Episode 5: Diagnosis Stories (Part 2) — Early Signs and Misdiagnosis

Show Notes:

For many adults who are diagnosed later in life, their diagnosis story often begins with a misdiagnosis story.

It's not uncommon for these adults to go through childhood and some adult life just feeling like they are a bit more weird or different than a lot of the people around them.

It can even be a somewhat painful experience as they try to find answers and explore the reasons why they just don't seem to fit in and why they present themselves the way they do.

If you have been exploring the possibility that you might be undiagnosed or misdiagnosed autistic, ADHD, or another neurodiverse diagnosis and want to explore more about what that might look like, this episode is for you.

Top 3 reasons to listen to the entire episode:

1. Understand some signs of autism and ADHD in early childhood and teen years, and how they can be misdiagnosed or misunderstood.
2. Identify ways that undiagnosed autism and ADHD can impact development around and interactions with environments and people and manifest self-soothing habits, as well as how to identify what grounds you and helps you regulate and cope with things that cause you discomfort.
3. Hear the personal stories of Megan and Patrick prior to diagnosis and how they showed up in their childhood and teenage years.

Undiagnosed autism and/or ADHD can have a huge impact on the way an individual shapes their behavior, beliefs, and relationships in the world, and finding answers to a lifetime of questions only in adulthood can feel frustrating and confusing but also offer a sense of relief and comfort. It's important to explore what helps you regulate your body, find comfort, self-soothe, and cope with stress to live a life that is designed around your uniqueness.

🎙️Listen to more episodes of the Divergent Conversations Podcast here
🎙️Spotify
🎙️Apple
🎙️YouTube Music
▶️ YouTube

Transcript

PATRICK CASALE: Hey, everyone, this is another episode of the Divergent Conversations Podcast. I'm your cohost, Patrick Casale.

MEGAN NEFF: And I'm Dr. Neff.

PATRICK CASALE: And Megan is going to kind of start us off today, following up and continuing on the conversation we had last week about diagnosis history.

MEGAN NEFF: Yes. So, I messaged you right after we stopped recording, and I was like, "Hey, can we continue that conversation next week?" I think my thought after we recorded was, that was cool to talk about our diagnosis experience, and like post-diagnosis, our response to it. But I left feeling like that's not actually my diagnosis story. Those are the details of kind of surrounding my diagnosis. But my diagnosis story starts back when I was like, a two or three-year-old eating dirt out of the plant, and then, becoming an OCD anxious child. And like my diagnosis story starts with a misdiagnosis story. 

So, I thought it'd be really interesting to go back and talk about, like, Patrick and Megan Anna as undiagnosed children and teens. There's something you said last week about a lot of the questions that you had about yourself. You were kind of answering under this umbrella of complex trauma. I was also trying to answer questions and like, putting on lenses like, is there repressed trauma here? So, I think that would be a really interesting area for us to continue to explore.

PATRICK CASALE: Yeah, when you brought that up to me I started thinking about it, and it started to make a lot of sense to have that conversation. And I think, you know, you just brought up something that clicked for me, like, we are so often seeking these answers, right? Like, why? The why behind something, why do I present this way? Why do I act this way? Why do I experience life this way? And I think that we're always, constantly, not just existentially but like, there's this need to know. And-

MEGAN NEFF: Yes, yes.

PATRICK CASALE: I think that's really important to just be mindful of, of like how badly people who feel like they don't belong or fit in are trying to figure out the why behind that and how challenging and painful that can be as an experience throughout the duration of a lifespan.

MEGAN NEFF: Yeah, yeah. I mean, right before I was diagnosed, I'd been in-depth therapy with a psychoanalytic psychotherapist for three years. And at the point of the work of like, I was coming to accept I would just never have answers to all of these questions. Like, that was my work. And then I got answers, which was lovely. 

But yeah, there's so much searching. So many, particularly, women and genderqueer people have reached out with a similar story of, "I was looking into, like, the possibility of repressed trauma, like, to explain this." But just people spending thousands and thousands of dollars and time in psychotherapy trying to get those answers.

PATRICK CASALE: And so much frustration along the way of each misdiagnosis leading to more irritation, and frustration, and just kind of wanting to wave the white flag of like, "All right, I've tried everything I can. None of this is accurate. I fucking give up."

MEGAN NEFF: Well, I think we could even think of it as a reenactment every time there's a misdiagnosis. Like, our experience of misattunement to the world, our experience of being misattuned to ourselves. Every time we're misdiagnosed, we're re-experiencing a misattunement. 

And then, so a classic story, right, especially, people who are more fight-flight oriented, they get misdiagnosed, their fight-flight instincts come out, they get angry at the provider, the provider comes back like, "Oh, I think this is BPD." Like, and then we're definitely often running with an enactment.

PATRICK CASALE: Yeah and then leading to a lifetime of stigmatization and discrimination and therapists who don't want to work with you, and you're kind of pushed to the side of saying, "Oh, this person is going to do A, B, and C when they come to therapy." Or, "They're going to be difficult to work with."

MEGAN NEFF: Yeah, it'd be really interesting to do a study of like self-alienation among late-in-life diagnosed. And I realize it's funny, late in life diagnosed can mean so many things. I think of like 30 plus when I… I mean, later, 20s is definitely a later time to be diagnosed. My child was diagnosed at 11, that's late for a child. But like 30 plus, it'd be really interesting to look at like self-alienation, because I bet there'd be a lot of it.

PATRICK CASALE: Yeah, I'm sure that there would. So, take us back to Megan Anna's childhood. Like, what are we noticing? What's coming up when you're thinking about going back in time? And just some of the things that were showing up or you were experiencing that you can remember?

MEGAN NEFF: Yeah, I mean, I actually have pretty good memory like a lot of autistic people. So, the eating dirts and plants, and I like remember eating paper. It's so weird, because seeing these things now it's like, "Oh, that's obvious." It never seemed weird to me. It was like, of course, you would see what paper tasted like and dirt. And of course, dirt is delicious out of plants. But that was one of those things-

PATRICK CASALE: How could you have known any differently though? Like, that's just your reality at the time.

MEGAN NEFF: Yeah. So, pica, I don't know if I'm pronouncing that right, but pica is really common among autistic children. And so, that was present. I wasn't necessarily the child that had, like, huge tantrums. In early childhood, I did start having, like, some depression, anxiety, and OCD. And I remember, like, I would retreat to my closet a lot. And I would kind of hide in there. I'd make up songs, like, really sad songs. And so, there's definitely some depression early in life.

I had a lot of rituals, which it's hard to know if that, like, and this is really hard to tease out with OCD and autism. But I had a lot of rituals like, every time I would leave my parents I'd say, "Goodbye, love, you don't die." And if I missed it, I'd be so anxious all day that they were going to die, because I hadn't like, I mean, that seems more OCD, because I'm trying to protect something from it. 

But my parents, I have talked to them a lot. So, my dad's a psychologist. So, that's interesting, right? I have talked to them a bit about what they saw. And they definitely noticed the OCD stuff. I had a lot of, like how I would move my face. If I move my nose this way, I'd have to make it even so I'd be, like, doing a lot of things like that, or how to make things I touched even. So, there's a lot of like OCD rituals I was doing early in childhood. 

And they had a conversation, apparently, about do we seek out, like, help and diagnosis? They obviously weren't thinking autism, I'm a child of the 80s. Like, more OCD stuff. And ultimately, they decided, like, let's not stigmatize this by getting treatment, which again, in the 80s that made a little bit more sense than that would now, and kind of see what happens. And it kind of passed which can be common for children. It got internalized in my adolescence, which we can maybe talk about later. 

And I was a sensory seeker. So, I have two older sisters. They were always very close. I was always the outsider. My sibling relationship was my first social isolation. And I think, I would purposely, like the sensory seeker in me would purposely bug them. So, I had difficulty in those relationships and difficulty in friendships. It was more though because I had this, like, idealized best friend, and then, I'd be disappointed. At least that was the narrative I was telling myself. So, yeah, I don't know, that's kind of a clustering of early childhood. 

Oh, and I had difficulty reading. Looking back, I had surface-level dyslexia. I think I still probably do, which is why I still have grammar errors that go out to hundreds of thousands of people on Instagram and sometimes. So, reading in school was so painful for me. I hated going to school. I didn't have words for it, but dyslexic. I was so bored, I was so sensory overloaded, I was so confused. Like, I wasn't tracking the teacher. So, I also had this as a child, I had a pretty strong sense that I was stupid. And I saw my sisters being very smart. So, yeah, I don't know, that was my early childhood. What was your early childhood like? Was it as bright and beautiful as mine?

PATRICK CASALE: It was super fucking dark. Like, I have such little memory of childhood, because my parents got divorced when I was five and it was a really volatile, traumatizing divorce and we moved a lot. So, like, there was just a lot of disorientation, and dissociation, and just the inability to really find any sort of grounding or regulation. And I do remember, like some of the stuff that you're mentioning, like as a kid eating stuff, because like mint flavored ChapStick and like [CROSSTALK 00:10:04].

MEGAN NEFF: Oh, yeah. I ate ChapStick too.

PATRICK CASALE: And like-

MEGAN NEFF: Why do they do that? It's like they're [CROSSTALK 00:10:09].

PATRICK CASALE: I don't know. Like, what are you supposed to do with it? So, I just eat like sticks of it and get sick. 

MEGAN NEFF: Oh, my gosh.

PATRICK CASALE: I would eat like, not playdough, but like, I would definitely like bite, and chew, and smell everything, especially, like, silly playdough-ishy stuff. I do remember that really vividly. I had collections of things. 

MEGAN NEFF: Yes, me too.

PATRICK CASALE: Like, I had endless amounts of Beanie Babies. One, I thought I was going to be, like, super rich, but also, I had, like, tons of them. I had this Garfield collection where it was just, like, everything Garfield, ceramics [CROSSTALK 00:10:52].

MEGAN NEFF: Oh, that's amazing.

PATRICK CASALE: Everything like, I had this massive paper mache Garfield bank that I bought at a yard sale and like, all of this stuff. And then, like, weird obsessions that come to mind now, like pugs, the animal, like pug bags and stuffed animals, and figurines, was really obsessed with Arnold Schwarzenegger. So, I had like, tons of Arnold Schwarzenegger stuff.

MEGAN NEFF: Oh my gosh. Do you remember who Jonathan Taylor Thomas was? 

PATRICK CASALE: I do. 

MEGAN NEFF: I was obsessed with him. I would have celebrity crushes. I had put posters of him all over my room. Like, I had a bunk bed. I put posters on the ceiling, so like it'd be the last thing I would see before I'd go to bed at night. Yeah, I was special interest hard on cute celebrity boys.

PATRICK CASALE: Yeah, I had a lot of those special interests. I think that's the one thing that stands out to me. And I think the other thing is like, two things you named, school was so boring for me. I would get in trouble a lot. I couldn't sit still. I would blurt things out in class. I mean, a lot of what we're talking about probably fits more of the ADHD type for me at the time, but like, I would get straight A's. I wouldn't have to try, I'd retain information really easily. I was in advanced reading. I do remember being in speech therapy, though, when I was younger. I couldn't really-

MEGAN NEFF: Yeah, that's really common, yep. 

PATRICK CASALE: Yeah, but I don't remember much of it. I just remember, like, having to leave class and do it. One thing that always stood out is the challenge with connecting and making friends. I don't think I made my first, like actual friend until third grade. That always stood out to me, where it was just very challenging. 

I have four sisters as well. So, I was always kind of like, on this island and just reading a lot or by myself a lot. And I think also, like, as we get into, like, adolescence, I got in trouble all the fucking time. Like, I did some, like, really bad stuff as a teenager, but I was seeking it out. But I think a lot of that was like, I didn't have parents who were paying attention to me. So, even if all the signs were there that, you know, your son is autistic, they were never going to get me tested or support because the divorce was messy and they were just kind of like unable to almost take care of themselves as adults. So, it was a lot of self-soothing and that became something that has still been one of my coping mechanisms to this day is that self soothe of like not asking for help, having to do everything on your own, and obviously, that brings its own challenges with that.

MEGAN NEFF: Yeah, yeah. When you talk about kind of self-soothing on your own, like, would you say you have a more avoidant attachment style?

PATRICK CASALE: Oh, yeah, for sure. 

MEGAN NEFF: Same.

PATRICK CASALE: Yeah, you know, like, that's why I think I always like fantasy so much. Like, I could escape into it. Definitely, was like, avid Goosebumps reader, Boxcar kids.

MEGAN NEFF: I loved Boxcar kids. It was like my fantasy to be one. Like, the first book, particularly, when they're setting up the Boxcar and they're like getting the dishes, I don't know what that first book, I probably reread it so many times.

PATRICK CASALE: There's something like romanticized up right there, right? Of like-

MEGAN NEFF: Yes.

PATRICK CASALE: …a run away and like, live in this, like, secret place, and like, have this family here, this unit to support you with and Lord of the Rings, Hobbit stuff. Like, that was obsessive. Like, that was special interest to the max and like rereading and rereading, and often, like, going off into those worlds, because it was the only place that I could feel playful, it was the only place I could feel safe and it's still a big part of my life today.

MEGAN NEFF: Yeah, you know, I see a lot of that in, like, assessments I do, folks I work with. Like, when books are special interests it's harder to detect, because that's a positive thing, right? Like, "Oh, good, like, Patrick's off reading." Like, no one's like, "Oh, Patrick's off reading for hours, we should go get him an autism assessment." Like, no one's thinking that way when books are the special interest. 

PATRICK CASALE: Right, absolutely. That's a great point. But then if you're like, behind the scenes you're like, "Patrick read The Lord of the Rings trilogy 10 times this week and like, continues to reread it, and reread it, and reread it. And if you offer him something new, then he's going to get really irritable and there could be some sort of meltdown that happens."

MEGAN NEFF: Yep, yep. Yeah, that's why you always, like, this is some of the… when I consult with therapists learning about assessment it's like, you can't just stay at the surface of like, "What do you do for fun?" "I read." It's like, "What do you read? How many times you read it? What do you watch? How many times have you watched that series?" Like, you've got to do that second layer of questioning around these really common responses. Like, "I read, I watch TV." [CROSSTALK 00:16:09].

PATRICK CASALE: …black and white responses, right, of like, everything's linear, everything is really fact-based, and everything's really concrete. So, not going beneath the surface without asking those questions that aren't just yes or no questions, right? Like, you mentioned last week about your husband telling your daughter there was meat in the food when there clearly wasn't, and just the reaction of it. And that's the same thing. Like, "What do you do for fun?" "I play soccer, or I write, or I watch this show." But if you're like, "What do you watch? How many times do you watch it? What characters do you really like? What characters do you not like?" Then you kind of start developing that worldview of like, oh, here are the special interests that are really coming into play.

MEGAN NEFF: Yeah, yeah, yeah, yeah. I love hearing about people's collections and childhood special interests.

PATRICK CASALE: What did you have? You mentioned like, you were like, "Oh, I kind of had that too. Like, being [CROSSTALK 00:17:06] was a thing, for sure.

MEGAN NEFF: I had some Beanie Babies. I think my collections on as a young child, I had a coin collection, which is kind of boring. But I had a coin [CROSSTALK 00:17:19] cards. Really? 

PATRICK CASALE: Yeah.

MEGAN NEFF: Basketball cards was my thing. And I, like, went to this, like, small card shop in Oregon and got a really good deal on like 4000 basketball cards. And I spent so much time organizing them and then reorganizing them. At first, I'd organize them by team, and then by rookie, but I couldn't do like rookie ante, which was so frustrating for me. Like, I couldn't figure out my perfect way to catalog all these cards. But the Portland Trailblazers were like huge special interests. Robinson was another, like, special interest person who was a basketball player for the Blazers back in the 90s. And I got three of his autographs on cards throughout my childhood. So, Blazers basketball cards was huge collection. 

The other one was Barbies. It's really interesting. I remember I'd buy a Barbie. And instead of like playing with it, like, the whole idea of, like, having characters talk to each other, I can't do that. Even as a mom, I can never play with my kids that way. But what I would do is I'd pull out, like, the marketing pamphlet you get with it. And I would just fantasize about, like, building my Barbie collection and like, "Okay, I'll buy this next, and then like it'll be a whole set." And it was about building the collection. It wasn't about playing with them.

PATRICK CASALE: Yeah, that's interesting, because I had, like, these action figures that I would do that with. Like, I wouldn't play with them, but it was nice to collect them and create the worlds that they lived in. And definitely had a coin collection. I had a lot of like, minerals, and rocks, and gems and all sorts of [CROSSTALK 00:18:58].

MEGAN NEFF: My kids both have had rock collections. Yeah, that's a common one.

PATRICK CASALE: Yeah, I feel like I still have one today, because I just like finding cool rocks when I'm traveling. But like, yeah, all of that stuff is coming back to me now where it was just like, yeah, I was a weird fucking kid off on my own just doing these things, and like, nobody knew, you know? And I think that was soothing and also unbelievably isolating.

MEGAN NEFF: Yeah, yeah, yeah. I mean that experience of isolating and then finding comfort in fantasy, I think that's a really common, I know I resonate with that. I spend a lot of time in fantasy, which I think can be hard on relationships when our way to self-soothe is to isolate, and then escape into a fantasy world where everything's great.

PATRICK CASALE: Yeah, yeah, absolutely. I think that is very true. And I still do that to this day with more intuition, and more introspection now, and awareness, but I do escape into fantasy when I'm feeling like when we talked about autism burnout, I'm burnt out or just really low. And that is just a way to kind of escape, or just soothe, or find that comfort. And in that connection, that you're kind of missing out on a lot of the time, you can kind of connect with the characters and feel like you can envision being a part of that world.

MEGAN NEFF: So, I'm jumping ahead a little bit to college. But I think one pattern that was pretty unhelpful for me, this was so helpful when I learned that people could be special interests, because that happened to me so much throughout my life, but especially, like, dating college, high school years. But like, when a person's a special interest, and then, you're prone to fantasy, like, in the fantasy of the of the person and you're like fantasizing what you would do with that person is always better than the reality of actually being with another body in a room when you're autistic, in my opinion.

Because it's hard to be in a body, let alone, like, around another body who choose and like, right? And so, that dynamic always was hard on dating relationships. For me, it was so helpful in my psychoanalytic training, when I started changing my relationship to my imagination and fantasy. I used to feel, I think, maybe some guilt around it that's probably come from like old fundamentalism. But now I just have curiosity, like, so in fantasy… your fantasy world sounds a little bit different than mine. It sounds like you're going into a fantasy world someone else has created. I tend to have more fantasy around, like, my ideal self, and idealized relationships or interactions. 

Once I was able to shift toward curiosity, like, what is this fantasy telling me about, like, my unmet needs, or what I'm desiring in this moment, versus comparing my real life to that fantasy? That was a huge shift for me that really has helped me have a healthier relationship to fantasy.

PATRICK CASALE: So, I like hearing that perspective, for sure. Yeah, I've always had a hard time creating my own, like, version of that. Like, my therapist will ask me to drop into that. Like, we do a lot of IFS work and patchwork. And she's like, "Can you visualize this, this, this, and this." And I'm like, "I can't. I cannot access this. Like, I can't recreate it." I just have that like, absolute immediate blockade and it's interesting. 

But like it's just always been one of those things where those special interests have kind of helped you get by along the way too, because it brings such comfort, and satisfaction, and excitement, and joy. And, you know, what the fuck am I doing with 300 Garfield items? Like, nothing. They're sitting on this shelf. And like they were so comforting at the time.

MEGAN NEFF: Yeah, yeah. 

PATRICK CASALE: [CROSSTALK 00:23:17]. 

MEGAN NEFF: I mean, it's such a powerful way that we self-soothe and self-regulate. That's what I get when I'm working with people consulting with therapists around how to be more neurodivergent from a therapist. Like, sensory and special interests, those are the two things I start with, of like, your sensory safety, and sensory regulation, and incorporate special interests. If you're feeling like you're not able to access that person's inner world, get them talking about their special interest, you're going to see emotion, you're going to see excitement, you're going to see passion, and it's how we self-soothe and self-regulate. It's a really powerful thing we have access to.

PATRICK CASALE: Yeah, absolutely. I think that's spot on. So, then, when we're talking about, like, what does teenage years look like for you? Because that I have a little bit more ability to tap into. Like, I have such a hard time remembering years, like, three through 10, 11. Like, they feel murky, they feel like they're behind this, like, Mr. Film, or like they're not accessible a lot of the time.

MEGAN NEFF: Teenage, let's just skip ahead. Teenager years were rough, which for a lot of autistic girls that's when things tend to get pretty rough, because you've really started noticing the social differences, because like, female social communication gets much more nuanced and more dependent on like emotional sharing. 

So, my teenage years is like seriously strong with depression, anxiety, self-harm, and suicidality at that point. Like, my mental health was a mess. And at that point, I did get into therapy, which was helpful. And yeah, I got the support I needed. 

Religion was my special interest at that time, which, oh my gosh, religion and autism can be its own… Well, I was going to say it could be its own podcast. There's a lot of ways looking back that I think my fundamentalist upbringing was very not good for me. In some ways, having that in those high school years when I was so depressed and suicidal, it provided community's big analytical words, it provided a big other, it provided an anchor for me, and I needed something to orbit. And I think that's what special interests do, is they give us something to orbit. 

So, religion was that thing, but I was so, so, like, literal with it, concrete with it. I had a pretty unhealthy relationship to it. So, I was this, like, very religious high schooler who's very depressed, very anxious. Well, actually, I was more depressed and anxious. I was depressed and religious. 

The other thing that's really interesting to look back, starting my sophomore year of high school, one thing I started doing is and I did this, partly, out of my, like, religious rhetoric was, I would look for the kids who were eating alone at lunch, like in the halls, and I'd go eat with them. So, this might be like, kids with disabilities who are in, at that time, like the special ed classes, or just kind of the social outcasts who are eating alone. And I had like a rotating group of four or five that I'd go eat with. 

And back then, I thought I was doing this, like, I was being a really good Jesus follower by, you know, coming to the marginalized. Looking back, I think that was an adaptation. I think the cafeteria probably overwhelmed me. Like, I did have some friends. But I think there's probably some awkwardness around, like, eating lunch, and socializing, and where do I sit, that it was much easier to be seen as this, like, virtuous human sitting with the outsiders than to be the awkward person in the cafeteria not knowing where to sit and being overloaded. So, it was really interesting. 

Looking back on my history, I did a lot of like, seeking out the outcasts as a kind of virtuous human to feel good about myself when really, it's like, those were my people. I didn't want to acknowledge it, I wanted to come in as this, like, virtuous person who is doing something kind to them, which, you know, is gross thinking back, but it's a really interesting adaptation to my social difficulties in high school.

PATRICK CASALE: Yeah, I'm thinking about that, because it's interesting to think about, in general, the adaptation and seeking out the "Outcasts." Or those who are struggling socially, too. And I think throughout my life, and my friends would say this now, and college friends, especially, would make fun of me for it, but that I was always doing that, like, finding the people who were clearly struggling and connecting them. That even goes for like homeless folks, when I was in college. Like, my friends would be like, "Patrick is always talking to these homeless people who were, like, walking-

MEGAN NEFF: Yeah, same, same.

PATRICK CASALE: …in the streets in upstate New York." Was like, "Yeah, I just kind of get you. I think you are intuitively drawn to those who are suffering, because there's that communal suffering without having to name it." And I think that also plays a role socializing as a teenager when you're also struggling, and hormones are raging, and like, all these social norms are starting to become your reality, but you don't know how to conform, or adapt, or fit in. 

And thank fucking God, and I'm not a religious person, that I had soccer, because it was the only saving grace for me where it was like, I played soccer all throughout my life from five years old till now and you know, in junior high playing junior varsity, then in high school playing varsity and like, that was just the thing. And there was the routine, and there was the structure, and it was less socializing without having to actually talk or communicate, and that intensity seeking, too of like, "Oh, man, you can go out and just run hard for 90 minutes and be competitive." And like, that was wonderful, but like, there were so many destructive behaviors going on, too, like, feeling so isolated, and depressed, and disconnected, and unsure of who I was, and like…

But the masking component is like the straight A's, and the soccer team, and like, all this stuff, but in reality, what's happening behind the scenes is like lots of drug use and experimentation, lots of drinking, hanging out with the wrong people, getting into lots of trouble. And if not for my privilege, I probably should have ended up in jail multiple times for things that we did as teenagers and just the realization of like, there was so much unhealthy coping behavior behind the scenes to deal with the inability to feel connected to anything, or anchored to anything, or any sense of what was going on. 

I couldn't sit still. You and I talked about this the other day of like, the inability to feel that relief within your body where you have to be doing something all the fucking time and how torturous that is. And I can remember calling friends at like, a Tuesday at five or six o'clock, and I'd be like, "What are you doing? Like, this is fucking Tuesday?" Like, "I'm not doing anything." I'm like, 'Can I come over?" Like, "Can I get out of my house? Can I get out of like… can I be in movement to like, do something else?" And that was very, very challenging. 

MEGAN NEFF: Yeah, yeah. How old were you when the, like, experimenting with drug and alcohol started?

PATRICK CASALE: I was young. I mean, probably we're talking like 14-ish, 13, 14. 

MEGAN NEFF: Oh, young, yeah, yeah. 

PATRICK CASALE: Because I had a good friend who had older brothers, and older sisters, and spent a lot of-

MEGAN NEFF: Oh, and you were unmedicated ADHD, which we know like, so increases the risks.

PATRICK CASALE: Oh, yeah. And you know, that was a way for a lot of people, not just autistic folks. But like, it was just socializing and connection. It was like, we can go do this thing that we shouldn't be doing and it'll make us feel okay for the moment and feel connected. And it just gets so unhealthy and so quickly, it's gets so destructive, too.

MEGAN NEFF: Yeah, yeah. And it makes so much sense, because, yeah, for all the reasons you mentioned, the social connection reduces the strain around that, and, yeah, yeah.

PATRICK CASALE: And I think like, those were rough years. And it sounds like they were really challenging for you as well. And then, when you move into, like, early adulthood, going into college, equally as challenging, if not more so, I think, for myself. I don't know about for you. But I know like ages 17 till 21, 22 were really fucking hard, too.

MEGAN NEFF: I think I had a slightly different experience. They definitely had its moments, but for me, high school was so, so hard that when I got to college, like my mom used to say, like, "You blossomed when you got to college." I think I had more learning difficulties than you did. And it was never diagnosed, but like, yeah, school was just hard for me. But when I got to college, and I got to study the things I was passionate about that just, like, really changed me. 

And when I got into an academic culture, for me, academic culture has been where I get to camouflage, because I can talk at a really, like, cognitive level and it's not weird. You don't have to do as much small talk in academic culture. So, I think some of my quirks just got interpreted as being academic. And I went to some pretty, like, academic institutions. So, for me college, and then I went straight from college to seminary. So, I did seven years of school. I think I select school, because it gives me structure. Like, I've done 10 years of graduate school. And I just applied for Analytics Institute. So, I'm always in school, because I think the structure and it gives me a place where I don't feel as an outcast. I feel outcast when I'm, like, in any kind of conversation outside of academia, essentially.

PATRICK CASALE: Right, so school for you was actually really comforting in a lot of ways.

MEGAN NEFF: Once I got to higher ed. In high school and below, it's so interesting, I really thought I wasn't smart. And then I realized once I could study in my areas of special interests I can be pretty, like, it's so interesting, I'm having a hard time saying I'm smart. I think I am smart. I think I am good with ideas and writing, but it's so hard for me to say that, because it was… But for college, it was a struggle.

PATRICK CASALE: Yeah, it was just so hard in every sense of the word it sounds like. Yeah, it's hard to embrace that you are very intelligent, that you have a lot of great ideas, that you've put a lot of great ideas out to the world. I imagine that's got to be conflicting at times, when you go back to like, younger you.

MEGAN NEFF: You know, the workbook I'm working on for this month right now is on core schemas, which is essentially, when we're young we create these maps of who we are and who others are. And it's so hard when we interact with information that doesn't align with our core schema. There's this idea from social psychology called self-verification theory. So, when we're given feedback that doesn't align with our belief of self, we tend to reject it. So, even you just saying that, like, it's hard to accept that you are smart. Like, I started to fog out a little bit of like, this doesn't feel good, this doesn't feel right, I'm going to reject Patrick's words. And I think this happens so much for autistic people. Our core schemas tend to be very shame-based, because of early life experiences. So, then, positive feedback can make us feel, A, we can reject it, but B it can make us feel bad, because it doesn't align with our core self.

PATRICK CASALE: Thanks for naming that. And we could do an episode on that for sure, just core schemas and core beliefs of who we are, and who we believe we are, and what we believe in our capabilities as well. I have a really hard time taking positive feedback as well. And it just always hits me the wrong way where I'm like, it grosses me out. Mostly, I'm like [CROSSTALK 00:36:39].

MEGAN NEFF: I just had that reaction, and now I'm noticing I had that reaction, and then I went to an academic concept, which is how I regulate, right? Like, you said something nice about me, I started to get a little dysregulated, because I was like that doesn't feel good and I'm like on camera. And so, I went to my safe place, which is let's talk about social psychology and core schemas.

PATRICK CASALE: I love that when we're noticing this in the moment for everyone watching and listening, because these are coping skills. This is how people can circle back, and anchor, and ground again, when you start to feel yourself drifting away.

MEGAN NEFF: Yeah, yeah, absolutely. And knowing what those things are, that ground us is so helpful,

PATRICK CASALE: So helpful. I mean, because, you know, there's a laundry list of ways to ground and you can look through 99% of them. And if they don't resonate, or they don't feel comfortable to do you're going to reject them. And it can feel like nothing works. So, I implore all of you to really seek out what feels safe, what feels secure, what feels anchored, what feels regulating for yourselves, because it's going to be different for everybody listening. 

You know, Megan has mentioned many times escaping to academia or that cognitive intellectual place and feeling safe. For me, it's a bit different. And I think we all need to find those places where you can go, because of how often we can get dysregulated as well.

MEGAN NEFF: Yeah, so, I know Game of Thrones is a place you go for regulation, but when you're in a conversation like this you can't just like pull up Game of Thrones on your phone, where do you go to ground?

PATRICK CASALE: So, a lot of you can't see this, but right now I have like, four sensory toys that I'm playing with simultaneously. Like, this is a, you really can't see this, but this is like a stress [CROSSTALK 00:38:42]. 

MEGAN NEFF: That looks amazing. 

PATRICK CASALE: [CROSSTALK 00:38:43] my wife got it for me for Valentine's Day. And I've been messing with that the entire time we've been talking. So, that's quite helpful. And I think sensory soothing for me is really helpful to help me get back in my body. So, like, these shell balls, I really like because of the textures.

MEGAN NEFF: I love those, I have those, I love those. They're my favorite.

PATRICK CASALE: I love these. They make me so sad when you've like overused them and they're like no longer squishy. 

MEGAN NEFF: Put them in the fridge. 

PATRICK CASALE: Put them in the fridge? 

MEGAN NEFF: Yeah.

PATRICK CASALE: This thing's full of sand so this also helps. It's kind of like the stretchy- 

MEGAN NEFF: Oh, it's amazing. Oh, my gosh,

PATRICK CASALE: Those are all really helpful for me. I think that as, you know, for a lot of autistic people really feeling just uncomfortable in their bodies, or disconnected from their bodies, or whatever the case may be, I think that's why I've always sought out intensity in terms of sports and competition. It's the only time I can feel that, so that is a place that I'll go to. But yeah, in conversations like this, it's always got to be like something tactile, because otherwise, I will just disassociate, and then, I won't be paying attention to you anymore and staring out the window over here, so…

MEGAN NEFF: Yeah, yeah, people listening can't see this, but like I've been rocking pretty much the whole time we've been talking, which is really soothing for me. I've also been listening to a song in one earbud this whole time on repeat. I actually learned this trick from Thomas Henley, who I did a podcast with a little bit ago. He mentioned, I hope he doesn't mind me sharing this, I can reach out and ask, but he mentioned that when he publicly speaks he puts music in his ears. And I was like, "That's brilliant." So, I've been doing it anytime I speak or like when we're on a podcast and it really helps me.

PATRICK CASALE: That's amazing. You know, I did not notice that. I noticed the rocking but like, obviously, I don't notice that you're listening to music and-

MEGAN NEFF: Right, it just looks like I'm listening to you. 

PATRICK CASALE: Yeah, exactly. 

MEGAN NEFF: Yeah, no it's a song.

PATRICK CASALE: Very important to be able to figure out those ways to have that bilateral stimulation too and just to be able to soothe then, you know, this chair swivels, that helps a lot. If I'm speaking, I'll be moving all the time. So, even when I'm speaking at conferences I'll say it right away. Like, "I'm going to move nonstop while I'm on the stage." And, you know, I think, I hope that it offers people comfort to do the same. I have a colleague who recently did a webinar training where they were specifically instructed, like, "You cannot move while you're on this camera. Like you can't draw, you can't stim, you can't do this, you can't do this." And I was like, "What the fuck?"

MEGAN NEFF: I would never do that webinar if I was-

PATRICK CASALE: Right, ableist as hell too.

MEGAN NEFF: It's terrible.

PATRICK CASALE: I wouldn't be able to sit still.

MEGAN NEFF: No, I won't either, yeah.

PATRICK CASALE: And I think that's why I traveled so much as a kid, was just like, I could not sit still. Like, I can get straight A's all fucking day without having to pay attention to the [CROSSTALK 00:41:42]-

MEGAN NEFF: I'm going to be moving when I do it. 

PATRICK CASALE: I'm going to be moving. And I'm not going to be looking at you. And, you know, teachers and professors who are not ND savvy are just going to be like, "You're disrupting the class. Like, you're ruining the class atmosphere." And that was definitely on a lot of report cards. So, [CROSSTALK 00:42:01] straight A's, really smart, really intelligent, disrupts the class, behavioral. Like, you know, both had to be true, I guess, but…

MEGAN NEFF: And this is why assessors asked for report cards when you do an assessment. Those notes are gold.

PATRICK CASALE: Yeah, and just having, like, that collateral information is so helpful to kind of get a sense of, because you can see with myself, Megan and my memories are quite different about childhood. Like, it would be very hard for me to accurately give information as in any sort of testimonial about like, what was childhood like? What do you remember doing and not doing? And it just wouldn't come to me, so that collateral information is really helpful to have.

MEGAN NEFF: Yeah, yeah. Well, Patrick, it is time for our awkward goodbye, because I've got clients to get to. I'm not even going to try and like smoothly transition us, I'm just going to, like…

PATRICK CASALE: I like the abrupt recommendations. So, thanks for everyone listening to the Divergent Conversations Podcast on all major platforms. Like, download, subscribe, and share. We'll see you next week. Goodbye. Bye, Megan.

MEGAN NEFF: Bye, Patrick.