Living With Autism

Hi, my name is Eric Raschke, and I'm the author of To the Mountain. My son is the inspiration for the main character of the novel, and he is joining me today.

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Floortime is more like, it's more like Montessori in a way. Like, it's, you're on the floor and you let them do what they want to do and you follow their role. Because in the Netherlands where we were, they go to daycare really early. He would start going to daycare at 6 months and then like around 1.5 and stuff like that, he was, it was very typical. He wasn't responding to his name and and he wasn't like, you know, connecting with the other kids and doing other things that were strange. And then they were sort of like, you know, uh, something's going on here. They didn't know what per se. And, and of course at the time it was the understanding of autism in the Netherlands is, is, um, it's much more behind than it is here. So nobody really knew. And then he went to a special place where, uh, like this is a whole sort of the weird myth of like that the in the Netherlands that the healthcare system is so good. It's really good. It's a really good safety net, but it's not, it's not, um, it's really good if you, if you don't have any money or you don't have anything, but if you really want sort of specialized treatment and stuff like that, or it's really not good. It's not the place to be. And so like you had, he went to a place where they had kids that were had all sorts of like disabilities and injuries and stuff like that. And then the guy was like, the one guy was just sort of like, I think he might have autism, I don't know. And then I started reading about it. I read about Temple Grandin. I read lots of Temple Grandin.

She's pretty awesome.

I was like, oh, oh, this sounds very familiar, you know.

So how old are you?

Um, 14.

14. Nice. Are you in 8th grade or is that a freshman?

Um, I'm in 8th grade.

We moved here from the Netherlands because he wasn't getting an education there, and he's going to a special school here in New Jersey now. And, uh, um, and so the, the whole system is different, so that's why I didn't know whether he was a freshman or in 8th grade.

Got it. Oh yeah, it's different everywhere too. That's, that's totally fine. Um, where were you guys at in the Netherlands? My grandma is from Rotterdam.

Oh yeah?

Yeah, so that's every time I hear the Netherlands, I always think of that. What has it been like? I kind of want to focus more on like navigating autism and what that's been like, because from my perspective, I mean, it can totally reroute your entire life course. Like you almost become— you'll do anything, right, to help your kid out. And so what has that looked like for you guys as far as like navigating? I mean, even school, like you, you came from the Netherlands over to the US so that he could receive better schooling.

Yeah, well, I mean, everybody has given up. I mean, my wife and my other two kids are back in Amsterdam still. So, um, yeah, so until everything, whether we could see if it worked out or not, you know, then we just, we decided to not make any big moves because first we had to get him into the school and it's a really expensive school and, uh, and you know, we— there was just a lot of steps involved. So, um, we decided to sort of see how far we were going to get with that.

We came here, you do—

we came to— we came here 2 years ago.

Yeah.

And you went to Celebrate the Children. Yeah, he went to Celebrate the Children. The school's called Celebrate the Children. So he came, basically like I had like a thick folder of therapists basically saying that Kes could never read and that I was in denial and that he would just to give up and, you know, just to sort of accept that this is what he was. And then, um, we took him to a program in Dallas a social therapy one, and he did really, really well. And then I brought him here to celebrate the children in the school he's at, and they were like, within 6 days they had him reading. And yeah, so I was like, we have to make this work, you know? But yeah, I mean, literally, I seriously have a thick binder of therapists saying that he would never read and stuff like that. And now, I mean, now he's even like, where's your script? Go get your script. Make sure your script He wrote a whole— him and a group of other kids at his school wrote a play. And so he still struggles with reading, but he has all these sort of other ways of reading and writing and stuff like that.

Yeah. Wow, that's truly incredible.

Yeah, they wrote a script. They're putting on a play in a month or so.

Wow, that's awesome. What is it about?

It's a medieval.

Medieval?

Yeah.

What's your name?

What's your character?

I'm Little Cool.

Little Cool.

Little Cool? I love it.

They sort of let them write how they write it, and they write it in their sort of associative thinking. So the whole play is very associative. And people— it sells out every year because it's so weird and abstract that people are fascinated by it because they just, they let— they go off in all these different directions, you know? Yeah.

And, uh, yeah, it does sound fascinating. So you guys made this move 2 years ago?

No, last year. This year.

Last year.

Okay. It—

wait, in the middle of COVID Like, you guys came over?

No, we were already— we had been working on it for a long time, and then COVID happened, and we're like, okay, well, we can't really just stop now. And I mean, I have to say though, to be honest, like flying back and forth from the Netherlands during COVID has been kind of amazing because there's nobody on the planes.

Yeah, yeah.

And trip tickets have been super cheap. So I mean, it sucks to get all the tests and stuff like that, but it's been— it hasn't been nearly as bad. I mean, the only thing that sucks is like quarantining, and he's been doing a lot of homeschooling. Okay, so it kind of sucks that we're here and he's doing homeschooling, but, um, Otherwise, it's been—

Today was in person.

Yeah, you're doing in person now.

You're gonna go back to— you're doing in person now? Yeah. Was it hard for you to do homeschool or not really?

It was pretty hard.

Yeah, did you miss your friends?

Yeah.

Yeah.

What do you think of your dad's book? Have you read your dad's book? Has he shared it with you? Yes. Tell me your thoughts on it.

Don't look at me.

I don't even know.

Have you guys read it together or did you read it by yourself?

Um, I read it by myself.

Yeah?

Yeah, on an audio thing, right?

Yes, on an audio thing.

Oh cool, okay, so it was like reading it to you kind of?

Yeah.

Awesome, okay. I want you to tell me kind of what you, what you thought about it. Good or bad, all of it.

Good.

Good.

Yeah.

Tell me a little bit about it. What was your favorite part?

The part where he rides a coyote.

He fights a coyote? Whoa, that sounds pretty cool.

It's funny because I'm kind of stuck right now reading this part where, where we first started off doing this, um, they would ask— people would say like, what's your favorite part? And it's this part with the coyote, which I, I think is not the strongest part of the book, but Kess really liked it. So then I started reading that, and then of course when you're doing readings you want to read something you've been practicing and rehearsing. So I'm sort of stuck reading this part that I don't think is necessarily the best part, but it's still Kes's favorite part.

Love it.

So. Why, obviously, I mean, he inspired this book, right? I mean, your experience raising a kiddo with autism, is that a huge part of it? What else inspired it?

No, I mean, I couldn't, I say this very honestly, I couldn't have written it without him. I mean, I read a lot, a lot of books where about autism by authors and I'm like, this does not ring true at all. You know, I mean, you can really tell when the writers of something, even TV show or movie, when they have experience with autism versus when they don't, you know, it's very clear. And, And I mean, it's funny too because even his little brother, his smallest brother is 4, and there was a conversation at his school because they start school before, and they were talking about it and they were like, "Oh, we think this girl is autistic." And then his little brother is 4 is like, "No, she's not autistic." So like when you live with someone who has autism, you really begin to understand what autism is, you know, versus like this sort of applied perception of autism, you know, which it's one of these things like I've wanted to write about this for a while actually, is how it drives me crazy because I heard it today actually where someone's like, oh, that guy's really autistic. And it's a really derogatory thing, you know, and it's also, it just sort of reconfirms the sort of idea of autism, you know, being one way, you know, and I really think people should stop saying it, but it's It's a very layered sort of way of thinking, you know, and once you sort of embrace it and you sort of go with it, then it becomes a whole different sort of world. And that's good and bad, you know. When it comes to practical things, it drives me crazy.

Yeah.

But when it comes to like music and arts and stuff like that, he's very creative and he comes up with very interesting stuff. Because he sees the world differently, you know. So his music is really good. He hears things all the time and he puts it into his music, these sounds and these things, and, and that are very different from everything else and that nobody would really pay attention to, but he does. And, and that, that's sort of the specialness of it, you know.

I love that. So having him and raising him has kind of allowed you to see the world now in a different lens, obviously.

Yeah, I mean, I'm a writer, so I look in different ways, but yeah, I think, I think sort of like I said, your question originally was about the main character, and I mean, I don't think I could have written the main character the way I did. I think it would have been a very different main character. Yeah, like the main character has a doll that he talks to all the time that keeps him company. And it's funny because, you know, Kess has a good friend that also has an imaginary friend too. And he wears his clothes, he sort of adjusts his whole behavior to his imaginary friend. And when we're out, the father is, you know, he's like, yeah, like, it's so crazy when I read your book. I was like, I just saw my own son, you know. And like, it's those kind of things that, these very sort of inside weird things that you begin to learn about autism, you know.

Did you write this book for like the autism community, or did you write it more for the demographic of people so that they could understand autism better, or maybe both?

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Yeah, no, I wrote it, I mean, I wrote it for parents too because I did a lot of research about kids who have, who are farther on the spectrum than say Cass is, and you read about it probably, I would say, maybe once a month or so, once every other month where There's a mother, usually it's a mother and a son or a mother and a daughter, but usually a mother and son where they've done like a murder-suicide because she just doesn't know, she gives up. She doesn't know how to take care of her kid anymore. And I've actually like, I'm in this weird pen pal-ish thing with this woman who had a son who was very, very severely autistic and her son's, you know, starved to death and she was locking all the things and she's kind of crazy. I think she's kind of autistic herself. Now she's in jail. And it's just these very bad situations where parents who can't handle it sort of come into it, and they really struggle with like, they're just not capable of taking care of a child. Like yesterday we were in Manhattan, and what happened yesterday in the elevator?

Oh, I, yeah.

You guys got stuck in the elevator. And on the 20th floor, and it was just this sort of panic, and my car was parked outside and illegally parked, and I was thinking like, I'm gonna get a ticket, my son's in the elevator. It's just you're suddenly in these situations that you would never ever be in, you know? And the doorman's like, what's going on? Why is he, you know, I'm like, he's autistic. He goes, oh, okay. And they're like, you know, like, so you're in these weird situations that just, they slowly bring you to the brink sometimes. His whole life is— it's his life. So like I always say this, it's hard for me, but it's even harder for him to deal with stuff too. So it's, it's, it's a— yeah, it's sort of a give and take. You have to put it into perspective, I think, you know.

Oh yeah, 100%. Is it hard for you to sometimes tell your dad how you're feeling or what you're thinking?

Uh, yes, it is hard.

So would you, when you get creative, would you rather like draw or write music or write your screenplay? Does that help you kind of express how you're feeling?

Yeah, I guess both.

All of it?

Yeah.

Well, what's all the— tell her all the things that you do. I'll be right back. What are all the things that you do? You do music. Yeah, what else?

Do you write music?

Yeah.

And you also make music?

Yeah.

What do you use, like GarageBand and stuff, or what do you use?

Um, BandLab.

BandLab?

Yeah.

Oh, I've never used that before. What else do you do?

Well, sometimes I, you know, ski rock climbing sometimes.

Do you do that with your friends or just by yourself?

Sometimes I do it by myself.

Sometimes? All the time you do it by yourself, right?

Yeah.

And you draw?

Yeah, I draw.

Why don't you give her one of your shirts? Go show her one of your shirts that you did.

Yeah.

Go see if you can find that. You're going the wrong way. Your room's that way.

Oh.

This is what I'm talking about. You get a lot of shoes on the wrong feet every day, pants on backwards, but— but he'll remember where he dropped something 4 years ago, you know, and he'll remember certain sounds from certain places. But yeah, he still hasn't gotten putting the shoes on the right feet the right time. Kiss in your closet.

That's what's pretty, uh, about like Temple Grandin's story, right, is that she has that photographic memory. So anything she's ever seen, she remembers, which is just so incredible because I think most of us, I mean, can barely remember stuff, you know, from yesterday. So you're raising this insanely special human, you know, who thinks completely differently than a lot of the— than a lot of society.

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