happen. So, you know, build in that flexibility from the beginning. But is there any kind of insight or suggestions that you have for parents?
[00:09:09] Speaker B: Well, I love Kate's phrase, push gently. In our house, we say stretch without breaking. Like, picture a rubber band that you're stretching and stretching, and the left turns was our story. And Jack was in preschool at the time, and I couldn't figure out, he really didn't have a lot of language, what the issue was. But he went bananas in the car. And I remember his preschool teacher, a lovely young woman, said, make every left turn you can on the way home. And you do have to dive into those uncomfortable moments to show them that they're resilient and that everybody's going to be okay. And so that really stuck with me. And whenever we came up against, like being backed into a corner by rigidity in Jack's world, I sort of tried to stretch him, show him that he was capable of flexing.
[00:09:54] Speaker A: Yeah.
[00:09:55] Speaker B: And we call those zigzag moments. We name everything in our house. And when he was little, we'd say, it's a zigzag and we're gonna go a left turn again. And he became like familiar with that concept.
[00:10:06] Speaker A: So you front loaded him using the term zigzag. I love that. And I think it's hard because for parents it's almost a little counterintuitive. I know if I'm gonna make that left turn, I'm going to frustrate my child. What parent wants to intentionally frustra child, even to the point where sometimes it might cause a meltdown? For me as a clinician, having that four year old have a meltdown looks a lot different than that 14 or 24 year old having to melt down. And so as you can, yes. Stretch the rubber band without breaking it. I absolutely love that. Do either of the other two. Do you have any other suggestions or what would you say to parents?
[00:10:38] Speaker C: We lived in crisis for many years and I'm not using that term lightly. And crisis doesn't for us, didn't happen overnight. It's a slow build. And so I do a lot of speaking and I'll share these funny stories. Like, you know, co lined every chair up in our house, or he broke the light bulbs, or every door had to be open, Every door had to be shut. Blinds had to be open, had. You know, I would list all these things and people sort of laugh and I'll tell his funny stories.
But before you know it, you're trapped in your home living this life that you don't want to live and don't know your way out. And we're experiencing this a little bit now. We're seeing a huge rise in OCD in puberty, which is very common, FYI. I wish someone would have told me that huge spikes and it's very controlling and you can't really fix something for us, at least during crisis. So once you get to the crisis point, you're not gonna, like, put a band aid on it. We almost have to get him out of it first. We have to, like, do we need to up meds? Do we need to change a therapy? Do we need to do. You know, it's like, we have to get out of it, and then we can start to fix it. But I just really wanna speak to those parents. If you are in, there's someone listening right now that's gonna be listening. If you're in the crisis, just know that you're not alone. You got to get out first before you can fix it. And it's hard.
[00:11:53] Speaker A: Absolutely. Adrian, do you have any insight?
[00:11:56] Speaker D: Well, Kate, it just makes me want to cry, thinking of how hard it was. Of like, somebody had a soccer game. You couldn't get Amos in the car. Like, there was no plan B. And just crying and saying, like, what are we going to do? So I would say for us, medication has really helped us push and get try new things.
[00:12:14] Speaker C: Going to Sawyer's baseball games, you know, equivalently to soccer, it's like, that was so important to us. We started going on days where there were no games if you have time. And then we would sit there. We would stay for five minutes, and then when we would go to a game, we'd sit 100 miles away.
You have to do it when you're not in the crisis moment.
[00:12:32] Speaker D: And I wasn't that smart. What I did was found a teenage babysitter to come over and help with the remnant.
[00:12:37] Speaker C: Oh, for sure.
This took years. Don't. Please don't act like I know what I'm doing. It took years.
[00:12:42] Speaker D: That really is smart.
[00:12:44] Speaker C: I wouldn't have been able to go. This thought just came up yesterday. I was thinking about how autism has impacted our lives. Jamie would be a coach. My husband, he would be a coach to all of Sawyer sports. But we had to make a decision. And this is going to sound harsh, but it's our reality. If he became a coach, I wouldn't have been able to see any games.
It's not fair, but it is reality.
[00:13:02] Speaker A: Very true. Okay, so actually, that helps to segue into the next part of the conversation. You all have a whole chapter on anxiety and comorbidities and medication. And I've had so many parents over the years. We've had medical comorbidities. That one point. I worked with a child who would consistently hit his fingers on the edge of a table and we tried everything we could behaviorally. And then I really encouraged the family to go seek medical help. And it turns out he had a Chiari malformation. And so his fingers were essentially tingling all the time. Like when your foot falls asleep and you want to bang your foot on the ground and to wake it up. That's what he was trying to do. It was brain surgery, but it was minor brain surgery. As soon as they fixed that, that behavior was gone. But even more frustrating is I would say, our mental health comorbidities. Right? And you all talk about that quite a bit. If you have a neurotypical child or adult who has OCD and they go to the doctor, psychiatrist, they get help for that ocd. But I still am seeing so many times these doctors are saying, well, that's just autism. It's not. And I think you all talk so beautifully about really, you know, having to still follow your gut. Right. You all talk several times about just sort of continuing to follow your gut. But then I also have families who are still hesitant to get on medication. So can you all talk to that a little bit? And why do we think there's still such a stigma around medication?
[00:14:18] Speaker B: Kate mentioned earlier, I wish somebody had told me about the OCD in adolescence. And I look back to 6 year old Jack and sitting in the doctor's office thinking, why did no one tell me that, you know, like anxiety was so prevalent, you know, why did it take me getting here and being. We were like in survival mode mode, just getting this kid to move around the day. We were one of those parents that were like, no, no, no, we don't medicate. That's crazy. We're going to try a million other things that did not pan out. And I remember having somebody important in my universe say, listen, if the medication is going to work, you're going to know it. You know, not always a quick acting thing, but it will take, it will alleviate these symptoms. And I always want to say Jack is diagnosed with severe anxiety and also ocd. His OCD is ramping up a little bit now at 21, medication just smooths the edges. It doesn't take everything away. It is not a fix all or a cure to this anxiety, but it lets their brain clear a little bit. It took me really having to put myself in Jack's shoes and think, what is it like for this little boy to try to get through the day and be afraid of everything?
So I would encourage parents to try that.
[00:15:28] Speaker A: Adrienne or Kate, anything on that?
[00:15:29] Speaker C: This is maybe Naive. But we didn't know medication was an option. So we were from very rural Minnesota. No one ever mentioned it. I'm telling you, we had a kid who didn't sleep for six years, and no one even mentioned sleep meds. Like, it was never. Nothing ever came up in our world. It was from the school of, oh, that's just autism. Oh, that's just autism. So now I am, I quote myself saying in my writing and everything, if some doctor says to you, well, that's just autism. Get up and walk out. Because they are not looking at this whole picture. Our life was completely and entirely controlled by Cooper's anxiety. And I was still saying, that's just autism.
And a friend of mine said, that is not. That is anxiety. Like, what you are living. You can't live like this. I made an appointment to see a doctor, and I canceled it. And then I made it again, and I had a whole list of these things, and I thought, and parents are used. Autism. Parents are used to fighting for everything. So I went in with, like, a notebook of all the things that I thought were wrong. And she looked at Cooper for five minutes, and she's like, how can I help? Like, let's get something in this boy. And you hear these just scary stories about things. And I was so nervous. But Cooper would not be where he is today without anxiety medication.
[00:16:37] Speaker D: Oh, I would totally second that.
[00:16:38] Speaker A: Yeah.
[00:16:39] Speaker D: I didn't have any real preconceived notions. I think I thought that, like, Kate, I didn't have time or like Carrie, to say, well, we don't want to do medicine. Like, it was like the house was on fire and somebody offered me water. I mean, I was going to take whatever it was. We did get into a pediatric psychiatrist, which I think was great, instead of just having your regular pediatrician try to navigate this process, because they tend to push you towards ADHD meds. We know that that's not, according to my psychiatrist, the right thing, but it's always a struggle. We've had an appointment every three weeks this summer because we're trying to change up meds and getting ready for fifth grade. And it's just so helpful. And I have three typical children first, so I could really see the difference. And maybe at that point, just given up. Like, I'll do anything that helps us.
[00:17:23] Speaker A: Carrie, you explain the phrase tell, discover, and decide. Can you explain a little bit more about that?
[00:17:30] Speaker B: Yeah, I think that's in the chapter when we talk about how, you know, you have this diagnosis and this kiddo. And now you have to explain it to people. When I wrote that, I really took myself back into the memory vault and it was like, telling was difficult. I wish they made, like, a Hallmark newsletter that you could just send to your entire, you know, Christmas card list.
I came up with a toolbox of things I used when I explained Jack's diagnosis. But then I have to talk to new parents, and hearing those boards is really hard.
[00:17:58] Speaker D: Now.
[00:17:58] Speaker B: We didn't have levels back then, but if we did, Jack would be considered a level one or high functioning. We were able through the years to look at it as more of an opportunity to decide how to redesign our family in a way and kind of clear out all of the clutter. So that's sort of the discovery piece of it. Like, okay, Jack couldn't go to a ball game every night. That was not in his skill set. So we turned to dinner every night. That's something he really enjoyed participating in. So once you discover all the ways that you can sort of, you know, integrate this diagnosis and this child, and then you can sort of decide moving forward what really is a priority to your family.
[00:18:34] Speaker A: Okay, wonderful. Love it. And then in chapter five, you talk about the grief, joy, and love, especially as it relates to siblings. Throughout this book, you all talk a lot about the siblings and how you as a family unit, maneuver life.
So can you all talk a little bit about when it comes to the siblings? Let's start with Kate. You actually talk about parentification. I loved that. And actually, when I read in the book, I think I've used it like five times since then. Can you explain a little bit about what that is and maybe how can parents watch for that and their other children?
[00:19:06] Speaker C: Sawyer is two years younger than Cooper, and so they have really grown up side by side. And, you know, I always say Sawyer's never known a day of life without autism. He's always been thrown into this autism world. And for many years, they were like two ships in the night. They didn't acknowledge each other. And then I would say around maybe ages 8 and 6, we moved into a new house, and Cooper no longer wanted his own bedroom, and he wanted to be in a room with Sawyer. And that was a really big deal for Sawyer. And what was so great about it is Sawyer could still play and do all of his things and live his life. And then at night, they would come together and I would, you know, hear them giggling outside the bedroom door. And it was just so special. Their relationship really strengthened and deepened throughout that. It didn't look like a typical sibling relationship at all. It very much looked like Sawyer had become the older brother protecting this boy. And a couple years ago, and I talk about this in my first book in the bonus chapter, Sawyer had one week. And he's like an athletic, social, happy guy. He had one week where he cried every night. He cried every night about autism. And we couldn't, like, get to the root of it. And when we finally figured out, we had found out that autism was being used as a name to tease people at school. And they all knew about his brother, and they were embarrassing him on the bus. And so we got Sawyer in therapy fast. I mean, I'm telling you, it was like the fastest thing I've ever done. And I was sitting on this couch alongside him, talking to this awesome therapist. And I was telling the story about how Sawyer always feels the need to protect cooperation. And I'm like, he doesn't have to, though. Like, mom and dad are both there. Like, he doesn't need to hold on to him on the boat. He doesn't need to hold his hand, putting zero pressure on him. The therapist explained parentification where the siblings and often happens in families with addiction, the older siblings start caring for the siblings because mom and dad are incapable of doing it. At the time, Sawyer was assuming this role of a parent, and I. I took it as an attack. Like, I was like, what am I doing wrong? And he said the sweetest thing. He's like, you're doing nothing wrong. You're just modeling love for Cooper. And Sawyer's just doing it. You can't stop it. Since that moment, we've worked really hard for Sawyer to have his own life. He has sports and friends and play dates. We don't want it to be too muddled. We want him to have his own path.
[00:21:20] Speaker A: Okay, wonderful. Adrian, you talk about. I think one of your other children had, like, 100 day of school thing. And so can you share a little bit about that conversation that you had? And if you could have 100 of anything, what would it be?
[00:21:33] Speaker D: My oldest son, Thomas, maybe was in the third grade or something, and Amos must have been three, because the great thing about what Kate and Carrie and I do is that we kind of have a very detailed journal, right. Of what happened. So sometimes you forget. Like my daughter, for instance, I have no idea what her first word was. I just have to make something up because clearly I didn't write it down. Amos started talking at about maybe three and a half. He always said, mama, this hundred day of school, my son Thomas said, I wish Amos could have words, and he started naming the words. Like, he would know our names. He would do all these things. And autism or maybe having a child with a disability, we've always been so united, even at that age, of, like, he is the center of our universe, just in a really lovely way. And he does. You know, some children like Cooper might not have words, and he does have words, but just that that was the dream of a family.
[00:22:33] Speaker A: Well, and I think throughout this book, the underarching message that I heard is, your universe does need to change a little bit, and it does need to sort of focus around autism, but that's okay. And once you realize that and stop fighting that, it becomes more manageable. Like, that's just the theme that I kept hearing throughout the book. So I very much appreciate that, and I think a lot of parents need to hear that. Carrie, so you talk a lot about sort of the stares and the judgment that you can get out in the community. What advice would you want to give to a parent who gets those stares in the grocery store or at the ball field while their child is playing with the baseball game off to the side, and your child's constantly, repeatedly walking around the, you know, the field or what have you, like, what advice would you give to parents?
[00:23:15] Speaker B: I stumbled across a line kind of recently that I love and I wish I had known back then, which is, I assume, good intent, Assume people are watching because they're unsure of how to help you. They're curious about this person in your world. You know, we still get stared at. Jack is 6 foot 5 inches tall. His shoe is the size 15. I mean, he just walks in a room, and people sort of sit up a little bit. And then he moves differently. He flicks his fingers. He does all sorts of, like, little stims constantly. And I've really learned to not feel that. That mama bear kind of defensive, you know, people. It' human nature for people to observe others. We. We observe each other all the time. And just sort of keep in the back of your mind that perhaps they're just curious or thinking about something in their own world that that connects to yours.
[00:24:05] Speaker A: I love that assuming positive intent, because I don't know, as a society that we always do that. So I think we could use more of that across everything we do. Adrienne, in chapter eight, you talk about motherhood versus caregiving. Can you explain the difference and how do you balance that?
[00:24:19] Speaker D: I never really knew there was a difference. What I've realized is I had three children first. And the great thing about the book is that it really, as Carrie said, it's very different. I had a life for seven years, wasn't marked by disability, and so then it was. But I've known what the two things are and how they're different. And I think for me, the motherhood versus caregiving is. Most of my friends now have these older children, and they're going to college, and they're doing all these things where I'm still here getting a babysitter. And that's very much the caregiving side. And being able to talk about it can make people uncomfortable. You know, I think one thing people will say is, oh, well, everybody does that. Everybody feels that way. But helping others and I think this book, one group that it's helped, that I didn't expect is my friends, you know, and helping them know what that feels like and to not try to make me feel better, but just to be like, yeah, that's hard. Adrienne has to get a babysitter to go meet for a glass of wine, you know, and it's okay just to acknowledge what it is.
[00:25:22] Speaker A: We always talk about the fact that the world of autism can be isolating, and you all talk about that throughout the book, too, and just really encouraging other parents to continue to build and keep that village right of support, because you just can't do it on your own. In chapter nine, Kate, you talk about presumed competence. I know we just talked about assumed positive intent, but you talk about presumed competence, and I think it was in the context of ARD meetings and conversations with teachers and advocating. Can you explain that more? Because I just. I think that's a brilliant phrase with.
[00:25:50] Speaker C: Cooper, you know, especially. We don't know what he knows. And on top of that, we weren't always listening in the correct way. He may have been showing us, but he was. Instead of verbally saying it, he was showing us in other ways, and we weren't correctly listening. And as Cooper's gotten older, there are so many things that he knows that we had no idea. And so now, as he's aging, I really want to presume competence. And when someone asks me a question about him, I really try to answer as age appropriately and as respectfully as I can about what he knows. And that takes time, though. I mean, I really do think it takes time to figure this stuff out, how to parent these kids. He's always listening. He's so nosy. Like, when we pick him up from school, he will get in the car and then he'll roll the window down and Listen to me talk to his para. Like, he's, like, he is such a stinker. He is listening to everything. And he will remind you, like, if I say we're going to Autism family camp tomorrow, like, tomorrow morning we're going to Autism family Camp, like, he is not gonna let that get by. So presume competence in these kids. They know so much.
[00:26:56] Speaker A: Awesome. Awesome. Okay. And then, Carrie, you talk about Jack being high functioning, but high functioning does not mean easy functioning. And I've used that expression so many times since I read your book.
Can you expand on that a little bit?
[00:27:10] Speaker B: Yeah. And I just want to springboard off of something Kate said. So we had the opportunity to meet Kate's kids last year, and I got to spend a little bit of time with Cooper. And it's fascinating because Jack and Cooper's profiles are very, very different. Yet I would say Cooper's more dialed into the world around him than Jack is. Jack tends to be really like, much more connected to his inner self than he is in observing or listening or taking in new information.
So autism is just like, it's just wild to me in that respect. When I wrote that piece on the book, I had to do a little research, you know, and I wanted to present the high functioning side really respectfully.
But I looked into what does high functioning mean? And it's basically the way in which the diagnosis impacts your daily life.
And so Jack definitely as very independent guy at point this. This point, but he's living out and about in the world without us. And while he's very scaffolded and supported, just this week he went to get his ice cream. He can walk to where he likes to get his ice cream. He'll cut someone off in line or he'll rush to the to. To get to the door first. You know, I no longer have the ability to interpret him to the world. And it shows up for us in a real way as safety comes concerns and that. And Kate and Adrian have had the opportunity to talk to Jack, and Jack will say whatever is on his mind and not really massage it. He could do that to the wrong person on the wrong day and things could get really complicated. So I honor what other people carry in terms of levels of autism and all of that. But. But certainly the high functioning families face their own challenges.
[00:28:50] Speaker A: And so going off script a little bit here, does Jack tell people he has autism? Do you talk with Jack about it and will Jack say it? So if he cuts someone off and they immediately get angry, what does he.
[00:29:00] Speaker B: Say and do so Jack does is not very forthcoming about his diagnosis, but he will use it to get out himself, out of a jam.
He's recently written up with a notice of misconduct because he went into the IT department very deregulated. And again, we're talking about a very big human being. And so when he got that write up, he. He said to them, I have autism. And I was. He was stimming. He knows when he's stimming, but it's showing up for us. He just went on yesterday, his 14th job interview. This one was for Subway. He goes on, indeed. And he selects all these jobs he thinks he would be good at. And I'm like, what would you do at Subway? Like, the idea of Jack putting a sandwich together for somebody else is, like, hysterical. He'd be like, no, turkey. It doesn't taste good.
[00:29:48] Speaker A: You don't want jalapenos on that.
[00:29:50] Speaker B: No, no. Not a whole. I'm sorry, not a whole sub. He refuses to tell people during the interview that he has autism. And it was a really, like, sort of bittersweet moment for me because he said, I will never get hired if people know that I have autism. My husband and I, at this point, have decided to just sort of be observers to this. He's working with a case manager. He's doing job inter. Mock interviews and all of that. But at 21, it's becoming Jack's story to share. And we'll just see if at some point he thinks, oh, that might explain some of my vulnerabilities if I were to share my diagnosis.
[00:30:23] Speaker A: Wow. And I think that's very true. And there's a lot, as I had mentioned, that we do with neurodiversity in the workplace and how to create that psychological safety, because we're missing a whole population of incredible workers out there that can bring so much value to companies, and we just need to get them to open their eyes to it. So, okay, in chapter 11, you all talk about the family unit. Kate, you talk about finding a new rhythm as a family.
Trading off who goes with the children to other events, being prepared to cancel plans at the last minute. What helped you come to peace with that, with the way that is? Like, how did you get to say that? Well, that's okay.
[00:30:58] Speaker C: I wouldn't say I am fully at peace with it quite yet. We have four kids, and I don't want to miss anything.
I know firsthand how precious it is when a child is in a dance recital or a game or something, because. Cause we've never had any of that with Cooper. So I want to be there. And no one ever told me how hypocritical your kids get as they get older. If you miss something, they will let you know. They'll even let you know. If you're only there for 10 minutes, they will let you know. And I have to move mountains to get there for 10 minutes. To be clear, you know, the important part of that is to not have resentment. And so my husband and I work really hard. If he goes to this out of town tournament, then I will get the next two games. Or we have a Skylake calendar in our kitchen. It is our, you know, full working brain at all times. And we, we work really hard to make sure someone's always there. But the reality is Cooper typically stays home and we have to move around him. And if you don't have a sitter and we're. We don't have much of that. Someone has to stay home.
[00:32:02] Speaker A: Yeah.
[00:32:02] Speaker C: So it. And I'll add in as parents age or if you don't have help from parents and no one's offering. And so it's getting.
I thought it was hard when he was 3 and 4 and he was, you know, running the ball field.
It's hard at 14 when you have a 12 year old that's like, why aren't you here?
[00:32:20] Speaker A: Yeah.
[00:32:20] Speaker C: So I wouldn't say that I fully accepted it yet, but I'm doing my best.
[00:32:24] Speaker A: Well said, Carrie. You talk about a mother's grief and a father's grief and how they look different. And I just thought that was so profound. Can you talk a little bit about that?
[00:32:33] Speaker B: Years and years ago that my husband. I always went up to bed first and he would sort of stay on the couch. And I thought that's when he ruminates about all the things he's worried about, you know, that's when he really dives deep emotionally about Jack and all the ways that he's working hard to be what we, you know, call this forever father and a mother's grief. It fills the air, it's colorful, it's loud. It's research. It's. I've got this program. This is what we're going to do next. And at least in my marriage, the dynamic is I researched some programs to the nth degree, and then they sort of bring it to Joe on a silver platter like, this is it. I have found it. And then Joe systematically, like, pokes holes in it, to my utter dismay. It's not changed, by the way. That will be our dynamic till the day we die.
It really showed up for us, the grief, when we were on the verge of sending Jack to this program. And we set up for hours every night, turning over and over all the things that could go wrong, all the things Joe was worried about. He really didn't want to send him. He wanted to wait a year or two. I felt like Jack was ready and the timing was right. So it's still, you know, perhaps even more. As our kids become young adults, our different ways of grieving collide.
[00:33:47] Speaker A: And then as you talk about that and that transition in chapter 13, you all talk about what the future looks like. One of the services that I offer is futures planning meetings. And parents will often do the initial one and then, like, very distinctly avoid me in the future if I bring up that F word, the future planning. What advice would any of you have about giving parents the. The prompt or the encouragement to not avoid that because the future is going to happen? And so, like, what advice would you give parents to have those meetings?
[00:34:17] Speaker D: I need advice, so I'm not going to answer the question.
[00:34:21] Speaker C: Okay, well, so it's funny because you can look at us where we're at three different ages, right? So this. It's really interesting. So I'll go next.
I need all the advice so I can fully admit that. But for so long, it wasn't even a possibility. Cooper getting older, Cooper leaving. Cooper, you're such. In crisis. And I really get annoyed by. Take it day by day, hour by hour.
And I know it's a wonderful sentiment, and it's so true, and I've been there. But you reach a point now Cooper's gonna be a freshman in high school. Like we have. I have goosebumps. We have four years, you know, maybe a couple years. If we have transition, like, we're. We're knocking on the door now. And so you have to start thinking about it. And my only advice, because I just know where I am, is it takes time. So this is. These are not easy decisions, and they're uncomfortable conversations.
And Adrian and I talk about the future a lot. We really, truly do. We talk about it a lot. My husband and I, not so much. He'll. I think we both want Cooper to stay with us as long as. Right? You know, but it's funny, he started to say things now like, well, I'm going to be in Arizona on the golf course. Cooper better want to ride the golf cart. You know, he's starting to think about it, too, in his own way, Carrie. Like in the. In the father way. Right? He's not thinking about like researching group homes. But he's like. He just said just the other day, he's like, I can't believe we're going to have to get a babysitter for the rest of our life. And that was a big thing for him to say. So I'm in the middle and it's just for parents where I am, it's uncomfortable and it takes time.
[00:35:52] Speaker A: Carrie, do you have anything?
[00:35:53] Speaker B: Yeah, I mean, I obviously can only speak to the profile that Jack has, that, that higher functioning profile. And I talk to a lot of parents in that space, you know, and my red flags is only I can do this. He'll only eat the spaghetti I make, only I can do his medication.
And there can be a bit in. In this space a codependency that develops. And I was certainly in on it too. Jack and I were basically companions by the time he was out of high school. He went everywhere with me. He planned my. Our meals. He was. We were really, really enmeshed. And I offer this to parents, practically speaking. The best things we did, even though we didn't know it at the time that prepared Jack for launching is around 12, he started to manage his own medication. He told me when he needed refills, he. I knew he could take it safely every night. We gave that to him too. That was his own and we had him as. As Adrian mentioned earlier, he spent the night places. He went to a sleepaway camp, he went to grandparents every now and again. We knew he could sleep outside of the house from us. And that was really, really important. I share this with parents.
I have. My fourth is going to college in three weeks and I am so emotional about that. Her stuff is boxes over there. I hate sending them, but I can't imagine Jack coming back here to live anymore. He doesn't fit here. It's like he outgrew us like a sweater, you know. It would not be natural for him at this age to live in his childhood home. This home stopped becoming a learning environment for him. We took him as far as we could go. I couldn't go to the Purple Finch Cafe every Thursday for the rest of my life for chicken tenders. I took him as far as I could and. And it's really difficult to acknowledge that. But there's other people that were ready to pick up the autism baton and run with it, and they have. He never would have flourished the way he has if he stayed in our home.
[00:37:49] Speaker A: Very well said, Carrie. You're so good at the imagery and like make you setting the picture for some of these things. Okay, as we go to wrap up, what would be one last comment, one last majorly profound, incredible insight that y' all have? Like, what advice would you want to share with parents? Listening.
[00:38:05] Speaker B: Well, I think the book really circles back to one very universal theme. It is going to be okay. It's going to be messy. It will be unpredictable. You will find these hidden triumphs that you never in a million years imagined celebrating. It's just going to be okay.
[00:38:23] Speaker A: Wonderful. Kate or Adrienne, who's next?
[00:38:25] Speaker C: I think that is the biggest one. I think we get asked this question a lot, you know, and you can say so many things like, build the toolbox and build a community and find your people and, you know, all the different parts. It's like, I guess there were so many times where I was like, I don't know how I can keep going. I don't know how I can do this. And the thing is, you do. You do keep going. You know, it does get better. It may not get better in the way that you pictured it getting better. That's kind of the uncomfortable part of that conversation.
Parts of Cooper. So many things have gotten better. Some have gotten harder and some have stayed the same. But it does. You do keep moving. It is okay. We are happy. We are a really happy family. And I'm saying that coming off a unbelievably horrible meltdown on Friday that broke me and had me in a depression all weekend, and here I am. We're okay. We're still moving forward.
[00:39:17] Speaker A: Okay, Adrienne, bring us home.
[00:39:18] Speaker D: Yesterday we were. I took Amos to the pool. He's almost 12. The pool is filled with mothers and toddlers, right. And Amos loves a baby float. So you're not allowed to take rafts in the pool, but you can take a baby float. So we really have pushed this rule. And we have this giant cozy coupe for like a six month old to fit in. He starts on the ramp of the. It's like a pool where you walk into it and he has to sling his legs over the side.
I saw these women that are more my age contemporaries, and they're all treading, you know, in the deep end. And I'm up there, you know, chasing the large boy in the cozy coop. And I mean, I could. Sometimes it makes me want to cry, but then I'm like, you have to laugh. Like, this is a funny, funny life. Wow, what a perspective. In a perspective, you're making the world better in a way that you couldn't in any other way. And someday Amos is going to be in the world and I'm not going to be here. But those small children are going to remember that boy in that big cozy coop, you know, and maybe they're going to run into him at the grocery store like Carrie says, and they're going to be like, oh, I know him. I know who he represents.
[00:40:21] Speaker A: Wonderful, wonderful. Well, as our listeners would probably attest to you, this has been incredible, incredible insight. Again, I think the thing that you all do just the best is again, sharing the vulnerability and honesty that so many families experience and honestly are afraid to say. Right. Whether it's out of judgment or embarrassment, sometimes even, you know, possible legal ramifications. I know, Kate, early on in the book, you talked about the locked doors and all the things that have to happen in the house to keep your child safe. And, you know, and I think you are all just, just tearing down barriers beyond belief. So as we wrap up, where can everyone find each of you and get more of you?
[00:40:57] Speaker C: I am on Facebook, Instagram, YouTube and Substack. It just keeps growing all under finding Cooper's voice. And I just try to share a glimpse into our life. Nothing profoundly amazing, I don't think. Just us living life with alongside autism. And then I wrote Forever Boy, which came out. Oh, my gosh, it feels maybe it.
[00:41:19] Speaker D: Was four years ago.
[00:41:19] Speaker C: I can't believe that. Three years ago. And then again, Autism Out Loud, which all of us wrote together. And both of those books are sold wherever books are sold.
[00:41:28] Speaker A: Wonderful.
[00:41:29] Speaker D: Yeah. And I'm at Tales of an Educated Debutante on Instagram, Facebook and YouTube and just can be found talking about what's happening in the world, not just autism, teenagers and college and all sorts of just anything that happens in my sphere.
[00:41:45] Speaker A: Wonderful. And Carrie, Yes.
[00:41:46] Speaker B: I am also Facebook, Instagram, substack. I love my substack page. Lots of resource articles there. And then this week I got on TikTok. I swore I never would, but I think there's a. That's where a lot of the, the new families are. And, and that's the feedback I've been getting. So that's been kind of neat to be over there. I have what colors Monday.
One of my favorite books that I've written is Half my Sky, which is a series of letters to everybody in my world. And then, then the one I'm very proud of, Autism Out Loud, instant New York Times bestseller.
[00:42:18] Speaker A: Incredible. And I had heard another YouTuber talk about. They think it might have been one of the first ever autism books to make the New York Times bestseller. So congratulations to all of you. The. The insight is incredible, I think the support and the you know, you'll never know the influence that you've had, but I can assure you that you're making a huge, huge difference in the world of autism in these families. So, so thank you all for being here. I really can't thank you enough.
[00:42:44] Speaker B: Thank you, thank you.
[00:42:45] Speaker A: If you need help or resources, whether you're a parent, someone on the spectrum, a business or a community organization who want to know more or need help or want to share resources, please reach out to
[email protected] Inspire ND invites you to Taste of the Town Lake Houston Thursday, September 11th from 5 to 8pm at the Humble Civic Center. Taste of the Town is the largest food and beverage festival in the Lake Houston area, showcasing menu items from area restaurants, bakeries, caterers and breweries. It is guaranteed to be the Food Adventures paradise and one of the biggest social events of the year. It all benefits Inspire. ND's mission to create truly inclusive communities through education and engagement. Tickets are available now by visiting visiting tot2025eventbrite.com that's tot2025eventbrite.Com or inspirend.org thanks for joining us on Shining Through Inspiring Voices of Autism. If you enjoyed this episode, be sure.
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[00:43:53] Speaker A: Share it with others who want to celebrate neurodiversity. Until next time, keep shining.
