Episode 49: "What is Autism?" (Part 2): Navigating the Social Labyrinth
Apr 11, 2024
Show Notes
Navigating social relationships can be a complex, nuanced journey for Autistic people, and the way it presents in day-to-day interactions and situations is incredibly diverse.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, discuss the complexities of friendship management for Autistic individuals, as well as explore the connection between relationships and common Autistic traits such as repetitive behavior, difficulty with flexibility, special interests that are intense or atypical, and sensory differences.
Top 3 reasons to listen to the entire episode:
- Unpack the different ways in which autistic individuals experience and navigate social connections, finding out why that can differ so greatly from neurotypical expectations.
- Explore the challenges and distinct profiles of autistic social interactions, diving into the importance of understanding the role of social motivation and casing light on the often invisible energy it requires to maintain connections.
- Gain insight into the world of special interests and repetitive behaviors, showcased through the personal experiences of Patrick and Dr. Neff.
As you journey through the intricacies of Autistic social interactions, take a moment to reflect on the unique ways in which people communicate and connect, perhaps finding a new understanding of your own social narrative.
Resources:
For this conversation, we are using Is This Autism By Donna Hendreson, Sarah Wayland, and Jamell White. You can find it here. But wait...
- The publisher is giving our listeners a special coupon during this series! Use Code: NDI24 to get 30% off and free shipping Valid through 6-Jul 2024 (must purchase using this link)
Also, we’ll be reading this book together for our book club in June in the Neurodivergent Learning Nook. You can learn more about our community here.
DISCLAIMER: We're using the DSM-5 criteria as a framework for this conversation, and this is not our endorsement of the DSM. There have been a lot of very thoughtful critiques of the DSM in the last several years, and more specifically, how autism is presented in the DSM is very deficit-based. So, we are not in alignment with that view, but we did use that as a framework to walk through our experience of autism and to unpack the many ways that those criteria could show up in a person. The reason we chose to do this is that we believe in the power of transparency and demystifying the process of diagnosis, which has historically been very obscure and hard to understand. And so this is our effort for those who perhaps are interested in pursuing a diagnosis or who have gone through the process and want to understand it better. This is our attempt to help demystify that experience. It is not our endorsement of the DSM. Thank you for understanding that.
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Transcript
PATRICK CASALE: Hey, everyone. You are listening to the Divergent Conversations podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale.
MEGAN NEFF: And I'm Dr. Neff.
PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening.
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MEGAN NEFF: Hey there. So, it is April which means it is Autism Awareness/Autism Acceptance Month. And we're going to be doing a series around here on unpacking what is autism.
We want to issue a pretty big disclaimer here. We're using the DSM-5 criteria as a framework for this conversation. And this is not our endorsement of the DSM. There have been a lot of very thoughtful critiques of the DSM in the last several years. And more, specifically, how autism is presented in the DSM is very deficit-based. So, we are not in alignment with that view. But we did use that as a framework to walk through our experience of autism and to unpack the many ways that those criteria could show up in a person.
The reason we chose to do this is that we do believe in the power of transparency and demystifying the process of diagnosis. The process of an autism diagnosis has historically been very obscure and hard to understand. And so this is our effort for those who perhaps are interested in pursuing a diagnosis or who have gone through the process and want to understand it better. This is our attempt to help demystify that experience. It is not our endorsement of the DSM. Thank you for understanding that.
PATRICK CASALE: All right, everyone. Thanks for coming back and listening to another episode of Divergent Conversations. Megan and I are going to continue our episode from last week which was Autism 101(part one). This will be part two.
So, we're going to dive right back into what we were doing last week. If you didn't listen to that episode, make sure to circle back and check it out. I think it was a really good one, where we're kind of going through the diagnostic criteria, but also kind of showcasing our own life experience and some of our own thoughts around a lot of this stuff.
So, Megan, take it away with wherever we left off.
MEGAN NEFF: Yeah, so we were talking about social pressure, communication. I don't know, whenever I say that I say it with like a smirk. I don't know what that means. I think that's so similar to how I feel about socializing and communicating. I don't know.
But yeah, we talked about reciprocity, and we talked about nonverbal communication and some of the differences there.
And then now we're at the last… So, as I mentioned, last week, there's kind of the classic, there's criteria A, which is the social communication, and then criteria B, is the repetitive stuff. And so this is the last of criteria A is like relationship maintenance, essentially, and friendship management.
And I think this is probably one of the more confusing ones. Well, actually, no, I think they're all confusing. Like, just, oh, this would have been a good thing to include, I guess we can talk about it now. But like, we ended up talking about eye contact last time.
I hear a ton of times from clinicians and then from autistic people who have been like, "Well, I was told I couldn't be autistic because I can make eye contact." Or I'll hear a clinician be like, "Well, I don't think they're autistic because they make good eye contact."
Like, I want to make some kind of meme of like, you know, autistic people won't, like, burn to the ground with eye contact. Like, people think it's like a physiological impossibility. Like, it's uncomfortable. We don't like it. Many of us don't do it. But we are physiologically capable of making eye contact.
PATRICK CASALE: Can I just jump in with that? Like-
MEGAN NEFF: Yeah.
PATRICK CASALE: That stuff drives me insane, because if you've learned to mask and adapt your entire life, you've learned to tolerate having to make eye contact. So, just when providers say stuff like that, it really, really frustrates me. I actually-
MEGAN NEFF: [CROSSTALK 00:05:32].
PATRICK CASALE: I'm not going to go down this rabbit hole, never mind. Let's get to it.
MEGAN NEFF: And that's why, you know, when I do training on this it's like, it's not a list of marks to check off. You've got to get at the internal experience. What is your experience of small talk? Is it something you scripted ahead of time? Like, what is your experience of eye contact?
Like, you know, I've worked with folks who use their CAT-Q and that's that autistic masking measure. Like, if they're in the 150s or 160s, I don't even know if it gets that high. I have seen 150. It's like these people are socially so smooth. Like, I want to say I'm a little bit jealous of them, I'm not. Because I know how taxing masking is. But so, so smooth socially that you have to get to the internal experience, especially, for criteria A to understand if a person is autistic.
PATRICK CASALE: Yeah, perfectly said. I think like my score was like 135 or 140, by the way.
MEGAN NEFF: Oh my gosh, wait. I think you might be higher… I think your Cat-Q is higher than mine. Actually, I feel okay, I'm going to say something. I'm curious if you agree. I think you have better social skills than I do. Or you're more socially smooth than I am. Would you agree?
PATRICK CASALE: Yeah, yeah, I think you would agree. I think that you got [CROSSTALK 00:07:05]-
MEGAN NEFF: I mean, I said it, I said it.
PATRICK CASALE: We're on the same page here, yeah, yeah.
MEGAN NEFF: Yeah.
PATRICK CASALE: I-
MEGAN NEFF: I asked my spouse about that once and he was like, "Yeah. You always like, in college, I remember there'd be things that would happen and I'd be like, 'That was weird.'"
PATRICK CASALE: This is why I want to have our partners on here so they can highlight these wonderful experiences that they had of interacting with us pre-diagnosis and post-diagnosis.
MEGAN NEFF: Yep.
PATRICK CASALE: No pressure on Luke or Arielle, just saying.
MEGAN NEFF: Yes, I think that would be very fun. Yeah, for me I've always been very academic. And so, my, like, quirks, and my social awkwardness, I do feel fine kind of awkwardness. I think it is awkward. Like, it was kind of like, "Oh, well, she's intellectual." And that was also my protective, like, story of like, "Oh, it's just me being academic."
PATRICK CASALE: Sure.
MEGAN NEFF: But yeah, I'm not surprised your CAT-Q is higher than mine.
PATRICK CASALE: I have had so many jobs too where, like, socializing was a part of the job. Like, I worked as a bartender for so long. And just having to be forced into, like, social interactions and things like that. And, yeah, anyway, I wouldn't want to do that right now. I can say that definitively.
MEGAN NEFF: Yeah, yeah, maybe when we get to the end of this we should, like, talk about masking a little bit more. I mean, we've done episodes on it, but just how that can look kind of diagnostically. Because yeah, all of these things will look different, because the person has learned and they're doing it through their prefrontal cortex. They're analytically like, "Okay, this is how I initiate, this is what I say. When someone asks me something I respond."
PATRICK CASALE: Yeah.
MEGAN NEFF: Yeah. So, the third one, relationship maintenance. The one thing I really like, and I'm loosely using the Is This Autism book, which is a fantastic… Like, if anyone's interested in this conversation, like, seriously, go buy this book, it's amazing.
One thing I love that they distinguish in this difference in social maintenance, is social motivation versus social energy. Like, a person might have high social motivation but really low social energy.
And I think I've low both. But I think if I had more social energy, I can actually fully tell I think I would have more social motivation if I wasn't so exhausted by socializing.
PATRICK CASALE: That's so interesting, because I think I have, like we just talked about in the last episode, high social motivation. But I actually think I have low social energy. So, I definitely want to socialize, I definitely want to do things, but I'm so exhausted by the whole process of it, and the bandwidth is just not there the way I would want it to be in a lot of scenarios.
MEGAN NEFF: And I think that's part of the grief experience for a lot of us is like, we want to socialize, we want to connect, and then our social battery it's just like, gone, done.
And when our battery dies, it goes back to similar talks about a lot on here. Like, it's like, we're just not present. We're not there.
PATRICK CASALE: For sure.
MEGAN NEFF: And so even if we're physically there, like we're not there.
PATRICK CASALE: Yeah, yeah, absolutely.
MEGAN NEFF: And that's, I think, part of what I like about autistic neurodivergent communication is my social battery just gets so much further.
PATRICK CASALE: Yeah, I think that's so true. And I think that's why so many autistic folks are friends with other autistic folks. And it just feels like you just fall into sync so much easier. And it doesn't take as much from you to communicate, or connect, or socialize, in general.
MEGAN NEFF: Yeah, yeah, absolutely, absolutely. And I came across an interesting idea recently. I think someone made a reel about this. They were kind of hypothesizing it'd be interesting to compare social motivation for socializing in allistic spaces versus autistic spaces. Because if we're talking about, like, how motivated are you go to a large event where there's going to be unstructured activities, and there's going to be small talk, I think most of us are going to have a really low social motivation.
But if it's like, do you want to go have a deep conversation with people who understand you around a shared interest? Like, that's going to obviously be more motivating for a lot of us? So, I think it's helpful to contextualize, like, what kind of social motivation as well.
PATRICK CASALE: Yeah, absolutely. That's a great point.
MEGAN NEFF: I think, also, even with that considered, I still feel like I've less social motivation. Like, I'm married to someone who's really introverted. We had an interesting conversation. Like, "Ideally, how many times would you leave the house?" For me, I think I said maybe once a month. And for him, it's like, twice a week. Wow, that's a lot.
PATRICK CASALE: That certainly puts things in perspective, right? Of, like, yeah, absolutely. I'm thinking about how often I leave the house, like, in between events that I'm doing. Like, I don't think I've left the house… what's today? Tuesday, since Friday. So, that's rare for me. But it was also really necessary.
MEGAN NEFF: Like, which way is it rare? Like, that's a long time for you.
PATRICK CASALE: It's a long time for me. Usually, I'll have, like, soccer to go to. I'll have other things to go to. Actually, I'm lying. I went to a leadership meeting for my group practice last night, but I was not looking forward to it.
MEGAN NEFF: That's so [CROSSTALK 00:10:29]-
PATRICK CASALE: …all sorts of people. But it was just like, I didn't leave my couch from Friday afternoon until last night at like 6:00 PM to go to that meeting. I just didn't have the energy or the desire. And it felt really good to not have to feel that way.
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: Which I guess if I put like a spin on it, you're like, that sounds like a dream. Like, that's every day for me a lot of the time.
MEGAN NEFF: Could not leave?
PATRICK CASALE: Yeah.
MEGAN NEFF: Yeah, yeah. And for me, I don't know, like, should I really think health… you know, I've talked about this health stuff has ramped up the last two years. And it's hard to tease out what's chronic fatigue, and long COVID, and what's autism. So, I definitely had more social motivation when my health was better. So, that's like a huge…
But even with that, like, I've always been someone who can get absorbed in my own world and be fine. I'm generally fine with less contact than most people in my life.
PATRICK CASALE: Right, yeah, that makes a lot of sense.
MEGAN NEFF: And actually, that's one of the questions that I'll sometimes ask. And assessment is, I can't remember exactly how it's framed, but like compared to other people in your life, do you tend to need more or less alone time?
And autistic people tend to want to need more alone time. And I think that's a complexity thing. And I think, in general, a lot of us need a lot of rest, a lot of downtime to kind of regroup for sensory detox. So, a lot of that's like just basic energy sensory preservation. But then some of that's also like, we can entertain ourselves pretty well, a lot of us, and find interesting things in books, or ideas or, yeah.
PATRICK CASALE: Yeah, absolutely.
MEGAN NEFF: Okay, so a lot of this stuff is also, I'm thinking more about like childhood. So, things like making friends, keeping friends. This is what can get tricky, especially, again, this will be like things we've learned from the girls, but like this can apply to all genders, is the trajectory for a lot of autistic girls is they do fine in elementary school.
And if you think about elementary school, it's a little bit more developmentally appropriate to do parallel play. And then when you get to middle school, in high school, socializing gets a lot more nuanced, there's a lot more subtlety, it's a lot more complexity. And that's when autistic girls start to struggle more. And again, this could be anyone. And where they start to notice kind of social, like, it's like socially…
And I felt that. Like, I felt like socially left behind, in a way, once I hit middle school. And I didn't understand why. But I could see other groups forming. And it was weird. Like, I would share identities with them, and maybe be on, you know, a basketball team with them. Or we have similar things. But I can never quite integrate into the group in the same way. And I definitely felt that shifts in middle school, in high school.
PATRICK CASALE: I actually feel the exact same way, where elementary school wasn't necessarily easy, because I didn't have a lot of friends. I probably had like one really good friend, but I spent, basically, every second with that person and not really anybody else.
Middle school, like everything felt like flipped on its head where I just really felt out of my element, and really uncomfortable, and really hyper-vigilant about how uncomfortable I was socially.
And I did play soccer in middle school and in high school, which certainly helped, but like, I never felt close or connected to my teammates in those ways, either. I always felt like kind of the outsider who if I saw someone in the hallway, I was like, "Oh, how do you do?" Like, you know, but otherwise, I really didn't have a lot of friendship in middle school, especially. And probably freshman and sophomore year of high school as well.
And then I got a car and I just never went to school. And then it was like, Oh, you don't really need friends if you don't ever go to school."
MEGAN NEFF: Oh my gosh. You have a weird story, Patrick.
PATRICK CASALE: One day it's going to all go into the book, for sure, yeah.
MEGAN NEFF: I love it. I'll read it. So, that's another classic experience that happens a lot of what you just described, like having one intense friend. Like, one tense friend that you kind of build a world with, and you kind of stick with them forever. That can be a really common experience as well.
And that can get missed in an assessment because it's like, "Oh, well, they have this one friend." But then it's like, "Well, but how do they do when you integrate another person? Or how do they do it, like initiating friendships or developing friendships outside of that?"
But yeah, definitely, that was kind of my friendship pattern, too. I'd have, like, one intense friend at a time. And whenever those friendships would develop into where there were then three of us, like, it would then devolve. Like, I couldn't do it.
PATRICK CASALE: I was going to say something that we would need to edit out. But, same, same, same, same. And also, I don't know if you felt this way. But like with that one, like, intense friend, I don't think I really met my, like, first actual friend until third grade. I remember that distinctly because of how close we became. But I also kind of felt like possessive in a way of like, or protective of the friendship, because I was like, "Wait, this is my person. Like, this is the one person who I can actually spend time around and like feel connected to."
MEGAN NEFF: Yeah, that's something else that's come up in the literature for sure. It's like, we can get possessive over one person, because they're one person. And we don't need people beyond them, right? So, it's like, wait, you want friends outside of me? Why?
PATRICK CASALE: Right, yeah.
MEGAN NEFF: And so we can become jealous, understandably. And that can lead to friendship conflict and conflict can be hard for us. So, that can be like one kind of common, like narrative of like, develop a friend, get possessive of that friend. And that kind of becomes the demise of that friendship over time.
PATRICK CASALE: Yeah, yeah, yeah, yeah. This particular friend had a twin brother, too. So, it was really complicated dynamic. So, really strange dynamics there in terms of like, possessiveness, jealousy, protective factors, et cetera. And I am now just thinking about how challenging it was to make additional friends outside of that, like, group.
MEGAN NEFF: Yeah, yeah. And like, when you're doing a social history, again, from an assessment perspective, that's kind of… you want to hear like, who are the friends? At what ages? How did those friends come to be? Because also a lot of the times when we look through our social history, like how we made friends, either we made them early, and then we like, built a world with them, and they stuck. Or it was, like, through an interest, like a very specific access point.
Yeah, it is interesting for me to think back. Most of the friends I've formed, like the deep friends, they've all pursued me, they've all been extroverted. And there's been some, like, passionate shared interests, yeah. How do you form a friend? I think that's part of it.
So, forming friends would be a part, maintaining friends, managing conflict, we kind of tapped on that already. But a lot of us can be pretty conflict-avoidant or just struggle to manage conflict. And so sometimes friendships can end.
Also, for a lot of autistic people, I think, friendships end, and we don't understand why. Because maybe the person, they just stopped being our friend, but they don't tell us, and that can be really confusing for a lot of people. And I think that can lead to some of that, like, social, like loss of trust of one's social self when it's like people just leave me and I don't understand why.
PATRICK CASALE: Yeah, yeah, for sure. That can feel really painful and really confusing. So, when it goes to just stops responding, just completely cuts you out of their lives without having any sort of conversation, yes, can be really painful.
MEGAN NEFF: What's ability in friendship? So, this was interesting. Okay, this kind of goes back into reciprocity. When I first was exploring autism I was like, "Well, no, I'm super reciprocal." And again, I had the stereotypical presentations, and flexible in conversation, but then what I realized I was like, "Oh, I'm not." Because I'm always developing mentorships not friendships, where like I'm there, the helper, listening. But it's not actually reciprocal.
And I think that's one of the ways this can be kind of subtle is when a person one way, one workaround with this friendship stuff is to become a helper. Like, I know in high school, it's so funny, it was actually in Donna's book. It's like, they might become friends with, like, other children with disabilities that are, like, more significant than theirs. That's exactly what I did at lunch. I started eating with the… it was called specialized back then, with like, the special, there's a hallway where they ate lunch.
And I would eat with them. But it was this like, I'm using air quotes, like this "humanitarian" thing. But it's because being in a position of a helper was so much more comfortable than being in a position of peer with friends.
PATRICK CASALE: Yeah, that makes a lot of sense. I've seen that develop throughout my life in lots of relationships. And I think it goes back to like, even we've talked about, like, struggling with sense of self a lot of the time, and how that can really play a role in formulating friendships, too. If you're kind of disconnected from your sense of self, you kind of opt into that helper, people-pleaser role a lot of the time, too.
MEGAN NEFF: Right. Like, how do we form authentic connections if we're not connected to ourself, yeah, yeah.
PATRICK CASALE: Yeah.
MEGAN NEFF: Which I feel like ties back into social motivation. Like, I don't think socializing would be very motivating if we're doing it from a diffuse place, because it's not going to feel very satisfying or connecting.
PATRICK CASALE: Totally.
MEGAN NEFF: So, okay, again, with the flexibility, because this one gets a lot of, like, it's part of the stereotype. Like, it can show up as, you know, we have to do it this way. And then people might not want to be our friends for very long if, you know, we stick with that. But it can also show up the opposite of like, will you tell me what to do? And we kind of what you were talking about being overly acquiescent.
PATRICK CASALE: Yeah, I think when you say, we're going to do it this way, most commonly thought about in a lot of terms that we would hear is rigidity, right? And struggling with new environments, or new places, or changes in routine, or scheduling, too.
And that can even look like, hey, let's try a new restaurant. You and I have talked about this where it's like, "Oh, but I know this one restaurant has this thing that I really like. And I go to it all the time. And I know how the seating is laid out and all that'll feel comfortable." Sometimes friends don't want to do the same thing over, and over, and over, again.
MEGAN NEFF: Yeah, it's hard to stick to what we know. And we're, like, adapting to multiple people's wants and desires.
PATRICK CASALE: Totally. I think about, like, the same four places that I often recommend if someone's like, "Where do you want to go?" And they're like, "Do you ever change it up? You're so picky." Like, I'm not picky. I like familiarity. And I like my consistency.
MEGAN NEFF: Yes. And finding consistent friends, that's the trick.
Okay, so compromising, conflict, making friends, keeping friends. These are some of the factors.
Oh, you know, okay, I found this framework helpful. So, Tony Atwood is a controversial figure because of things he has said, specifically, around trans people. So, whenever I'm referencing ideas of controversial people I like to disclaim.
But there is a concept I heard that I really liked. And I thought this was like, and it was, again, early in my autism discovery. And I was like, "This framework is helpful."
He talked about three different kind of social profiles that he sees in autistic people. And he talked about the kind of social avoider. So, this would be the person who responds, like the child who runs off and plays with Lego on their own, and is very happy in their own world, very low interest.
The second category is what he called Italian drivers. Apparently, Italians aren't great drivers, do you know this? So, they-
PATRICK CASALE: [CROSSTALK 00:28:51].
MEGAN NEFF: Okay. So, he's like, they are really motivated to socialize. But they roll through the stop signs. Like, they don't see the signs. And so, over time then they get negative feedback from people, because they're really motivated to socialize, but they're kind of clumsy with it.
And there's the third type, the social chameleons, who like first stay back, kind of are the social scientists, and are studying like, okay, who's popular? Who's desired? Why? And then I'm going to go do that. And they don't get detected, right? They look allistic, but it's at that cost of sense of self. They have a really diffuse sense of self.
I think I've aspects of all three in me. But I found that framework helpful for thinking through, like how this can look. Like, so many different directions.
PATRICK CASALE: Yeah, I think that's so important to notate. Like, that's why we can't just say there's one stereotypical presentation, right? Because there are just so many different ways that people can adapt and move through the world and get their needs met, too.
MEGAN NEFF: Is there anything you wish was different about how you navigate friendship?
PATRICK CASALE: It's a good question. I don't know if that feels as hard to answer, like in present-day form. I think I'm much more clear on what friendship means and doesn't mean to me. I guess there are times when I would like to participate more in people's, like, interests. We've kind of talked about this, but I have a good friend here in town who like loves going to concerts and loves going to do, like, lots of loud environments, and I just can't.
And there have definitely been times where I can tell he really wants someone to go with him to do something. And I just cannot bring myself to say yes to it. Like, and if I did say yes, I would find a way to cancel.
And I think I'd rather just say no than back out last minute, at least if I know I'm going to back out last minute. So, I don't know if that makes sense. But stuff like that.
Sometimes I definitely wish I could show up in different ways for certain people, but I just know I can't. Like, when we socialize, most of the time, if we're not going out to places that we like to go a lot of times, if our friends are going to come over, they're going to come here to my house. We're not going to go to their house. Or I'm just going to be like, "Yeah, I'm not doing that." So, things like that.
What about you?
PATRICK CASALE: Wish you had more flexibility. Like, I hate that, right? That's, inflexibility, like, no, like, you can come here.
PATRICK CASALE: Yeah, and I'm like, "Oh, you want to hang out? We can watch the hockey game here. Like, I'm not going anywhere else other than here." So, yeah.
MEGAN NEFF: It's interesting, because everything you just said, like this gets clumped in that social bucket. But a lot of these are sensory regulation management tools, right? Like, okay, yes, we can socialize. I know I'll be sensory-regulated if we do it in my home. I'll know what to expect, which means I'll actually be able to be more present. So, these things that are, like, so-called social communication differences really tie back into our sensory regulation strategies, a lot of them.
PATRICK CASALE: Totally. So, in my mind, I'm like setting up my friend group up for the best chance of success. And what I mean by that is like me being the most present, engaging, connected version of myself, because I fear that the alternative is, like we talked about where I'm just kind of sitting there like a shell of myself in a way, because I can't physically be there.
MEGAN NEFF: This reminds me of something Jen said on our episode with her, our interview in neurotypical of like that she moves through the world flexibly. And so, of course, you can be socially flexible when that's your experience. But when it's not, it's like you have to create the structure for you to be able to be present. So, it's like, "Okay, I'm going to create a structure where I can actually meaningfully engage with you."
And yes, that's going to then look very rigid or even, like, be rigid and inflexible, and setting up the framework to be able to socialize.
PATRICK CASALE: Totally.
MEGAN NEFF: It really gets back to, oh, yeah, we've been talking about like, what is autism? And it's in the blue book that Donna Henderson wrote, where I think she defines it as like, it's a distinct nervous system. And I'm actually really drawn to that as a definition, because even the social stuff we're talking about, a lot of it taps back into this distinctiveness of our nervous system. And if we want to socialize with people in a way where we actually can connect, we've got to accommodate for our nervous system.
PATRICK CASALE: Absolutely. I actually really love that.
MEGAN NEFF: I'm exhausted from all this social talk.
PATRICK CASALE: Okay. I can tell.
MEGAN NEFF: Yeah. All my social battery, I mean my social battery is waning.
PATRICK CASALE: Do we want to transition or do we want to stop?
MEGAN NEFF: Should we start talking about criteria B or [CROSSTALK 00:34:28]-
PATRICK CASALE: That's up to you.
MEGAN NEFF: Yeah, I think I just want to be done talking about socializing?
PATRICK CASALE: Sure, yeah.
MEGAN NEFF: Or do you want to be done?
PATRICK CASALE: I am totally okay to keep going a little bit. But if we want to dip our toes into criteria B, great. We can also put a pin in that for the next time we record this ongoing series.
MEGAN NEFF: So, criteria B, there's four. And this is different than criteria A, and at least in the DSM. You only have to meet two of the four to meet so-called magical criteria for autism.
So, the four repetitive idiosyncratic behavior, difficulty with flexibility. Gosh, that's the same. Restricted interests that are intense or atypical, and then sensory differences. And they added sensory differences. I think [INDISCERNIBLE 00:35:29] in the DSM-5 when they added that which I'm really glad they did.
The two of the four, the first one is probably the one that's most widely known, which is repetition. And again, you know, the stereotype, right? Is that it's bizarre repetition or a lot of the stereotypes are very masculine, like lining up trains or cars. But it can be a lot more subtle than this, you know? It can be echolalia, it can be internal repetition.
I know, for me, like one of my favorite stims is to listen to a song and repeat. Most of the podcasts we've recorded, I've had one AirPod in that has a song on in repeat, so it can be more subtle, it can be rereading a favorite book over and over.
And again, going back to like assessment. It's not like, "Oh, what do you like to do for fun?" "Oh, I like to read. I like to craft." You've got to go to the next level of like, "What's your favorite book? How many times have you read it? What's your favorite show? How many times have you watched it?"
Because you're not going to get that… like that people aren't necessarily going to lead with, "My favorite book is this and I've read it 20 times."
PATRICK CASALE: Exactly right. And that's such an important piece to like, highlight here. So, if you were to ask me, "What's your favorite book?" I'd probably say, "Oh, Lord of the Rings series." Great. But I would leave it at that, right?
But if you ask me, "How many times have you read the Lord of the Rings or watched the Lord of the Rings." I mean, we're talking, reading it 50 times, watching it 100. So, there is a very distinct difference, right? In terms of how we're responding to some of these questions that are being asked, too.
So, if you don't know to go deeper, or to ask the right questions, then you're just going to be like, "Oh, yeah, you don't like to read. Great, it's a healthy hobby."
MEGAN NEFF: Exactly. It's going to be like, "Oh, Lord of the Rings, that's culturally relevant." Yeah, exactly.
PATRICK CASALE: Yeah, cultural… Yeah.
MEGAN NEFF: And that's part of that stereotype is, I think, this idea that, like, a bizarre interest, or bizarre repetitions, or stimming that's going to be really obvious. Whereas if the repetitions are, especially, things that like society deems as good like reading, like that's more likely going to be missed.
PATRICK CASALE: Yeah.
MEGAN NEFF: Okay, so repetitions also include, so like, it can be objects, or it can be like our body. So, it could be stimming, movement, rocking, but it can also be, like, lining up objects in categories.
I think we had an episode on special interest. I know for me like it was basketball cards as a kid and Barbie's-
PATRICK CASALE: Yeah, [INDISCERNIBLE 00:38:14] basketball cards.
MEGAN NEFF: And I loved to organize them. But I was always so frustrated, because I couldn't get it perfectly. Like, I could organize them by rookies or by teams, but I couldn't do like, both. Like, I could never figure out the exact precise [INDISCERNIBLE 00:38:30] stuff.
PATRICK CASALE: Yeah, Megan Anna just pissed off at this Clyde Drexler cards and like, upset they're not lining up correctly.
MEGAN NEFF: It's like, yes, because they would work in one categorization without the other. Yeah, did you have objects that you liked to, like, order? Organize?
PATRICK CASALE: Yeah, like, I had like, do you remember, like, what Pogs were? Those like circular things that you could, like, collect, and slam with metal objects, and flip them over? Was that ever a trend in the Pacific Northwest back in the day?
MEGAN NEFF: I actually grew up in the Midwest. That sounds vaguely familiar, vaguely.
PATRICK CASALE: Okay, well I had a lot of those, which were definitely organized and like by color schemes, and things that felt more aesthetically pleasing to me. Definitely had all the Beanie Babies. Also thought I was going to get rich from those Beanie Babies, that did not happen. Baseball cards, hockey cards, things that I had to keep in, like, sleeves. And I had to organize them by teams, and positions, and like, the years that they joined the NHL, things like that.
So, yeah, I had a lot of that stuff. I had, like, we've talked about this a lot, but I had tons of Garfield stuff, like so much of it, like everywhere. And it was just like all neatly organized on these shelves in my bedroom as a child. And there was just, I mean, I must have had hundreds of things. And I don't know whatever happened to any of that stuff, but, yeah.
MEGAN NEFF: And this is another great example of like, a lot of the kids sort of had that stuff, right? So, like, what makes it different? Like, what makes an autistic way of interacting with these things different?
And so, like, you know, I had dolls, I had Barbie's. I think the difference would be… and I'm going to ask you in a second, like I didn't play with them. I didn't have, like, the dolls talk to each other. And even playing as a mother, like playing with my kids, that sort of role play. Like, I can't do it.
So, it would be about collecting them. And it would be about organizing them. And that was how I played. So, the materials, right? Garfield, Barbie's, like Pokémon cards, the material, the mediums are going to be the same. But how to play, that's what gets out this repetitive piece.
So, yeah, for Garfield, for these things, how did you play with them?
PATRICK CASALE: I didn't. I mean, like, some of the collection was like ceramic mugs, and, like paper mache banks that I was so fascinated to go to yard sales and find Garfield stuff, but then it just went on the shelf and like got organized in size and category. But I didn't play with them. There was no, like, interacting, there was no inner world for those toys to interact or engage with. So, it was really about the collection.
I also had, like, different currency coin collection, different rocks and minerals collections. But again, what was I doing with these things? They were just being, like, strategically placed where they needed to be. And there wasn't a lot of going back to like, "Let me go through these coins and see where they're from and how much they're worth. And how do I like…" So, yeah, that was kind of my process.
MEGAN NEFF: Like, I know for me, [INDISCERNIBLE 00:42:09] but I like, the satisfaction of completing a collection, that was a big piece of it. For you, was it also about like, okay, did you just have a sense of like, what would make the collection complete? And then an urge to complete it?
PATRICK CASALE: Yeah, absolutely. It was like this unrelenting urge to complete that collection, too. Like, I would really actively think about that.
MEGAN NEFF: And it can look really materialistic. Like, I remember being like, "Why am I always fantasizing about like…" Like, I would get the Barbie and I'd pull out the pamphlet in the Barbie box that shows you all the other dolls that you can buy. And like I'd just spend my time looking at that, fantasizing about, like, the next thing as like, because, like, okay, when will this collection be complete? And fantasizing about completing it? Yeah, yeah, yeah.
And you know, I made our podcast into a collection, because I was like we have to have mini-series, and autism 101 is going to be a collection. And I will. I will get so much satisfaction from us being, like, we now have a collection of autism episodes.
PATRICK CASALE: I like being able to do that though, because it just feels smoother in my brain, it makes more sense. It just feels like less mess, less clutter, less distraction, and also feels like it just makes sense.
MEGAN NEFF: Well, that's interesting. That's where in distinguishing autism and ADHD if you're not sure both are there, like an ADHDer might also like order, because it helps their world makes sense.
But I think one of those differences would be like, the pure delight and satisfaction. Like, when I'm organizing, not organizing. I don't like organizing my stuff. I'm terrible at it, actually. But when I'm like creating collections, like that's pure joy, and dopamine, and interest for me. There's something just so satisfying about it in and of itself, not because of what it does for my… not because it helps my executive functioning but in and of itself.
PATRICK CASALE: Yeah.
MEGAN NEFF: Yeah, so other things that fall in this category are things like there can be vocal repetition, so like humming, singing, like repeating songs or words. Yeah, echolalia, but also just repeating things, chanting particular words.
I've had a few words that I've said since I was like three or four and whenever I'm stressed, those are the words that still come out. Yeah, but I feel like we've covered repetition pretty well. Okay, I'm reading your body language. I think we're done.
PATRICK CASALE: I'm good. I couldn't remember what time you said you had to stop. So, I was just looking at the time.
MEGAN NEFF: 1:30, so nine minutes.
PATRICK CASALE: Okay. All right. I want to give you time to prep, so I think this is a good stopping point. So, the next time we meet we can pick up after repetition and just keep this going.
MEGAN NEFF: That sounds good. We'll finish off criteria B next episode. Cool.
PATRICK CASALE: This time I'm going to get it right unlike last episode, which is to everyone listening to the Divergent Conversations podcast, new episodes are out on Fridays on all major platforms and YouTube. Like, download, subscribe, and share. And goodbye.
