[FLASHBACK] Episode 4: Diagnosis Stories (Part 1) — The Impact of UnderstandingDec 28, 2023
For individuals who've wondered if they are autistic (or know they are but haven't been formally diagnosed), it can be a complex journey to first decide whether or not to seek a formal autism diagnosis and then to learn how to restructure the way they see and interact with the world.
Getting diagnosed and embracing yourself as autistic can feel like tearing down a wall (or removing your mask). And you can finally see yourself clearly, but so can everyone else.
You might feel relief, you might feel grief, you might feel like you don't know what to do next, so if you're trying to decide if you want to get a formal diagnosis, then this episode is for you.
Top 3 reasons to listen to the entire episode:
- Hear 2 different diagnosis stories from Megan and Patrick, including a before and after look at the way they showed up in the world.
- Understand the many different ways that autism presents and is perceived across different ages, gender, race, and other backgrounds.
- Identify what it means to unmask and how to do it for yourself.
There are many misconceptions and cultural stereotypes around autism that make a misdiagnosis or complete overlooking of autism very common. Even Patrick and Megan didn't get diagnosed until adulthood.
If you are wondering about a diagnosis for yourself, a family member, etc., then hopefully these stories can help you find the answers for you.
PATRICK CASALE: Hey, everyone, you're listening to another episode of the Divergent Conversations Podcast. I'm your co-host, Patrick Casale.
MEGAN NEFF: And I'm Dr. Neff.
PATRICK CASALE: And today, we are going to talk about our diagnosis stories and how we ended up, you know, desiring to go get evaluated and seen to figure out if we were autistic, ADHD folks, and just get some grasp of what was going on in our lives. Figured it's a good topic to talk about early on in this podcast journey, because I think it helps frame things for everybody too.
And, Megan, I don't know if maybe you want to start us off and kind of take it away with the build-up of what led you to decide that you wanted to seek out a formal diagnosis and what was going on prior to that, that kind of made you start thinking, this is something I want to do?
MEGAN NEFF: Yeah, it's interesting, because I think you and I have different diagnosis journeys, in the sense that, when I've heard you talk about it there was an element of surprise to it. I think my experience might be more common among, particularly, women and genderqueer people of, I was like, I had already self-diagnosed. And I was just like, looking for that extra validation. Which honestly, I actually wouldn't have done if I wasn't publicly talking about being autistic.
And my biggest fear, not my biggest fear, I don't like hyperbole words, pronunciation warning, hyperbole. Actually, I don't think I could say that word even if it was afternoon, hyperbole. How do you say that?
PATRICK CASALE: Now you're going to, "I'm going to be questioning how this [INDISCERNIBLE 00:01:58], hyperbole [CROSSTALK 00:02:03].
MEGAN NEFF: That word that I cannot pronounce. Oh, my goodness, my language use is just, like, people in my life have… this has been one of my Megan Anna quirks, is like, the way I make up words, the way I pronounce words, I add syllables to words. So, whatever that word is, wow, that was a tangent.
So, one of my fears has been that psychologists or other people in the mental health field would look at me and be like, "She's not autistic." Blah, blah, blah, blah, blah. So, that was a lot of the motivation for seeking a formal diagnosis was, if I was going to be in the space advocating as an autistic person, I thought it was good to do due diligence around that.
So, my story is probably more about myself diagnosis, actually, which really started with my child, which again, is pretty common story for the last generation of autistic women, and genderqueer people. And my kid's diagnosis was also a bit of a surprise, even though, it's so interesting, because my training as a psychologist, in some ways, made it easier to see my child and then otherwise made it harder, because probably for a couple years leading up to their diagnoses, there'd be a time where, because they'd already been diagnosed with ADHD. I'd been like, "This feels different than ADHD." And I'd maybe Google autism. And then, my husband and I would talk about it, and we'd come up with some reason why it wouldn't make sense.
But then we had an… I'm noticing I'm struggling to talk about it. My child has given me permission to share their story. But as they're getting older, you know, their feelings on that might change. So, I'm trying to be descriptive while also being vague.
But there was an experience that looking back was very much them interpreting something literally and having a really big reaction, which we'd been coding as dramatic and all the things autistic girls get coded us. And we went on a walk after the kind of meltdown and I was like, "Hey, did you actually believe what dad had said in that moment?" Okay, it's not going to work to be super vague about this. So, I'll tell the descriptors of the literal thing.
We're a vegetarian family. We have been for years. And my child was asking, "Is there meat in this?" We had nachos one night, and there's a lot of kind of checking behavior. And my husband said, jokingly, "Yes, there's meat." Which it's a question that happens pretty much anytime we have any sort of fake meat. And that's what led to the big reaction.
And based on context cues, based on knowing our family culture, like it would not be meat. So, that was what they had taken literally and had a big reaction to. And then, on our walk is when… And this is a very autistic thing. I think a lot of parents, like, think through, try to figure out their kid's diagnosis before just bringing it up to their kid. But I've always been very honest and open with my kids. They were also 10, 11 at this time.
But I was like, "Hey, what if it's something like autism and not ADHD." And their response was really incredible around it, was like, "You know, I'd still be me, we would just, like, understand me differently or understand me better. It wouldn't change who I am." So, that started a rabbit trail of learning about autistic girls. And we decided that day, like, we went on a TikTok binge, actually, and we're learning all of these things about autistic girls. And her whole story made sense, my whole experience of parenting her made sense.
I was very confused by parenting this child. And so many things clicked into place, which of course ignited my special interest energy. And that then led to hours and hours of research around autism in girls, and then, autism in women. And then, learning that, typically, when a child is autistic, one of the parents is on at least broader autistic phenotype, however, we feel about that term.
And at first, I was like, scaring my husband's tree, because he's very introverted and like systems, so at one hand that made sense, but he understands social cues in a way I don't. So, then, I was looking at my family tree. And I was like, "Oh, I see it. And I see it in me."
It was really cool. I have access to a ton of psychological data on me, because in my training I did an IQ test, I did like pretty much any personality test or assessment I would give to a client I've given to myself. So, I had a ton of data. So, I was doing the research, I was doing the, like, IQ in the screeners you can do online, but then I was looking through all of my psychological data, even things like when I did my IQ test my processing speed and working memory were so low compared to, like, my verbal intelligence and my other forms of intelligence, which is really classic of a autistic ADHD profile.
So, that's kind of my story was, it started with my kid's discovery, which led to special interest, which all of a sudden my life felt like it clicked into place. And within a week of doing the research, I just knew. I knew I was autistic.
I have a very distinct memory of sitting across from my husband and telling him, "I feel a piece of my body for the very first time in my life." And not because my body is suddenly magically an easy place to occupy, it's not but I wasn't at war with him anymore. I wasn't, like, the best way to describe it is I was bracing for impact constantly. And all of a sudden, I realized I was doing that, I realized I'd been doing that for 37 years. And I felt aligned. I felt aligned for the first time.
PATRICK CASALE: Thank you so much for sharing that and your daughter's story as well. And it sounds like once that realization came to place between the two of you, it was almost as if everything started to align and make sense.
And I want to circle back to a couple of things that you said, because I think it's important for people who are listening. So, one, the moment where your husband was joking about like, "Yeah, there's meat in this." And that joke just completely being taken literally and the inability to parse that out or differentiate between that is so common, right? And gets often missed and leads to that meltdown, or that frustration, and that shutdown in general. And then you mentioned something prolific that your daughter said at how old 11, 10?
MEGAN NEFF: 10 at the time. Yeah, I mean, she's always been very, like 10 going on 30 You know, she's always been acting like a little philosopher.
PATRICK CASALE: I love that she was like, "Yeah, I'm still going to be me."
MEGAN NEFF: Yeah,
PATRICK CASALE: You'll just understand me in a different way. And I think that's really profound, one, and just beautifully said.
MEGAN NEFF: Yeah. That moment has stuck with me for so long, because I think I was more afraid of the diagnosis than she was.
PATRICK CASALE: I was going to ask you about, you said that you were trying to rule out autism, right? Like, ADHD is here, but then my husband and I are, like, looking at autistic traits and then convincing ourselves like, "No, it can't be that."
MEGAN NEFF: Yeah, and I mean, I think there certainly could have been some ableism in that, I think it was more like, especially, when she was younger, would love to talk with people and very, like, seeking out of people, and now we know this, like autistic girls can be hyper-verbal, she definitely was. And it was more because of our stereotypes of autism, that we were like, "Yeah, pieces of this fit, but then that."
And then my husband, also, he at the time was in education. And this has been an interesting conversation with him around diagnosis, the kids that get identified in education systems, typically, are kids who also have pretty significant learning disabilities with autism, which our daughter does not. So, she presents differently than also, like the kids that he was used to, like, associating with autism, which again, we know this, right? When we look at highly intelligent, and I apologize, this research has been reported in the gender binary, so I am reporting that in the gender binary. But when we look at highly intelligent girls to boys, the diagnosis is nine to one, meaning what used to be considered Asperger's, nine boys to every one girl identified.
Obviously, we know that's not the true ratio. That's the ratio being identified, which means these smart autistic girls, we just don't understand. We don't understand how it presents, what it looks like. So, it was more that I think that made it hard to recognize was the gender bias, I think.
PATRICK CASALE: Yeah, like, she's not fitting into this mold that is easily constructed. And this isn't adding up to us. And it's really interesting how you were able to kind of look through different lenses, both as a parent, both as a psychologist, to try to kind of parse that apart, and then, to be able to do your own research on yourself and have that data is really useful, something that people don't have access to a lot of the time.
And so, it's fascinating to hear this story, and then, to have that moment for you. And I think that's really beautiful, just as a friend and colleague of yours to hear you say, like, "That was the first time I felt relief in my body." And I like that you named, it doesn't mean it's made it any easier of an experience, because I get exactly what you mean. But it's just that realization, right? Of like that mental fatigue, the almost gymnastics that we go through on a interaction by interaction basis that we're bracing for and we don't know that we're doing it until we have some acknowledgment or realization take place.
MEGAN NEFF: Yeah, yeah, absolutely. Like, it was a really interesting experiment around that time. So, I've always walked fast. When I was younger, it would be referred to as the McMohan walk, because that was my last name before. And I've always been a fast walker, like people that are time keeping up with me, which is funny, I'm 5'2, I'm short, but I'm just…
And it was a few days, like, after my discovery, and I was walking to get mail, and you know, there's kids playing, there's dogs, there's cars, and this was actually a relatively quiet neighborhood. But for me, it's a lot. And I just noticed how like I was tense, my shoulders were tense, and I was like walking as fast as I could to get mail. And it's like holding my breath while I'm out in the world. And I did this thing I was like, "What if I just relax, walk slow, and notice. Like, notice the sensory stuff?"
Because for me I had become very disassociated from my body. And so, it was a really interesting experience of letting myself notice the dog barking, letting myself notice my body was irritated by it, and letting that kind of flow through me.
And so, I began, actually, noticing my sensory sensitivities more but it also, because I wasn't like this rigid icicle that could just be… you know, if you think about like rigid icicles, they break off when you apply tension, because I was able to melt into it a little bit more, I found more flexibility in how I was experiencing my sensory world. It's a hard thing to put into words, but it was a really interesting experience.
PATRICK CASALE: Everything about you is so meta. I love that you're, like, breaking this down in this way while this is happening. The sensory stuff is a whole, I think, an episode in itself for sure. And I like your mindfulness approach to a lot of this that we talked about last week. To our listeners, this could be helpful, just Megan's approach in general and how she's going through the day and kind of noticing how certain sensations are impacting her. But yeah, this is really interesting.
And I think, you know, just recognizing that the research is so skewed. And obviously, we're missing the mark a lot of the time on people who don't look like me. And even then, both of us being late adult diagnoses, I mean…
MEGAN NEFF: Well, I was going to say you do look like you and you were late diagnosed. So, yeah, I want to hear more… I know I've heard parts of your story, but I don't think I've heard it as a cohesive narrative.
PATRICK CASALE: I'm trying to think of if any part of my life feels like a cohesive narrative.
MEGAN NEFF: I know, as soon as I said that I was like, "Oh, that's a lot of pressure." I definitely did not do a cohesive narrative.
PATRICK CASALE: I think you did. Yeah, so I'm 36 now and I was diagnosed last year, was it last year? Maybe it was two years ago. Time is-
MEGAN NEFF: What is time?
PATRICK CASALE: What is time right now or in general? I think it was two years ago. And I had been diagnosed ADHD several years beforehand by someone and I had gone in to get testing, because I was having these experiences that I think often overlap with complex PTSD, of like, really low self-worth, low self-esteem, inability to feel like you can be loved or receive love and just a lot of inner personal shit going on that you could certainly look back at attachment wounding for sure and childhood trauma.
But I just remember a psychiatrist that I worked with at the hospital's setting that I was working at, at the time as a therapist, was like, "I think it's ADHD. Like, the constant, like, 'I want to be elsewhere, and something else can look different, and more exciting.'" And we were just having some conversation one day and I was like, "Okay, well, I guess that could make sense. I'll go take a look." I'm trying to really figure this out for myself. I had been misdiagnosed so many times, which I know we're going to do an episode on misdiagnosis at some point. But you know, misdiagnosed bipolar II, misdiagnosed with OCD, misdiagnosed with GAD or generalized anxiety disorder. You know, I'm trying to think of what else is in that mix, but-
MEGAN NEFF: And were these adult diagnoses?
PATRICK CASALE: Yeah, like in my 20s. So, some of them fit the profile to some degree, you know, like [CROSSTALK 00:18:00].
MEGAN NEFF: Yeah, I was going to ask you if they felt like true misdiagnoses or like, they just weren't capturing the whole picture.
PATRICK CASALE: I think it was, at the time, I didn't know any better. I think that I felt like it was accurate. Like, bipolar II, I was like, okay, my mom has bipolar disorder, I have a gambling addiction, I'm very impulsive, I'm having really bad mood instability. And then when you go on these anti-psychotics for a year or two-
MEGAN NEFF: Oh my gosh.
PATRICK CASALE: …it changes or they get worse. So, it's just like those little things that you don't think about in the moment if you have the understanding or even knowledge to pursue that.
So, I was sitting in this psychologist's office going to get testing for ADHD, and she was like, "I think you're autistic." This is before we even started talking really, I'm just like, sitting on her couch. And in my opinion, you know, even as a mental health professional, I find it very uncomfortable during your first couple of meetings with anybody who's a new person in your life.
So, yeah, I kind of was like, taken aback by that. And I said, "Like, why are you saying that?" "Oh, like your affect is just very, very flat and your emotions are very blunted. And, you know, a lot of one-word answers." And I'm like, "I just met you."
MEGAN NEFF: She just communicated to you in a really autistic way. Like, very matter of facts. So, like, "Oh, well, because this, this, and this, I think you're autistic." Like…
PATRICK CASALE: Right, then I'm like, "Well, no, I'm not here for that. Like, I'm here to get testing on ADHD." And I think she probably was like, "Ooh, good, I'm just going to-
MEGAN NEFF: She backed off.
PATRICK CASALE: …let you do what you want to do." And, you know, get this formal diagnosis of ADHD. It all makes sense. It all clicks. And for a couple of years I'm feeling like, okay, I've got a good sense of what's going on in my life and areas that I really need to kind of get some more clarity on and work through, because it's impacting me.
What I started to realize like over the last couple of years was the constant, constant feelings of loneliness and disconnection in every social interaction that I experienced. And that was just like, with people who I know, like, logically, know, they care about me, they love me, they have my genuine best interests at mind, whatever, even my wife, or close friend group, and just really feeling like in every social situation I was just really struggling. And realizing that that has been my entire existence of socializing in a way where, you know, we talked last week about alcoholic needing to be involved or like, just simply feeling so much discomfort, like that crawl out of your skin discomfort of like, "I just got to get the fuck out of this situation."
And it made feeling connected really challenging. And, weirdly enough, this is probably not going to make a lot of sense for a lot of people, but my turning point of figuring this out was being at a conference in Hawaii, a therapist conference in Hawaii, a couple of years ago, and going to see the Anthony Bourdain movie that had just come out, because I have always been a huge, huge fan and was watching his experiences in the movie. And they were talking about like, his close friends and colleagues about like, the constant loneliness, and disconnection, and always wanting to be on the go, but always wanting to come back home and feeling that push-pull, but never really feeling belonging. And I just remember having lunch with a friend, and she was like, "I think you should just maybe go get tested and see if you're autistic."
And I was like, "I don't know." It was definitely my own ableism coming out, but I was like, "No, like, that's not a thing here, you know, that's not what I want to look at, and I don't think that's true."
But I did pursue it. And all the testing and all the results made sense once I heard it, and I told you this. Like, I have this experience of simultaneous like cooccurring grief and relief. And just was that process of like, relief, right? Like, you almost said, like, the first time you had felt this feeling of relief in your body, for sure. Like, okay, this all makes sense. Childhood makes sense, all these interactions made sense, like, and then grief of, fuck, I don't know how to move through life now because [CROSSTALK 00:22:38].
MEGAN NEFF: And it's permanent.
PATRICK CASALE: And it's permanent, and it's framed in the way from the psychologist of like, "And you're going to need to constantly have adaptation to be able to get through life, because of how challenging life is going to be." And I'm thinking in my head, "I'm 34 years old. Life has already been fucking challenging, it hasn't changed."
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: So, yeah, I didn't have that really profound moment that your daughter had where it was like, "Yeah, but I'm still just me." And other people told me that like my wife, and some close friends were like, "But you're still you. Like, it doesn't change anything." And I was like, "But I think it changes everything, actually. For me. It changes everything."
MEGAN NEFF: Yeah, yeah, totally. And when you say it changes everything were you thinking future?
PATRICK CASALE: Yeah, I think it was all about the future and seeing everything through this autistic lens now. And then I do this thing. And I don't know if you are, you know, guilty of this to some degree too, but starting to make associations of everything about like, is it because I'm autistic? Is this because it's my social? Everything.
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: So, it's an been an interesting journey. But I would say that it has given me permission once I've moved through the acceptance stage of who I am, and the identity, and the struggles that I experienced, that it has given me permission to just feel more comfortable in who I am too.
And I'm sure, you know, we can have a episode on unmasking and masking at some point in time. But it almost allowed me to start unmasking more, because I started to ask for what I needed, and state how I was feeling, and why I was doing something. Because, you know, we get this societal pressure to show up a certain way, socialize a certain way, communicate a certain way. And instead, I was just like, "Fuck this, that's not who I am. And I can't do it anymore." Because it feels like that pressure is just building, and building, and building, and it just feels insurmountable at the end of the day.
MEGAN NEFF: Okay, I'm having associations. I'm not sure it's going to make sense. But this idea of you feeling more comfortable, and then, grief, I kind of wonder if they're the flip side of the same coin, because I definitely experienced, like, I became more aware of my social awkwardness after my diagnosis. I think I always knew I was like intellectual and like, would be kind of overly academic in my conversation with people, and then, I could be awkward, but I think I intentionally didn't focus too much on that.
But then after my diagnosis, I realized how awkward I could be. And like, all of a sudden, these awkward moments was like, "Oh, that's because I'm autistic, not because I'm like, some like, intellectual academic." Like, that's a much nicer, you know, narrative. And so, there's grief with that.
And here's the thing that maybe won't totally tie in, but my thought is, what if part of the unmasking experience is we're grieving the burial of our masked self, in the sense that there's probably some fantasy that the mask that we're working so hard to hold on to is a real self, because we… like Pinocchio wanting to be a real boy. Like, wanting to be neurotypical. We're bearing that when we unmask. And there's grief in that.
And I think on the other side of that is the comfort, but it takes the grief. I was just talking to someone the other day about this about how part of my freedom socially has come from, I know, not all the time, but 90% of the time I accept I'm awkward. So, if I'm public speaking, or even in this podcast, if I have an awkward moment, or I can't say a word, I embrace that of like, oh, that's my ADHD brain combining things or that's my autism. But I had to grieve that I wasn't my mask before I could be comfortable embracing my social awkwardness and other quirks.
PATRICK CASALE: Yeah, I've never thought about it that way. But I think you're spot on. And I wonder if that feels really commonplace for adult-diagnosed folks? Like, where you've spent decades of your life trying to act or present a certain way and trying so fucking hard to not be awkward, not be weird, socialize, pick up on cues, make eye contact, all the things, and then there is that realization of, "That's not really who I am."
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: Then there's the piece of, "Will I ever be that person again?" Part for me that feels comforting is like the answer that I have when I ask myself that is like, I don't think I want to go back to that life.
MEGAN NEFF: Yeah, yeah. And this is where I think there's a lot of identity and relational shifts that happen when a later in life diagnosed person is diagnosed and starts unmasking. Because if we're burying an old part of us, a masked part of us, if that's who we've been in our key relationships, like, especially, if we're in partnerships and marriages, that's going to have a, like, significant impact of like, you're getting to re-know yourself, and then your partner and your family's really getting to know you. This would be interesting. I would be curious about separations and divorces, like the year or two after diagnosis for an adult.
PATRICK CASALE: Yeah, yeah, just because of who someone starts to embrace in terms of their identity. And whether or not the other partner can accept or if it even feels like the same person. And yeah that would be very interesting.
MEGAN NEFF: How did your wife, like, how was this journey for the two of you?
PATRICK CASALE: Yeah, I was going to say that it sounds like both of us are fortunate to have partners where they were pretty accepting of this experience. And that's how my wife was. And she was one of the groups of people in my life who's just like, I don't think she had a word for it. Maybe like, I remember calling her, I had gotten the results, I was in New York speaking at a conference and visiting family, which, you know, is a thing. And I just remember calling her and being like, really upset, and really emotional, which was not my baseline. And I just remember her saying, like, "Yeah, I don't think I had a word for this. But I think I knew this about you. Like, that's who you are. Like, this is how you act and this is how you interact. I know what you struggle with."
But, you know, I think that just goes to say that I've felt comfortable enough around her to be my true self and to be able to unmask pretty regularly. And I think that felt complicated, though. I think it felt like, I don't think it felt like dismissal, because that's not how it felt. But it was just simply like, "Yeah, this is just our lives." And I was like, "Yeah, but everything feels so much more complicated for me now."
And she's listened to other episodes I've done on autism diagnosis and how I experience social interactions and social gatherings. I know it can be upsetting, because she's from a South large black Southern family. [CROSSTALK 00:30:40], lots of family interaction, lots of gatherings, it's loud, I love them. It's challenging.
And my ideal holiday is like, let's get the fuck away from our families, and her ideal holidays are let's spend as much time with them as possible. So, it's been great to communicate, this is what I need and this is what I can endure. Because you have to, I have to, I don't want to generalize, I have to build up these, like, reserves of energy for our experience and situations that are going to be loud, are going to be chaotic, there's going to be a lot of stimulation. Like, I have to go into it knowing that I am going to leave it depleted and paying for it for days, if not weeks at a time.
So, it's still a work in progress. Andi think they're still figuring out, you know, how to best make partnership work. And you know, my wife is undiagnosed ADHD, but she's self-diagnosed herself. And I would agree with the diagnosis.
There's also communication misfires, like mishaps where I'm receiving information differently than she's putting it out to me or the communication is just missing, because of the way we interpret communication. And they're oftentimes where she'll say something, and I think I hear it, and I have to say, "What did you say?" And she's like, "See, you're not listening again." It's just about processing it.
So, still work in progress, but happily able to say that at least I know that there isn't shame or judgment here. And that feels really supportive. What about you? You know, you mentioned you kind of knew while going through your daughter's journey.
MEGAN NEFF: Yeah, I mean, the first time I brought it up to Luke he was like, "That doesn't sound right, because I'm the one who's always craving like emotional intensity, and I'm the therapist." And then as I was doing more research and like, kind of unpacking, like, okay, here's what I found, here's my thinking, he was like, "Actually, that makes a lot of sense."
We met in college. He was like, "You know I was drawn to how direct you are." He comes from a more like, indirect culture and family. And so, he's like, "Yeah, I think I was drawn to how direct you are. But at times, I did think it was kind of strange, like how direct you are." But it's also I think, part of what he found attractive about me back then. And so, it was interesting even to review our history of what he was drawn to about me, a lot of what he was drawn to about me like my intellectualism, my direct nature, was very passionate, as you can imagine.
At the time, gosh, this could be a whole episode. So, my husband and I both grew up fundamentalist. Neither of us are in that tradition at all anymore. But I channeled a lot of my passion and direct nature toward Jesus, which was a socially acceptable thing to do as a fundamentalist girl. It was the only way to be a direct girl. And I would still get in trouble for being too direct, but it was all in the name of like this kind of social justice Jesus. And so, I think that was part of how he was experiencing my directness.
But yeah, so I think for him it helped answer things. I think it'd be interesting to ask him, I think, there's probably a similar grief and relief of even things like, you know, when he'd come up and touch me I would shiver physically. And I think we're both confused by that of am I rejecting it? Like, why am I rejecting his touch? And I think for him to have a narrative of, "Oh, unexpected touch." It's not me that she's rejecting, it's unexpected touch. Like, I think little things like that. And actually, that's not a little thing, touch is a big thing in a marriage, were really helpful for him.
But then again, there's grief of, I think there are things that he would probably enjoy having in a marriage that we don't have and probably won't ever have, like, the flirtatious banter, the impromptu touch. Like, there are things…. and if anything, I feel like I've been trying to give him permission of like, you know, you can grieve this too, because I'm doing my grief around it.
PATRICK CASALE: Yeah, there's so many layers to this. And I can relate with the impromptu unexpected touch too, because my wife, Arielle will say the same thing. Like, "You shiver when I touch you." Or like, I think she's somewhat gotten more accepting of that. But like you just said, there's still got to be that grief of like, this is not something that can really be sustainable in our relationship and it's not something that I can provide or ever just get comfortable with. Like, that's just not something that can happen. So, yeah, it's really layered.
And I'll take it a step further, you know, with diagnosis stories, like, family members too, when they when you start to talk about it openly and come out, and just announce, or talk with people about your diagnosis, or your experience, or you might even start reflecting on your childhood experiences more often, because you're starting to put the associations together. And I've never talked about it with my dad. Like, we haven't had a single conversation that's involved or included the word autism whatsoever. I know he sees my podcast, I know he sees my stuff. So, never have we talked about-
MEGAN NEFF: So, he knows, but it's not talked about.
PATRICK CASALE: Yeah, which is-
MEGAN NEFF: Oh, interesting.
PATRICK CASALE: …which is most of everything in our dynamic. But my mom, on the other hand, who is a retired therapist was like, centering it around her and her parenting, "What did I miss? How did I miss this? "Like, "No, I don't think this could be accurate. No, I didn't notice this." And I'm like, "I'm not asking you for any of this right now. You know, like, it's not what I need from you, is how this makes you feel in terms of your parenting or lack thereof."
So, it's interesting to see how people receive information about something that is life-changing, because it's different. And it just shows up in different ways. And it can show up for their grief, or their own frustration, or their own ableism, or whatever's happening behind the scenes, but really is a complicated, complicated subject. And I can see why a lot of people don't want to pursue diagnosis, too.
MEGAN NEFF: Oh, absolutely, absolutely. And I think complicating it is, you know, autism is so genetic that, typically, when you're like, disclosing a diagnosis there's typically implications for some of the people you're communicating that to. And so, I think that adds another layer of complication as well, because either you seem totally normal to them, because the things you're experiencing they've always experienced. But also, there can be really strong internalized ableism when we're undiagnosed and older, and gone through our life and diagnosed. And so, I think all of that can get stirred up unconsciously and consciously, for the family members that are being told this. I mean, yeah, it is self-disclosure and family is really complicated really quickly.
PATRICK CASALE: Yep, yep. And that association, you know, genetically to say then, there can be so much internalized shame to any sort of diagnosis, not just in autism, ADHD diagnosis, but whenever we're talking about any condition, disabling condition, especially, people have their own histories and just lived experiences with how they feel about certain terminology too. And I know my association. You know, when I got diagnosed was I used to work in some group homes for people with developmental disabilities, intellectual developmental disabilities in New York when I was getting out of college. And my immediate association was like, "Yeah, but like, I don't struggle with any of these things." Which is my own ableism showing up at that time. But that was my first association when hearing like, "You're autistic?" We can have a whole… and I think we have this on the list a whole conversation about how could you be autistic because of A, B, C, D, E, F & G and you're too, "High functioning for that label." Which I hate that fucking label too.
MEGAN NEFF: Yeah, yeah, yeah. I think I've maybe shared this story with you before. So, maybe five years before identification, first year in the doctoral program, I was taking the MCMI, which is a common personality assessment, and it gives you a printout of future like diagnoses to look into further. And I think there're maybe two on my printout, autism spectrum disorder, and then I actually can't remember the other one.
And I remember the moment of looking at that and being like, "What the hell? Like, no way." And exactly what you're saying, like, a ton of ableist associations came to my mind in that moment of like, "There's no way that's me." And sometimes it's helpful for me to go back and remember that moment, because I have done so much deconstruction, that I think I cannot have as much patience for people who are earlier in their journey of addressing ableism. So, being able to point back to be like, "Oh, my gosh, there was so much ableism in me that was showing up in that moment." It's helpful for me to be able to kind of access empathy for other people who are newer to this journey.
PATRICK CASALE: Yeah, absolutely. I mean, this is a journey that even as a mental health worker, and, you know, I'm still learning all the time. Hell, I'm still learning [CROSSTALK 00:41:54].
MEGAN NEFF: Oh, yeah. I still have ableism pop up left and right. Yeah, yeah.
PATRICK CASALE: Because it's just so deeply rooted and conditioned, in essence, to society, too, and doing the work to deconstruct is crucial, but that doesn't mean that there are not moments where I'm like, "I need to walk that back." Or like, "That's not the phrase I wanted to use there and I need to really work on, you know, my vocabulary, and wording too." And I think it's just also acknowledging that too, and not just [INDISCERNIBLE 00:42:27]-
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: …putting it or scraping it under the rug, you know, but…
MEGAN NEFF: Yeah, or even like who's included in the conversations. Like, I just did a webinar on alexithymia last week. And as I was reviewing the slides, I was like, I was seeing my bias of, I'm really primarily speaking about autistic people and ADHD people who don't have co-occurring intellectual disabilities and who are speaking, partly, because the research on alexithymia is geared toward that population, but partly because of my own bias. And because that's the world I subjectively know, it's primarily the world I work in. But it was definitely a moment of like, I've got a lot to do to learn and incorporate, because I'm filtering a lot of the research and resources I'm engaging with through this bias.
PATRICK CASALE: For sure, it's a great point. I think it's definitely worthy of a probably more conversation as we go. And you're heavy in the research side, too, and the clinical side, and I think it's important for us to just continue to have these conversations and address them as well. And, heavy stuff.
MEGAN NEFF: Yeah, yeah. I don't know if I'm reading you right, but it looks… are you trying to find a natural way to segue to a conclusion, but also, we've been talking about heavy stuff. So, are you kind of like, oh, fuck, like, okay, we've talked about heavy stuff now we have to transition to ending. Is that what's happening for you right now?
PATRICK CASALE: I told you that if we recorded routinely that we'd start picking up on each other's like, tales even more than we already do. Yeah, absolutely. I'm like, I'm very hyper-aware. We talked about my internal clock last week about like, Hey, we're getting close to time. Like, we've got stuff that we have to do at the next hour. And I'm also thinking, "Damn this is heavy." And I think every single one of these conversations is probably going to feel similarly. And then how do we wrap that up?
MEGAN NEFF: Yeah, yeah. Like, the energy put in social transitions. One of the metaphors I used early with my therapist is I feel like I don't have social ligaments, like the things that help you be flexible, so much energy when we need to, like, socially transition. So yeah, like that transition of, okay, we're kind of in a heavy space. Now, we have to do our awkward goodbye. That takes a lot of energy.
PATRICK CASALE: It does. And you know, I'm trying to be aware of where you're at too, energy-wise. And I'm like, I don't want to transition if we're not ready to transition. But I like that, the feeling of like [CROSSTALK 00:45:22]-
MEGAN NEFF: …talk about it, instead of like, trying to read it's like, I like that we're having a conversation about what was happening, instead of trying to, like, read nonverbals and…
PATRICK CASALE: Absolutely. So, I'm grateful for you for naming that. And that is where we are going to transition, because we're going to have a lot more of these conversations too. And I think we want to hear from those of you listening about your stories and about your diagnosis journey so that we can be there alongside you too, and just provide resources as well. And I hope this felt supportive and affirmative. And, you know, just sharing a little glimpse about who Megan and I are and how we've gotten to where we are today. I think it's a really good look into that window for sure.
So, I appreciate everyone listening and I'm struggling right now. We are going to have new episodes coming out every single week of the Divergent Conversations Podcast on all major platforms. You can like, download, subscribe, and share. Megan, you want to add anything before we go?
MEGAN NEFF: Nope.
PATRICK CASALE: All right, then. Thanks for listening. Goodbye.