It’s our first minisode! We felt compelled to record this because we realized something in the past few weeks:
not everyone actually knows what neurodiversity means or what autism spectrum disorder actually entails.
In today’s episode, we’re getting back to basics and digging out the DSM-5 to define these terms for anyone who might not be aware. We also share why we prefer using the term neurodiversity, and how it’s become more widely used in recent years.
Let’s normalize the experiences our children are having and recognize that they go through life differently than many people do.
In this episode, you’ll learn...
[01:00] A Graham-ism and Rylan-ism to open the show
[09:24] Why we’re getting back to basics and talking about the terminology used for neurodiversity
[11:31] What autism spectrum disorder is and how that diagnosis can differ greatly among families
[14:21] How the term neurodiversity is used to describe the idea that people experience and interact with the world around them in different ways
[16:44] Why the term neurodiversity seems to be used more in our culture even though it’s been around since the ‘90s.
If you just can't get enough of us, don’t forget to join our newsletter and check out our other projects.
Links mentioned in this episode…
Bookstore: Marvelous Me books
Transcript:
Gwen:
If you have an appreciation for honest and often irreverent conversations about parenting humans with neurodiversity, you have found your home. I'm Gwen.
Kristen:
And I'm Kristen. And together we have 35 years experience parenting some fiercely amazing humans, which gives us an endless supply of stories of inspiring failures and heartbreaking wins.
Gwen:
Welcome to You Don't Want To Hug, Right? We've been having these conversations for years, cracking ourselves up. We've always wanted to share the hilarity and the hard with other parents, so here we are.
Kristen:
Grab a cozy blanket and a beverage and go hide in a closet nearest you.
Hi, Gwen.
Gwen:
Hi. How are you my friend?
Kristen:
I'm doing great. How are you?
Gwen:
I'm doing pretty great too. Do you have an opening Grahamism for me today?
Kristen:
I do, and it's not actually something he has said, but something he's done that I think our theme today is, autism parents out there. Here's some hope for you.
Gwen:
Yeah.
Kristen:
Yeah. So Graham goes to our local community college and is taking a class ironically called Interpersonal Communication.
Gwen:
Sounds like a really good fit for him.
Kristen:
Yeah, and he loves it. One of the major projects they had to work on was to do a StoryCorps interview with somebody, and he picked my husband, Greg. He picked his dad. And it's the most amazing interview. And actually you can listen to it on our website if you subscribe, because I have put it there, it's amazing.
But the thing is that Graham is taking this class and using the Disability Services Center by himself for the first time, and he has a 504 plan, which you can do in college to give you some accommodations around having some extra time on assignments and things like that. But he needed to be the one to tell his professor that he has a 504. He did that all on his own, sent an email to his professor, spoke to her, and then handed in one of his big assignments on his own on time, even though he had the extra time. I don't even recognize this human.
Gwen:
[inaudible 00:02:32] a cheers for our friend Graham.
Kristen:
Yeah, Nailing it.
Gwen:
Forget this transition program that he all out just Ubers home from without telling anybody because he hates it so much, because he just wants to go to college.
Kristen:
That's right. He has said the transition has broken him.
Gwen:
But he is not wrong.
Kristen:
He's not wrong because it's a great program, it just wasn't ... It was really hurting his self-esteem. And so we're following Graham's lead and he wants to be a college student, and he's showing us that he is. So there you go.
Gwen:
Amazing. Following our kids' lead is not easy to do. We so often assume that we know what they're ready for.
Kristen:
Yeah.
Gwen:
But okay, so my Ryland is in the same vein. So I've worked really hard to just set up opportunities that I see as future success for him, future opportunities. And a camp here, it's called Camp Roger, he has gone successfully to Camp Roger for the last four years for summer camp. And it's a week long, and we were terrified. I mean, the amount of notes that I sent to them and meetings I had with them before his first year was, I mean, it was borderline ridiculous now that I think back on it. But they were so accommodating and they were kind of new to this world of working with kids of all abilities, and they embraced him. And guess what he didn't need? Me. He didn't need me. He was completely fine. They fell in love with him. They were like, "We have amazing stories to share with you, but none of them were hard." I mean, it really humbled me.
So he has gone there for four years. And last year they allowed him to go an extra year, even though he aged out because they just wanted him there an extra year, and he doesn't care. He would be in a cabin with eight-year-olds and not notice the difference. We have the same social expectations for them-
Kristen:
100%.
Gwen:
... as he does an infant. So when we picked him up last year, the director of the camp stopped our car and she said, "We cannot imagine a summer without your son here, so we are creating an internship that we want him to apply for so that he can work here." And Tim and I just teared up instantly and couldn't believe that she was actually telling the truth, so we just decided, "Let's just wait." Well, she was telling the truth.
Kristen:
And remember, friends, that camp for our kids, not so great.
Gwen:
No, no. So when you find one that works, you just move heaven and earth to be a part of that community, which we have. So he interviewed last night over Zoom with the camp director and the kitchen director, because he would be a kitchen intern. And I mean, I prep him in a way that you can for these types of things. I encouraged him to think of questions to ask, and I wrote his questions down because you can't read his handwriting, and encouraged him to think about what excites him about it, but very minimal prep. And we just thought, "Well, we're just going to see how this goes."
He nailed this. My husband and I of course stood in the next room so we could listen to everything he was saying, but didn't let him see us because we wanted him to be independent. And I think they were encouraging him to take the lead on this too. This kid, I would've hired him for a professional role. He nailed this interview. He was so professional and so appropriate. He didn't talk about Pokemon one time, Kristen.
Kristen:
What?
Gwen:
Can you even imagine? It was like a 40-minute interview and Pokemon did not come up.
Kristen:
What?
Gwen:
And he only talked about tortoises twice. And he got to talk about his rosemary shortbread cookies because duh, it's a kitchen internship.
Kristen:
Oh, yeah. So totally appropriate.
Gwen:
Right. They were like, "So what excites you about this role?" He goes, "Well, is there room for me to bring in my own recipes?" And you could see them both smiling, peek around the corner, they're both smiling. They're like, "Yeah." And he goes, "Wow, my rosemary shortbread cookies are ... I'm kind of famous." No, he called them infamous. "They're infamous. And one pie plate will make eight cookies, so I can do the math and figure out how many we need to make for the staff."
And they were like, "Yeah, that's amazing. Maybe we can even do them for the whole camp." He's like, "Yes, I think that'd be a great idea." And then he wanted to know if he could bring his Switch, that was his burning question.
Kristen:
Of course.
Gwen:
And I was hoping he wouldn't lead with it. He didn't. It was the last question he asked, and he almost hesitated to ask it. I could feel like the technology rising in him. And he's like, "So one more question. Hmm, well ..." And I was like, "Ooh, he wants to know about the Switch." "So I know as campers, we don't have any technology, but when I'm a counselor role, can I bring my Switch?" And they were like, "Yeah, Ryland, you'll have your own downtime that you can absolutely." He goes, "Huh, cool, cool. Yeah, okay, that works."
Kristen:
Hey man, a Switch and some infamous badass rosemary shortbread cookies-
Gwen:
Amazing.
Kristen:
... it doesn't get better.
Gwen:
And he knows that they've asked Pokemon to not make it a PokeStop so that kids can't find Pokemon on the property, so he knew that.
Kristen:
Okay.
Gwen:
Yeah. And then they told him the pay, which is pennies, but he lives there for three weeks, my friend. Lives in staff housing for three weeks. And they told him the pay, he goes, "You know, I feel like the experience is really the pay here?" What? What? Tim looked at me. He goes, "Who is that?"
I mean, he freaking nailed it. We couldn't have been more proud. And it really made us think, if he can interview like this at 16, he's going to be fine. So guys, this is not a child that could have done this a year ago. Hold out hope, okay. There's so much hope, so much hope.
Kristen:
Our kids changed.
Gwen:
That prefrontal cortex-
Kristen:
Yeah, it's kicking in.
Gwen:
... it wakes up and it just starts firing.
Kristen:
Well, I wouldn't get carried away with the firing of the prefrontal cortex.
Gwen:
Well, in moments.
Kristen:
It takes a lot longer.
Gwen:
It fires in moments. Yes. This mini episode that we're doing was birthed because being in the roles that we are, I think we often assume that there's a general understanding of the things we understand, even some of the more, to us, basic.
And I realized in the past weeks, just talking about the term neurodiversity and the spectrum of autism, how people, even within our circle, don't even know what those terms necessarily mean. Especially if they raised children 20, 30 years ago. The term neurodiversity is pretty new, relatively. So we wanted to do a mini episode that really defines what we mean by neurodiversity and how that term came to be, because it's really been a social movement.
And an interesting story. I met a couple just randomly because they have an Australian Labradoodle puppy and I'm getting one, so naturally I was a magnet to their dog and started talking to them, as we do, and they have a son or a grandson with autism. And he is nonverbal. And in talking to them they kept mentioning their daughter is working for a cure. And that term to me felt like, "Oh, that doesn't feel true to how I feel about my son."
So we got into a discussion about that, and it was really interesting to hear the perspective of someone with a grandson who is nonverbal, who is not able to live independently, never will, and that they really do have a different perspective than me as far as finding a cure for so much of what holds him back. Whereas a cure to me, I wouldn't want that for Ryland, but I think it's important that we talk about the differences between that spectrum because we're all a part of the same community, but have very different experiences. So that's kind of what is birthing this mini episode.
Kristen:
Yeah. And thinking about, let's start with just talking about autism spectrum disorder, that now the CDC, according to ADDM surveillance data of eight-year-olds across the country, one in 36 children are diagnosed with autism, which is just an astronomical number. Which means that there are a lot of families out there in our country who are dealing with vastly different experiences than their neurotypical peer families, but also really different experiences from each other.
So the DSM-5, which is the diagnostic manual that developmental pediatricians and clinical psychologists use to determine if somebody has autism spectrum disorder, which used to be a bunch of different disorders and now has been rolled up into autism spectrum disorders. So the term Asperger's, which people might be familiar with, is no longer a diagnosis. However, our community, culturally, many people still identify with Asperger's so you'll still hear it. But primarily autism spectrum disorder has some criteria that you have to meet in order to have that diagnosis, and that is deficits in social communication and having repetitive behavior and restricted interests.
What's really hard I think about such a broad spectrum of a diagnosis is that can manifest in so many different ways and to such different levels. So there's level 1 through level 3 in terms of a diagnosis. Some families are out there living with a family member who is nonvocal and is just struggling to or doesn't have any communication to get their basic wants and needs met, or maybe having incredibly challenging behavior that keeps them from being able to interact with the community. Or they are having a family member who is highly vocal, academically-oriented, but can't leave the house because of crippling anxiety, or doesn't have a friend, or can't even open the mail, doesn't know how to pay a bill. There's just such a variety of experiences just within an autism diagnosis.
Gwen:
And then you have kids that are nailing interviews at the age of 16, but who are still incredibly challenging to parent. I mean, vastly different experiences.
Kristen:
Right. Or my son, who is doing really well in college, but will also cry in the middle of class, as a 19-year-old having an emotional meltdown and unable to really have peer friendships in person. That's a really, really hard thing for him. So yeah, such a range of experiences. And that's just autism.
And when we think about neurodiversity, that is a term that we're now using to describe the idea that people experience and interact with the world around them in different ways. So there's no one right way of thinking, learning, or behaving, so that it's not necessarily a deficit, it's a difference. And so neurodiversity has actually become more of a social justice movement. And I think maybe not everybody's aware that even middle schoolers, high schoolers, college kids, are self-identifying as neurodiverse because they're struggling with their experiences being atypical. So that term has come to encompass an even broader spectrum of folks, not just people with ADHD, Tourettes, autism.
Gwen:
Dyslexia. My daughter fits into this neurodiverse category too. It's such a large category, and I happen to love the term because it doesn't feel as labeling to me as others might. Like if I just say I have two children who are both neurodiverse, it's pretty open-ended, but it also just signals that their brains do operate in different ways than what we might consider to be typical.
Kristen:
It also, I think, normalizes some of these different experiences. A lot of autistic people no longer want to be identified as having a disorder. So autism spectrum disorder is actually not a term that they feel comfortable using. They are autistic or have autism, which is a different way of being, but it's not a disordered way of being. So that's another thing that we're seeing. My son, Graham thinks that autism is a gift, so he says he's gifted with autism, which is amazing.
Gwen:
I love that.
Kristen:
Although he understands that it makes things difficult for him. He also really likes the things about himself that make him him, that are traits that are autistic. It's really flipping this experience on its head and we love the idea of using this term, and just want to make sure that our audience really understands how we're using it and why we're using it the way we are.
Gwen:
And I feel like it ... I mean, it's been around since the 1990s is when that term started to be used, but I do feel like it's been more recent that it's being used culturally in a more normative sense. Do you agree with that?
Kristen:
Yeah, definitely.
Gwen:
And I don't know, it's interesting. We could do a whole episode on just why is that, why is that all of a sudden becoming a more popular, quote unquote, popular word to use when it has been around for a long time. Because it really has been the last probably decade, 10 years do you think, that it's being used more regularly. Maybe it's being used more regularly in the medical community and that's helped spur it, or there's just more advocacy happening through podcasts and representation and media. I don't know.
Kristen:
There's definitely more awareness and acceptance. And when we're talking about autism in particular, I think that because so many families are ... Obviously one in 36, so many families are experiencing some version of autism, that it's more normalized.
Because when my kids were little, some of the things that people would say to me were mind-blowing. Even just having triplets, that piece of our difference in our family. I remember one time we were ... Of course, I had a triplet stroller, which was the most ridiculous contraption you've ever seen. And mine happened to be in a row instead of three wide, it was three in a row, and they were staggered like stadium seating.
Gwen:
So you had to run to get to the front.
Kristen:
Yes, totally. And each kid liked to be in this ... So I had them in birth order.
Gwen:
Of course you did.
Kristen:
And I had to have Graham in the back, and then Hayden would be up front because he couldn't have any obstruction to his view. And then poor Cora was in the middle, just like, I don't know, whatever, in her pink tights and people would say, "Oh, you have three boys." And I would say, "Except for the one in pink tights. However, Cora is now Jameson, who's transgender, so maybe people knew something.
Gwen:
They knew.
Kristen:
But I was walking with my ridiculous contraption, and a man walked by me and said, "I hope to God you figured out what caused that." And I just was, "What?" I was horrified.
Gwen:
Did you punch him in his face?
Kristen:
If I wasn't afraid that this contraption would roll away from me, I would've kicked him.
Gwen:
In the groin.
Kristen:
I've also had people tell me, "You're a saint. I would kill myself if that happened to me," which is-
Gwen:
"I couldn't do what you're doing, but good for you."
Kristen:
Right.
Gwen:
"I could never adopt, but bless you."
Kristen:
Yeah. Oh, yes.
Gwen:
So many face punching that I have had to go back from.
Kristen:
Lots of, "God bless you." I'm like, "Yeah, yeah, He did, He really did. So thanks."
Gwen:
"She sure did bless me." I'm sure that's what they meant.
Kristen:
A-holes.
Gwen:
A-holes.
Kristen:
But I just feel like because there's such a cultural uprising happening now when it comes to race and culture, and I mean, there's an incredible divide in this country, which is very hard. But also I think people are really standing up for their right to be who they are.
So you're going to hear us talk about our experience with neurodiversity, and obviously we're hyper aware that our experiences are not representative of the neurodiverse community. That there are families that are having very, very different experiences from us. And we are going to be interviewing other families who have cultural difference, racial differences, ethnic differences.
Gwen:
And ability difference.
Kristen:
An ability differences. So we just want to make sure people understand that we know that we're only representing a slice of what people are experiencing out there in the world. But the common thread we believe with all our hearts is that we are having a different lived experience and that we deserve to have community and not be isolated, and-
Gwen:
That our kids deserve dignity.
Kristen:
Yeah. So that's why we're doing what we do, so we hope you keep listening.
Gwen:
And that it's hilarious.
Kristen:
And that it's freaking hilarious.
Gwen:
For example, this couple's like, "Gwen, our goal is that our grandson can walk through a restaurant without sampling everybody's drink as he walks by." And I was like, "Oh, okay. Yep." So yes, I have experienced that, until Ryland hit about 11 or 12 and then he would stop picking up random strangers drink classes. But at 16 we've got that covered, and he's 22 and still doing that. So while we both chuckled also really hard.
Kristen:
Yeah, really hard.
Gwen:
Yeah. You don't want a grown man picking up your Diet Coke and taking a sip from your straw.
Kristen:
And some families could never bring their family member to a restaurant.
Gwen:
Right.
Kristen:
So, yeah.
Gwen:
Yeah, different experiences. We would advocate for a cure for that behavior.
Kristen:
Yeah. There are lots of interventions. And I think that's where we need to keep working, is helping people in the community be more accepting of people's differences so that if somebody does take a sip of your diet soda, maybe you don't shoot them. I don't know.
Gwen:
Maybe. I would embrace it and invite him to sit down because he would immediately be my people, but not everybody feels that way.
Kristen:
Clearly.
Gwen:
All right. I don't think we're going to end with a last word on this one. We're just going to make this a short one. A short one, but an important one.
Kristen:
Yes.
Gwen:
Thanks for listening, you all.
Kristen:
Thanks, friends.
Gwen:
Thanks for joining us for this episode of You Don't Want To Hug, Right? We'd sure love it if you'd subscribe to our show in your favorite podcast app. Missing an episode would be catastrophic.
Kristen:
And if you just can't get enough of us, join our newsletter and dig into all of our other projects and ways you can connect with us at youdontwanttohug.com.
Gwen:
And food for thought, if you need to create a panic room out of your closet in order to find that parenting kindness, we offer our fullest support. See you next time.