Episode 48: “What is Autism?” (Part 1): Understanding Autistic Communication
Apr 04, 2024
Show Notes
“What is autism?” This is a question that comes up a lot in more recent times, and the conversations around autism are extremely nuanced, making it hard to pinpoint one right way of looking at it, so let’s explore autism from what it means historically and clinically to how it represents an identity, and all the things in between.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, start the conversation around autism with an honest and insightful discussion about “what is autism” and the intricacies of social interactions as experienced by those on the spectrum.
Top 3 reasons to listen to the entire episode:
- Gain insights into the realities of social motivation and its challenges as our hosts reveal their personal struggles with engaging in conversations, especially when they're not “interesting” enough to fuel the interaction.
- Understand the profound impact of autistic culture on communication forms, with Dr. Neff and Patrick Casale breaking down the DSM-5 criteria of reciprocity, and offering their own thoughts on the criteria including a counterview of how care can be expressed in unique, meaningful ways for Autistic people.
- Delve into the transforming neurodiversity landscape and consider how our language choices and the metaphors we use to understand autism can influence identity and self-perception, potentially shifting away from deficit-focused narratives.
To start to answer a part of the question of “what is autism,” it’s important to consider the layers of effort and adaptation that accompany social encounters and reflect on your own communication style.
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. We chose to do this because 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: Okay. Well, welcome back.
MEGAN NEFF: Yes. Good to see you. We haven't recorded in a while.
PATRICK CASALE: I know, [INDISCERNIBLE 00:03:01].
MEGAN NEFF: Yeah, yeah. So, I love this idea. You texted me about, like, let's do an episode on what is autism and what is ADHD? And my brain started getting excited thinking about this episode, and did what my brain does, which is like, turn everything hell of complicated. And make everything a collection.
I had this thought, Patrick, I'm curious what you think. I know we're on a series, which, you know, wink, I'm open to. But I think we shouldn't have, like, many collections.
So, like, I honestly think we could do 10 or more episodes on what is autism? Because it's a philosophical question, it's a scientific question. We can get into the diagnostic criteria. We could bring in people and ask what autism is to them. But I think we should make, like, you know how on YouTube there's like video collections? I think we should start making collections for our podcast.
PATRICK CASALE: I think it's a great idea. I'm not against it at all. Actually, I think it's fantastic.
You know what's funny is like, when I text you, "Oh, we should do autism 101, we should do ADHD 101." It feels very much like us to do this, like, episode 45, 46, whatever this is going to be, and not episode one and two.
MEGAN NEFF: I know. I happen to…With my website, people will often be like, "There's so much great resource here, but I'm like, just like at the very basic. Like, what is autism?"
And I'm like, "Oh my gosh, I like don't have an article." I'm like, "This is what autism is." I'm like, "This is what interoception is. This is what alexithymia is, but like what is autism?" Yeah, so that is very appropriate.
I think it'll help organize the chaos if we have a little mini-series. And like I know your inbox is full, my inbox is full of like people asking to come on at this point. And like, we can organize who comes on, also, through our little mini-series. Definitely more Ask a Neurotype. Plus, I love building collections. I don't know if you know this about me?
PATRICK CASALE: I do, I do. I actually agree with, like, the subset/like mini-series collection, whatever we want to call it. I would love to expand on the neurotype series too just to get so many different perspectives on there, because those are really popular ones.
MEGAN NEFF: Yeah.
PATRICK CASALE: But yeah. So, if we are starting like foundationally, and someone just finds this podcast or wants to send it out as a resource, what is autism is probably a good starting point, not just for the listeners, but for people's loved ones, for therapy clients, for therapists. Like, yeah.
MEGAN NEFF: Well, okay, I have so many thoughts. But first, I just want to ask you like, how would you answer that if someone came up to you and like, "Patrick, what is autism?" What would you say?
PATRICK CASALE: I'm looking at [CROSSTALK 00:06:16]-
MEGAN NEFF: It's a hard question, right?
PATRICK CASALE: Right, [INDISCERNIBLE 00:06:18] poster I have on my wall that just says like, "Fuuuuuuck."
But yes, it's a hard question. And I don't know where I would start, because my brain would say, "Do I start with a definition of like neurodivergence versus neurotypical? Do I start with like, the clinical foundation for autism? The misconceptions? The misdiagnoses? The presentations that go missed so often? Do I talk about adult autism? Like, do I share my-"
MEGAN NEFF: Talk about your experience of like, what does it mean to you to be an autistic adult?
PATRICK CASALE: Right.
MEGAN NEFF: Yeah, like, maybe that's why we haven't done an episode. Maybe it's why I haven't written a blog post on it. It's huge. It's a multi-faceted question. Like, what angle are we asking this? Are you asking, yeah, what's the criteria?
PATRICK CASALE: Right.
MEGAN NEFF: What's the identity? What's the experience? What's the social construct? Yeah, we can't do this in one episode.
PATRICK CASALE: So, this is just going to be dipping our toe into this conversation, and we're probably, obviously, going to expand upon it.
I also find it fascinating. And I text you this, that I was like, "We should do ADHD 101, we should do autism 101." And we both were like, "Yeah, we're going to start with autism 101."
And I think that feels like this podcast in a nutshell, like, both of us are autistic ADHDers, but I think so much of our worldview, and just the things we talk about are typically framed from that autistic perspective, a lot of the time.
MEGAN NEFF: Yeah, for me it forms more of my identity. And I find that to be somewhat common among autistic ADHDers that the autism ends up forming a little bit more of the core identity, I think, unless you're ADHD dominant.
But I do want to do an ADHD series. I honestly don't feel like I understand ADHD as well. So, part of it is my own like, I'm like, "Give me time I go do some research, Patrick." But [INDISCERNIBLE 00:08:27].
PATRICK CASALE: We'll see [INDISCERNIBLE 00:08:28] with ADHD [INDISCERNIBLE 00:08:30].
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: Okay, so…
MEGAN NEFF: Okay, so what is autism? Oh, I just cut you off, go ahead.
PATRICK CASALE: I think I was going to say the exact same thing. So, yeah, I think we start there, what is autism? And we can go through like, you know, very broadly, like, diagnostic criteria, and then set the stage, and then expand upon like, experiences, philosophies, all the things. Hell, we need to do an episode on neurodiversion affirmative language too, just popped into my head, but we haven't done that yet.
MEGAN NEFF: Yeah, yeah. We don't do a lot of like how-to's I think because we are so conversational. But that would be a good resource.
PATRICK CASALE: Yeah.
MEGAN NEFF: So, okay, to situate, like the what is autism? This is, like, very current fresh debate. You know, historically, it's, right, been a neurodevelopmental disorder. That's how it's been categorized, very much characterized by the behavioral markers. But we're seeing its huge shift as we're shifting for the medical model, toward the neurodiversity paradigm, a shift from this being a medical diagnosis to this being an identity, right? This being a neurotype.
PATRICK CASALE: Yeah.
MEGAN NEFF: But even with that, it is wrecked with ambivalence in the sense that, like, we cannot locate. We can't be like this is the autism gene. There's hundreds and hundreds of genes involved. And there's so much diversity, that it's like, yeah, there's so much debate around this. Is it captured by behavioral traits? Is it captured by, like, distinct brain patterns? Especially, as we move more toward identity-based, this idea of how do we define what this thing is?
PATRICK CASALE: Which really makes it a challenging conversation to have in like a short period of time. So, I think that's a good starting point with that disclaimer, right? If we're shifting into that neurodiversity paradigm perspective, identity-first perspective, especially, as we start to see, you know, more and more autistic advocacy trying to shift into different types of affirmative language to kind of shift away from the usage of ASD and certainly the usage of the label Asperger's. Like, all the things that still get thrown around a lot of the time.
So, I think, also trying to figure out how to speak about that, how to educate, how to teach, because we've talked about, like, how do we do that without becoming angry or without becoming like, really defensive?
MEGAN NEFF: Well, this also brings it back to our conversation [INDISCERNIBLE 00:11:25] about like, for some people, their experience of autism will be, I have ASD, it will be with autism, it will be… And so that is part of the identity for some people is to keep it medical.
PATRICK CASALE: Yeah.
MEGAN NEFF: Yeah. I-
PATRICK CASALE: And if-
MEGAN NEFF: Okay, so… Oh, go ahead.
PATRICK CASALE: Also, how do we honor, like, the social disability model? How do we not get to trophy in terms of language? Like, superpowers versus kryptonites?
MEGAN NEFF: Oh, my God. Yeah. Sondra did a great job with the superpowers aspect of like, in our episode with them around, if you have to have a superpower to justify being different and acceptable, like there's a problem with that. Yeah, I really don't care for this superpower rhetoric.
PATRICK CASALE: And also, I'll just own this, that was language that I used initially when I first discovered my own autistic journey. And just had not done enough education around some of the language, in general. And I apologize for that in the past. But…
MEGAN NEFF: Well, I think it's great that you, like… I think developmentally a lot of us as we're coming to understand what this means, and to integrate it, we go through a lot of different language use.
And even, like, our energy toward, like, I remember, I feel like I was way more defensive about identity-first language early on. And now I'm like, I have a more nuanced perspective, because I'm more settled in the identity. So, I think even the language we use will have a developmental arc to it in the sense that it'll shift as we get more comfortable and settle into these identities. So, I love that that's part of your story.
PATRICK CASALE: Yeah, I think we have to unpack our own internalized ableism a lot of the times when we live in an ableist society. And also, I think that when we first come into an understanding about our own diagnoses, our own diagnoses journeys, our own stories about anything that, you know, feels very personal to us, we are oftentimes more defensive when it comes to protecting our newfound identity or however we want to look at that.
And then over time, we're like, I'd rather help people shift their language more gently, and with more education, and more support, because so often people, you know, they don't know. And the DSM says, "Hey, this is what we have to do for insurance billing purposes." It makes sense why we're still kind of stuck in this medical model where it's like, well, we default to saying this is a spectrum disorder.
MEGAN NEFF: Right, right. Yeah, exactly. Like, we have to use certain language to get certain accommodations in the world that currently exists. Yeah, yeah.
There's a few metaphors that I really like that I found in the literature, neurotype, I feel like that's widely used and I really like that. I feel like it captures it as a brain style, as our neurology, as a way of processing the world.
Robert Chapman talks about it as a different form of life. I really like the image of form of life. And that is a little bit more embodied than neurotype. Neurotype is very brain. And we know the autistic nervous system is different. So, I like that it brings in a little bit more embodiment.
And then Leon Brenner is another thinker I like, who talks about autism as a mode of being. And again, it feels a little bit more embodied than neurotype.
Those are the three metaphors I'm drawn to when I think about what is autism: mode of being, form of life, neurotype.
PATRICK CASALE: Yeah, I think if we use those three metaphors to anchor into this, that will be useful. Because I agree, I think that those all feels really useful for me. And I think that has really reframed my perspective, and lens that I kind of view a lot of this from now too.
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: You're a clinical psychologist. You, obviously, like, you're testing, you live this stuff all day, every day. So, we can get as granular as we want to. But I don't think it's useful for us to go down, like, each of the big six markers and milestones that we're looking for in testing capacities a lot of the time, unless you do think that it's useful to pick it apart.
MEGAN NEFF: I actually thought it would be a really fun structure for the episode. I have Dan Henderson's book here. I was like, "Oh, we could go through criteria A." But then like, talk about it. And I'll just be like… But like, actually talk about our experience. And then have another episode of criteria B. So, I think that was the opposite. I was [CROSSTALK 00:16:47]-
PATRICK CASALE: No, let's do that. Sometimes I'm like, I say something, but that's not necessarily my entire meaning. So, more so, yes, let's not just list criteria. How about that?
MEGAN NEFF: No. That sounds so boring. Talk of [CROSSTALK 00:17:04]-
PATRICK CASALE: …expand upon it with our own thoughts.
MEGAN NEFF: Yes and our own experience. I think that would be really fun. And I'd love to get, like, listener's feedback then, too.
PATRICK CASALE: Yeah.
MEGAN NEFF: So, yeah. And I will make another plug for this book, because I think it's such a great book, Is This Autism by Donna Henderson, Sarah Wayland, and Jamelle White.
And they have two books out in the screenbook. They walk through the diagnostic criteria but with a non-stereotypical presentation in mind. And they have a section where they talk about what we've learned from the girls, knowing that it is, of course, more than just females that present that way, but like, what we've learned about autism from the girls.
And so I think that could actually be a really helpful frame, to walk through some of the criteria. And I'd love to ask you about your experiences, Patrick.
PATRICK CASALE: Let's do it. I actually think this will help us not diverge as much as we probably would.
MEGAN NEFF: Yeah, I think for talking about diagnostic stuff it's helpful to, yeah, have some anchor points.
Okay, so bird's eye view, and we're talking DSM-5, well, DSM-5-TR. In other countries, most widely used is probably ICD-11. It's similar. It's not exactly the same, but it's pretty similar.
So, there's essentially two big… I put everything in buckets, two big buckets of criteria to be aware of, A and B. A is social communication stuff. B is repetitive restrictive behavior, RRBs. So, I think today, let's just talk about criteria, the social stuff.
PATRICK CASALE: Sure.
MEGAN NEFF: Okay, and there's three pieces of it. And to meet criteria, a person has to have all three or like be experiencing all three.
So, the first one is social-emotional reciprocity. I used to think I was good at reciprocity. But I'm realizing I'm not as good as I thought I was. What comes to your mind when you hear the word reciprocity?
PATRICK CASALE: Reciprocity, okay. So, what comes to my mind is I think that, when I'm masking more, I probably exude more reciprocity in social relationships in situations. I think that when I'm feeling unmasked, I don't feel that way.
What I mean by that concrete example, someone reached out to me today and said, "I'm so grateful for you to be in my life." And I just liked the thing. Like, I didn't respond back with, "I'm so grateful that you're in my life too." Or like, "I feel the exact same way." Because I just didn't feel like that was necessary. But I do think if I was masking more, I would have created some expected response of like this is what I'm supposed to say back.
MEGAN NEFF: I think that… So, compliments. Like, that is part of reciprocity. I remember, yeah, back when I was out in the world actively, like, I would be scanning what the person, especially, among females, we like, like to compliment what other people are wearing. It's this weird cultural thing.
So, I'd be scanning, like, the other person so that if they complimented me, I could quickly come back with a compliment, because I learned at some point, if someone compliments your outfit, you're supposed to compliment theirs. But there'd be like this awkward stall. So, like, coming up with compliments proactively. So, compliments, that's absolutely a reciprocity thing.
For me, I get annoyed by compliments. Okay, now, I like compliments, especially, when they're received, I think, in certain digital formats, and there's no expectation for response. Like, part of me likes it, of course. Like, I do have an ego, it exists. I like compliments. But part of me just gets irritated because it's like a demand I now have to respond to.
PATRICK CASALE: You talked about this in our Ask a Neurotype series with Jennifer. She was talking about compliments. And you were like, "It feels like a demand. Like, I have to respond to it."
MEGAN NEFF: So, when you got that text, was it… did it-
PATRICK CASALE: Which was from [CROSSTALK 00:21:42]-
MEGAN NEFF: …feel like… Oh, that's so funny. Did you feel positive toward it? Did you feel neutral?
PATRICK CASALE: I think I felt neutral. I know she's going to listen to this, but it's nothing personal. I just want to say that I want to use that disclaimer. It's someone I care about very much, but I think you know, oh, my God. So, I think that for me, when I get a lot of that it almost feels like… I don't think it feels inauthentic. Inauthentic, disingenuous, whatever the word is. I just feel like it's being said just to say it and maybe that person doesn't need to express it. But do I need to receive it? That's the dynamic, that's the dynamic. That's the fucked up thing.
MEGAN NEFF: Like, you're allowed to think nice things about me just don't share it with me. I'm laughing because I totally get that.
PATRICK CASALE: Right, because like, I appreciate it, and like I can rationally say that, I appreciate it. I genuinely appreciate it… But, like, it does feel like I just see so many messages throughout the day where I just look at it I'm like, "Okay." Like, I don't know how am I supposed to respond. Like, I already know you care about me is kind of my thought process. So, I don't need to hear it, like over and over and over again.
So, like, let's talk about another form of reciprocity, which was used in my testing that I've talked about on here before. I went in for testing. The person who did my testing told me that one of the indications for him was that he had a guitar on his wall in the office. But I did not ask him about his interests after he asked me about mine.
And he said that it would have made sense for me to have responded with like, "I see you have a guitar on the wall. Do you play music?"
So, that feels like reciprocity in a way. But like, contextually, in that environment I'm like, "I'm not here to know about you or ask about you." Which that can be a whole nother conversation, but similar things.
So, like, in conversation in social scenarios, like, are we reciprocating? If someone asks us about our interests, do we then turn it around and ask them about theirs?
MEGAN NEFF: Yeah, absolutely. So, that, like, showing interest in someone else. That's part of reciprocity, especially, if they've first shown interest in you.
I had this aha moment, maybe six months ago. I was talking with someone and I think they had some kind of shame around the fact that they weren't better at this. And I was like, "Well, what would you want? Like, would you want someone to, like, initiate, like, 'Hi, how are you.' In small talk? Or would you want someone to be asking you these questions?"
And they were like, "No." And I was like, "Well, so you're caring for that person in the way you want to be cared for?"
Like, I think a lot of us don't necessarily want… I mean, I think if it's genuine interest, I think I know I like when people are genuinely interested in me. But if it's just kind of that small talk like, "What did you do this weekend? Oh, you've got a guitar in the wall, tell me about that."
Like, I don't like when people talk to me like that, because it's just, again, you're now forcing me to come up with something to say, put a demand. So, I don't do that to other people. So, it's interesting.
I think from autistic culture, I don't think it's a lack of caring about the other person. I think it's a, I'm caring for you the way that I feel cared for, which is I'm giving you space.
PATRICK CASALE: Absolutely. Yep. And that's why I think those neurotype series we did were so important to kind of highlight like, the different needs, and different neurotypes, and the different ways of moving through life, because some people really do need that. Like, that constant check-in, validation/affirmation. And for me, that couldn't be further from what I want.
So, you know, that was a part of even dating my now wife, who we've been together for 10 years, like at first, like receiving gifts can be quite challenging, receiving compliments can be quite challenging. So, knowing what to do with that information, knowing what to do in those contexts is sometimes a indication of like that reciprocal, like, this is what I'm supposed to reciprocate or how I'm supposed to reciprocate. So complicated.
MEGAN NEFF: Yeah, that's it. Yeah, I mean, that's what really struck me and re-reading through some of the examples in diagnostic stuff is it really is allistic reciprocity. Like, I think we do have ways of showing reciprocity in autistic culture. I think story swapping, I think, be like, "Oh, that happened to me once." Right? Which in allistic culture that's seen as the opposite of reciprocity, because it's like, oh, you're making the conversation about you again.
But I feel like I experience a lot of reciprocity in autistic communication, but it definitely looks different.
PATRICK CASALE: Absolutely. So, I'll circle back to this example of this DM today. I may not reciprocate in the same way. I'm saying, I feel the same way about you. Like, heart emoji. But what I might do is like, send some gifts, or some screenshots of things that make me think of that person.
Or I may, like, think, specifically, of their interests the same way I would think about my own special interest. And then I love gift-giving in that way. Like, when I see something where I'm like, "Oh, my friend would really like that thing, because they really like this thing." I love that. That's kind of my way of reciprocating like the,
"Hey, I care about you. Hey, here's the statement of that action.
MEGAN NEFF: What that reminds me of, so there's this thing Marilyn Montero talks about this, who's the creator of the MIGDAS. And I love this conceptualization. I think it comes from her, that social-based conversation versus object-based conversation, that autistic people tend to feel much more comfortable with object-based conversation.
So, talking about, right? Like, maybe you're sharing a gift, you're talking about that, talking about a book, talking about an idea, talking about a special interest, versus the social-based, like, tell me about yourself? What did you do this weekend?
See, when you talk about what reciprocity looks like for you, there's a lot of objects involved as medium. I'm going to share this article that's interesting, or I'm going to share this meme, or I'm going to share this thing that made me think of you, which is that more indirect object-based way of saying, I'm thinking about you, and I care about you, and I'm curious about you.
PATRICK CASALE: Yep. Spot on. It also is one of those things where it's like, "Oh, you said you were really into this hobby six months ago, when we talked. I just came across it while I was out in my travels. And I took a picture of it for you."
And they're like, "The hell are you talking about? Like, that was not something I even remember talking about." So, that's another thing that…
MEGAN NEFF: That's interesting memory. Like, the ability to hold people in mind. I also have pretty fantastic memory and especially, for like what people are interested in. And I think that's a way of showing cares, is the ability to hold someone in mind. Like, hold conversations you've had with them in the past in mind, hold their interests in mind.
PATRICK CASALE: Yeah.
MEGAN NEFF: Okay, I'm going to go through some other things here. So, one of reciprocity which we talked about is show curiosity about the other person. I think it's probably, I would guess, is on the spectrum. I definitely don't think we show curiosity in the allistic way, unless we're masking, of like picking up, I know Donna talks about these as social breadcrumbs, kind of like the guitar of like, "Oh, something interesting happened to me this weekend.
PATRICK CASALE: Right.
MEGAN NEFF: [CROSSTALK 00:30:55] was like, "Oh, tell me what happened." Like, we don't necessarily, I think, we don't intuitively do that. I feel like I have a on or off switch. I'm either like, if someone's not very interesting, this hurts so bad. If someone is not very interesting to me I'm not necessarily that curious about them. The people that I find intriguing, I'm like, unquenchably curious about them. I want to know all the context, I want to, like, understand why they are the way they are. What are you? Are you curious about people?
PATRICK CASALE: It's exactly what you just said. First of all, unquenchably. Wow, what a word today. Yes, it's exactly like that. And I think this also plays a role in informing connections and relationships.
And I think… this also sounds bad. I have a rule out, like, immediately, because, you know, I'm sure we're going to talk about, like, energy absorption and picking up energy. But I have a rule out pretty quickly. And if I meet you, and you're interesting, like you said, I'll use your word, I can be unquenchably interested, very fascinated, very engaged.
If I don't feel that way, whether it be boredom, or I just don't pick up on good energy, I am probably going to respond with like, very short, one to two-word answers and responses, and almost force myself to visibly look uncomfortable in the situation as if I'm not interested in continuing the conversation.
MEGAN NEFF: Your, like, social brakes go on.
PATRICK CASALE: Yeah. Big time.
MEGAN NEFF: Yeah, yeah, yeah. When I was masking more, I remember that feeling like the hardest, like, resistance would be when I'd be forcing myself to show interest. And to, like, be reciprocal, and be social when I wasn't interested.
And I think that was probably a combination of ADHD and autism of like, I'm really bored. And I'm having to do a lot of hard things, and like, coaching my body what to do like telling myself what to say. Yes, yes.
So, autism, like the word, right? Means, like, in your own world. So, I think there's definitely some people, again, this is on a spectrum, social motivation is on a spectrum, I think, curiosity towards others, when autistic people [INDISCERNIBLE 00:33:32] in our lives, they might be on that part of the spectrum where it's like, I really am not that curious about other people's inner worlds.
And I think we've gotten a lot of requests from partnerships where like, I think that's where partnerships can struggle, when it's one person in the partnership lacks curiosity about the other person's inner world. And we do see that.
PATRICK CASALE: Absolutely.
MEGAN NEFF: Also, like there's non-autistic people who are curious about other people. But okay, difficulty in greeting or responding to greetings. I laughed out loud when I saw that one. I mean, I think this podcast is a testament to that for me. I don't need to say more.
PATRICK CASALE: Yeah, I don't think we have to expand on that. But, you know, if you're sitting here listening, and you're like, "Oh, yeah, that is something that feels complicated." Or, "I feel awkward." Or, "You know, I struggle in these situations." It's probably something to pay attention to.
MEGAN NEFF: It's so, like, knowing what to say, like, do you shake… Well, now with COVID, you just don't shake hands. But like, the mechanics of a greeting, and then like, does it segue into a real conversation or does it not? And like, how do you know what's expected? And then goodbyes? Like, yeah, I've talked about that probably on here. I would just like escape. I'd rather just run away than actually have a goodbye. Because you're supposed to give lots of compliments in a goodbye, and yeah, okay.
PATRICK CASALE: Yourself sitting there nodding saying the same thing over and over and over again, and then like backing up slowly out of the room.
MEGAN NEFF: Yep, or just not be in the room, to begin with.
PATRICK CASALE: That.
MEGAN NEFF: Low-level interpersonal interests and part of what goes on this is like, maybe turning off when the conversation doesn't interest us. I definitely do struggle with that. But I think over time I've created creative ways to try to make the conversation interesting. I'm going to be stuck there for a while. It's interesting, I've always thought that's more of my ADHD. But if a conversation is not interesting to me, I, like, feel physically sick in my body. And I'm just like, "I need to get out of here."
PATRICK CASALE: Yep, I can co-sign on that statement. And I think that we've talked about this sometimes that that can be a struggle if something unexpected happens. Like, you're meeting a friend for coffee, but then they bring another friend, and then you're stuck in their conversation.
And that person changes that dynamic, or you're no longer interested in the dynamic. And then you have to sit there for an hour.
And what that feels like to have to force yourself to sit there, try to interject when you can, throw a comment in here and there, but very visibly, like not paying attention to the actual conversation. That's what happens to me a lot of the time.
MEGAN NEFF: And I will say, like, I see this dynamic play out. I'll observe it in others. And I do think, like, this is a tricky one, like, in the sense that, like, I see how this is hard for people in our lives.
And it's really interesting to have this lens and to see it where I can… if the conversation is of interest, the autistic person that's in the room is so engaged, and animated, and alive, and present, and like fills up the room with energy. And then as soon as the conversation shifts to something of non-interest, like it… And not all of us, I see that sometimes. It's like their energy becomes a vacuum, because they're so depleted. And then I see the room deflated with it. And like, "Oh, this is really interesting."
PATRICK CASALE: Spot on. If I'm interested in the conversation or the situation, I can be the most charismatic person in the room. And people are, like, drawn to that energy. But the alternative can be true, where it's like, oof, this is very noticeably uncomfortable for not only him, but for people who are now, like, in that space or circle, too.
MEGAN NEFF: Back to narcissism. This could look narcissistic, right? Like, when they're talking about themselves or something they're interested in, they're lively, they're like the life of the party. But when the conversation shifts to someone else's interest, they get cold, or mean, or… Like, whatever, however, we are read.
Yeah, I could see how that could be one of the things that causes us to perhaps present as the one with NPD.
Yeah, I wish I was better at that. I do. That is something I'm like, "Okay, I wish my brain, because I do care about the people in my life. And I want to be engaged in the things that interest them, but that don't necessarily interest me.
Like, for Luke, he loves European soccer. And sometimes I think I'm a little bit interested, but not really. And it would probably be good for our marriage if like I could master more energy for those conversations.
PATRICK CASALE: For sure.
MEGAN NEFF: Or genuine interest.
PATRICK CASALE: Yeah, I agree. And I think it's one of those things, like, we've talked so much, so often about. Like, some of the grief that we have, in general, sometimes, about our own experiences, and how other people that are close to us experience some of, you know, the things that we struggle with, I think it's one of those things where I wish I could out think it. Like, I wish I could really tell my brain or my body to be like, "You should be engaged. You should be excited about this." And I haven't been able to figure out that solution yet.
MEGAN NEFF: I hope this is okay to say. I think it's happened to me too. But there's been times in our podcasts, especially, when there's three of us where like you disappear, and I want to be like, "Patrick, come back."
PATRICK CASALE: Yeah, that's fair. That's [CROSSTALK 00:40:14]-
MEGAN NEFF: And I can tell, I'm like, "Patrick is bored right now."
PATRICK CASALE: Patrick's gone.
MEGAN NEFF: You've gone.
PATRICK CASALE: Yeah. It's totally fair to say, yeah.
MEGAN NEFF: Oh, here's another… Okay, initiating interactions, difficulty initiating that. Yeah, but I don't like initiating that. I mean, I guess it is difficult, but I also will just, why would you unless… All right, that sounds so bad. Oh my gosh, this series is going to… my true colors.
I mean, this goes into social motivation, which is in another category. I have very low social motivation. I don't initiate often, but partly because I don't want to.
PATRICK CASALE: Yeah, I would say my social motivation is a bit higher than yours, in a lot of ways.
MEGAN NEFF: Yeah, I would say.
PATRICK CASALE: I probably do initiate interaction more often. I think I crave it quite often, actually. I think my balancing act is like, actually, the definition of balance of like, don't overdo it, don't push yourself past your limitations and struggles, because, otherwise, you pay for it via autistic burnout.
So, yeah, I think in relationships that I want to have, I have no problem initiating. But in the relationships that feel more like acquaintances, or going back to what I said about putting people in buckets very quickly, if you fall into one bucket, and there's not a lot of motivation there, then yeah, initiating that interaction, there's very low likelihood that that happens.
MEGAN NEFF: Yeah, yeah. And I've shared this on the podcast before too. Like, if I'm walking and I'm going to cross someone, like, I'll cross the road so I don't have to have any kind of initiation. I will actively avoid.
It's interesting. When you say that you do have more social motivation than me, when I think about our text conversations that happen outside of the podcast, I think you're usually initiating.
PATRICK CASALE: Yeah, for sure.
MEGAN NEFF: Sorry.
PATRICK CASALE: There's no apologies necessary. Like, I think I have good insight into our dynamic and friendship. So, I'm just like, I'm thinking about Megan, I'm going to text Megan. And if Megan doesn't text me back for six days that's okay. I'm not going to take it personally, because I know the inner workings, though.
I think that can be more challenging when you don't, right? Like, so if you have context clues, if you don't know about someone's needs, or the things that they are, you know, really focusing on, in general, in terms of their lives, it can feel personal, right? Like, there can be probably some fallout in friendships and intimate relationships if we're not able to better understand what we need from each other.
MEGAN NEFF: For sure, for sure. So, that's going to be the third criteria of, A, is like friendship maintenance. And for me, I know that has been the hardest. Like, I can develop quick, intense, deep friendships pretty quickly. But maintaining them is really hard. And things like that, like the fact that I don't initiate, and think to reach out, and text or even how slow I am in responding to texts, that is part of why the maintenance of friendships is hard for me. Unless you live with me, and I like physically see you, I have a hard time. And these are people I care about deeply. Like, that I still I just have a hard time initiating.
I think I am more autistic in a way, not like more or less autistic, but like autism, the word in your own world. I think I am more that way than you are. Like, I get very absorbed in my world and my mind. Like, that's probably my highest autistic trait.
PATRICK CASALE: Yeah, yeah, I would agree with that. I think that I kind of bounce in and out of that. But I don't spend as much time there. I don't think. I spend more time in how physically uncomfortable I am and how I'm trying to do everything in my power to avoid that feeling. That's kind of where I spend most of my time.
MEGAN NEFF: Wait, where do you spend your time? Trying to avoid physical discomfort?
PATRICK CASALE: Yeah, because it's like something that's on my mind all the time. So, I'm just like, how can I distract myself or not have to be in that setting?
MEGAN NEFF: That's terrible. Daydreaming is way better, and like getting lost in ideas is way better. You should give it a try.
PATRICK CASALE: I love when I get lost in ideas. That's when I'm the most creative. Like, if I feel like I'm really drifting into that space, then that's probably when I'm going to create something really cool, because that's when I allow myself to just like, exist, which feels pretty good.
MEGAN NEFF: Yeah, you should do it more. I highly recommend it.
PATRICK CASALE: You just made the same face that you made when I was like, "Oh, I'm getting ready to host 25 people for three days." And you were just like…
MEGAN NEFF: Yeah, you do stuff that, like, sounds like such sensory nightmare. I don't know why you do that to yourself, Patrick.
Okay, I'm going to list out three more points for us to talk about. And I'm just laughing at all of them. Unusually direct communication style, check.
PATRICK CASALE: Check.
MEGAN NEFF: Unexpected amount of context to the listener, check. Difficulty engaging with the group, check.
PATRICK CASALE: Check. Moving on.
MEGAN NEFF: Yeah. Again, our podcast is like a testament to all of those. Okay, here's a few others that… Some of these are actually newer to me, misunderstanding other people's intentions.
So, like a child, an autistic child, if another child kind of runs and like, bumps into them, or bumps their toys over, an autistic child might think that was intentional. So, misattributing intentions were, like, accidental.
That was interesting to me. I think I've seen that and like, I've seen it in children I have around. I don't know that I've seen that in myself. Is that something you…?
PATRICK CASALE: I don't think I've ever seen [CROSSTALK 00:46:58]. I think I see the opposite of myself where I'm like, yeah, yeah.
MEGAN NEFF: Or where you assume that, like, you give people the benefit of the doubt?
PATRICK CASALE: Far too often. Yeah, far too often than being way more susceptible to like being taken advantage of.
MEGAN NEFF: Yes. I guess that would go under misunderstanding intentions. And I mean, we know that from the research of like we are victimized at such high rates, yeah. So, yeah, knowing when someone is manipulating you. Absolutely.
Overusing one way of interacting with others. Like, so if it works, you just repeat it. Yeah, yeah. That makes sense. Yeah. I've definitely talked with folks where it's like, a joke worked once, so then they started using it, because it made people laugh. But with limited awareness of context use, not realizing, like, why that joke that they maybe learned on, like, YouTube, it's kind of inappropriate, why that works in one context, but not another context.
And that can actually get people in trouble, because it can, all of a sudden, something that's like funny is, "Oh, that's sexual harassment." In this context. Yeah.
Well, we made it to reciprocity. Is there anything about reciprocity you want to add?
PATRICK CASALE: No, I think that feels like more than enough.
MEGAN NEFF: Okay. The second part of, again, criteria A, social communication is nonverbal communication. So, that's things like tone of voice, rate of speech, facial, like, reading, both receptive and expressive.
So, reading other people's faces, and then also expressing our faces, body posture, body gestures, all of these things. I don't know about you. I know for me, I just thought it was normal. I would, like, coach myself what to do with my body.
So, I'd be like, okay, this person is saying something, you want to look engaged, you should nod. But I would watch videos of myself when I was training to be a therapist, and I was just nodding incessantly.
PATRICK CASALE: Yep, I think I still do that in some situations when I'm like, in an uncomfortable social situation, where I am definitely, like, very much coaching myself how to stand. Where should I put my arms? Like, you know, do I nod over and over? Do I just, like, smile constantly? It's like, oh, if I could just [CROSSTALK 00:49:44]-
MEGAN NEFF: Do you know where to put your hands? I've never known where to put my hands.
PATRICK CASALE: Oh, if I'm, like, okay, so, taking pictures next to people, I never know what to do. Do I put them in my pockets? Do I put them behind my back? Do I, like, put my hand on my hip? Like, I never know what to do.
MEGAN NEFF: Oh my gosh, I hate pictures. Do you hate pictures?
PATRICK CASALE: I hate pictures. I have to force myself to laugh. So, we're doing headshots for our group practice two years ago. And I had to keep, like, because like it's very hard to smile, like just on command, like, you know? So, I would have to keep going like, "Hahaha."
And the person next to me to was like, "What the fuck you are you doing." I'm like, "This is what I have to do. Otherwise, every picture is going to be like…"
MEGAN NEFF: Oh my goodness. I was once, oh, this is a random flashback memory. So, my first year of college I was in California. And in California, like, you can actually get paid to like go to shows. I can't remember what show. It's something like America's Got Talent or another one.
And I went with some of my dorm mates, and we dressed nice, because there was like a competition, Best Dressed, and you got $100. This is how they make audiences look nice, by the way. There's like all these things that go into it.
So, we're in the front row. And they would tell us, like, applause, clap. And at some point, the like, producer guy was like, "You're just really like not happy, are you?" Or something like that. Because like, I couldn't get animated, and like do the smiley thing. And I guess it was so bad that he, like, made a comment. Because you know, there I was in the front row ruining their show.
PATRICK CASALE: Makes me just think about how often a lot of us have experienced comments like that. Like, I-
MEGAN NEFF: I was at Starbucks doing some work, like a year ago. And an older gentleman, an older man came up to me and was like, shouting like, "You're working too hard." Or like, "Put a smile." Like, that stuff, like, that females get, particularly, a lot of from, especially, older men of like, smile.
I hate that shit. Both like the feminist in me of like, I can do what I want with my face, but also the autistic in me, of like, why? Why do you need that performance from my face?
PATRICK CASALE: Can't tell you how many times someone has made a mention of my face of like, "You look so despondent. You look so sad. You look so, like, unimpacted. You look so depressed. Like, you're a wet blanket." Stuff like that. Like, where I'm just like, "What? I'm just being-
MEGAN NEFF: Mature.
PATRICK CASALE: …just existing here, that's it."
MEGAN NEFF: And that can mess with us. I had a friend in the program, in my doctoral program. And he was definitely an empath. So, when he would ask me something, I would take it seriously, because I knew, like he could absorb energy. But sometimes he'd be like, "Are you okay?" And then I'd get in my head of like, "Am I okay? Am I not okay, and I didn't know I wasn't okay?"
And I think sometimes maybe he was picking up stuff. But I think sometimes it was just my flat face makes it look like I'm not okay when I'm fine. It's just that's my face.
PATRICK CASALE: Totally, yeah. Same boat many times. But there are times when I'm in situations where I cannot fix my face. And that's something my wife would tell me is like, if I'm going to express something, I'm just like, like, I think I make this expression a lot where I'm just like, "What the fuck?" And I can be problematic in social situations.
MEGAN NEFF: That is interesting. I mean, that's the flip side, right? Like, so many of us can have a flat effect, but also we can have a harder time hiding our natural responses. So, if someone says something shocking, or offensive, or does something, like, our face is going to show it often.
PATRICK CASALE: Totally, yep, yep.
MEGAN NEFF: It reminds me of, like, how much we value authenticity. Like, we have to really work against the grain of our nature to be inauthentic. Like, we have to mask to do that.
PATRICK CASALE: It's amazing how often like, my business brand is essentially always like, remembered as, "Oh, you're so authentic." I'm like, "I'm not doing anything to be different than who I am though." That's the thing is like, when I'm offering coaching for people or services for people and they're like, "We're just like that you tell it like it is. We just like that you're very straightforward. We just like how authentic you are, how real you are, how you're not fake." And I'm like, "37 years and counting, I haven't been able to change that." Like, that's just…
MEGAN NEFF: That's so interesting. That was always the feedback I got too. Like, in professional settings people would be actually really like how much authenticity you bring or vulnerability. That's also an interesting one of like, I do bring vulnerability, but I'm also like, so guarded. It's really an interesting paradox.
PATRICK CASALE: It's that like vulnerability through authenticity, though. It's that vulnerability that is showing up as your authentic self, right? Because it's like, I'm allowing myself to just show up the way that I'm experiencing whatever the case may be.
MEGAN NEFF: Yeah, yeah, yeah. There needs to be, like, two uses of the word vulnerable, like one and like how you show up authentically, and then, one, like, relationally.
PATRICK CASALE: Right.
MEGAN NEFF: Body positioning, body posture. I know for me, sometimes, I'll think people are done with conversations before they are because like, if they're crossing their arms or if they look away, it's like my analytic brain has learned they're looking for something more interesting, they're done.
So sometimes, like, I've had times where I've just like, awkwardly left, or I'll be like, "Okay, bye." Because they've looked away. So, I'm hyper-vigilantly really aware of people's body posture, which I think is a compensation for the fact I'm intuitively maybe not as easily able to pick up is this person done with this conversation. Are they interested? Yeah.
PATRICK CASALE: Happens all the time. It happens on phone calls, especially, too. Like, if you're reading the inflection in voices, or we just don't always pick up on inflection and voices.
But I have removed myself from social situations prematurely so many times and then had to be like, "Oh, my God, I'm so sorry. Like, you were still talking about the thing that took us 180 second pause on, I'm sorry, I'm back, okay." Like, I've even said goodbye to friends. And then, like, walked away. Like…
MEGAN NEFF: I don't know if this was part of your core schema. But yeah, for me, it was also the assumption being that people aren't that interested in me, or I'm not that interesting of a person. So, the default assumption is, unless I can, like, really tell they're engaged, that people are going to want to leave the conversation. And so because that was the core schema, it's like, as soon as I would see any of these signs, then it's like I was trying to give them an out by leaving first, yeah.
PATRICK CASALE: Yeah, it's almost like this, like, checkbox, like lightbulb moment goes off, where it's like, "Okay, we're done with this. They're no longer interested in this interaction. So, now I need to remove myself from it to prevent them from having to endure any longer."
MEGAN NEFF: Yeah, exactly, exactly, yeah. Yeah, there's also, like, I almost wish there was someone who is autistic on the podcast, who's not like us, because there's another presentation, right? Like, perhaps the stereotypical presentation where the person struggles to pick up that the other person in the conversation is done and they keep talking. And then over time, they get negative feedback, like from people around that.
So, that is also, like, classic autistic presentation. I would say the more stereotypical presentation of they're not hyper-vigilantly cued into body posture, and they're missing stuff, and then they get negative feedback from the world because of that.
PATRICK CASALE: Yep, which reinforces a different core schema.
MEGAN NEFF: Yeah, absolutely.
PATRICK CASALE: Yep.
MEGAN NEFF: Eye contact is part of this. How do you feel about eye contact? Do you do eye contact?
PATRICK CASALE: I mean, I would prefer not to.
MEGAN NEFF: [INDISCERNIBLE 00:59:14] my face when you just said the face of disgust?
PATRICK CASALE: I would like to make it like, briefly as a check-in point to like, check back in. Okay, are we still engaged? Are we still talking? You know, whatever the case may be, but it's so uncomfortable for me and I would much rather look down, I'd rather much rather look all over the room, and much rather, like, not have to make really intense focused eye contact.
MEGAN NEFF: I don't know how anyone enjoys that. Like, yeah, yeah.
PATRICK CASALE: So, quick story is when I was in Sedona a couple months ago with some friends, I told you, I was like, going to be very open to all the Sedona things, tarot readings, aura readings. The person who did my aura reading literally, like, for 30 minutes leaned forward from like, across a desk and made hardcore eye contact without like, blinking for a half an hour.
And I was so uncomfortable that I was just like, sitting like this answering questions. And my friends who were in the room witnessing this were just laughing so hard. They're like, "This is awful for us. And we are okay with eye contact. We knew how uncomfortable you were."
MEGAN NEFF: It sounds so intrusive. I can't believe you managed that for 30 minutes.
PATRICK CASALE: It was not fun. But yeah, eye contact, you know, and then I think about like job interviews, too, right? How often people have to, like, go into job interviews, and if they weren't making eye contact, what the perception could be? If like, this person's not really interested in the position, this person doesn't really want to be here.
So, whenever I interview staff for my group practice, I'm always like, "Listen, if you want to turn your video off, turn your radio off. If you don't want to make eye contact, please don't. I want to make sure you feel comfortable."
So, I think eye contact, yeah, it feels intrusive, it feels uncomfortable, it feels like I want to crawl out of my skin, most of the time.
MEGAN NEFF: Yeah. That nails it, I want to crawl on my skin. Yeah, absolutely. Yeah. I didn't even realize I did this. But I mean, I think I did some eye contact. But I mostly, like, would look at that space in between people's eyes. And then I actually look at people's lips, mostly, because I have some auditory processing stuff. And so I have a hard time understanding what the person is saying fully without that. So, I realized, like, I just always looked at people's lips. And I guess I've never thought to be like, oh, this is weird that I'm looking people in the eyes, but because I was looking at their face, maybe it wasn't as obvious. Yeah, eye contact.
PATRICK CASALE: So, just for my own purposes, I do have to jump into that other meeting in like five minutes. We-
MEGAN NEFF: Yeah, so we should wrap this up?
PATRICK CASALE: Like, I want to come back to this, because I'm really enjoying going through it like this. I think this is a really great way to do this episode. So, thank you for suggesting that.
MEGAN NEFF: Well, good, I'm glad. I was like, "Oh." When I suggested the DSM, I think it's going to sound really deflating and boring. But I like this way of like, going back and forth and digging into what these things can look like.
But yeah, you have a meeting. And we have, you know, like, nine more episodes of what is autism that we should do?
PATRICK CASALE: Yeah, this is a good way to do deal with them. So, wherever we leave off today, we can just pick up from the next time we record.
MEGAN NEFF: Yeah, sounds good. Go enjoy some great eye contact and small talk in your next meeting.
PATRICK CASALE: It's actually an interview. So, I'm going to model exactly what I just said, which is like, "Hey, if you want to turn your camera off, if you don't want to make eye contact, there's no pressure here."
So that's part of the goal of creating a neuroinclusive and neurodivergent affirmative practice structure.
MEGAN NEFF: I love that. Absolutely.
PATRICK CASALE: Goodbye, you all. See you next week. Bye.
