Divergent Conversations

Dr. Megan Neff and Patrick Casale are two neurodivergent therapists in a neurotypical world. During this podcast, they’ll talk about their own personal experiences as Autistic-ADHDers. They will reflect on their lived experience as AuDHD mental health professionals, and entrepreneurs, as well as offer clinical guidance, and support. Episodes will be conversational in nature, and they’ll interview other ND Folx to amplify the voices of other neurodivergent advocates and individuals as they share their authentic stories. New episodes will come out weekly, on all major platforms. Megan told Patrick, ”I’ll bring the chaos, You organize it.” This perfectly sums up their working relationship and friendship. Reflections of two neurodivergent clinicians. Raw, Vulnerable, Affirmative As Hell.

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5 days ago

Statistically, 70% of Autistic individuals identify as non-heterosexual, and genderqueer people are 3 to 6 times more likely to be diagnosed as Autistic than cisgender adults.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Rebecca Minor, MSW, LICSW, a gender expansive therapist and advocate in the neuroqueer space, about genderqueer identity and neuroqueer identity—what they are, how they intersect, and how they are perceived versus present in society, relationships, and the mental health community.
Top 3 reasons to listen to the entire episode:
Understand what is genderqueer identity and neuroqueer identity, as well as delve into the misconceptions surrounding them.
See how neurodivergence and queerness overlap for both Autism and ADHD, including what studies have been done around this.
Understand the importance of self-disclosure in therapy, particularly for marginalized communities with intersectional identities, and how it can build connection and community, as well as offer emotional relief for clients.
There is still a lot to learn and unpack about queerness and neurodivergence, but research suggests a strong connection between neurodivergence and gender identity. We hope to shed light, give valuable insights, and broaden your understanding of these diverse identities.
More about Rebecca:
Rebecca Minor, MSW, LICSW is a neuroqueer femme, clinician, consultant, and educator specializing in the intersection of trauma, gender, and sexuality. As a Gender Specialist, Rebecca partners with trans and gender nonconforming youth through their journey of becoming, and is a guide to their parents in affirming it. Rebecca is part-time faculty at Boston University School of Social work and always works through a lens that is neurodiversity-affirming, trauma-informed, and resilience-oriented. In addition to her clinical work, Rebecca has provided cultural humility training and consultation to organizations, schools, and businesses for the past decade. You can follow her on Instagram, hire her for parent coaching, or check out her blog, and free guides and course for parents and caregivers!
Rebecca’s Website: www.genderspecialist.com 
Work with Rebecca: https://www.genderspecialist.com/coaching  
Rebecca’s Instagram: http://instagram.com/gender.specialist  
Rebecca’s Facebook: https://www.facebook.com/RebeccaMinorLICSW 
Neurodivergent Insights Masterclass Series: Exploring Neuroqueer Identities by Dr. Megan Anna Neff and Rebecca Minor: https://learn.neurodivergentinsights.com/exploring-neuroqueer-identities/
Neurodivergent Insights Infographic: https://neurodivergentinsights.com/autism-infographics/trans-autism
MEGAN NEFF: So, over the last two weeks we have been…
PATRICK CASALE: Did you forget your settings [INDISCERNIBLE 00:00:12] because-
MEGAN NEFF: [CROSSTALK 00:00:13] no, it takes me a second, Patrick. I don't have my process in this video. We should keep that in.
Okay, so, over the last few weeks, we've been exploring autistic identity and neurodivergent identity. And I can't think of a better guest to have on today than Rebecca Minor, who is neuro queer and does a lot in the neuro queer space. And so, we're going to dive a little bit deeper into talking about the intersection of queerness and neurodivergence, broadening it to autistic and ADHD identities.
Okay, Rebecca, I'm going to try to introduce you. I know I'm not going to do it justice. But here we go. So, we met on Instagram, which is a weird thing to say. I don't meet people on Instagram anymore. We met before-
MEGAN NEFF: Yeah, I'm too, [CROSSTALK 00:01:04] and I get so overwhelmed. So, I'm so glad I met you like when I had a small following and when I actually spent time in the app because I've loved… How did we meet? I don't even know how we met. But I love that we did. And we've developed what I would say is a really wonderful friendship. And we've presented together on your neuro queerness. You are a gender-expansive therapist, but if I'm tracking right, you're kind of doing less clinical work, more speaking, more advocacy, lots of trainings. So, gender expansiveness in teens, this is your jam. Do I have that right?
REBECCA MINOR: You do, yeah, yeah. I'm still seeing too many clients for how much I'm doing the other things. But yes, I am.
MEGAN NEFF: Right? I am not surprised by that.
REBECCA MINOR: So, welcome.
MEGAN NEFF: What would you like to add about, like just giving our listeners some context for who you are.
REBECCA MINOR: So, I am a social worker by training. Some people care about that. I have been in private practice for about five years with a variety of settings, different experiences prior to that. And I work primarily with queer and trans youth and their journey of becoming. And most recently, I'm spending a bulk of my time working with parents and caregivers to really support them in being able to better support young people.
MEGAN NEFF: I love that. I've been so encouraged by how many parents are really showing up and they're doing their work to show up for their kids. And I love that you're coming alongside parents in that journey because it's a lot to unlearn, and then relearn, and just to address like, the fear that comes with parenting a queer kid.
REBECCA MINOR: You nailed that, yeah. And that's so often what it is, right? It's just like, because of a lack of information there's a lot of fear, and concern, and feeling like they should have all the answers. And so, then, there's a shutdown, right? And it's like not because they don't care, not because they don't want to support their kid, but they're stuck. And so, that shift can happen really quickly, which is also like an incredibly meaningful piece of the work that feels so different than sometimes longer-term clinical work or trauma-focused work that I've done, which goes on and on. This is much more like, "We can take care of this."
MEGAN NEFF: I like that kind of work. It's funny, I work long term as a therapist, but it can be really nice to then have those cases where it's like, "Oh, we can actually address this in five sessions and get you on your way."
REBECCA MINOR: Mm-hmm (affirmative.)
MEGAN NEFF: Which is very, like, I feel like a heretical thing to say when you come from the psychodynamic tradition, but I actually really like having a balance of the two, yeah.
MEGAN NEFF: So, I think how we met is kind of interesting because it goes back to this identity thing. So, I was working in the like, autism, ADHD space, primarily. You were working in the gender-expansive space primarily. I started seeing like, oh my gosh, there's so much overlap with queerness, and specifically, gender queerness among neurodivergent people. So, I started learning about queerness. You on the other hand, do you want to share what you were discovering in your practice?
REBECCA MINOR: Yeah, and I was going to say, I think I do remember how we met, which is mostly that I was like, "Hello, am I autistic?" Which is probably how you meet a lot of people. But I started noticing I was like, wait a minute, if I really sit down and think about it started with one client, right? Who came in and had seen something online and was like, "I think I might be autistic." And I was like, "That's markedly different, like what you're describing is markedly different than what my training had been."
And like in high school, I had volunteered in what? At that point, we were calling the special needs classroom and worked with autistic folks. And you know, the tropes that I had understood about that were so different than the clients I was working with. But once I started peeling back some of the layers and reading more of the current research, I was like, "Oh, oh, are all of my clients neurodivergent and I missed it?" Like, and so, it really set off this thing for me where I got hyper fixated and was researching like crazy, and taking all the self-measures, and trying to figure out not only what was going on for all of my clients, but also what was going on for me.
And so, I think that's when we started talking because I was like, this is just a fascinating clinical thing that I'm seeing. And also, I'm not clearly fitting into one of these categories, and I love your Venn diagrams for that reason because I'm like, you know, I've got a little bit of various things and the visuals made so much sense to my brain.
MEGAN NEFF: Yeah, yeah.
MEGAN NEFF: I love that. Yeah, we were having parallel process. And then, for me, in my process, I was unpacking queer identities, which for me came after the autism discovery, which you were further along in that journey. So, it was a really cool friendship where both clinically, but personally, we were kind of exploring, like, the other specialty which we had been led to by our home base… Okay, I have a visual of what I'm trying to say, but I'm not putting into words well. But yeah, I think that's, yeah, that we were able to kind of both explore each other's specialty in conversation.
REBECCA MINOR: Yeah. And that's when we were like, "Wait, why aren't people talking about this more?" And then I think that's when we got the idea for starting that, like, ask our followers questions about that intersection.
MEGAN NEFF: Yeah, yeah, yeah. And I think that'd be a helpful thing to get into, but we like to anchor in lived experience here. So, can you share a little bit more about your own neural queerness and your journey around that, or whatever you want to share around that?
REBECCA MINOR: Sure. So, I think one of, kind of, the place that I've comfortably settled is in using neuro queer as a label identity-wise. I'd gotten comfortable with the concept of queerness and that felt good to me, then I became aware of how inextricably linked I think my queerness is to my neurodivergence. And so, it just felt like it made so much sense and it's easier to say. That's one thing.
But I did go through a long process, and I'm still navigating the, like, "What exactly is going on here?" In terms of my own brain. I have a trauma history and a history of anxiety. And so, those things can confuse some of the, you know, they can present in some similar ways. And so, it's been a journey of kind of parsing out like, what's potentially autism? What's potentially ADHD? What's potentially trauma or anxiety? Or this or that? Or, you know, being burned out? Or just the combination of like being alive during a pandemic.
So, yeah, it's been interesting. At times, it's been pretty difficult and emotional. And you've been so lovely and gentle with me, which I appreciate, when I have weird questions, or I'm like, "Does this mean this?" And you're like, "Well, not always." But yeah, so I feel kind of like, I definitely meet criteria for ADHD, that feels solid. And I think-
MEGAN NEFF: Thank you too.
REBECCA MINOR: And I was going to say anyone in my life would also concur. And then I have like a sprinkling of other things that one might consider to be like-
MEGAN NEFF: I call it the neurodivergent potpourri bag.
REBECCA MINOR: Yes, yes. That's me. Got some family history in there. So, yeah, it's been interesting, and I think professionally, it's always a weird thing to navigate that like, personal/professional line of how much do I share? How much do I not share? Is it okay for me to talk about these different things if I don't feel like I can use the hashtag actually autistic because I don't have a diagnosis? Do I need formal diagnosis? And the thoughts go on, you know? So, that's kind of where I am. I'm happy to talk about it, it's a fine thing to say.
MEGAN NEFF: And yes, I think I know that about you from having seen you in public spaces. And that's something I like about your presentation style is how openly you talk about this.
I'm kind of diverging from where I initially thought we might go. And I do want to get back to talking about gender queerness. But I think this will wrap into it. Part of what you're talking about is being in process of your own identity as a clinician, but also, as a public clinician, I didn't mention this, but you also have a platform on Instagram, and you create content as well. I heard on a blog post a couple years ago, that's probably been the one that gets the most feedback from clinicians, and it's about being an identity-based practitioner, when our practice is based on our identity in the sense of, I am an autistic therapist, therefore, autistic clients come to me.
In our training, we're taught so much about like, blank slate, don't disclose. I'm just curious, both Patrick and Rebecca, your thoughts around exploring our identity while you're seeing clients. And then, also, while doing it publicly not just privately because there's a lot there.
PATRICK CASALE: See, we're doing a good job today. We're reading each other's facial expressions and all those things. I love that you just asked that question. I just want to also apologize for my voice today to everyone listening, it's struggling. I actually just had this conversation in our team meeting with our staff about using identity-based language, and especially, if they feel safe enough to do so because we are a practice that specializes in supporting the neurodivergent and queer communities in Western North Carolina.
I know we've talked about this, Megan, at length, but I do think it's nuanced. We always say that. I feel like that's going to just become incorporated into our fucking conversations on this podcast is the word nuance. But it is nuanced, and it is complex, and I think it's also advocacy at its truest form for our clients who are so desperately trying to find a landing spot, a place where they can feel safe and comfortable, a place where they don't have to, you know, explain everything over again, maybe their circumstances are different, but they don't have to say or explain everything in a clinical interview like they typically would. And I just think it's so powerful, and so much more humanizing when we use identity-based language, when we are able to show up in those spaces.
And I also think it's also really complicated, especially, for those of us who have audiences who have followings, as we're also unpacking our own identities, as we're also unpacking our own neurodivergent journeys. Like, for those of us who were diagnosed in adulthood, sometimes you get it wrong. And sometimes you're also unpacking your own internalized ableism that's existed throughout most of your life. And I think then you walk it back, and you learn, and you try, and you try again, and you continuously show up even when you get it wrong. And I think that's the most important piece here, for those of us who are showing up in public spaces.
But again, I just cannot say enough how much I think that speaking out openly, and disclosing, and using identity-based language is just so important in terms of advocacy across the board for people who just don't feel safe enough to be able to do the same things that we can do.
MEGAN NEFF: It certainly makes the countertransference more hot, is what I've noticed. Like, when your client is working through things that you're also working through.
REBECCA MINOR: That's true.
MEGAN NEFF: And Rebecca, I think you've experienced some of that or am I projecting?
REBECCA MINOR: No, no, that's totally fine. I've definitely experienced that because, in real-time, it was like I was working with clients who were like, "Wait, is this, you know, what's been going on all these years?" And it explains all these things. And like, there's the relief, and the like aha of that. But there's also the grief and the pain that comes with that, and holding that for clients in session, but also, navigating that myself, it's a lot.
And then, I also think about the parent audience, which I also have because I work with young people, right? So, like my teenage clients will be the first to tell you about my various neurodivergent tendencies because they have no problem with this or calling me out on them.
But with parents, then it raises those questions of like, "Will they doubt my competency? Like, what does that mean?" And it was the same thing for me as coming out as queer of like, "Will parents then think I'm like luring their children into this lifestyle?" Which is not a thing, but like, is a concern. And so, yeah, it's the potpourri.
MEGAN NEFF: It's going to be in the name of our episode, potpourri.
PATRICK CASALE: It's definitely going to be in the description somewhere, probably on the website, too. I think the grief relief process is something we talk about a lot. And I've experienced, you know, pretty often, especially, when I was formally diagnosed at 35. I'm 37 now, it's been a year and a half journey. But I think you're right, the countertransference is really intensified, and simultaneously, the relief for the client has gone up exponentially. So, I think both of those things, as my therapist thing is always like, "Both can be true." Those are both true. And like, the ability for the client to…
I also am someone who speaks openly about a former gambling addiction. When I've talked about that with clients, you see the immediate relief of like, "Oh, shit, someone gets it. Like, I'm not alone in this." And that has always been my driving force for disclosure. It's never been about like, what does it do for me? I always want to throw that asterisk in there for any clinicians who want to be like, "That's ethically not sound. Like, we don't disclose."
But when we are talking about people who are represented within marginalized communities with intersectional identities, then I think its disclosure is that much more important of a therapeutic intervention and I think that when you start to realize like, that's what it's about, it's not about what it does for my sense of self. It's more about like, what does it do for the person who feels like there is no glimmer of hope? Or that things will never change or be different?
REBECCA MINOR: Yes, yeah. And that's where that question of like, who is it for? It needs to be the guiding principle. One other thing you said earlier that I just didn't want to leave out was, oh, there goes brain processing, it was about getting it wrong. I was terrified of getting it wrong. And I still am, right? Like, there's still a part of me that's like, "Well, I don't know. Like, according to the data." And, you know, but in periods when I've been more burned out and gone back, and retaken some of the assessments, I'm like, "Oh, those numbers look a little different." But still, yeah, it's a thing.
MEGAN NEFF: We're going to talk about RSD soon. And I think getting it wrong, well, first of all getting it wrong because like, we are all very justice-oriented. So, I think, especially, when we get it wrong for our communities and for the most marginalized communities, like I know all of us feel that deeply. And then, also, the, like, aspect of RSD.
And I just read, like, social justice RSD. I hadn't heard that term before, but also, like a strong reaction to injustice. But because we've all had private conversations around this I know how much we care about not getting it wrong. And you can't be in public space and not step in it. Like, and it's good, right? It means we're… well, it's not good, but it's a sign that we are learning.
PATRICK CASALE: And there's a lot of unpacking to do even now and continuously. And I think that is important no matter what. But I think it's so important when you do have public space that you take up because people are following you, people are listening to you, people are sharing your stuff. So, I think there is even, it feels like almost this pressure to get it right. And that, for me is a struggle sometimes because then I get into like perfectionism mode. And I'm like, "I have to get it right. I can't post this because this could get picked apart in 100 different ways."
So, then I have to step back and think like, okay, what is the purpose of what I'm creating and posting because if it's informative, if it's supposed to be supportive, encouraging, etc, then I want to put it out there regardless of the fact that someone may say, "Next time you do this you should probably use this for vernacular, or this word, or this verbiage.'
And that's okay because then it's like, "Okay, I get that and I will do that the next time." But I don't want that to take away from the message either that can often be missed if we are unwilling to put ourselves out there. And that's why we all have platforms because we're willing to put ourselves out there and talk about stuff that a lot of people shy away from.
REBECCA MINOR: Absolutely, yeah, and I think the more self-disclosure I've done online, in appropriate and boundaried ways, for the therapists listening, has, like you said, right? Has shocked me in its traction, right? It's the stuff where I'm like, "Oh, this is what the people want." That gets like nothing. But when I'm like, "Look, I'm messy just like you." People are like, "Awesome." And it's like shared all over the place, right?
Or recently, in terms of unpacking identity and Megan Anna, you and I have talked about this as the reality of moving through the world as a queer person who holds a lot of privilege because I'm married to a cis man and how navigating that has been tricky and interesting. And so, I was so afraid of sharing about that and losing some of my queer followers who would be like, "You're another one of those, like next." And I forgot, or, you know, wasn't prioritizing the thousands of people who have reached out, and liked, and commented when I've shared like, "Hey, this is actually what my life looks like."
And just in the last month I have like, built this small but growing community of women who are in straight passing relationships and navigating their queerness. And it's just been really fascinating to see. But I think I absolutely get stuck in that feedback loop of like, I was doing it yesterday with a post where I was like, writing about protected time. And then I was like, all I could hear was people being like, "Oh, nice that you have protected time, what a privilege?" You know, and then I archived the post because I was like, "Urrgh." So, yeah, it's…
MEGAN NEFF: Yeah, I love that. I've definitely been there, done that. First of all, I just want to say, I love how you have, like, talked so openly about the complexity around queer identity. And how, yeah, like our marriage setup or partnership setup doesn't make an identity. And that was actually really empowering for me.
I also remember, we talked the weekend before you made the post of like, kind of, revealing that you were married to a cis man. And I remember the anxiety of that. And I totally understood that. But I love how you have come into that space. That's actually partly what gave me permission because it was that question of like, okay, I am queer, our family is very queer as like, but I'm also like, not in a queer partnership. So, what do I do with that?
And so, the work you've done around identity, I think, is so helpful because identity is so much bigger than the structure of our partnerships.
REBECCA MINOR: Absolutely. Yeah, thank you.
MEGAN NEFF: Should we shift to talk about identity and kind of gender queer identity and neuro queer identity? I know that we've done a lot of work at that intersection. And I wonder if it'd be helpful to do some of, like, a bird's eye view of some of the things that we discovered when we were asking our audience and what we've presented on, the speaker time to shift.
REBECCA MINOR: Sounds good to me.
MEGAN NEFF: Rebecca, do you want to do the bird eye view? Like…
REBECCA MINOR: Oh, I feel like you're better at that?
MEGAN NEFF: …intersection. What did you say?
REBECCA MINOR: I said, "Oh, I feel like you're better at that."
MEGAN NEFF: Okay, I will try and then, you will [CROSSTALK 00:23:30].
MEGAN NEFF: Yeah, so, okay. So, I mean, we know that there's a huge overlap of queerness and neurodivergence, both for autism and ADHD. It's a little bit more pronounced in autism than ADHD. So, first of all, talking about sexual queerness. There's one study, and as a disclaimer, it was a smaller study, but the study found that 70% of autistic people identified as non-heterosexual. And the language non-heterosexual they use that because it also included people who were asexual and [INDISCERNIBLE 00:24:12]. But essentially, 70% identified as some form of queer. That's huge.
The research also found it's more common among people assigned female at birth. So, cis autistic men. So, people like you, Patrick, are more likely to identify as heteronormative and heterosexual than everyone else. So, this gets, I think even more pronounced when we start looking at gender queerness, and particularly, autism, but also, ADHD. There's a pretty big study done in 2021 that found that gender queer people were three to six times more likely to be diagnosed as autistic than cisgender adults. What's really interesting about that statistic is that only include people who are medically diagnosed, and so, we would suspect that number would actually be significantly higher.
Other studies have found that autistic children are like four times more likely than allistic children to be genderqueer. There's other studies out there, I'll link the infographic in our podcast so people can go see the research.
But essentially, it's a significant overlap between gender queerness and neurodivergence, particularly, autism and ADHD. We also see similar rates in ADHD not quite as high but also, higher than in neurotypical children and adults. That's the bird eye view. How did I do Rebecca?
REBECCA MINOR: That was good. It just made me think do you have like a gut instinct as to why that is?
Oh, gosh, I get that question so often. And I've heard some really interesting speculations. I think there are some studies around like, neuroanatomy, but I don't know those well enough to try and say at the moment. I think the idea of like, how we relate to social norms, I think is part of it. I think we're much more, you know, social norms are constructs, and I think we see them as constructs. I think-
REBECCA MINOR: That's always been my thought, too.
MEGAN NEFF: Yeah. So, I think we know they're there. But like I described as like, I analytically know they're there. I think RSD people experience them. Like, they experience the social norms as real things. So, I think we're much more likely to queer in the sense of query and social norms and explore.
I heard a really interesting theory, recently, about sensory. Because of heightened sensory someone was experiencing gender dysphoria, particularly. That would be a more intense experience because of the body experience around that, which, that was really interesting to me as well. There's a few other kind of ideas out there, but I don't know, what about you? What do you make of the overlap?
REBECCA MINOR: Well, I just, I mean, so often I think about gender, the whole concept of the binary as being its own construct, and if you're not led to constructs and you feel somewhat of a freedom to move in or out of them, it might give people an opportunity to consider possibility, right? Like, so often, I feel like when I work with people who are cisgender and allistic they've never considered any other possibilities around their gender. They're just like, "Oh, well, this is what I got handed and this is what I still am."
And like, it's never been called into question, not even know, like, passing thought. Whereas, you know, obviously, I spend a bulk of my time talking with trans and gender-expansive folks, but I mean, I talk to anyone who will talk to me about gender, which also made me be like, "Oh, is that a special interest? Are people a special interest?" Like, because I've been so, so social my whole life. But anyway, sidebar.
MEGAN NEFF: For sure autistics exist.
REBECCA MINOR: And I know you told me that. And I still need to read that like, lipstick… I don't remember the name of that book, but like outgoing one.
MEGAN NEFF: Yes, I also forget the name of the book. But yeah, she is like a very extroverted autistic.
REBECCA MINOR: Yeah. But I think just being even curious enough to consider otherwise feels more available to folks who are neurodivergent. Like, they're like, "Well, I just want to see what's over here, or like, try this on, and see how that feels." And just a willingness to play, I think that feels different.
MEGAN NEFF: I love that, a willingness to play. There's the soundbite now that… I'm looking at you Patrick like you maybe have a thought, but I can't tell if you do.
PATRICK CASALE: I like that we all… it feels like this is set up, though, like everyone has a thought at the same time was what my experience was just happening. Like, I was looking at Megan's face, I was looking at your face, Rebecca, and I was also thinking. So, I didn't have words to put into my thoughts. I honestly agree with everything you're saying. So, I'm just nodding, and like thinking, and just thinking about things differently because as someone who honestly, has never really questioned my gender or identity, honestly, I always am curious about that in general, because I'm like, I'm just processing what you're both saying right now. I'm like, this was Megan, your stat about what you say 70% of cishet autistic men don't ever question or did I get that wrong?
MEGAN NEFF: Oh, it's 70% of autistic people identified as non-heterosexual. But like the most likely autistic population to identify as heterosexual are cis men.
PATRICK CASALE: Yeah, that's what I was thinking about. And I was like, "Huh, this in interesting."
MEGAN NEFF: So, the autistic stereotype, yeah.
PATRICK CASALE: Sure, yeah. So, that's where my brain went. But then I was thinking, like, it makes a lot of sense about just playfulness and curiosity, and being willing to break out of construct, and just being like, "Yeah, this is fucking stupid. Like, who told us we were supposed to live this way?" I think that makes a lot of sense in all areas when I'm thinking about a lot of just neurodivergent people, in general.
REBECCA MINOR: Absolutely. And I think Megan Anna and I are great examples of the way in which that can happen and in various orders for folks, right? Like, a lot of times people will realize one of these things, and then it frees them up to realize another.
MEGAN NEFF: I did a story on my Instagram, but then the results didn't show. I don't think I am, like, enough tech savvy to try to do, like, polls on my Instagram stories and show results, which is ridiculous, but-
REBECCA MINOR: I can help you.
MEGAN NEFF: Thank you, I need help. But the poll I did was like if one identity discovery led to the other which identity came first? And so, was it the queer identity? And did that lead to a neurodivergent discovery or vice versa? And the results in the comments were really interesting. I really wish I knew how to show them better in a way that people could see them. But yeah, I see that all the time, where often discovery of one will open the door to the discovery of another.
PATRICK CASALE: Yeah, and I think that-
REBECCA MINOR: [CROSSTALK 00:33:02] language?
REBECCA MINOR: No, it's okay. I was saying I think that even about language and pronouns, right? Like, the idea that someone could use they/them pronouns doesn't often feel available to folks who feel really bound by linguistic rules, which can get really tricky for folks who are navigating gender expansive identity, and also, autistic, depending on kind of how their autism shows up, right? For some people, they're like, "I can dance around some of these rules." And other people are so bound by those rules. And so, it can get tricky.
PATRICK CASALE: Right, yeah. I agree with that. What I was thinking, Megan, about your poll, do you think that any of this has to do with the fact that regardless of which "identity" comes first, or is discovered first, that it just feels freeing to have it discovered and see the world through a completely different lens? Because so many of us, and I cannot speak for any of the queer identity perspective, but so many of us who are neurodivergent, who are seeking something all of our lives, and seeking like this landing place, and this place to just feel home, I'm using a lot of air quotes right now as if we don't record the video, feels freeing in a lot of ways. And I think that's just where my mind goes when you start to think about like, where does that one go, lead into another perspective, or identity, or realization, or aha moment?
REBECCA MINOR: I think that's a similar experience for folks who come out later in life too, of there's been this long-standing like, "Something's not quite fitting here. Like, why do I feel just a little bit different?" And you know, people who then in their 30s, 40s, but you know, whatever we're considering later in life diagnosed then recognize like, "Oh, maybe that's what it is."
And I think I see that fascinating. I'm fully side-baring now, so feel free to cut this. But I see that happening with people who are also recognizing… either finding out their autistic later because of their own child being diagnosed, and then having that aha, or for parents whose kids come out, and then they're like, "Oh, that's actually something that I never thought about for myself." And really kind of pull back the curtain on that and get to explore like, and that's where I see, whether it's people who are exploring their neurodivergence, or their gender identity, I see it as an opportunity for the whole family and everyone in their lives, really, to get curious about the ways in which that might be showing up for them too.
MEGAN NEFF: I have certainly lived that, where I think the first person to come out in my, like, extended family was one of my children at a youngish age. And then, like, that just kind of, yeah, it's like it opened up a conversation that wasn't a conversation before. And not just in our immediate family, but like beyond that.
And it makes me so proud of these kids who, like, are owning who they are, and then, like, empowering the adults to do that. And like, I'm cringing as I say that because it sounds kind of like parentified to be like, the kids are empowering the adults. But I also think there's like generational movements and pieces in there, where a lot of us just grew up, especially, if we grew up religious, in spaces where, like, it just, like, how comfortably my family, like, with our kids, we talk about queerness, and we talk about identity, and like the fact that from a young age, we never defaulted to like, "When you grow up and marry a man." It was like, "When you grow up and have a partner." Like, that just wasn't accessible to so many of us who are in our 30s, and 40s, and beyond.
REBECCA MINOR: Absolutely not. Yeah, and adding the religious piece is a whole other element of that, which you and I have talked about, too, of like, part of why I am so comfortable talking about gender and sexuality is I never got that messaging. Like, sex was talked about in a really positive, just normal, kind of, like, it's okay to mention it at the dinner table kind of attitude, which is baffling to other people.
And so, I think, yeah, there are real shifts happening generationally, which is like, what we really want to see, right? I feel like that's my, like, life's work is, is working towards that generational change where kids can be exactly who they are and we all need to catch up.
PATRICK CASALE: That is a really good point that you both made. But that's exactly what I was saying before in terms of advocacy and having an audience because when we're talking about movements, that's where this stuff comes from is advocacy efforts from people who are willing to show up and share their own stories.
And my brain is diverging because Rebecca, you mentioned something before about like, not wanting to post the messy side of life, but then those are the things people are always like, "Oh, yeah, that's exactly what I need." It's just because as people, I just think we're wired for connection, and we want relatability, and we want to know that we're not alone. So, that's the content, too. That's like, you throw something up there, you don't perfect it, and you're just like, yeah, take a glimpse at like what this is like for me on a day-to-day and people are like, "Holy shit, this is my life too."
MEGAN NEFF: And I think it adds a layer when we're therapists. I can't remember the name, but there's a New York Times bestseller a few years back now of a therapist who is maybe one of the first to like, the book is about her own mental health. And it was a really a breakthrough moment of like therapists talking about their imperfections because in traditional therapy, it's like you go to the therapist, they're supposed to have it all together, all figured out. But I think people are really responding to… it makes us more human as therapists if, you know, we also have messy kitchens, we also are in process around identities. Now, we know how to contain that, we now have boundaries so that like what's coming into that therapeutic space is intentional. But there's something really powerful that I've seen happening in the last five years, particularly, where therapists are becoming more humanized.
REBECCA MINOR: And I think it had to happen. Like, the model of the blank slate, like, barely says anything just like furiously takes notes therapist doesn't work for people. It certainly wouldn't work for my clients.
MEGAN NEFF: Particularly, not neurodivergent clients or many queer clients.
MEGAN NEFF: It doesn't create safety.
REBECCA MINOR: No. And now when I think about retention, I'm like, "Oh, no wonder people are still here." Because like, you can see what's all over my face all the time. Like, there's no… it was feedback I got in grad school, right? Like, you should tone it down. And like, the thing that the feedback I get from clients is like, it's so comforting to me because I always know what you're thinking, or how you're responding to something, or like that you're with me. And it's not intentional, it's just my face.
PATRICK CASALE: Yeah, if it wasn't your face it would be a lot of effort and energy into masking that expression or that reaction.
REBECCA MINOR: Right, right.
PATRICK CASALE: And I think clients, they really resonate with that of like, "Oh, my God." Like, my wife will sometimes tell me I need to fix my face because my reactions are my reactions. And she's like, "Don't react that way in this environment." I'm like, "Ooh."
But in the therapy room, it's really helpful, it's really therapeutic because like, it takes away from that guessing game that clients sometimes have to play of like, that [INDISCERNIBLE 00:41:24] the way I needed it to, "Are you taken aback by what I said? Are you uncomfortable with what I just told you?"
And I like the new era of psychotherapy that we're moving into a blank relatability because I strongly believe this. And I say this all the freaking time that relatability is accessibility. And I believe that wholeheartedly.
REBECCA MINOR: I like that.
PATRICK CASALE: And on our webpage for our group practice says like, "No head nodding, how does it make you feel? We're therapists here?" And like, we get so many calls from people who are like, "Yeah, you're our people." And my marketing person last year, when we were creating the website was like, "You're going to turn off a lot of clients who are uncomfortable with using the F-bomb and saying it this way." And I'm like, "Good, those are not our clients anyway, we don't want those people to call us."
REBECCA MINOR: Right, yeah, that's not your fit. Absolutely. I love that you say no head nodding, how does that make you feel? Because that's the thing, right? Like, that's why people don't want to go to therapy. I hated therapy, initially, when I was forced to go as a child. And like, that poor woman, she tried to have me do art therapy and I scribbled with a black marker all over a piece of paper and was like, [CROSSTALK 00:42:36]-
MEGAN NEFF: That's sassy. I love it.
REBECCA MINOR: Was very sassy. She called my mom in and was like, "I'm not sure that this is going to work."
PATRICK CASALE: We can't fix her. But what happened to me early on in similar environments is like, the sterile nature of like, how can I ever open up, and be myself, and feel comfortable enough to actually share what's happening for me if it's just sterile, and it's just head nodding, and there's no response.
And, you know, I just struggled with that so much growing up as someone who has been in and out of therapy since I was five, and just the reality and realization of like, you can be the best therapist in the world clinically, and use every technique and intervention under the sun, but if there's no relatability, and no ability to build relationship, rapport, and connection, I'm not even listening to you. Like, I'm already thinking about when I leave this place, I'm never coming back here. And that's just the reality.
REBECCA MINOR: Yeah. I just had a question pop into my head as you were sharing that and I don't know if it feels okay to go here or not. But again, feel free to skip this. But I just wonder what it was like for you having been in and out of therapy since five to not be diagnosed for another 30 years?
PATRICK CASALE: Well, to answer your first question first, which is, is it okay to go there? And we encourage all the divergent pathways on this podcast. So, absolutely. I think there's two answers here. I'm doing this [INDISCERNIBLE 00:44:12] Jesus.
But there are two answers, right? Like, there's the answer here of me sitting here today who can like zoom out, look at life, and be like, "Wow, that was really hard." And then there's the answer of like, if I can drop into that life at five and onwards, it was really hard, which is what made me seek out diagnosis because I kept, I've told Megan this a million times, I was seeking that like, "What the fuck is happening?" Like, why is this happening to me? Like, why do I feel every second of every day, of every experience, and every situation so intensely? Why is it so hard for me to connect? Like, all of the questions that we ask ourselves, that has been constant for 35 years of life?
So, I think it's also this… And I've said this publicly, too, and I know my parents listen to this podcast, but there's almost this, and I think, for a lot of people who are my age, and in this age group who were not diagnosed until later on in life were like, "What the hell is happening here? Like, where did this get missed?"
And my mom's response, initially, to my diagnosis was like, "Well, that wasn't my experience of how your childhood was. You were really social and you really do not stop centering, right? Like, let's make it more about what's happening today. Here's the information that I'm sharing with you." But that's what it was.
And my mom was an LCSW in private practice, like, how do these things get missed? And I think it's because my parents are divorced, have been divorced since I was five, very messy stuff. I spent a lot of time alone. A lot of times they'll see that I played soccer. I was like, that's what I was supposed to do. And that's just how reality was for me.
And I think to sum up your question, the answer is hard, but in different ways. Like, hard now cognitively, to think about it from a therapeutic perspective and as someone who's done a lot of work, and then, hard as like, "Damn, it was really hard just existing."
REBECCA MINOR: Yeah, yeah. Thank you for sharing that. I think, as part of my searching for answers, I went and reviewed some of my report cards. And was like, "Hello." Like, it felt so clear. It's like she's so chatty, like, really smart, getting stuff done, but like real peaks and valleys of like, gravely struggling in some subjects, and like, off the charts in others.
But again, there are just so many questions where I'm like, "Where were the grownups?" Like, and it's also what information they have, right? Like, I wasn't a boy who was obsessed with trans. Or I wasn't my sibling who was assigned male at birth, who did get an ADHD diagnosis. So, you know, there are a lot of factors at play.
But I just think about that, like, holding that reality of having been in various care settings for so long and still feeling like this didn't get picked up.
MEGAN NEFF: Diversion two now, but that reminds me… There's an interesting emotional experience that happens and I don't know your sibling, if this tracks, but an example of let's say one child has like level two or level three autism or what would be, I guess, I hear clinicians talk about like more severe ADHD. I don't obviously like that language, but like, more impacted, more evident ADHD, when that child gets diagnosed, the child that perhaps maybe they're level one autism, or maybe they internalize, that sibling often gets missed because so much of the resources is going to the child who's struggling more. Like, that's a unique experience as a sibling. And then when that sibling later in life discovers this identity, I have seen that be a really complex experience of like, the word misattunement comes to mind, like when you're asking Patrick about, yes, 30 years of therapy, especially, 30 years in misattunement when we're discovering that much of our life was happening in this context of misattunement, either from therapists or from our families, that's painful.
REBECCA MINOR: Yeah. And much like Patrick, I had, you know, the context of very messy divorce and a whole… You know, there were so many things happening, that it wasn't the focal point. And I was doing well in school. So, it just didn't really matter because there weren't, you know, and I didn't have behavioral issues besides being chatty.
MEGAN NEFF: Did you have mental health issues.
REBECCA MINOR: Oh, yeah. Oh, yeah.
MEGAN NEFF: Right, that's the classic story, right? Like, we internalize.
REBECCA MINOR: I am like the queen of having a panic attack in the bathroom and coming back to class and looking like everything's fine. So, yeah, totally, it came out in other ways and physical ways too that I'm now tracking. I'm like, "Oh, it's not normal for eight-year-olds to have migraines." Or like, you know, so consistently. Or other, you know, various stomach stuff like GI is so often connected to. I missed so much high school for like, what no one could figure out GI symptoms. They were just like, "Take some Prilosec, good luck." But it wasn't until I started managing my anxiety better that, that made sense, right?
So, yeah, there's so many… I think misattunement is a useful frame for that. And I think feels really validating to think about it through that lens. And I also have a mother who's a LICSW.
MEGAN NEFF: Wait, and I have a dad who's a psychologist.
MEGAN NEFF: [CROSSTALK 00:50:34] like family systems was that we all became. Fascinating.
REBECCA MINOR: It is fascinating. And it's been fascinating to unpack some of that too. Like being, like, it's not just my sibling to have it, but like I have it, and also, like, mom, you might have it too.
PATRICK CASALE: Absolutely, those are good conversations to have when you're able to have them. I was telling Megan that I had one with my dad while I took him to Spain for his birthday a couple of months ago. And I was like, we're drinking, which I knew this conversation was going to come from that. But I was like, "Yeah, so I don't know, if you've been listening to my podcast. I'm autistic, you've never asked me about it. I think you're autistic too. And here are all the reasons why I think you're autistic."
And instead of, like, this rebuttal or reaction, just like, "Yeah, that makes sense." And I was like, "I don't know what to do with this information now." I was expecting a very different conversation.
But this is why I like and I've talked about this on here too, like, IFS work and re-parenting work, and inner child work so much because even though it's still a struggle for me when my therapist is like, "What would you do with five-year-old Patrick? And how would you comfort him?" And I'm like, "I don't fucking know. I have no idea how to answer that."
But the parts work and the ability to piece that together, and like stress it out, and like look at it from a million different perspectives is super useful for me. And it's honestly, the first modality that I've been like, yeah, this is my jam. Like, everything else I don't care about anymore. This is the only way I'll do therapy going forward.
MEGAN NEFF: That's true.
MEGAN NEFF: Oh, yeah, you do EMDR, don't you?
REBECCA MINOR: Yeah, not as much anymore, but it was useful.
MEGAN NEFF: I'm feeling a collective like, is this our collective conversations coming to an end? Or is this a collective-like, sigh of the heaviness of what we've just been talking about? What is this energy I'm feeling?
REBECCA MINOR: It felt more like the latter to me.
MEGAN NEFF: Yeah, yeah. Me too.
PATRICK CASALE: Yes, me too. Yeah, I actually feel like we could have this like a five-hour podcast episode right now, which feels really good. It feels like it's been a good conversation. I have no idea how long we've been talking. So, to everyone listening, if you're still listening, we appreciate it. We've been talking for over an hour. So, I think we can continue on, I think we can do a lot of different things right now.
MEGAN NEFF: Rebecca, do you have a hard stop at 1:00 your time? Okay.
REBECCA MINOR: I do. I actually for one of the very first times in my life, I put a buffer between this and my next. Actually, I'm going to be on another podcast. I'm having a podcast day. But now that's something that I'm learning to do for myself. It's been really hard, and it's still hard. But I am trying to put space between things and not push myself past my limits. It's really revolutionary.
MEGAN NEFF: I'm going to check in on you on that in like a month. I'm going to be like, "How are the buffers?" Because, yeah, I've noticed that about your schedule.
REBECCA MINOR: Right, yeah, yeah. And while we're on an IFS kick, I explored that kind of urgency in IFS and that's been really interesting working with that, and also, like, as a legacy burden, that something that we inherit, but also, how much of that has to do with my neurodivergence and that I have so many ideas, and I'm afraid I'll lose something or something's falling through the cracks, or I'll forget if I don't hurry and do it right now. Or I'm like, "Oh, I need to empty the dishwasher." And then, I'm halfway through that when something else comes up, and yeah.
PATRICK CASALE: [CROSSTALK 00:54:55] head nodding right now.
MEGAN NEFF: Yeah, like the inability to trust my energy. And what I mean by that. So, like, if I have an interest in a project, I have to pounce, even if it means I'm staying up to 1:00 and I'm not doing any of the sleep hygiene stuff I always talk about because it's, I don't know that this interest, therefore, this energy will be reliable and available to me tomorrow.
So, there is that like, sense of urgency because I don't trust my mind or I don't trust my energy. And that's it. Like, that's a hard aspect of being ADHD is the difficulty trusting will my mind hold this? Will my energy be there? Will my interest be there? And not being able to predict therefore schedule. I think that's why non-ADHDers when they're like, "Let's do a planner, and let's schedule." What they don't realize of part of why that's so hard for the ADHD brain not just breaking up tasks, but like, I don't know what kind of energy I'm going to wake up with on to Wednesday. So, how do I schedule out? Like, am I going to have a lot of cognitive energy, but not much body energy, or flipped? Yeah.
REBECCA MINOR: Did your camera just move?
MEGAN NEFF: It did, yes. When I do hand motions it moves.
REBECCA MINOR: It's not making things up.
MEGAN NEFF: No, that happened.
PATRICK CASALE: Now, it feels like we're in an ending place. That's at least how I'm picking up on what we're experiencing.
REBECCA MINOR: You know, what I realized, though? We never talked about the thing we said we were going to talk about, with like the polls and stuff, which we don't need to.
MEGAN NEFF: Oh, like getting into the detailed experience of when these identities intersect. Yeah, yeah, we can link to our masterclass that we have where we do like, and I think that's probably better because that's more of a kind of content lecture-based presentation. And it's probably, a more helpful way to absorb all that kind of high-up information.
But yeah, basically, when the identities intersect, it's really complicated. It complicates both identities. You and I have talked about that a lot from like, sensory to executive functioning, to navigating medical systems. And yes, we have a whole masterclass, it's an hour-long that's available. Oh, we should make a coupon code for people who listened so they can get it at a lower rate? I'll do that. And we'll put it in the notes.
But is there anything that we didn't talk about around the intersection that you feel like is important?
REBECCA MINOR: I think probably just acknowledging that some of the challenges will be a little bit different. And to try your best, as hard as it can be to find a provider who will understand both of those experiences, which is tricky.
MEGAN NEFF: It's tricky.
REBECCA MINOR: And if not, you made that helpful flowchart of kind of like, which one is harder right now? And focusing on that. Like, if it feels like the autism is like the key piece, then find someone who really knows their stuff about autism, and hopefully, is decent about gender. And kind of fill in the gaps where you can and vice versa because there aren't a lot of us who are, you know, equally is hyper fixated on this intersection.
MEGAN NEFF: Oh, sorry.
REBECCA MINOR: No, go ahead.
MEGAN NEFF: I was just going to say we should also do a shout-out to FINN's work. We're both Finn's consultation group, Finn Gratton. They have Supporting Autistic Youth, I think is the title. I have it back here. I'll link that in the show notes as well.
But that's for clinicians listening, please go buy that book. It's amazing. And I think also for parents, it's a great resource. And even for individuals. I think it's a really validating read. It's more intended for parents and therapists, but I think for individuals it's also a great read. So, there are some wonderful resources available at this intersection. And we will point to some of those.
REBECCA MINOR: Yeah, and I think it's a danger to assume that you're never going to need to know that or it's not your population that you work with. Like, I didn't focus a lot on autism because I was like, "I'm in the gender world." And then I was like, "Wait a minute, you literally cannot be in the gender world without also understanding autism."
MEGAN NEFF: And same ways you cannot be working with neurodivergent clients and not understand gender queerness, yeah, yeah.
REBECCA MINOR: And that's one thing that's also been really nice with the parent coaching is being able to work with parents who are navigating both of those pieces and they do present with different concerns around their kid less so like, are they really trans or do they really know? But more just that, I think they've been very hands-on parents a lot of the time because what's often-
MEGAN NEFF: Often the neurodivergence, yeah, absolutely, yeah.
REBECCA MINOR: So, that, and like that kind of like autism mom trope, and like, needing to be on top of every detail, and like, it really blindsides them because they're like, "No, I know, my kid and I know what they need." And navigating that combination can be really tricky and…
MEGAN NEFF: Especially, medically because medical providers might see that and be like, "Is the parent pushing this kid's identity piece? The kid needs to be more involved." But maybe the child cannot speak in those medical settings, maybe. And so, the parent often becomes more of an advocate, and that gets complicated when navigating gender affirming medical care.
REBECCA MINOR: Absolutely.
REBECCA MINOR: It's really pieces too of like, "Oh, well, they're saying they want us to call them this new name and these new pronouns, but they're not changing their clothes." I'm like, "Well, have you considered that those are the clothes that are familiar, and they're comfortable, and that…"
Like, frankly, a lot of what we consider women's clothing is not comfortable. So, you know, maybe they're not wanting to like shimmy themselves into something that's so tight they can't breathe. And that's not an indicator of whether or not they're exploring their gender. So, yeah, that's what I'm happy to help people with.
MEGAN NEFF: Yeah, can you share a little bit about where people can find you? I know, you've got several resources for parents. And yeah, can you share a little bit about that.
REBECCA MINOR: My website is genderspecialist.com. And on there, I have a course called How to Talk to Kids About Gender, that's for all parents. It's not specific to folks who have trans or gender-expansive kids, but just if you know or care about kids, here are some helpful ways to talk about gender with them.
And then, also, information about [PH 01:02:20] peer coaching, which is great because it's not bound by licensure. So, I can work with folks wherever they are. So, I've actually been able to do some of that internationally, lately, which is really cool.
And otherwise, I have lots of free downloads and like a glossary of terms because there's a lot of language to learn and some basics like Now What guides of like, "Okay, so my kid just came out like… Now what?" So, I've got you covered there, and lots of blogs. And then, as you mentioned earlier, I'm also on Instagram @gender.specialist. So, yeah.
MEGAN NEFF: Awesome, awesome. Thank you so much for taking the time. I know your schedule is wildly busy. So, thank you. Oh, my gosh, my voice. Thank you so much for taking the time out of your schedule to talk with us. This has been a fun conversation.
REBECCA MINOR: Thank you so much. It was so nice to finally meet you, Patrick.
PATRICK CASALE: Yeah, you too. This was great. So, really awesome conversation. Thank you so much for being on here.
REBECCA MINOR: Thanks, guys.
PATRICK CASALE: And to everyone listening to the Divergent Conversations Podcast, all of Rebecca's information will be in the show notes, links, all of the things we talked about today, and all the things that Megan mentioned, as well. And new episodes are out on every single Friday. Like, download, subscribe, and share.

Friday Sep 15, 2023

Many questions around identity often come up for adults who have been masking their whole lives and discover later in life that they are Autistic.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, answer some of the questions sent to them from podcast listeners about identity and moving forward in life after autism discovery.
Top 3 reasons to listen to the entire episode:
Hear answers to questions like, how do you know who you really are beyond the mask, can you still enjoy your masked life and live as your authentic self, are you defined by your autistic traits?
Understand the process of self-discovery and how it can manifest for different people, as well as some ways to express your newfound identity.
Learn strategies to reshape the way you structure your time, commitments, and priorities to protect your energy and live a more balanced life.
The process of self-discovery and learning can be challenging. You might feel grief that can arise from losing or feeling disconnected from the masked version of your life, but you also can experience a feeling of liberation as you explore the new version of yourself, and you’ll have the opportunity to understand and honor your needs.
What is Masking in Autism? Autistic Masking Explained (blog post): https://neurodivergentinsights.com/blog/what-is-masking-in-autism?rq=masking
Autistic Masking Workbook:
As a podcast listener, you can use this coupon code to enjoy a 25% discount on the individual workbook or the workbook for clinicians.
For Personal Use, use coupon code: Unmasking25 here (https://neurodivergentinsights.com/neurodivergentstore/p/autistic-masking)
For Clinical Use, use code: Unmasking25-Clinical here (https://neurodivergentinsights.com/neurodivergentstore/p/autistic-masking-therapy-resources)
PATRICK CASALE: So, this is part two of our identity conversation. If you tuned in last week, Megan and I talked about identity from a pretty nuanced lens, both clinically, and professionally, and personally. And today, we are going to focus more on questions that came into our Divergent Conversations Instagram account and Megan's Neurodivergent Insights email. So, Megan, what you got?
MEGAN NEFF: Yeah, so we got a lot of questions that came in around identity and masking or unmasking, which makes just so much sense to me based on our conversation last week about how unmasking often triggers a whole identity crisis. And then we have some other questions. 
So, we'll all shoot off with the first question. There's a lot of questions in it. So, I'll go ahead and read it all. But maybe we can break it apart. 
"So, can you please do an episode on figuring out who the real you is? I'm torn about the whole concept of unmasking because I actually love the life I have and have created while being masked. However, it's taking a huge toll on my health, anxiety, depression, and illness after illness, fatigue. How do I maintain the beautiful life I have, but still be my authentic self to model for my neurodivergent kids? How do you know who you really are?"
So, there's a lot in that. Your face is like-
PATRICK CASALE: That is a [INDISCERNIBLE 00:01:35] question.
MEGAN NEFF: Yeah, and I mean, I think we should break it up. 
MEGAN NEFF: I'll start with the first part of the question. And I think this is why I was drawn to this question of, like what happens when you actually really like the life you've created through your autistic mask?
And I actually relate to this. You know, I have a draft of a reel from like 18 months ago. I never hit publish, which I think is interesting. But the reel I made was, basically, about how sometimes I miss my old life. And that's actually true for me. I wouldn't go back. But there was a life my mask self created I feel like I couldn't do now. Like, partly, this stamina, now that I know what it's like to live unmasked, I just want to have the stamina for it. But like the idea of having a career in academia because that was kind of the trajectory I was going. My masked self is the person who created that, or even how, like, I was a lot more social. There are things I do miss about my old life and that's complicated.
PATRICK CASALE: Yeah, you have mentioned plenty of times on the podcast how your life feels kind of insulated and small, in a lot of ways, socially, especially, I think. So, I think, like, it makes so much sense to say I miss certain components of this life that I had, that I either am grieving, that I can no longer kind of withstand, or accept, or tolerate. I don't know, that's not the right word, but I think what I'm trying to say is like, there are portions of life where you're going to grieve the fact that you can no longer participate in them the way that you used to. 
And it makes so much sense what this person is saying about like, "I'm getting fatigued, I'm getting sick, I'm getting really burnt out, I'm getting really tired." And it's so often for so many of us becomes like one or the other. Like, you either prioritize and protect your energy, and you say I can no longer participate in A, B, C, D, E, F, G, which so many people don't want to do, and understandably so, or I continue to push myself through this life that I've created and live in. And the cost is all of the health concerns, all of the fatigue, all of the energy which can then lead to what? Substance use, struggles with, you know, just stress tolerance, struggles in relationships, struggles in the family system, etc. 
And I think, unfortunately, so many people have to choose one or the other. It doesn't seem like there's a good middle ground for a lot of people.
MEGAN NEFF: Yeah, yeah. Well, and that probably ties back into kind of our all-or-nothing thinking patterns of… and I definitely feel like I've fell into that of like, just creating, like, I'm done. Like, I'm done with all of it, washing my hands off it. 
And yeah, so moderation. Like, creating a life with moderation is really hard. It's interesting, that's something Luke, my husband will say to me a lot of, like, "You just don't do moderation." Like, I do extremes and so…
PATRICK CASALE: Yeah, it's one or the other, it's black and white in so many ways, which sucks because if you could find the gray, if you could come a little closer from one or the other, we could probably have more of the things that we grieve losing when we realize like, this is what I have to do in order to survive or protect my energy or capacity. 
This is going to be a divergent moment, and it may not make a lot of sense, and I hope that it will. I've openly talked about my history of gambling addiction. For a lot of people who go through recovery and sustained recovery, there is grief of your old life, there is a grief process of the people you used to spend time with, the places you used to go, the rituals, the activities, the familiarities because it becomes so deeply ingrained and embedded in terms of like, expectation, what to look forward to, familiarity, comfortability, et cetera, and it becomes routine, and it becomes habitual. 
And it's so hard because you grieve even though you know how painful, and devastating, and negative it is for you, you still grieve it anyway. And I almost associate the two in some ways of like, grieving the unmasked version of you after you've created this masked version of your life that you do enjoy in a lot of ways and areas.
MEGAN NEFF: I love that. First of all, I think that actually connects really well. And I appreciate you sharing that about kind of grieving. I haven't heard that language before, but I really liked that, that resonates. 
But, oh, yeah, grieving the masked self. I think I sometimes talk about, like, bearing the masked self. Like, before we can truly address our internalized ableism and live into ourselves, we have to bury our masked self, we have to grieve who we, I guess, part of us wanted to be, right? Like, part of me absolutely wanted to be that mask, this kind of academic, someone who's comfortable with public speaking, like, who can go to conferences with ease. Like, I wanted to be that version of me, part of me did. 
So, absolutely, there has been grief. While there's been liberation, there's also been grief. And I would say, I hold the liberation in one hand and the grief in the other hand throughout this process.
PATRICK CASALE: That's so well said. And I agree 100% that I grieve the masked version of me who was like really social, and outgoing, and could go to lots of networking events within my community because I love connecting with people. I just have had to really change the way I connect and which venues in which capacities. 
And again, we've said this so many times, and people keep asking for it, but I had to rely on alcohol to live a masked version of myself, to be able to show up socially, to be able to network, to be able to go to these events every night of the week. I had to rely on substance use to sustain my abilities to show up. 
And then, the other side of the coin is everything that comes with that in terms of, you know, sleep deprivation, depression, anxiety, dependency, all the things, and it just becomes too much. 
So, I do agree with this grief liberation, holding them in both hands of like, and we've talked about this a million times. Like, grieving just like what you thought you could have accomplished, or done as a child, or a teenager, or young adult. Like, what you romanticized about, like, your life becoming and looking like.
MEGAN NEFF: One thing I appreciate about what you just said, it kind of was like a reality shake for me. I think, I'm almost three years out, like, especially, as I get more distanced from my old life, and for me, like, old life, new life, like 2020, like the pandemic was a really concrete marker of old life, new life. I think there's a tendency to idealize my old life a little bit of like, what I was capable of, what life was like, but if I really go back, the reality was, yes, I could go to conferences with more ease. 
Right now I think a conference would totally overwhelm me. And it would be a struggle. So, there were things I could do that I would come home and I would crash. And I was not a very present mother. And I would come home from a social situation, and that's when I would drink. I also struggled with alcohol in the past when I was masking more and I didn't have language for it, but I was trying to self-soothe from the sensory overwhelm. 
So, after a sensory-rich day, which was five days a week, I would be overstimulated, I'd be so fatigued, I'd be misusing alcohol. And it actually is easy for me to forget those pieces when I can get into a headspace where I'm idealizing what I… It's interesting, the language I'm using, I don't know if I agree with it is what I used to be capable of. I'm putting air quotes around that. 
But I think that's the narrative that sometimes comes on from me of like, I used to do things that now feel really, really hard for me to do. And I'm not sure how much it's because I'm more self-aware of my body now and how much… Like, if I've just kind of lost the conditioning to survive these terrible things. But yeah, that was a lot of complicated thoughts thrown at you, Patrick.
PATRICK CASALE: It's interesting, you know, like, we've been on episodes, or I feel like my brain is just not processing well, and I'm very slow to pick up on what we're talking about. And right now it's like, supercharged. So, I just picked up on everything you said, and I have so many responses to what you said. So, I'm trying to, like, collect myself. 
But I think almost what I'm hearing you say is like, there's this grief of like, "Capable of." Or what it used to look like. But I think that your liberation side is like, this understanding of like, look at this life you've created by not participating in what you used to feel really energized by and "Capable of."
MEGAN NEFF: Yeah, yeah, like I feel much more aligned with myself because of long… and long COVID is just a huge factor. I imagine if that wasn't a factor and I'd feel a ton better, but I do struggle less. I still struggle with fatigue, but less than I did. I'm able to live an alcohol-free life like, and that was something that was really hard to do in my old life. I don't even know what I was answering but…
PATRICK CASALE: This liberation that you now experience because if you draw that line in the sand of like, COVID, 2020, this is when life has really shifted for me. What I've also heard you talk about very publicly is how you show up as a mother, how you show up as a partner, what you've been able to create in your business, how you've been able to show up in terms of advocacy effort, and I wonder if that ever happens if COVID won. One, COVID doesn't happen. Two, if you're still in academia, and like going to conferences, and like pushing yourself so damn hard all the time. I imagine this version of you isn't here and it's a [CROSSTALK 00:13:06] itself.
MEGAN NEFF: Yeah, and I think the price, it's interesting, this is the first time I'm putting this in words. I think the price where I really would have paid the most is in my parenting and in my health. If I-
PATRICK CASALE: Absolutely. 
MEGAN NEFF: …kept, yeah, yeah.
PATRICK CASALE: So, that is a very, very, very elongated response to that question that was just asked by that person on your email. 
MEGAN NEFF: Yeah. Well, and you know, a lot of these questions can kind of become a springboard to diverge into conversations.
PATRICK CASALE: Yeah. So, we appreciate that question very much.
MEGAN NEFF: Yeah. And then the second part was about maintaining the beautiful life and living authentically. I think that's finding the Goldilocks of moderation, which good luck with that. If you figure it out, come tell us how to do it.
PATRICK CASALE: I think that's what we're all seeking, right? Is like, how do I maintain this thing that feels so elusive to me yet with the complete understanding that I cannot sustain this in this capacity?
MEGAN NEFF: Yeah, yeah. And that's what actually pacing systems, and I know Mel, I don't think they talked about it on the podcast, they were on, but on their website, and Mel was the autistic physician. I know they also talk about pacing systems. I talk about pacing systems a lot too. I think finding a pacing system and there's a lot of different kinds. I have three that I talk about a lot, spoon theory, the traffic light system, and then energy accounting, using a pacing system to help pace your energy expenditure. It's good for anyone with chronic illness, but it's also really helpful for neurodivergent people, and that can help with the moderation. So, I would throw pacing systems into the recommendations there.
PATRICK CASALE: I'm going to throw my two cents on top of that, if that's okay.
MEGAN NEFF: Of course. 
PATRICK CASALE: I think that what Megan and I said, black and white thinking, right? Especially, concrete thinking, even if you're able to, if you want to maintain some portion of this existence in this life, it's about, like, picking and choosing the moments that are important to you, picking and choosing the things that you want to put your energy into, which is exactly what Megan's saying in terms of pacing systems. 
But really, that's how I would envision it and conceptualize it is like, if I took a step back and examine life for what it is right now, what are the places that I can put my energy into knowing that it still gives me a return? Versus like saying yes to everything, people pleasing, showing up to every event, showing up to every social obligation. I don't think that's going to work very well. I think that just continues to perpetuate the burnout, the depression, the fatigue, the anxiety, so…
MEGAN NEFF: Absolutely. That reminds me of another exercise. I used to use this a lot when I worked in healthcare settings with people. It's called a value compass. And if you think about like, 10 boxes, and it's got different kind of domains of your life. So, maybe family, parenting, partnership, school, work, spirituality, physical health, like different domains, and then you rank on a one to 10 scale, how high of a value is it? And then you go back, and you rank how much effort are you putting into it, and then you look for gaps. 
So, let's say, work is a three value for you, but you're putting in 10 effort. That's a big gap. If parenting is like a 10 value, but you're putting in two effort, that's a big gap. Your quality of life is going to be lower if we're not expending our energy where our values are. So, the life compass, kind of value map, overlaying that on top of a pacing system, in my mind is like the ideal path for figuring out this moderation piece. 
PATRICK CASALE: I agree, 100%. 
MEGAN NEFF: Okay, our next question, "How can you find your own identity/personality after late diagnosis and constant high masking?" I've got thoughts, but I'll let you first go, if you have thoughts.
PATRICK CASALE: My thoughts were going to be that you have thoughts. I was going to say in our first episode you kind of alluded to this with your first step of your workbook that you have. So, I don't know if you want to elaborate on that because I think that's maybe where you're going to go anyway.
MEGAN NEFF: You have read my energy, or are in my mind. Yeah, pleasure and play, which is where we left off in the last episode, I think. Chase your pleasure with curiosity because… and that gets back to when we mask, we are typically cueing into the experiences of the people around us. And then that is informing how we're going to show up. And so, that can mess with like, knowing what our preferences are, knowing what our desires are, knowing what brings us joy, what brings us delight, what we don't like. 
Secondly, a lot of us respond to the over stimulation through dissociating from our body, which again, dissociates us from pleasure. And so, starting with following your pleasure and your interests, I think are really concrete and powerful ways to start exploring your identity.
PATRICK CASALE: Yep, that was basically what I was going to say. So, great answer.
MEGAN NEFF: So, basically, go back and listen to the last episode if you have that question.
MEGAN NEFF: Okay, next question. This is actually pretty much the same question. "When you realize you're a head masker the question of who you are really arises, and I don't know." I actually don't have much new to add to that to that. Do you, Patrick? Kind of same...
PATRICK CASALE: Same answer, same answer.
MEGAN NEFF: Yeah, same answer.
PATRICK CASALE: What Megan just said and just listen to our last episode. I think we broke that down pretty succinctly, so…
MEGAN NEFF: Mm-hmm (affirmative.) Okay, so this is getting away from masking. So, we're diverging. I really like this question, though. "So, since my own diagnosis, things that I thought were my personality, I've since learned are probably autism, not so much ADHD because that feels separate from personality." Okay, we should just tag that piece to talk about at some point, Patrick, back to the question. "So, I had been in a bit of an identity crisis, wondering what is me and who am I? What I thought is my personality is actually autism then what is my personality? Is it my special interest? My unique combination of autistic traits? I have no answers, but this might be…" Oh. I read too far. 
MEGAN NEFF: Okay, that's the question.
PATRICK CASALE: That is such a good question. Do you have thoughts? 
MEGAN NEFF: No, go ahead. 
PATRICK CASALE: I think this is where like therapist me comes in, where it's like, "Oh, both ends." Right? Like, I think that yes, the answer to your question about like, is it my special interest? Is it my personality traits? Or is it like autistic traits, and tendencies, and characteristics? Like, yes, that is a part of your identity. And it's not all of your identity. So, that's where the complicated, like, nuanced conversation comes in, is like, yeah, a lot of your identity is going to be informed by autism because of the lens that you used before, the correct lens of seeing the world in that way, in that light. So, what are your thoughts, Megan?
MEGAN NEFF: Yeah, I think like similar vein of thought of like, just because it's connected to your autism doesn't make it any less you. So, there's this thing that happened in neuroscience in the last 20, 30 years, where all of a sudden, we can see things on brain scans that we never thought we should be able to see like empathy, love, like the experience of love. And what started happening was this almost reductionistic narrative that because we can pinpoint it to brain circuits, it somehow takes away from the experience of love or empathy because we can scientifically decode it. So, once we can pinpoint the cause of something, scientifically, the temptation is to develop a reductionistic narrative around it. 
And I could see the same thing here, just because perhaps your social justice is driven by an autistic trait doesn't take away from the fact that that's part of you. We understand it better. So, I think what I often caution people from is falling into that trap of that reductionistic thinking that because we can understand it, it's now reduced to that.
PATRICK CASALE: Right. It also brings to mind like, this is what I used to see a lot of in, and I worked in crisis units, and crisis centers, people who maybe suffer or struggle with bipolar disorder. And there's this tendency to say, "My behavior, my action is because of the bipolar disorder, right? Like, my action is because of my mania." Probably true in some instances, but not all instances. Like, so not allowing for, so often we default to that. Like, I did this thing because of this thing, I showed up this way because of this. 
And I think that it's really easy to then default to I only see the world and lens, or the world through this new-found autistic diagnosis. And that's something that I myself, definitely, experienced for the first year of like, discovery because you want to start looking at everything from different angles, and perspectives, and perceptions. So, I think it's quite normal for that to default to this is how I start to envision and see the world and my place in it.
MEGAN NEFF: Yeah. And so, I'll share some of my personal experience with this because I actually experienced something similar post-discovery. You know, my husband and I were talking a bit about, like, our early dating and our marriage, frankly, of just like, wow, this lens kind of unlocks a lot. 
And one of the things I was realizing is that a lot of the reason my spouse was initially attracted to me was actually autistic traits, right? Like, I was willing to question social norms within the very fundamentalist tradition we were in. I was outspoken, and again, being an outspoken girl in fundamentalism that was something that was attractive to him, and not necessarily super common, my love of ideas and philosophy, my directness was something that my spouse was drawn to. 
And so, I had this moment of, does it take away? Because these are autistic traits? Does it take away from them being Megan Anna? 
MEGAN NEFF: And so, was he like, does it change the narrative if it's like, well, he was drawn to me because of my autism, not me? But again, that's that reductionistic narrative of separating my autistic traits from who I am. But I do think it's a natural, it's part of the unpacking process to have these kinds of questions come up.
MEGAN NEFF: Okay, I feel us diverging from this.
PATRICK CASALE: Where do you want to diverge to?
MEGAN NEFF: I don't know. We have the ADHD therapist question, but that gets more into therapy identity.
PATRICK CASALE: Yeah, I think that because we went so in-depth on episode one of this series of just talking about identity, it's really important, again, to just be curious about these things. And I think that these questions are really common. That's one thing we want to really highlight and normalize is just the fact that, like, this is a part of the discovery process, you're going to have a lot of questions, and curiosities, and confusion when you experience a new diagnosis, especially, one that is pretty life-altering in a lot of ways. It doesn't change childhood experience, teenage years. Like, all of that stuff is still your own experience regardless of the diagnosis or not. It's just putting a newfound lens, and understanding, and perspective to life. And I think with that comes a lot of questioning. And I think that's really, really normal.
MEGAN NEFF: I call it the dresser drawer. So, again, I think more on images than words. So, when I was first experiencing this, and at the point, actually, I bumped up my therapy from once weekly to twice weekly in the first three months post-discovery, and that was super helpful for me. But the metaphor I came up with to describe it to my therapist was like a dresser because what I was visually picturing was opening a dresser, like opening a drawer, unpacking it through this new lens, closing it, opening another drawer. 
So, like opening early child experiences, opening all past romantic relationships, opening social experiences. Like, opening different stages of our life. There's so many drawers that we're opening and sifting through, often frantically in, especially, those first few months. I remember feeling like my head was buzzing constantly. I wish I'd written more down because I was just getting like aha moment after aha moment in those first few months.
PATRICK CASALE: I agree 100%. I think that's a wonderful, like way to conceptualize it through that image because I was doing the same thing. And I think I was doing the same thing. I still do the same thing from time to time, just not as frequently now that I have better understanding. 
But at first, you really do. It's almost like unpacking a suitcase. Like, you are taking everything out and like, taking a look at it. And like, then you're putting it away because you're like, "Okay, now that makes sense. Oh, that social experience makes sense. Oh, like this way that I felt about you know, A, B, and C makes sense. The way I experienced childhood makes more sense." Like, everything starts to… you start to see it from a completely different lens and light.
But that that process can also be unbelievably exhausting, unbelievably confusing. If you don't have support in place, like, that is first and foremost. I think that's so important to highlight as well.
MEGAN NEFF: Yeah, I think that is a great time to, if possible, work with a therapist, if not already, just… Some of the feedback I get a lot is, like, the people in my life are tired of hearing about this because it kind of, you know, I've talked about this before where I was, social interests become like our lens. So, there's often a lot happening in those first three to six months. Like, A, we're going through the dresser, we're opening all the drawers. So, a lot of our energies go into that. B, for a lot of people autism or ADHD becomes a special interest. So, we're researching, and we're reading, and we're intaking a ton of information. And then we want to talk about it a ton. 
Oh, back to, like, feedback I get, people are tired of hearing about it. But the other one I get is like people saying, "I feel like I'm kind of manic right now. Where people are telling me I'm kind of manic." And it's this flight of ideas as you're unpacking paired with special interest energy, paired with like a huge epiphany which can cause us like surge of energy, not always positive, some positive energy, some kind of agitated. And so, it's a whirlwind.
PATRICK CASALE: A whirlwind is a good word for it to describe the experience. So, you know, I think if any of you are listening and you're relating, or resonating, or you're feeling like, what is happening to me during this post-diagnostic discovery period of my life? It makes a lot of sense, both clinically, from like mental health perspectives, and personally. I think it makes a lot of sense. And I do think that you start to see the world in different shades after this happens. And I think you start to see the world and everything that you do. 
And that can be challenging if you start to think about like, every action, every action. Like, you're kind of dissecting it and kind of examining it, that's kind of my process. So, it can be quite mentally exhausting when every response to an email, every time you start to experience like this anxiety around receiving messages, every time you go out socially you experience A, B, and C. Like, it's a lot to take in. So, just give yourself grace throughout this process because it is a life-altering and life-changing experience.
MEGAN NEFF: Okay, this is going to diverge just a little bit. But can we talk a little bit about pendulum swings? And this gets into a question that also comes up in some of the consulting work I do. I'm curious if you see this. 
So, when someone, they find this identity, for a lot of people, not for everyone, but for a lot of people, it's really validating, it's really liberating, and then they get plugged in to autistic or ADHD culture. And then there is almost a, so social justice values come online, but almost a like anger that some people get trapped in of like a defensive anger to where everything is like, "Oh, that's ableism, that's ableism, that's ableism." And there's a ton of projection that then starts happening to the people around them, to I think they're probably working through their anger and grief, but it's showing up in a way that's not really working for that person very well, or working for their key relationships. So, they've almost pendulum swung from like, fawn response to fight response, and then get stuck there. 
And first of all, I want to normalize, if we were to map out developmental process post-discovery, I actually think it's really developmentally appropriate to swing over to fight mode. I then see a progression for some people, not for everyone, where they're able to integrate it in a way and kind of get out of that fight mode. Okay, I'm going to pause. First of all, is any of this making sense? Is any of this resonating with you?
PATRICK CASALE: Makes perfect sense. I actually have several people in my mind who are immediately coming to mind. And like you said, it makes sense when the pendulum swings from fawn response to fight response. And it makes sense why there's anger. And it makes sense why you want to stand up for not only yourself but your newfound community. I think it makes a ton of sense. 
And we all know that autistic people and social justice go hand in hand. But it's so easy to get stuck in the anger. And it's so easy for… and this is how I see it show up. I moderate a large Facebook group. I see a lot of people attacking other people for usage of language. And usually, it's like someone who's like, "Hey, looking for a therapist in California who specializes in ASD." Then the responses immediately, "Actually, we don't use that language anymore." And whatever the response is. And it comes up a lot around the usage of language, this anger of like, get it right, use of formative-based language, identity-based language. 
I think the anger is valid. I also think that there are other ways that you can have these types of conversations that don't destroy you so much because anger is an emotion that is not meant to be used 24/7. It is an exhaustive emotion. It's a part of our fight-or-flight response. It's a way that we show up and that we show that we care, that we're concerned. It's a way that we really can create change. But like if you get caught in it, it can destroy you emotionally.
MEGAN NEFF: Yeah, yeah, yeah. 
PATRICK CASALE: Does that make sense?
MEGAN NEFF: It makes so much sense. I mean, if we stay in fight mode, right? Like, that is wreaking havoc on our nervous system. It's also like, I am so thankful for the people who were gentle with me when I first was learning.
MEGAN NEFF: No one comes into this conversation knowing all the language, understanding it at all. Like, you and I have been in this conversation a long time, we still step in it, that's part of showing up in the world. Wanting to learn is risking stepping in it. And so, it's also about building a culture that is inviting. Like, I hear this from parents all the time of like, parents who are allistic, like, "I want to learn from autistic adults. But I go into those spaces, and like I'm terrified of speaking because if I like said this once, and then…" So, it's also about creating a culture that is open to educating. 
And I realize, like, that's a loaded sentence I just said because there's labor in educating. So, we've got to balance that out. And not all spaces can be education spaces.
PATRICK CASALE: Absolutely. And I think there's even this underlying anger that can exist pretty consistently when you start to examine society and how it's not necessarily set up for neurodivergent people to flourish, to be accepted, to not be discriminated against. But again, it feels consuming.
MEGAN NEFF: If you're locked in it, yeah. It's not about not having anger. Like, anyone in a marginalized group, like, should have anger. And anger is not about emotion, it's energizing, it's mobilizing. But it's the getting frozen in the anger, it's getting locked in it that is terrible for our health, and-
PATRICK CASALE: [CROSSTALK 00:37:51] pumping, pumping, pumping [CROSSTALK 00:37:55] cortisol through your body. And it's just not great for your nervous system. It's not easy to regulate yourself when you're trapped in it. 
And we also understand that there are reasons to feel trapped in it at times, and just trying to move that pendulum a little bit to the middle, a little bit, even one little space over so that it doesn't consume because I think when it consumes that's where a lot of interactions go awry too that you didn't necessarily mean to have social engagements or professional interactions go a certain way, but because you're trapped in the anger things come across in a way where you can't always take it back.
MEGAN NEFF: Right, right. So, when you're coming from a more integrative place, it's like you're honoring the anger experience, you're able to self-attune to it, but then you're also able to work through it to a degree to where like, you know, yeah, if you're in a cross neurotype interaction, you can maybe have a more effective interaction with that person that I would say actually makes the world better because maybe it's led to some education or led to some awareness. It's not perpetuated the misunderstandings that often happen across neurotypes. 
PATRICK CASALE: Right. Yeah because I think if we're approaching conversations always with anger, like people are entrenched in how they communicate and believe in a lot of times we're not going to get a point across, we're not going to help change someone's mind, we're not going to help educate when we're in a place of anger. But if you're coming to it with curiosity, so it's a much different experience. 
MEGAN NEFF: Yeah. I love that, curiosity. Curiosity, I mean, last podcast, remember, like, openness for constriction. Like, anger tends to constrict space whereas curiosity tends to open space. 
MEGAN NEFF: And we need a lot more curiosity in this world, we need a lot more dialogue, and openness, and searching. And again, not to dismiss anger. We need both. 
MEGAN NEFF: I feel anxious about this podcast all of a sudden, and I'm like, I wish my words were working better.
PATRICK CASALE: Yeah, I think that when we start to dissect things that create, and evoke, and elicit emotions, right? Like, we're talking about stuff that's heavy, we're talking about stuff that for a lot of people is valid. Anger is valid for a lot of people in our communities, especially, when we start to break down intersectionality, right? So, we get that. And I think when we start to talk about this stuff, I think you and I have this propensity to try to get it right. Almost like, I don't want to say the wrong thing right now, I don't want to like have to then deal with the consequences of like commentary, and responses, and feedback. So, it feels normal as a human experience to be like, "Ooh, this is making me anxious."
MEGAN NEFF: I think what I'm realizing is making me anxious is that I feel like it could sound like I'm trying to police people's anger or their emotional response. And like, A, I don't want to do that. B, I want to normalize, like, this.
PATRICK CASALE: This is, again, nuanced, right? So, if we go from like, anger over the neurodivergent and neurodiversity affirmative movements, I think that there's a lot of ways that we can have further conversations. 
Circling back to identity, I kind of think we answered the questions that we received. Now, what we will say to everyone who's listening is that we get a lot of emails, and a lot of comments, and a lot of DMs. And we are really, really, really thankful for all of the support. I mean, it feels like it happened immediately. And it feels a bit overwhelming, if I can just speak from my own experience. And we know we can't get to all of them. But we do read them. I do read all of the DMs and all of the comments that come in. To Megan's advice, I don't respond to all of them because it's impossible. But we are going to incorporate a lot of your comments and questions into episodes. And we are going to try to do episodes based on topics that people are suggesting because we want to get to everything and we know recording once a week doesn't always allow for that. I am just noticing Megan's shift in energy.
MEGAN NEFF: Well, it felt to me like you were ending the podcast, so I followed.
PATRICK CASALE: Yeah, I think that's where we're at, yes. Unless we have other stuff to touch upon. I think we're at a good place to stop. And I think that hopefully, we answered your questions about identity. We know that we could not only do two episodes on identity, we could do a entire season on identity. And we're going to have other guests on to talk about intersectionality. And I think that will also open up even more questions for dialogue around identity, which is, the beauty in these conversations is that we could diverge all day and still never have a finite response. But I love what you said about openness versus constriction when we are starting to think about identity, and moving into a place of curiosity, to really try to conceptualize it from that lens. Okay.
MEGAN NEFF: So, this-
PATRICK CASALE: This is our awkward goodbye time because-
MEGAN NEFF: Awkward goodbye. 
PATRICK CASALE: You know, it's interesting when you are spending so much time with someone despite never meeting them in person, being able to intuitively pick up on energy, and I think that is a blessing and a curse sometimes for me. 
So, anyway, thank you so much for listening to the Divergent Conversations Podcast. New episodes are out every single Friday on all major platforms and YouTube. Like, download, subscribe, and share. And goodbye.

Friday Sep 08, 2023

Identity is complex and interwoven into the world around us. But as Autistic individuals who wear a mask, identity is often not entirely shaped by ourselves. Late in life discovery of autism or ADHD can set off a cascading journey of self-discovery and identity exploration. Once we start to embrace our authentic selves and explore our identity, everything can change.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, dive into the topic of exploring identity as late-diagnosed Autistic individuals and discuss the process of exploration and claiming an identity that embraces all our neurodivergent uniqueness, how it impacts and changes daily life and choices, and how it can shift both new and old relationships.
Top 3 reasons to listen to the entire episode:
Understand what unmasking and redefining identity can look like, as well as how it can impact both internal and external experiences, preferences, and relationships.
Discover how breaking free from a "mask" identity can allow autistic individuals to explore their creative side, set boundaries, and authentically accept their autistic identity.
Learn how to use pleasure and play to explore identity and discover your most authentic self.
Give yourself permission to explore uncomfortable emotions and experiences. Be curious, dive into the things that give you pleasure, and detach from others' expectations to unlock new paths of self-awareness and understanding.
What is Masking in Autism? Autistic Masking Explained (blog post): https://neurodivergentinsights.com/blog/what-is-masking-in-autism?rq=masking
Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities by Dr. Nick Walker (book): https://neuroqueer.com/neuroqueer-heresies 
Autistic Masking Workbook:
As a podcast listener, you can use this coupon code to enjoy a 25% discount on the individual workbook or the workbook for clinicians.
For Personal Use, use coupon code: Unmasking25 here (https://neurodivergentinsights.com/neurodivergentstore/p/autistic-masking)
For Clinical Use, use code: Unmasking25-Clinical here (https://neurodivergentinsights.com/neurodivergentstore/p/autistic-masking-therapy-resources)
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.
MEGAN NEFF: Are we going to start this conversation, Patrick? 
PATRICK CASALE: I like that. 
MEGAN NEFF: [CROSSTALK 00:00:15] I mean, I was like, "Oh, snap. I'm supposed to have the social lubricant here and ease this into a organic conversation." But I'm terrible at that.
PATRICK CASALE: I think about it as like the scene in Talladega Nights, if you've ever seen it, where Will Ferrell is like, "I don't know what to do with my hands." When he's on an interview. And like, "Just put your hands down." He's like, "Like this?"
MEGAN NEFF: Wait, oh my gosh, that has actually, like, destroyed my life. Right now my hands are in my pocket. My whole life I either, like I used to wear skirts a lot, which is interesting because I'm very gender-neutral in how I dress now. But it had to have pockets. So, I always had pockets or a coffee mug, like a travel mug with me. Otherwise, like, my hands, I didn't know what to do with my hands.
PATRICK CASALE: That's why I am always fidgeting with something in my hands or like, my dog is laying next to me right now, so I'm just petting him. He's not enjoying it. But I am like, so yeah, I am with you on that. 
So, I think today I can provide the social lubricant, is that we are going to do a two-part series on identity. And part one is going to be our own thoughts on identity, unmasking, etc. And part two is we're going to read some questions that came into our social media accounts and try to give some overview and depth into those.
MEGAN NEFF: Thanks for providing the thesis, for doing what my brain cannot do this morning. 
MEGAN NEFF: Yeah, I don't know about you, Patrick, but identity, this is a really interesting topic to me. I think it's something I've been thinking about and talking about since the beginning of my autistic discovery because I think, especially, when you come at it later in life, so I was 37 when I self-discovered and then was diagnosed, there's a whole lot of life to unpack. And with that, a lot of core identities get kind of reshuffled in the mix. And I see this happen all the time, right? I work with a lot of people through the diagnosis process, the unmasking process, and it's a pretty intense identity exploration for a lot of people.
PATRICK CASALE: Yeah, it's very intense. And I was 35, so about the same age as you. And I think that it starts to, I think, well, my brain has so many thoughts in it right now. Number one is, I think that autistic people, especially, are so analytical, and there's constantly this existential questioning happening, no matter whether you know that you're autistic or not. Like, it's constantly a process. 
And number two is once you find out that you are in fact autistic, it can start to unravel these things that you thought you knew about yourself or believed about yourself. And then it becomes very hard to almost separate like, what is autistic trait tendency characteristic versus what is my actual identity? Are they intertwined? Do they overlap? 
A lot of us are using identity-first language in an affirmative sense. So, I know for myself now I almost introduce myself as an autistic ADHD entrepreneur, person, therapist, whatever. So, it's really a complicated conversation.
MEGAN NEFF: Okay, so that gets into, okay, my brain is also divergent. I think because this is such a big topic. So, like, what I heard in that of how you introduce yourself, you are integrating a new identity. So, that's task one, I would say. And these are not linear, I'm putting them into tasks to try and create some structure here. 
Task two or another task I often see is rethinking old identities. So, like, for example, for me, my gender identity, my sexual identity, my religious identity, my professional identity, all were on the table as I was also integrating a new identity. So, it's deconstructing old identities and re-conceptualizing them through an autistic… Well, through an autistic lens, but it's more like, once I learned to break free then there was like a, I want to use the word queering here. Like, I think learning I was autistic taught me how to queer my identity. It taught me how to think more critically, and constructively, and playfully about my identity, and that's contagious when that starts to happen. 
And then there can be this domino effect where all identities, or several identities start getting queered. So, queering, it means to challenge perhaps a common held narrative or social norm. It often uses storytelling, but it is a way of kind of subverting the socio-norms or the social norms. I'm sure there's other people that can describe it more succinctly. Nick Walker's work, if you're interested in the concept of neuroqueering will be a great resource. And we should add that to our notes, Patrick?
PATRICK CASALE: Yeah, so it sounds like thinking about your identity from a lens where things start to blend that are no longer commonly clear, or sometimes even socially acceptable in terms of how we may have developed or how society sends messages as well. 
MEGAN NEFF: Yeah, yeah. 
PATRICK CASALE: I think for a lot of people identity becomes an uncomfortable conversation, in terms of like, I don't even know what my identity is, which is why so many people often default to like, "My identity is my profession, my identity is my role in the family system." 
And you never really fully, truly step back and think about like, "Really, what is my identity? How do I identify? What is it made up of?" Because there are all of these different characteristics, and traits, and belief systems, and things that are important to you that create your identity. 
And it's a complex conversation. And I think it's one that makes a lot of people really uncomfortable. And once you receive a diagnosis or self-diagnose, I do think you start to explore your identity through that lens. And like you said, first and foremost, like, identifying through that neurodivergent lens, and then putting these pieces together. And I think there are a lot of pieces to unpack for a lot of people.
MEGAN NEFF: Yeah, so, I'll share my experience. And also, I see this experience a lot. So, my mask, right? It was all about fitting in, taking up less space, not drawing attention to myself, unless it was for my accomplishments. So, it was very tied… 
It's interesting, in some ways, I was always willing to challenge social norms, but at the same time, my mask was very, like norm-driven. Like, I wanted to not draw attention to myself. And so once that got deconstructed of like, actually, all of this is kind of garbage and I'm liberated to be me, a lot of identity ripples came with that. 
And I see that a lot, which I think is hard on family systems. If a person is partnered, it can be hard on the partnership. I think it's confusing for the people around the person of like, you discovered this one thing about you, but you've completely changed. But it actually makes a lot of sense when you think about going from a constricted narrative of self to an open narrative of self that is to question things.
PATRICK CASALE: That's really well said. I think that's actually like hitting the nail on the head with that sentiment of going from constricted to open. And I think that what we're really trying to draw attention to is the correlation and connection between unmasking and identity, and how often they go hand in hand because when you are able to safely unmask, you are able to really start to become much more aware of the things that you enjoy, the ways that you move through the world. You no longer have to put on this facade about like, this is how I present, this is how I dress, this is how I look, this is how I speak. 
So, it really can be a complete mind fuck in a lot of ways of like, okay, now that there is this openness and this understanding, that can create a lot of internal confusion too of like, "Do I even like the things that I said I liked, or used to like, or participate in?" And then you're like, "Do I even know myself?"
Like, I know that I've been in that stage for, maybe last year was a place where I really was deeply in embedded and entrenched in the like, "Do I even understand what I enjoy doing for fun? Or who I enjoy spending time with?" Like, I made me question everything.
MEGAN NEFF: Yeah, absolutely, absolutely. I experienced something similar. And I see that a lot. And that's part of that like social diffuse self, right? That comes with a mask of all of a sudden it's like, wait, what does bring me pleasure? What do I like? What are my preferences? Which sounds so basic and simple, but it's so complex? Yeah. 
So, I'm curious, okay. We've been kind of talking up here. Let's bring it back to like our experience. How have you changed both in kind of maybe like day-to-day basic, like, what you wear? What music you listen to? But also, conceptually, how you think about yourself? Like, what identity shifts have you experienced in the last year and a half?
PATRICK CASALE: I'm going to start with the easier portion of the question, which is like, how has my day-to-day changed? And I think like I've given myself permission to be open about my experiences that, you know, as an autistic ADHD human, I think that my clothing choices have changed drastically to really be sensory soothing. I definitely have started wearing more colors, too. I feel like used to be very muted. I think like very, like you said, not taking up space, not drawing attention to yourself. So, my wardrobe for so long was like black, blue, gray. And my wife was always like, "Do you want like a pattern or do you want anything?" I'm like, "No, I don't want any of that."
MEGAN NEFF: We went opposite directions with clothing. I went from colorful to black.
PATRICK CASALE: Yeah, I've really embraced brighter colors. And just like being more open, I think in terms of like the creative portion of myself, too. And the part of myself that really enjoys brightness and vibrance too because I think for so long, it was like very, very, very muted. 
I think that, also, what else has changed? Permissions, permissions socially. Giving myself permission. I set boundaries, so say no to even not have to explain myself in social gatherings about whether or not I want to be there, whether or not I want to make eye contact, whether or not I want to participate in conversations. So, I think that a lot has changed like that, in that regard. 
The more nuanced question of like, like how am I viewing myself or identity wise, I don't know, that's so complicated. I still think I'm in this phase where I'm really trying to embrace and openly like, boldly be okay with saying like, "This is who I am, and this is my identity, I am autistic." And I think that I'm just trying to be okay with taking up space because for so long, I never felt like that was something I was able to do or that I was capable of.
MEGAN NEFF: I love that. There's been a lot of change in the last year and a half.
PATRICK CASALE: Yeah, that's a lot change, for sure.
MEGAN NEFF: How has your wife and other key people in your life responded to that change?
PATRICK CASALE: My wife's been really a great support in that, in terms of like never really questioning anything. She doesn't like do a whole deep dive in terms of like, I would love for her to learn more about the autistic ADHD neuro type. I do think that she has been very supportive in my choices and like has really allowed me to say, "No, I don't want to go to this family gathering. No, I don't want to go to your friend's birthday party." Like, really being okay with that. 
So, she's been easy and that's come, honestly, pretty expectedly. Friendship-wise, I think that I've noticed the more open I've been, the more communicative I've been with my friend groups, the more I've attracted the friends that are neurodivergent, that are definitely autistic ADHD or one of one of the two. And I just noticed that, you know, I definitely have lost some friendships too from just maybe their own discomfort, or ableism, or just the inability to say like, I don't want to hear about this. Like, I don't want to talk about this.
MEGAN NEFF: It's become all of who you are. That's something I hear, like, people talk about the feedback they get a lot of like this has become all, like, reductionistic. People will accuse the typically autistic more so than ADHD like, "This has become all of who you are." Yeah, yeah.
PATRICK CASALE: What about you? How has [CROSSTALK 00:16:02]-
MEGAN NEFF: Oh, gosh.
PATRICK CASALE: …shifted for you along this way of like your discovery in the last [PH 00:16:07] five years?
MEGAN NEFF: I really wish like we could go back and you could, like, meet masked Megan Anna and that I can meet masked Patrick. 
One, I was a lot more feminine and a lot of color. I wore, like, skirts. It's really interesting. There's something about presenting feminine to the world that was pretty baked into my mask that I'm kind of still sorting out. Very, like, high achieving. I was, you know, going through graduate program, so very people pleasing, kind of like, "Tell me what to do, I'll do it." 
I rehearsed so much. So, I would probably spend hours, like, scripting and rehearsing. So, my language use, it is less scripted now. And so, even I mean, I've talked about this, when I listen to this podcasts back is really different than what would have been before. 
For me, autistic discovery did lead to more exploration around gender. And I know we're going to do an episode soon on gender and sexuality, but kind of broadly, so I use she/they pronouns, and then identify, probably, a gender I think captures it most closely, I connect to some experiences. Like, I connect to the experience of being an autistic woman or the experience of being a mom, but I don't feel connected to my gender, and I now have language, or I don't feel connected to the idea of being a woman. And then I have language for that. And then the way I dress, and the energy I embody. I feel like I embody that versus the really feminine mask. 
Sexuality, I've embraced my queer identity as a pansexual human. That's complicated. I'm in a, you know, hetero monogamous marriage, but even just the ability to explore what is my sexual, like, experience as a human is something that I would have had so much repression around. And like, impression management. I would say I just had a ton of impression management going all the time. 
What other? Similar to you, I'm more sensory soothing. Like, cloths, everything. I go out in the world a lot less, which you know, I talk about this a lot on the podcast. So, I just don't push myself to do things that exhaust me in the same way that I used to. 
I talk about mental health struggles in a way I never ever thought in my wildest dreams I would disclose. The fact that I disclose my past history with depression, suicidality, self-harm, those were things I had so much shame about, but because I now understand them, I can talk about them openly. 
So, just, I would say a general openness that terrified me before, that's new. And so I mean, the idea that we even do this podcast and talk so vulnerably, like, if you had shown this to me five years ago, I would have been horrified that my future self was doing this.
PATRICK CASALE: Now that your future self is present self and doing this, how is it for you to experience being open and vulnerable with the world because there are lots of people all over the world listening to you talk?
MEGAN NEFF: You know, just not thinking about it is helpful. So, thanks for putting that thought in my head, Patrick. 
I mean, honestly, though, I think because now it's not the Megan Anna narrative, it is a narrative that wraps into a much larger narrative, which is undiagnosed autistic adults, specifically, undiagnosed autistic women. Again, that's where I do feel attached to that experience of being an undiagnosed autistic girl growing up. 
And so, it doesn't feel like I'm sharing my narrative, it feels like, you know, it's part of this tapestry of a much larger narrative. And that gives me a reason to show up vulnerably. And without that reason, and without it being part of something larger than me, yeah, there's no way in hell I could do this.
PATRICK CASALE: I give you a lot of credit because I know starting out the conversation was I want to be able to drop in, and share some of this, and be more personable instead of more cognitive. I think you've really embodied that, which, you know, I think that, again, coming back to your statement of openness, you just use the word openness again. So, it really is going from that constricted, like, everything has to be really, I have to be vigilant about how I do everything. And even the things that I don't enjoy doing, I almost have to force myself through them, right? 
Like, and that comes to mind for me socially up until the last couple of years. And I think that's where I always struggled the most was socially and with sense of self as most of us do. And I really think that it's allowed me to identify in a way that has just, when I think of openness, I almost think of the word permission, and I just think about permission to just be myself. And it's still a process. Like, it's not a binary process, it's not a linear process of like, identity exploration. I think I'm still trying to find that true identity that I can really exist within, feel comfortable with. And that's just a work in progress. And I think that's a constant, almost existential questioning, and like analyzing, and introspection, and really being honest with yourself about like, what do I enjoy? What do I like? What are my preferences? When something comes up, am I just people-pleasing? Am I just saying yes, to say yes because I'm so used to, like, having to show up a certain way?
MEGAN NEFF: I love that. You keep going back to, like, preference, and what you like. I think starting with pleasure is so important. Just yesterday, I finally uploaded August workbook, which, oh my gosh, Patrick, I really need to rein it in. I was listening to our podcast from a few episodes ago, where I was like, "These workbooks just keep growing." This ended up being my largest workbook because it's so huge. It's 170 pages which is just, I need to rein it in. 
But on the chapter on unmasking, I start with, like the number one practice is follow your pleasure. And I start with that very specifically because so many of us are dissociated from our bodies, and our pleasure, and are kind of cueing into other people's preferences. That I think is such a powerful place to start with unmasking is to follow your pleasure with curiosity because that's going to tell you a ton about yourself. 
Like, for me, my unmasking, when I look back, like what was my first thing I did that was unmasking? I didn't realize it was unmasking at the time. And this feels like a silly thing to share. But I threw away, like, all of my lacy feminine underwear. 
A, it's uncomfortable AF. B, I don't even know why I ever owned that shit. Like, probably because culture says women should own that kind of stuff. But I threw it away because it's really uncomfortable. And I was like, "I'm never going to wear this." 
And that was a simple step of me following my sensory pleasure, my sensory preferences. And that started a whole rabbit trail of discovering both sensory delight but also gender. And so much of my identity discoveries have started by following my pleasure with curiosity.
PATRICK CASALE: I love that, I love that. Especially, you know, for everyone listening, that's an easy first step for you to start examining. And again, that gives me the perception, the image. I have this image of the word permission. Like, permission to do that, permission to probably really work through like not feeling ashamed about that, for a society like creating these narratives, to have permission to say like, this is not comfortable for me, I'm not going to do this anymore. 
And I think that's what we're talking about is like, and that can be simply as like, trying really, really hard to just even think about what it's like to experience a day inside and outside of your body. 
Like, I think about that so often as so many of us do. And the proprioceptive and interceptive just experiences, but I am constantly thinking about, like, what it's like to even be in my body. And I don't think I've ever been so aware of that in my life. And it's almost permission to just be uncomfortable being uncomfortable. And-
PATRICK CASALE: Go ahead because you [CROSSTALK 00:25:39]-
MEGAN NEFF: Oh, no, I love that, permission to be uncomfortable. How did you say it? Permission to be comfortable being uncomfortable? 
PATRICK CASALE: Mm-hmm (affirmative.)
MEGAN NEFF: Yeah. There's an acceptance that comes with permission that you're identifying versus resistance, which yeah, constriction resistance go together. 
PATRICK CASALE: Yep, absolutely. So, it's like, I think, for me, and for so many people I've talked to the permission with being uncomfortable, like, permission being comfortable with being uncomfortable because like, I'm not going to change this discomfort, this feeling that I constantly experience for the most part, but I can at least give myself permission to be comfortable with the fact that that is my reality and that is okay. 
And that has given me permission to just be like, I am uncomfortable. I'm noticing that. Like, I'm really noticing that moment by moment, I'm experiencing this feeling, or this emotion, or this sensation, and this is like, almost every day of my life. But it's okay because like, I'm not fighting so hard to change how I feel.
MEGAN NEFF: Right, right, right. Yes, I have a story. I think I've shared it on this podcast before of like walking to get the mail. And instead of just like, you know, constricting my body, and like dissociating, and sprinting down to the mailbox, I let myself experience the sensory, like, elements. Let myself experience being overloaded, but with openness. 
And I think this is so huge of creating space to be uncomfortable and being okay with it. I mean, it sounds a lot like mindfulness, when you talk about it kind of the way you're narrating your experience. 
I had a aha moment maybe like a year ago where I was working on some mindfulness stuff. And I was like, "You know what mindfulness really is when done like this? It's a radical form of self-attunement." Which for a lot of us, we haven't accurately been attuned to by others, by the world, we haven't accurately been able to attune to ourselves because of masking. So, when we can narrate this is an uncomfortable experience for me, I am overwhelmed right now, I'm anxious right now, and when we can self-attune, that's actually pretty radical work. It sounds simple. But that's significant.
PATRICK CASALE: Yeah, I agree 100%. And I will attribute a lot of this too. Like, you know, we're going to get to this in our second episode today. But a lot of you want to know, like, how do you get to this place? And a lot of it is doing your own work, a lot of it is introspection, but a lot of it has come through also just being in therapy, honestly, almost all of my life. 
And the narratives have shifted, right? Speaking, again, about identity. I, maybe a couple of years ago would have went to therapy for attachment-focused work, like, relational trauma, trauma within the family system, struggles I had growing up as a child, which are all certainly related to an autistic childhood experience without a diagnosis. And I wasn't going to therapy because I was autistic at the time. Now I'm going to therapy to figure out my own neurodivergence, my own experiences as an autistic ADHD human. And I think that has shifted over time as well. And the focal point has shifted too.
MEGAN NEFF: The focal point of your therapy?
MEGAN NEFF: Yeah, you know, I actually got this from a, I was on a podcast [PH 00:29:20] Divergent Pod and she's the one that gave me this lens, but I loved it. She talked about having the accurate lens and that's what autism diagnosis does. And I've used that language ever since.
And it sounds like you bring that into your therapeutic work. You are perhaps working on the right things but not with the right lens on and now [CROSSTALK 00:29:39]-
MEGAN NEFF: So, work on those things but with an accurate lens, which totally changes it.
PATRICK CASALE: Yeah, yep, spot on. And again, like, it doesn't change how hard the day-to-day is. I just wanted to say that too, for everyone listening. But it does give you the accurate lens and when you have the accurate lens things seem to, like, fit together easier. Like, things fall into place easier. I can make sense of things from a different perspective. And regardless of whether they are challenging or not, it allows me to at least understand them better. And for me and my brain, I need the understanding. Like, I am seeking it all the time.
MEGAN NEFF: Yeah, I mean, I think, I feel like you hit on this at the beginning of our conversation, but that understanding is so foundational, especially, for a lot of autistic people, we need to understand, which is partly what can trigger that kind of huge identity crisis in the aftermath of a self-discovery, or self-diagnosis, or medical diagnosis, or however you get there. 
PATRICK CASALE: However, you get there. I like that. And for those of you listening, like start with Megan's first tip. And also, I just recommend, like, when you are exploring, when you are trying to figure out what do I enjoy? What brings me pleasure? What brings me enjoyment? Double down on it, do more of it. Like, incorporate more of it into your life because we so often just default to what I think I'm supposed to do or like what I'm supposed to say yes to. 
So, I just really recommend that to try to be and like Megan said, curiosity is key as well. And just being curious about your own interests and your own likes. And really, really, really trying not to shame yourself for not knowing at first because I think that's quite typical in the process, when we are starting to explore, especially, later in life, especially, if you've gone through decades of your life, you know, thinking a certain way or experiencing life in one way.
MEGAN NEFF: Yeah, I love that. If I could sum it up in two words, I think I would, pleasure and play. Like, those are two things, I love how you said kind of, like, linger with the things that you enjoy. [INDISCERNIBLE 00:32:06] Winnicott who is a psychoanalytic thinker, I mean, the, okay, you don't even know who Winnicott is. He talked about play. And the way he talks about play is so fascinating. He talks about play is where culture is born, play is where identity is born, play is how a child developmentally learns who they are, play is the place of identity. And so, pleasure and play, that's where unmasking is, that's where identity discovery is.
PATRICK CASALE: And one, I absolutely love that. Two, this is why identity is so complicated and so nuanced because so many of us, especially, who are late diagnosed or diagnosed in adulthood didn't have that ability to have playfulness and attunement as children. And that's why it is so, so hard to identify your identity, your likes, your dislikes as an adult when you did not have that experience in childhood and why it can be so freaking hard to drop into playfulness as an adult.
MEGAN NEFF: Yeah, absolutely, absolutely. I don't know that I'll have the energy to do this anytime soon, but one project I've had in my head that I thought would be really interesting would be to go through Erickson's Stages of Identity Development, but through a neurodivergent lens to see, like, why we get stunted in certain parts more easily because of being autistic or ADHD. And I think that would actually be really interesting. I think there's a lot of ways being neurodivergent impacts our identity development, but play, like you just highlighted, being such a key one.
PATRICK CASALE: Absolutely. I'm not going to hold you to that because I don't want Megan to take on more projects these days, but it's a good idea.
MEGAN NEFF: You sound like my husband. He's like, "I just want you to learn how to take on less." Yeah, yeah, I need. But I mean, it would be really interesting. Someone should do it.
PATRICK CASALE: All can be true. All can be true. So, this is a great wrapping-up point, I think.
MEGAN NEFF: I agree, I concur. 
PATRICK CASALE: You are reading the room correctly.
MEGAN NEFF: You are reading the room correctly.
PATRICK CASALE: Yes. So, what am I awkwardly trying to do right now?
MEGAN NEFF: You're awkwardly trying to end the podcast. And then we're going to stop recording, and then we're going to record another one. But the listeners will hear it next week.
PATRICK CASALE: Yes, that's it. All right. Well, thank you so much for listening to the Divergent Conversations Podcast. New episodes are out every single Friday on all major platforms and YouTube. Like, download, subscribe, and share. And goodbye.

Friday Sep 01, 2023

Lived experience, awareness, self-identification, and self-diagnosis for autism and ADHD can have immense value, allowing us to connect with a community and share experiences that others may not fully comprehend. However, there are also risks of misdiagnosis and misinformation that can potentially cause harm.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, explore the hot topics surrounding misinformation, social media anecdotes, and self-diagnosis of autism and ADHD.
Top 3 reasons to listen to the entire episode:
Understand the importance of finding “data points” to look at the overall person and the importance of doing research on diagnosis using multiple sources.
Identify the reasons for self-identifying as autistic or ADHD.
Learn about the risks and benefits of self-diagnosis and how to make informed decisions.
If you relate to the experience of autism, ADHD, or any form of neurodivergent diagnosis that you hear about on social media or elsewhere, it’s important to gather information and research from multiple sources before fully taking on the identity that comes with a life-altering diagnosis.
Dr. Neff has tons of free resources available on her website, https://neurodivergentinsights.com, and Instagram page, @neurodivergent_insights.
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.
MEGAN NEFF: So, Patrick, there's a question I get a bit in interviews that I thought will be a good conversation thread for today.
PATRICK CASALE: Yeah, let's talk about it. I know before we hit record we were talking about misinformation and how things are communicated via social media and in the medical community. So, take this away.
MEGAN NEFF: Yeah, yeah. So, the question I get, and I don't know if you've gotten this question before, and I see it pretty much whenever an autistic or ADHD, like, clinician is interviewed by a mainstream outlet, I see this question often, which is, like, how do we feel about so many people self-identifying as autistic or ADHD? And then what do we do with the misinformation that is out there on social media about autism and ADHD? First of all, is that a question you've ever gotten before?
PATRICK CASALE: I get that question a lot, not only in, like, my personal world, but my group practice clinicians. Like, the Facebook community that I moderate it comes up pretty often. Thanks, TikTok for all of your services here. 
MEGAN NEFF: Yeah, yeah. Well, I'm curious, how do you typically respond to that question?
PATRICK CASALE: I'm a big proponent and advocate for self-diagnosis because I understand just the factors that go into trying to figure out how to schedule a neurodivergent affirmative assessment, the money piece, the accessibility, some of the discriminatory practices that are still in place. So, I think that I'm totally pro-self-diagnosis. 
I just get a bit concerned when someone listens to a 30-second TikTok video and comes away with a lifelong diagnosis that is like, "Hey, I listened to this video, it resonated. Now, this is how I identify." And I think it's a tricky line because you certainly don't want to dismiss someone else's reality. But I also think you do need more information than, like, someone speaking for 30 seconds on TikTok or Instagram. 
MEGAN NEFF: Well, and that's also very non-autistic. It's very non… Well, I mean, it might be more ADHD though, but it's very non-autistic to, like, listen to one reel and not do a deep dive that you spent months on. 
PATRICK CASALE: Yes, absolutely. So, that's where I kind of have the struggle mentally to think about if you are just hearing a couple of social media clips, and you know, in a reel, in a video, they're meant to be short, right? They're meant to be short snippets of information, and the takeaway is like, oh, I have this neurodevelopmental diagnosis condition, all of a sudden I'm identifying as autistic or ADHD. I just think it sets you up for a lot of potential misinformation. And I think it also sets you up for potential discrimination that may not even be valid or necessary because of the fact that this diagnosis may not be valid or accurate. 
MEGAN NEFF: Right, like I can imagine a lot of people, for example, with social anxiety might resonate with some of the things people share through the autistic lens, or complex PTSD, which that's a really muddy one to tease apart, to begin with. Didn't you make a TikTok about this and it went viral, and then you never went back to TikTok.
MEGAN NEFF: Well, do you-
PATRICK CASALE: [CROSSTALK 00:03:36] for following me down as I look down, showing that I'm completely mismatched in my attire right now. Yeah, I made this video about this, it went viral. I actually deleted the video off TikTok because I was getting so overwhelmed by how many views and responses, and comments that it was kind of-
MEGAN NEFF: It wasn't getting a ton of hate, I would imagine? 
PATRICK CASALE: Oh, it was, actually, no, it was like, actually, very supportive. But I felt very overwhelmed in responding. And I've told you before, like I have a struggle and issue with not being responsive to things. So, what I found that doing was consuming days of my time where I was like at a conference, speaking at a conference, but most of the time on my phone responding to people on TikTok.
MEGAN NEFF: This is why, like, every six months I'm like, "Do I just get off social media?" Although I'm a lot better, I wasn't at first round a lot better than you. I just don't respond. And actually, just yesterday I put up a automated email responder because I realized I was spending like two hours a day in my inbox, and it's not the quality of life I want.
MEGAN NEFF: But yeah.
PATRICK CASALE: You are a lot better than me. I will give you credit for that. I-
MEGAN NEFF: I'm less of a people pleaser than you, you're welcome. 
PATRICK CASALE: Yeah, I mean, I like to say I'm like a recovering people pleaser, but then I'm like, is that true? Because you're still people-pleasing. 
MEGAN NEFF: If you're like at a conference trying to get ready to speak, and you're like getting pulled into responding to people's TikTok comments, I would say you are not yet in recovery. I'm so sorry, Patrick. 
PATRICK CASALE: I just want to name that this conference was over a year ago. So, I feel like deleting TikTok off my phone and never going back on it is a first step, so-
MEGAN NEFF: But that's the enmeshment cut-off dynamic. So, in family systems, or in like, sorry, I'm like analyzing you, you can tell me if this is overstepping. I'm not analyzing you, I'm putting your situation in psychoed concepts. 
So, there's this idea, I actually think it's so helpful for family dynamics that the more enmeshed relationship is, or the more meshed the family, what often happens when one person starts to differentiate, which, typically, looks like putting up boundaries, responding differently to the family system, or the partner, if the other person or the family can't adapt to that what typically happens is cut off. So, you went from an enmeshment with TikTok to cut off, which is that typical, the more enmeshed you are, the sharper the cut-off will be. So, I would actually not say that was appropriate, Patrick, I would say that was a cut off, which is indicative of the level of enmeshment.
PATRICK CASALE: You know what's unfortunate? Is you're right. And also, I was only on fucking TikTok for like, a month at that time, and the reason I didn't want to go on it was because of my fear of like having to be responsive. So, lesson learned. 
But one thing you said that really resonates with me, and the topic that we want to talk about is the social anxiety piece because that is definitely where the majority of my comments were coming from, of like, I made a video about bottom-up thinking versus top down thinking. And that was the one that went viral. And what happened was, most people who experience social anxiety were saying, like, but that's my experience in a lot of ways, too. 
But my struggle area was to then make more videos to describe, like, the differentiation between social anxiety and maybe being autistic, maybe, you know, being ADHD or vice versa because I was just like, frozen in paralysis mode in response. 
But nevertheless, like, I would say, almost 80% of the responses and comments were from people who had debilitating social anxiety who were like, "When I walk into a room, this is how I feel. Like, this is what I experience." And then having to also describe like, okay, but that's in social situations, right? And that's where we're really highlighting the differentiation in diagnosis, and I think that, you know, what you're saying is, those are the things that often get misconstrued, that's where a lot of overlap and misidentification comes in is when we're talking about things that look so eerily similar in specific facets or areas of life. 
MEGAN NEFF: Yeah, yeah. And this is where, like, so my bias, right? And why I started making the Venn diagrams I make is because my assumption coming from the medical system is typically these get misdiagnosed the other one, in the sense that autism gets messed, ADHD gets messed and the anxiety gets diagnosed. So, it's interesting to have, like, come into this world as trying to make a corrective. And then whenever I dip out of this world, and I go, like when I get interviewed by a mainstream outlet, the question is like, what do we do with all this misinformation of people worrying the opposite, that people are over-identifying? 
And that's where I think we have to have these conversations in relation to each other, like in a dialect of, to talk about this misinformation on social media, which I think there's lessons than people often… I think the medical community often projects a lot of misinformation on social media. Of course, there's misinformation. There's misinformation everywhere.
MEGAN NEFF: But we have to have that conversation and conversation with the fact that the medical community has misinformation in the sense that training programs have not caught up to the most current research on non-stereotypical presentations, and autism, and ADHD. 
And so, it's really interesting. I feel like there's this, like teeter-totter effect happening that creates almost a polarization between medical community and social media. Like, I don't know about you, but I'm in Facebook groups with, like testing clinicians, and clinicians, and the derogatory things I hear about like, oh, all these TikTok autistic, you know, TikTok referrals or-
PATRICK CASALE: To be autistic these days is what I hear a lot of it's, you know, cool to be ADHD, and that it just feels like a movement in terms of what people used to say and almost a stigmatizing way of when people used to self-diagnose as bipolar very often, and people would say, "Oh, it's really cool to be bipolar." Or like to claim that status. And I think that's what there's still a lot of discrimination and ableism even within the mental health and medical communities saying things like that, or using outdated terminology like Asperger's, high-functioning autism, low functioning autism, ASD, etc. And it's interesting the way that these conversations are being framed in these environments, too. 
MEGAN NEFF: Yeah. And I guess that's, I mean, right? This is kind of what we do is nuance. I guess I want to have a conversation that holds the both end of like, yeah, there probably is an oversimplification of autism and ADHD happening on social media. Like, there's really valuable education on there, specifically, for people with intersecting identities that are often misrepresented or underrepresented in the research. And so, the whole the complexity of like, neither one of these extreme narratives, like the extreme narrative on the other side, being like the medical community totally doesn't get it. Like, only social media…. I mean, that's not really the narrative, I don't know what the extreme narrative is. But-
PATRICK CASALE: Yeah, it feels like an extreme narrative, right? Like, the medical community doesn't get it, or social media community always gets it wrong. Like, I think that's the polar opposite. And both are simply pretty inaccurate, I assume. 
MEGAN NEFF: Yeah. It's somewhat like both are true and both are wrong. Like, they're right in the middle [CROSSTALK 00:11:49]-
PATRICK CASALE: …mental health, like, professional thing to say. 
MEGAN NEFF: Yeah, yeah, yeah.
PATRICK CASALE: The both ends are true, right? And this is a very nuanced conversation. You're bringing up so many really important points that get overlooked so often. So, if we're talking about social media content made by other neurodivergent people, especially, with intersecting identities, people who have been marginalized, not only is this information accessible on social media, it's fucking free. Like, it's free. So, why would I not listen to the people who are showing up and talking about their own experiences in that way?
MEGAN NEFF: Yeah, and that's where, like, I love the emphasis on lived experience of like lived experience, well, Sony Jane, I really love their content, I think their hashtag is literally lived experience education. Like, I love, and I see that term being used more now of kind of blending lived experience with clinical expertise. And that's a really important corrective is to highlight the lived experience so much of ADHD and autism has been defined by what people on the outside observe, right? So, like, think about the DSM, it's these behavior check boxes of things that can be observed by an outsider. And all of a sudden, what social media has done is it's opened up people to talk about these things from the inside, which is really, really powerful.
PATRICK CASALE: Yeah, and I think that these conversations need to be had from both sides. So, we always think about, like, how do we bring things closer together, though? Like, what's the answer here? Because it still seems like there is a big disconnect in between, like, medical mental health community, actual lived experience, and then the validity when it's talked about within those communities of like, are we going to take lived experience at its face value? Are we going to say this is valid? And of course, it is, right? But I do think that there are a lot of professionals who would still say like, "Oh, no, we need to do X amount of research, we need to do these tests." 
But these things can be so excluding or discriminatory, and you're not seeing a lot of our research be founded on people of color, or people in the trans communities, or people of the queer community in general. So, I guess my take on it is that where is the middle ground in this?
MEGAN NEFF: Yeah, I mean, I think, gosh, this makes it sound like I'm like, I don't know, I don't want to, I think whenever you start talking, okay, I'll just say the thing and then I'll say, I don't want to monopolize information, and I'm afraid this is what's going to sound like it. But like I'm seeing more and more autistic researchers or more and more autistic clinicians. The reason? Because I fall into that category, I'm like, "Oh, that makes it sound like I'm the only one valid to talk about it." That's not at all what I'm saying or thinking but I do think we are the bridge of like people who live at the intersection of both kind of traditional research institutions or traditional clinical spaces, and then lived experience. 
And I'm seeing more autistic researchers kind of come out and collaborate, and it's really exciting. And probably, also, ADHD. Again, I'm not seeing the same level of community around it, as I see around autistic researchers. But I think that is one of the ways that we bring these worlds together.
PATRICK CASALE: Yeah, I think that's a great point. Why do you think it is that we're not seeing as many ADHD researchers, in your experience or in your perspective?
MEGAN NEFF: It's interesting, this is going to, like, rabbit trail us, but I think maybe to an interesting conversation. Like, I know several psychologists who are ADHD or even researchers, but it's not as a focal point of their identity. It's even interesting, I was going about this with my own experience, when my daughter was diagnosed with ADHD, I didn't jump off into like, a huge research dive. I didn't get curious because I was ADHD. I was just like, "Okay, that explains things moving on." 
And maybe it's because I was so exhausted with everything I was managing and when she was seven, my son was three, I was in the middle of a study program. But when we discovered she was autistic, like, I dove headfirst into that. So, that's been interesting to reflect on even my own experience of, I feel like autism has become a much more focal part of my identity than ADHD. And I see that among the professionals I know who are ADHD. Like, they'll share it sometimes. But it's not like they're joining like ADHD research Facebook groups, it doesn't feel like it's as central to their identity in the same way that I see it happening in autistic spaces. Of course, there's going to be variants there. I don't know, do you resonate with that? Do you observe something similar? 
PATRICK CASALE: Yeah, absolutely. I think you and I have talked about this before with our own identifications within this podcast that we tend to talk about autistic experience significantly more than ADHD experience. And I think that what I said whenever this conversation came up last time was that it feels like there's still a significantly more stigma around autistic experience and diagnoses. And I wonder if that's why we don't see as many people who are consistently identifying as ADHD in all areas of life comparatively to most autistic people, where I see that becoming more of a place where people are really centering around their identity as if like, I want to own this and I want to claim this. 
MEGAN NEFF: Yeah, the other thing.... So, it's been interesting, I've heard so many talk about this and I really like their perspective, where they actually say, like, ADHD advocacy is behind autistic advocacy, in the sense of like ADHD pride or stigma, which, that was interesting to me because I probably would have had the inverse assumption. But the part when they were talking about like, ADHD pride, I was like, yeah, like, there's so much stigma and maybe it is kind of that pendulum, like because there's so much stigma a lot of autistic people we've really leaned into autistic pride to counteract that. But it's developing. But I would say the same level of like, pride in ADHD culture is not where autistic culture is. Again, it's going to depend on what spaces you're in.
PATRICK CASALE: Yeah, that's really interesting. And I imagine you're right. Like, it would depend on which spaces you're in, and showing up in, and following, and participating. And I know that if I'm thinking out loud, like, about most of the Facebook groups that I'm in that I'm not participating in them, never just in them, mostly, are autistic spaces. And this is maybe my own bias coming up or my own, you know, is that like, I've always assumed I was ADHD. I think that was always just a part of my reality where young cishet white boy who has struggled sitting still, that was always instilled in my mind at a very early age, even though a lot of that was through an ableist lens. I think the autism diagnosis for me was much more life-changing than my ADHD diagnosis when I received that because I was just kind of like, "Yeah, I think I knew this." Like, this was not shocking to me. The autism diagnosis, like I've talked about, was really life-altering in a lot of ways and has really informed how I view the world in a lot of ways too.
MEGAN NEFF: Yeah, you have talks about that and I've heard it when it's like, there's like a shattering moment, like the before and the after I hear in your story when you talk about and not necessarily in a bad way, just in a like, the world and the lens I see the world and myself is forever different. That it sounds like with ADHD diagnosis that moment and that happened.
PATRICK CASALE: No, I don't even think I really gave it a second thought in the moment. I was just kind of like, "Okay, this makes sense. There are a lot of executive functioning challenges. I definitely struggle with certain aspects." But now, I think it's the social component for me. Like, the realization that the autistic piece was really the driving force behind a lot of self-discovery and diagnosis was, like I've talked about the feelings of loneliness, and disconnection, and alienation, and just never feeling like I belonged. I wanted answers for that. And I think that sounds like a lot of people who I've talked to about their own autistic diagnosis journeys of wanting answers, really wanting a deep dive, and really wanting to get clarity.
MEGAN NEFF: Yeah, yeah, and like the mystery solves. And I actually do feel like, I think that is a shared experience, the mystery solves. Like, I've talked about this on here before how I felt like there was like 100 mysteries that I want to get answers to that were solved when I discovered I was autistic.
But actually, I feel the same way about ADHD. Like, when my spouse and I moved in together, so we, you know, said we were raised really fundamentalist, so we didn't live together till we were married, which honestly, get his thoughts when he listens to this, I don't know if he would have married me if we did live together before because I'm messy. I'm so messy. And he was so confused by it. Like, why don't you close the cabinets? Why don't you like, because I would just, you know, I open cabinets, I leave them open, what, what. Now I've trained myself to close cabinets mostly. 
But it like really shocked him, I think how messy and disorganized I was. And there's so much there around my struggles to just, you know, adult, as they say, that ADHD really did help answer.
PATRICK CASALE: Yeah, and I wonder if I just am… that so much of me is, if we're weighing out like parts, like much more autistic than ADHD because I have simple struggles [CROSSTALK 00:23:10]-
MEGAN NEFF: Yeah, when you show me like your inbox or your computer screen, I'm like, where's the ADHD? What doesn't it look like mine? 
PATRICK CASALE: It's really in the spontaneity, and the creativity, and the like bursts of stimulation that I seek, like, I don't have the struggles where I'm like everything in my office is so regimented, and orderly, and everything in our house is so regimented and orderly. But then if I try to cook a meal, I can't put those two pieces together. And I really struggle, and you know, I'll-
MEGAN NEFF: [INDISCERNIBLE 00:23:46] out of the steps is that, yeah-
PATRICK CASALE: Yeah, it's really challenging. So, it's interesting, as I observe that more and more because, you know, you and I have talked about, like, ADHD part got really creative and agreed to all these, you know, projects. And now, autism is like, why did you do this to me? You know, like, that's how I feel all the time. 
MEGAN NEFF: Yeah, yeah. 
PATRICK CASALE: Yeah, so I don't know. I'm still trying to figure and parse that out for myself, honestly.
MEGAN NEFF: Yeah, yeah, yeah. I was about to ask, like, based on your office, your computer, which I've seen, at times, I was about to ask, like, do you have executive functioning struggles, but it sounds like you do with the sequencing piece. 
PATRICK CASALE: Sequencing is very challenging. I will definitely have situations where I have to also diverge into multiple spaces to communicate with people and I think that can irritate and rub people the wrong way at times when I'm like, "Here's a message here, here's a message here, here's a simultaneous conversation going on all over the place." That has always been a big struggle for me.
I don't know, I do have executive functioning challenges, but I don't think that they're as significant as a lot of people who I come in contact with or spend time with, or coach, or communicate with. My issues are typically social struggles, mainly. Like, the social piece is real. That's the big kicker, for sure. 
MEGAN NEFF: So, more autism?
MEGAN NEFF: Yeah. I'm switching my camera because it was like bobbing which if I was a listener, and I was watching that, that would drive me crazy. So, that's why I-
PATRICK CASALE: [CROSSTALK 00:25:46] for everyone watching right now. 
PATRICK CASALE: I think my noise-cancelling headphone battery just died because now I hear this, like ringing outside. I hope you cannot hear it. But yeah.
MEGAN NEFF: I'm sorry, the world of tech issues. 
PATRICK CASALE: All happening at once, crumbling down before your eyes as we're talking about, like, misinformation around social media and technology.
MEGAN NEFF: We diverge pretty far there. So, let me ask you this, like, okay, so yeah, the mainstream question is often like, are you concerned about this? Would you say you are concerned about misinformation on social media with autism and ADHD?
PATRICK CASALE: I feel like Megan just caught me in like this trap right now because I'm like [CROSSTALK 00:26:40]-
MEGAN NEFF: It's a terrible question and you don't have to answer it. The reason I'm asking is because like, it's what mainstream media likes to ask people like you and me. And my elevator response is, well, we've got to have that conversation in relation to the misinformation in the medical community. And that's kind of how I sidestep the question.
PATRICK CASALE: Right. If you had to give a yes or no answer to that?
MEGAN NEFF: I think, I have, let's say, how have I said this before? I think I've said the benefits of like lived experience awareness being out there, the benefits of self-identification and self-diagnosis by far outweigh any so-called risks. And I guess the risk being someone might misidentify. Like, I know there is this idea out there, like, are we diluting the diagnosis? And I think, again, you've just got to have that conversation in relation to how many, like, the underdiagnosed groups, like, I mean, how appropriate, right, that the moment, you know, people of color, women, gender queer people start getting diagnosed where like, "Oh, these diagnoses are being diluted.
So, I guess I don't really answer it. Well, I mean, I guess I do answer it, I say the benefits outweigh… And I find it is interesting, what are the risks, I guess, the risk being if someone identifies with an inaccurate diagnosis, and let's say it is social anxiety. You know, there's really, really good treatment for social anxiety. So, if it deters them from seeking treatment for social anxiety, or for complex PTSD, and like healing their nervous system, then yeah, that would be unfortunate if it's like they've misidentified as autistic and then decided this is part of my baseline experience because I'm autistic, but it's actually social anxiety, and therefore they never get treated for social anxiety. Like, yeah, that would be really unfortunate for that person. 
There might also be benefits, they might connect with a community that they feel, like, deeply connected with, they might forge some meaningful connections along the way. But yeah, I would say that's actually a risk now that I'm thinking out loud. 
PATRICK CASALE: So, this is why I think this conversation is so nuanced, though, because it's like, the answer is like, do you think that social media and diagnosis and misinformation is a bad thing? The answer is like, yes, and or no and, right? Like, depending. But I do think like you mentioned, benefits outweigh the risks, then that's my perspective as well. And I think you're absolutely correct. But there is room then for someone to unfortunately struggle more in certain areas that they don't necessarily have to. Like, they have the accurate information. 
MEGAN NEFF: Right, right. Exactly, is that they might be embracing something about themselves that is actually very treatable.
PATRICK CASALE: Right. And who knows how long that can go on, it could be a lifelong experience, right? Like, ultimately. But I also think about the flip side about how many times I've been misdiagnosed in my life with things that definitely were not an autism diagnosis. 
And then there's the flip side of trying to treat these "treatable" conditions like social anxiety, complex PTSD, managing bipolar disorder symptoms, to no avail because we're looking at it from the wrong lens because the medical or mental health community got it wrong. 
MEGAN NEFF: Exactly. 
PATRICK CASALE: The evaluations or tests or assessments are very, very brief, 45-minute clinical interview where I answered questions a certain way.
MEGAN NEFF: I see bipolar get diagnosed so quickly by, particularly, psychiatrists not to throw psychiatrists under the bus, but like, I'll maybe be working with someone for like, years, and then they go to have one appointment with a psychiatrist and psychiatrist is like, "bipolar" after a 45-minute interview.
PATRICK CASALE: Yeah, just like that, then you're on mood stabilizing medication and…
MEGAN NEFF: And that's a hard one because once it's on your record, like, providers are pretty cautious to put you on, like, an SSRI and classification of antidepressants. So, it's really hard to ever get it off your record because people… and actually, again, I think, oh, gosh, nuance, right? Like, I think if someone has been diagnosed with bipolar, and it's warranted, like it was actually a good clinical interview, do you think it's good to keep it on the medical record because you do want to know about the risks of triggering mania. 
MEGAN NEFF: But if that was a diagnosis put on after a 40-minute interview that didn't consider it ADHD and autism, like, yeah, that's really unfortunate.
PATRICK CASALE: And I think that happens so often. And we talked about some long-term impact of certain and specific diagnosis when we're talking about like life insurance, and, you know, potentially employment when they're running background checks too. Like, diagnosis carries risk. And it is also a nuanced conversation when we're talking about diagnoses. So, like, I think that's why this conversation is so complicated because if we're talking about the mishaps with the medical system and the mental health system, which we kind of touched upon last week, I mean, or, yeah, last week, we're talking about very brief clinical interviews, for the most part where these people don't have enough time to really assess or not appropriately train to assess. And you leave with a diagnosis after being asked like, what's your family history? What's your own history? What's your involvement with substance use? What's your risk-taking behavior? Okay, well, now I'm leaving with this diagnosis that is probably not accurate. And that's really frustrating for me.
MEGAN NEFF: So, yeah, it's tricky, right? Like, a clinical interview is a really fine tool, right? In the sense of these have been finely tuned over the years. So, like for the bipolar clinical interview is not that complicated, in the sense that if you meet this criteria, okay, but here's where it does get tricky and where I wish clinicians were trained. And so, the MDQ is the screener that essentially assesses for presence of mania and it'll ask, so things like kind of more risk-taking behavior, inflated sense of ego, kind of flight of ideas. And then It'll ask, you know, I think it's five or more of these present in a given window of time. 
What we know is that that screener is also sensitive for ADHD combined type and ADHD hyperactive type. So, if a clinician knows that, then you'd want to get a sense of like, okay, so these experiences that you're describing, like, let's really, like is how much is just part of your baseline? And then I think you'd want to do, well, you absolutely would want to do screenings for ADHD too. 
How did I get on this? Where was I going? Oh, clinical interviews, I think are good tools, but when you're not thinking about what else explains this, that's when they go awry. So, especially, with bipolar, if you're not thinking what else, specifically, ADHD or autism that explain this, and most clinicians aren't because the way we've been trained to think is that those ADHD and autism would have been caught in childhood, so why would it be on my radar if I'm assessing a 32-year-old?
PATRICK CASALE: Absolutely. And also, like, you and I both know what it's like behind the scenes in certain clinical environments where you just are, like, seeing clients, seeing clients, seeing client, and that does not always lend itself to be thinking and conceptualizing from that perspective. And it's much more about just like, let's get this done, like, I need to see the next person, I have productivity requirements, like…
MEGAN NEFF: And you're thinking about risk, risk reduction and if you are questioning this person might be bipolar from a risk reduction standpoint, it is… I'm not saying this is right, I'm talking about, right, like, in a clinical mind, I could see why it's less risky to diagnose it and be cautious because, again, you want to be thinking about medications that might be triggering mania. That's not a diagnosis you want to miss. And so, I could see why if someone's in the gray area of is this bipolar or not, and again, they've got 45 minutes, and then moving on to the next person, and they're deciding do I put you on an SSRI or are you on stabilizer? Like, why they would make that decision? Is it like from a what medication they put you on, it can be seen the less risky choice? 
PATRICK CASALE: Yep, yep. Absolutely. And, you know, I think because on your, you know, Megan's Venn diagrams that she puts out for, was it Misdiagnosis Monday?
PATRICK CASALE: Which are so, so helpful to acknowledge that those overlaps, right? Whether we're talking about mood disorders, complex PTSD, or we're talking about social anxiety, the overlaps, that's also what is being talked about in very brief 32-second clips on social media and how you could simply just be talking about that overlap without understanding of the differentiating factors, and how easy it can be to then all of a sudden say, okay, that is my reality.
MEGAN NEFF: So, like, one misinformation piece I see on social media a lot, there's like, I see this kind of move to a monopolizing experiences or traits or symptoms. So, for example, you'll notice in a lot of my Venn diagrams, sensory issues is often in the middle because, you know, sensory processing disorder is not technically a DSM diagnosis anymore, but like, there's a lot of people that can have that outside of autistic people, ADHDers are more likely to have sensory processing, sensitivities or sensory processing disorder. 
When we're anxious, our sensory system is running on kind of a heightened level, so we're going to have more sensory issues, OCD tracks with sensory differences. There's like two sensory systems that tend to be more impacted by OCD than others. PTSD, again, the nervous system is on fight-flight alert so everything's happening through a hyper arousal unless they're dissociated. 
But I see this a lot of like, oh, if you're sensory sensitive, you're autistic. That kind of misinformation I do see on social media. I'm like no, like, we don't monopolize sensory sensitivities. 
So, actually, now that I'm thinking about it, you're right, there is some like misinformation on social media that kind of gets me upset.
PATRICK CASALE: That is a wonderful example of how complex and nuanced this conversation is because it's like, oh, those little aha moments where you're like, "Oh, yeah, that is problematic, right? Like, that can be a major issue." So, I think we could have a whole damn series on misinformation. And it's just a conversation we want all of you to start thinking about in a very nuanced way where it's not black and white, and that things do get missed, and that there is misinformation out there. And I do think you have to really do deep dives when you're thinking about some of the stuff.
MEGAN NEFF: That felt like concluding remarks, Patrick?
PATRICK CASALE: That's what we're going to start calling concluding remarks instead of [CROSSTALK 00:39:07]-
MEGAN NEFF: I don't think Megan Anna, that's weird, I just talked about myself in third person. I don't think I ever do the concluding remarks. It's probably because I don't have very good summarizing skills.
PATRICK CASALE: I also have, like, time urgencies. I think that's why I'm like, okay, yeah, time to conclude. But I do think it is time to conclude, or we could do awkward goodbyes. But I think that there's so much ambiguity, ambiguous space. I can't use that word ambiguous. It's ambiguous. Like, this conversation is not black and white. It's not binary. And there is a lot of middle ground and I really encourage all of you, if you're not, to check out Megan's work about misdiagnosis. Megan lays this stuff out, I don't want to say better than anyone, I might be biased. 
MEGAN NEFF: Don't say that, that's way too much pressure.
PATRICK CASALE: No pressure here. It's really helpful. It's really, really helpful. So, check out Megan's website, neurodivergentinsights.com, check out Megan's Instagram Neurodivergent_Insights. Like, it's so helpful. And I cannot say that enough. Like, my clinicians use your stuff all the time. They share it constantly. And it's helpful in addition to whatever you're hearing in your medical appointment, or mental health appointment, or whatever you're hearing on your TikTok series, or Instagram. Like, really combine those things. That's what I think is important is to combine lots of different aspects.
MEGAN NEFF: I like that. Yeah, make a, now I'm going to try say that word… maybe I would, smorgasbord.
PATRICK CASALE: Yes, you said it right, I think, yeah.
MEGAN NEFF: I said it right? Oh, my gosh. Yeah, like a potpourri board [INDISCERNIBLE 00:40:57] like, yeah, I love that idea of combined. Like, just making sure that we're getting our information from multiple sources is a really good way to kind of, yeah, I think, have a more robust frame on any of these things.
PATRICK CASALE: I like that. I can't wait for the transcription to come out on that. Yeah, make a smorgasbord of potpourri, a charcuterie board, like just piece this together instead of just taking information from one source. And I think that's really important in any sense in society. But really important when we're talking about life-altering diagnoses and understanding I think that's a really important part of this. And I hope that's the big takeaway today. And I also want to acknowledge that we weren't all like doom and gloom the entire time. And we offered a lot of insight.
MEGAN NEFF: Oh, sorry, I'm backtracking data points. I talk about data points a lot with people. So, like, there's a ton of free screeners online, both for ADHD and autism. Those are data points, talking to people in your life, those are data points, listening to reels and Tiktok, those are data points, leading with your doctor, data point. And some of those data points are weighed more heavily than others, but I like the lens of like gathering data points. 
PATRICK CASALE: I love that. And that is a perfect ending. So, thank you so much for listening to… I almost said Neurodivergent Insights. Thank you so much for [CROSSTALK 00:42:22] listening to Neurodivergent Insights. Thank you for listening to the Divergent Conversations Podcast. New episodes are out every single Friday on all major platforms and YouTube. Like, download, subscribe, and share. We'll see you next week.

Friday Aug 25, 2023

Self-disclosure of an autistic diagnosis in medical situations or even everyday life is a very vulnerable thing to do, and there are so many results that can come from it.
Self-disclosure can result in both negative and positive experiences including everything from insurance challenges and negative societal assumptions to better accommodations for sensory issues in medical situations and quicker access to neurodivergent-affirming healthcare providers.
This mix of results can make the decision to self-disclose or even seek a diagnosis in the first place a very tricky choice. 
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, cover the topic of self-disclosure for autism diagnoses and share their personal experiences, both good and bad, around self-disclosure as autistic individuals diagnosed in adulthood.
Top 3 reasons to listen to the entire episode:
Understand the complexities of disclosing autism diagnoses and the various implications it can have on one's life.
Understand the complications and stigma surrounding getting treatment with medication for neurodivergent individuals who are struggling with chronic health issues.
Learn how to tailor self-disclosure to meet specific needs and goals during medical visits.
Self-disclosure in medical settings can be complex and feel vulnerable and is not always right for everyone and every situation. However, if you choose to do so, using the method of partial self-disclosure to tailor care to your individual needs and finding healthcare providers who are neurodivergent-affirming and willing to learn about you and your needs can help reduce stress in medical situations.
Autism Acceptance In Medical Care: This infographic talks through steps medical providers can take to be more Autistic aware and inclusive: https://neurodivergentinsights.com/autism-infographics/autism-acceptance-in-medicine
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.
MEGAN NEFF: Good morning, Patrick.
PATRICK CASALE: Good afternoon, Megan.
MEGAN NEFF: Isn't that funny? It's your afternoon, it's my morning.
PATRICK CASALE: I know, it is.
MEGAN NEFF: It was actually like a perspective shift moment. I was like, should I say good afternoon because it's Patrick's afternoon? Or should I say good morning because it's my morning. Good subjectivity are we going with here.
PATRICK CASALE: I like that. And I think it's important for everyone to know that, you know, you're in Pacific Time and I'm an Eastern Time. So, a little bit of a different experience.
MEGAN NEFF: Yeah. Well, I'm not going to ask you how you are because I hate that question. But I am curious, like, what kind of headspace you're coming into today's episode with?
PATRICK CASALE: I like that you name that you hate that question because you've told me you hate that question [CROSSTALK 00:00:48] so many times that I no longer ask of that. I don't that.
MEGAN NEFF: I can say like, I had to train you a little bit, but like it worked. You no longer ask.
PATRICK CASALE: Also, I'm like not doing that with friends or family. Or, you know, so anyone who's listening, I owe that all to Megan.
MEGAN NEFF: You're so welcome.
PATRICK CASALE: There you go, that's your gift today.
MEGAN NEFF: [INDISCERNIBLE 00:01:11] friendly now because Patrick has stopped asking how are you?
PATRICK CASALE: Yeah, I've also really tried hard to, like, filter my emails through an autistic lens and longer like, unless I absolutely feel like, "Oh, I really want to pitch this thing and it has to come across this way." I've really tried to shift that. 
What kind of headspace am I in today? I feel actually pretty good. I am tired, like physically tired. I sent you that really gnarly bruise on my calf. I feel like my whole body feels like that right now. I noticed like I have a retreat that I'm hosting next week, so I have been in like hibernation mode most of the last couple of weeks just trying to like, charge as much of my battery as I can. And right now, like, I feel pretty good. How about you?
MEGAN NEFF: Let's see. Okay, I'll start with the sensory stuff and start with that, I'm having like a high sensory day of like, it's so interesting how these things ebb and flow. Like, I want someone to wrap me up really tight in a blanket, and like, I want all the pressure and all the way. Like, last night my husband came in, and he was like, "Are you wearing two beanies." Like, I had two beanies on my head. I love the pressure of beanies on my head. That's why I wear a beanie like all year round. So, having like a high, like, I just want a lot of pressure on me. 
Headspace-wise, like tired, but then burpy. Like, so many thoughts popping around which… and then, that's always interesting when that's overlaid on top of like, tired, but energetic. And then, yeah, we're leaving for Canada next week, and I've got a workbook to finish. This is such an autistic thing because I'm also doing a manuscript. So, my intention was like, I'm going to make a really simple workbook this month, it's going to be a gratitude journal, I'll introduce gratitude in five pages, it'll be a 35-page thing. Do you want to know how many pages it is?
PATRICK CASALE: I want to guess but I feel like it's at least like 90.
MEGAN NEFF: Yeah, it's 127. I don't know how to do simple. Like, it just grows and it grows and it grows. And my husband, he used to be an English teacher, so he like added [PH 00:03:24] suits for me and he's like, "Yeah, I just know this about you. Like, you can't do simple."
PATRICK CASALE: That's the second week in a row where you've kind of mentioned, well, maybe you mentioned it to me through texts that just the understanding that he has of your processing. I love that for both of you, to say like, I know this about you now. Like, this is a part of who you are.
MEGAN NEFF: Yeah, you say you're going to make a 30-page workbook and it's 120. That's you, that's your brain. And I'm going to edit 130 pages.
PATRICK CASALE: Right, right. Well, yeah, it's a united front, so that sounds pretty good to me.
MEGAN NEFF: Yeah, yeah. No, he's wonderful and super helpful because grammar and spelling is not my thing. Okay. So, we talked about talking about kind of continuing the conversation. Wait, did I just abruptly transition us too quickly? Do you have…
PATRICK CASALE: I feel good about it.
MEGAN NEFF: I had, like, a [CROSSTALK 00:04:26]-
PATRICK CASALE: …today unlike a lot of my days where I'm like scattered in and I feel pretty centered right now.
MEGAN NEFF: Okay. Yeah, it didn't go off my head, like this is interesting. But our listeners might want us to get to the point. 
MEGAN NEFF: So, yeah, I really loved the conversation we had with Mel last week. I think both of us walked away with like, wow, that was so I'm impactful and interesting. And there's so much to dive into here. 
And it got me thinking about some of my experiences medically and especially, experiences around self-disclosure, and I know that is a really tricky subject around if you're in a position where you have the option, if you're going to self-disclose or not, not everyone has that option. Like, if you're diagnosed as a child, it's in your medical record. 
But for those of us coming at this in adulthood, we sometimes have that option, do I self-disclose? And navigating medical appointments. Like, that's a really vulnerable thing. And I don't know about you, but I know for me, and I think for a lot of autistic people just walking into a medical office, our anxiety, like, shoots up, and then, to talk about disclosing on top of that, like, it's just a lot. So, I thought it'd be interesting to have a conversation around, like, self-disclosure, navigating medical systems.
PATRICK CASALE: Yeah, one, I just want to say that I feel like if you are listening right now, and you listen to last week's episode, my mind was like blown throughout that conversation where I was learning so much, not only about myself, but what a just incredibly helpful conversation all around. I've already told so many friends to listen to that episode because I was like, "This is so good." We haven't even released it yet. So, as I'm tracking what I'm saying, most of you who are listening are like, this is happening in real time and we have a queue of episodes.
MEGAN NEFF: That's why last week you were like, "Can we bump this up?" [CROSSTALK 00:06:19].
PATRICK CASALE: I was just like so excited, it was so good. Yeah, so the self-disclosure piece is interesting. And you're right. Like, for those of you who were diagnosed as a child, it feels like that autonomy was kind of taken away from you. Like, you don't have the option to say yes or no, I want to put this into my record. 
And I think it's interesting because if you don't have a good relationship and rapport with your PCP, or whichever provider it is, I think it's daunting, and intimidating, and even more anxiety-producing to even consider disclosure because we know that diagnosis follow our medical records. Like, these are things that are charted, these are things if you're using your health insurance, like, they're going to follow you. And that can have an impact in a lot of ways. Like, even when you're looking for potential life insurance options, like things like that might. 
My last life insurance update and exam I got denied increased coverage because of my throat condition and my autistic diagnosis. Both of those things were notated in my request to increase my coverage.
MEGAN NEFF: Really? Okay, so I've like heard stories about this, but I see you actually had that happen, and you wanted to increase life insurance to like, so if you die tomorrow, and they were like, "No."
PATRICK CASALE: Yep, yep. I wanted to increase for my wife, you know because I'm like, "Okay, I'm in a position now where financially I'm making more money than I was when I first did this." And I want to make sure she's okay. Did all the tests, did all the medical tests, and they don't really give you a whole lot to go off of other than like, "Hey, it was rejected. Here are the comments." And the comments are Zenker's diverticulum, which is the third condition that I have, and autism. 
And I thought, "Huh, well, that feels pretty shitty." Now, I don't feel like I will ever pursue this option again. And I think that is also something to consider when we're talking about disclosure and diagnosis.
MEGAN NEFF: Yeah, I mean, these are some of the concerns I hear. Like, there's kind of like five big concerns, but one, like life insurance, but then, also being denied like insurance, if you're trying to… and I should also add, like we're speaking in the US context, I'm sure some of these things would apply internationally. But obviously, like insurance in the US is just a hot mess. So, some of this might not apply internationally. But…
PATRICK CASALE: It's a great point because I know that we actually have so many people who are tuning in consistently from the UK, Ireland, and Australia, and Canada. So, one, thank you. And two, yeah, your healthcare systems are a bit different than ours.
MEGAN NEFF: Yeah. That's actually why I'm going to Canada next month, just testing it out, see… Actually, wait, no, I couldn't move to Canada. Like, I'm pretty sure that's one of the countries, so that's another part of having to put up your medical record, is there some countries you can't migrate to?
PATRICK CASALE: It's really fascinating because you're not always thinking about this in the moment when you're in the doctor's office, right? Because there is anxiety, like you mentioned, and you're nervous about whatever you're there for, and potentially, just the sensory overwhelm. 
And if you're using health insurance in the United States, and that is a part of your record, you don't really have a choice of whether you want to disclose or not. But we're talking really about the autonomy of saying I did this testing, whether it's self-diagnosis or whether it is from testing result and I have the ability to let my provider know this because it could be helpful for them to then conceptualize my medical conditions and struggles through this lens. But then that's a whole nother like nuanced conversation, right? Because that provider really has to be really ND-affirming too.
MEGAN NEFF: Yeah, yeah. And I think that's definitely my anxiety is like, what are the associations going to be? When I say I'm autistic are they going to think… Like, there's so many worries, right? So, there's, like, the assumptions I think they might put on me on one hand, and like, are they going to start talking to me like I have an intellectual disability, which that's a common experience because people don't often realize, like, in mainstream people don't always realize that an intellectual disability and autism are separate, there is a higher rate of co-occurrence, at least among diagnosed autistic people, right? So, they can co-occur. And typically, that's when we're talking about level three or level two autism. Level one autism is which you and I were diagnosed with, is autism without a co-occurring intellectual disability. It's not that simplified. I'm simplifying it a little bit. 
So, one it's like are they going to start making those assumptions and either start talking loudly or start, you know, these things? Or on the other hand, are they going to think I'm full of shit? And like, "No, you're not autistic? Like, here you are, we're having a fluid conversation." 
So, like those are kind of the two sides of the road of the two fears I have when I'm disclosing to anyone, but especially, to medical providers, knowing that the medical field is pretty far behind on the research.
PATRICK CASALE: And I mean, let's take that a step further, like we talked about last week, the mental health field is still behind, so…
MEGAN NEFF: Yeah, when I say medical, I'm including mental health field in that for sure.
PATRICK CASALE: Got it. I never know with like psychology because psychologists there's so much overlap and inter-woven like medical and mental health, and I know they go hand in hand. But I think so much of our country feels like medical and mental health are separate.
MEGAN NEFF: Yeah, that's a good point. I worked in hospitals for so long that in my head, it's like, it's a really [CROSSTALK 00:12:03].
PATRICK CASALE: Yeah, and I totally, like, most mental health professionals, hopefully, understand there's a holistic picture of health here where medical and mental health go hand in hand, and I know, but there's an archaic version of like, what it's like to be autistic in the mental health community. So, when I think about medical community, I think about it even as more archaic and more sterile, and a way of like saying is it safe for me to openly disclose this information in this environment? 
And some of you that are listening may have had the same provider for a long period of time because you feel comfortable with them, so then it's like, do I disclose this part of myself that's so important, knowing that there could be repercussions, or knowing that there could be a reaction that really doesn't feel affirming to me, or supportive, or safe?
MEGAN NEFF: Yeah, yeah. And I think that's part of like outside of medical, right? That's just part of self-disclosure. And like, I work with a lot of people in the first, like, you know, year post-discovery, and so spend a bit of time talking about self-disclosure, and like a few things, like tips, I give people with one, like, be really comfortable with this in yourself before you start disclosing it because, like, often, we will get responses that either make us, like, activate our imposter syndrome around the diagnosis, or just make us feel like really bad about ourselves. Like, sometimes it's a really positive experience. And I love those moments. But often, there's a lot of painful interactions that come with self-disclosure. 
So, one of the pieces of advice I give people is like, be so comfortable with this on your own so that if you get or when you get those negative responses, it's not going to shake you to the core in the same way.
PATRICK CASALE: That's great advice. I think that's really important because the more you can openly talk about this stuff, the more you can openly put this out into the world, I do think it gets easier. But that also comes with inherent risk. And I think that's why I've tried so hard to just openly talk about it over and over and over again, not just for myself, but for people who cannot. 
And, you know, I was talking last week on the episode that we did with Mel about talking to my PCP about autism, and sleep, and sleep struggle, and I really appreciated their reaction, which I don't think is like the norm, where they were just like, "Oh, you're autistic. Okay, cool. Like, how do you want me to… Is there anything you want to send me? Is there anything you want me to learn about? Is there anything that you feel like is [CROSSTALK 00:14:32]-
MEGAN NEFF: That is so cool.
PATRICK CASALE: I was like, "What?" I was blown away by that. I was just like, but I don't think that's the norm, in terms of that reaction [CROSSTALK 00:14:41]-
MEGAN NEFF: That is not the norm. And first of all, like what PCP has time for that? I will say, my psychologist's response, and I mean, psychologists they're still very busy, but their caseload you know, PCPs have like their panel was like 2000 or more patients, right? Like, there's a lot of patients they're interfacing with. 
But my psychologist had a similar response when I brought up autism. And like, I, of course, sent him so many resources because autistic brain. And like it was really cool. He met me in that and was like, willing to learn and curious about it. And I think it's influenced him as a psychologist with other patients, which is really meaningful. So, that's really incredible whenever you find a therapist or medical provider who's like, "Okay, I'm curious, tell me more."
PATRICK CASALE: Yeah, absolutely. And I think this conversation can be both discussed around, not just the medical staff, but also, mental health staff. So, your therapist, I mean, we've talked on here about disclosing to your therapist and having such negative reactions in that field where people are told, then, "Oh, I'm not comfortable supporting, or I don't feel like I have enough training, or I have to refer you out." 
And that's a fear too because that brings up so much abandonment and shame of like, there's something really wrong with me where this person cannot help me or support me. And I've mentioned my own therapist on here many times, and I know she listens to this podcast. But again, another shout out to someone who's affirming, who's like, "Send me podcast episodes, send me like clips of what you and Megan are talking about when you feel like it's really important for our sessions because then it helps me better understand your world."
But I really wish that we had more providers who were really interested in learning and really supportive and affirmative, and I just feel like we don't. I think we're missing the mark a lot of the time.
MEGAN NEFF: Yeah, yeah, yeah. Can I shift conversation a bit to talk about, like, self-disclosure experiences? 
MEGAN NEFF: So, it's interesting I feel like, actually, well, you know, I've been talking about in the podcast, I've been sick for like two or three months now. Finally, like, my lungs finally feel okay, for the first time in three months, which is great. But it means I've also been to the doctor more. And so, I've self-disclosed three different times to different medical providers. It's not in my medical chart, so I was diagnosed by a private psychologist, and then, I have Kaiser which, like, it's a really big, kind of inclusive, it's an insurance company, but also hospitals. And I, like, hadn't added it to my medical record. 
So, the most recent one I had was actually last week, it was the dentist. I hate the dentist. I think most autistic people do. And between COVID and the dentist, and hate it. I haven't been in three years and didn't realize it was that long. So, I had a cleaning. And they were doing it because it had been so long, there's more buildup, and they were using a, like a scraping machine. 
And there was a high-frequency sound that was piercing in my inner ear. And like I was obviously, in pain, and the hygienist was asking me like, "Are you in pain." And I was able to disclose, like, I have sensory issues, and I'm experiencing a lot of pain. And so, then we kind of tried some things. 
And I was so impressed with his response. And I want to note, this was a partial self-disclosure, and I'm a really big fan of talking about where you can do a full self-disclosure, I'm autistic, I'm ADHD, but you can also do partial self-disclosures. Like, I have sensory issues, I have a sensory processing disorder. So, I used a partial self-disclosure. And he was incredible throughout the rest of it. And he was like, "Hey, just let us know next time you're in that you've got sensory processing."
The other thing he mentioned was like, "I've been doing this eight years, and I've never seen this." And in my mind, I'm thinking, "I'm sure you have or people probably aren't saying anything when they go in. They're probably disassociating through it, or they're not going in like me."
MEGAN NEFF: But that would be an example of a partial self-disclosure, and it went well.
PATRICK CASALE: That's great. I mean, especially, in an environment where like, I don't know anyone who enjoys going to the dentist, and then, you take it a step further with someone who is autistic or someone who has any sort of sensory processing disorder. It's a horrible experience and for them to recognize that you are in pain, and then, to help navigate through that, I imagine going back will feel maybe a little bit more comfortable the next time. 
MEGAN NEFF: I'm totally going to go back, specifically, to that provider. And yeah, it makes it way more likely. Like, I think, I mentioned that on the episode last week, like, I have a medical avoidance which is really unhelpful when you've got like chronic medical stuff going on, but it makes me way more likely to go back and to kind of stay on my normal six-months schedule that, you know, is healthy.
PATRICK CASALE: Yeah, I think the ability to… it probably feels like feeling seen and feeling validated. Like, instead of saying like, you're making this up, this shouldn't be painful, or just completely dismissing the experience that you had.
MEGAN NEFF: Yeah, yeah. Like, it shifted to a really collaborative, he's like, "Do you want to like push your ear in?" And like that did help. And then he's like, "Do you want to stop?" And I kind of made the choice of like, I'd rather get the buildup off, and like, not have to do that again. But just having it be a collaborative decision. Like, and having my autonomy kind of centered in that experience was incredibly helpful.
PATRICK CASALE: It sounds incredibly helpful. And I think about, like, someone had asked us on our Instagram to do an episode on like autism and chronic pain, and the correlation, which I think is a good idea, for sure. And I'm in chronic pain all the time. Like, I've had significant back issues for the last decade, I'm tall, I play soccer, I've been injured. And it's just, I think that pain, feeling like there's an increasing sense of chronic pain and sensation too, and a lot of providers can really dismiss that as if like, or minimize that experience. And I think that can feel so frustrating to want to pursue another appointment, or to circle back, or to do a follow-up because it's like, I can't even really have my experience validated and feel like it's really feeling supported and seen. And that doesn't make me want to do another appointment-
MEGAN NEFF: Totally. 
PATRICK CASALE: …so I just live with the pain.
MEGAN NEFF: Sorry, okay, you're…
PATRICK CASALE: No, it's good. 
MEGAN NEFF: Well, and that… So, if you think about chronic pain, and especially, autistic ADHDers, like I think part of what can be the medical avoidance is we know how we're being perceived. Like, we're being perceived as like pill seekers, right? Like, so we're talking about ADHD medication. 
Like, I had a provider just a couple of weeks ago be like, "Oh, well, now we're talking about controlled substances." And so, like it was just so stigmatizing the way she talked to me about ADHD medication. And then, chronic pain, right? Pain medication, this is another one that, like, gets really stigmatized. So, if we're an autistic ADHDer, in chronic pain, seeking medication to support us, like, I think we know how we can be perceived, which is not a great, yeah [CROSSTALK 00:22:30].
PATRICK CASALE: So, the narrative's already been written, right? If you're going in as an autistic ADHDer on a controlled substance for your ADHD medication, and you're in chronic pain, and the quick review of the chart is like, you know, we have systems in place in this country that highlight like whether or not someone's on a controlled substance so that you're not going from provider to provider. And that immediately pops up and you're talking about chronic pain issues, there can definitely be this immediate, what's the word I'm looking for? Perception, that you are med seeking, that you're like, "Okay, this person is on a controlled med for ADHD. Now, they're in here for pain issues, looking for something that's going to help alleviate this. This is something that we now have to talk about first and foremost." Opposed to like saying, "Hey, here's the experience, this is what we're going to do to support you through it."
MEGAN NEFF: Yeah, exactly. And then, you've got 20 minutes. And if you spent, like, most medical visits are like 20 minutes, and if you spend 10 minutes, like convincing the doctor why you actually are going to use these medications responsibly, and 10 minutes to talk about the complex medical stuff, yeah, yeah.
PATRICK CASALE: Yeah. And it makes sense why so many people, like you mentioned, have medical avoidance or just have to dissociate or are just struggling with their bodies and how they're experiencing everyday life. And just feeling like that's the better alternative because I don't have a provider that I can go to comfortably, and really speak about my experience. 
And this is a whole nother conversation, like we talked about last week, where we could talk about the medical system and all its flaws for days. So, like if you're a medical professional, and you only have 15 minutes with a patient, and you have to get all of this information, there's so many areas where that can just fall through the cracks, or be missed, or completely just not even discussed or avoided.
MEGAN NEFF: Yeah, absolutely, absolutely. And this is why medical providers are experiencing moral injury at such high rates. This isn't what they signed up for. Like, they wanted to help people, that's why most physicians go into the field.
PATRICK CASALE: You're seeing a lot of physicians move into these models that are like membership-based, where they're seeing fewer clients, and you have a monthly membership fee, and it's actually can be quite affordable. And that's actually the model that I'm involved in here. I think it's like $70 a month, and I can see my physician and PCP at any time. We have like messaging software's very available. And I have health insurance, I don't have to go into that model, so I'm very lucky and privileged to be able to say that, but like, I would rather opt for that model than have to use my health insurance and just find someone who takes BlueCross BlueShield, and then see if they're a good fit.
MEGAN NEFF: But, so then you pay out of pocket for your medical visits? 
PATRICK CASALE: Yeah, no, it's all-inclusive in that price, like $70 a month includes like, as many medical visits as I want to have with this person.
MEGAN NEFF: Wait, how do they like, from a business model, how does that work? That doesn't seem sustainable.
PATRICK CASALE: Well, you got to think like if they have 500 patients, and I have no idea how many patients this practice has, and everyone's paying $70 a month, what's the likelihood that all 500 of those people are coming in on a monthly basis? The odds are quite low, so you're making consistent revenue, and then, you're becoming more accessible and available because you're seeing fewer patients. 
And I love that model. And I think a lot of practices are starting to do that. But for people who do not have the ability to go to something that's more tailored, more catered, have more time with your provider, like, it's a struggle, right? Like, a yearly annual physical that takes an hour's time and you sit in the waiting room for three hours, and you're frustrated, and overwhelmed the whole time, it's not a good experience.
MEGAN NEFF: Well, and the body boundaries. I think that, I mean, I don't even know the last time I had a physical… I actually don't have a PCP, it's on my to-do list. My PCP retired in like 2020 and I just haven't gotten a new one. I definitely should do that.
PATRICK CASALE: This podcast is going to hold you accountable to that. 
MEGAN NEFF: I know, it's on my to-do list. It's on my, like, those are the things… that's where I really feel my ADHD is things like that, where it's like, that's been on my to-do list for a long time. Going to the dentist was on my to-do list a long time. That's where it's medical stuff, and like just that daily life stuff, where I really struggle to get myself to just do it. But yeah, the body boundaries aspect of like having a physical or like, that is always really hard for me, not going to see the doctor. 
PATRICK CASALE: Yeah, absolutely. That makes total sense. And then, having to re-establish with someone new. I mean, there's a lot of challenges here, so we're talking about a lot of barriers. And I'm realizing that as we're talking, like, yeah, what I don't want to do is say, like, the system is broken, and we're all screwed. Like, that's certainly not the [CROSSTALK 00:27:31-
MEGAN NEFF: Yeah, and I feel like we do that a lot on our podcast. And I'm, like, being mindful of that of, and I'm seeing this on social media. And like, I'm seeing this in spaces. And I'm feeling this too, like, a lot of the educational posts that are out there are around educating about what's hard for us. And I think that's absolutely important. And actually think like, if you think about the discovery process on like a developmental arc, I think the first process is like identifying, oh, these barriers I experienced, they're connected to autism, or they're connected to ADHD. 
But we have to move beyond that. We have to move on to like, hope is such a loaded word, so I don't exactly want to use the word hope, but to things that are really pragmatic and helpful. And like, okay, so these are the barriers, and here's what to do about it. 
So, like, I'm feeling that in general with the like, kind of autistic, ADHD neurodivergent affirming world. But I'm also feeling in our podcast of like, okay, I don't want to be yet another voice just talking about how hard our lives are.
PATRICK CASALE: Yeah, it's a hard thing to navigate. And you're so right, like because our lives are hard, so we don't want to dismiss that. 
MEGAN NEFF: Yeah, we want to honor that. And we want to move the conversation beyond that.
PATRICK CASALE: Absolutely. So, I think-
MEGAN NEFF: We got to [INDISCERNIBLE 00:28:52]-
PATRICK CASALE: What can we do in this situation, when we're talking about the stigma of self-disclosure in medical and mental health spaces? And what can we do to ensure that we're taking care of ourselves, and our physical needs, and our mental health needs too, in a way where we, maybe it's not filled with, like, complete and utter dread all the time?
MEGAN NEFF: Yeah, yeah, yeah. Should we kind of shift our conversation and our energy to talk about like, what are some things people can consider doing?
PATRICK CASALE: I think so. I mean, we could highlight the other side of the coin all day, it feels like, and I think, maybe we default to that cynical outlook because we're so used to living in a neurotypical world that isn't always set up for us.
MEGAN NEFF: Like, it's so important to talk about, and it feels easier in some ways to talk about that than to talk about, okay, now, what do I do about it? Yeah, yeah.
PATRICK CASALE: So, I think when we're talking about like, how do… we've talked about how to seek out neurodivergent affirmative mental health spaces. Like, that's pretty clear and cut and dry. And I think it gets a little bit more challenging when we're talking about medical spaces because sometimes you kind of feel like you get what you get and-
MEGAN NEFF: Oh, 100%, yeah.
PATRICK CASALE: … we don't have the autonomy of choice all the time, especially, if you're in like a small rural area, or health insurance isn't great, or whatever. So, I do think we have to figure out strategies in terms of how do you ensure that you're mentioning, like Megan said, like, that there is some sensory, you know, sensitivity or struggle, how do you mention that? You know, I struggle to sit in a waiting room that's really brightly lit. Like, these are the conversations that need to be had, I think.
MEGAN NEFF: Yeah, absolutely. And I think this is, at least in the US, one of the hard things, it often takes a visit with a provider before you really know. Like, I will always go on the directories and read their bios, but even then it's like, it's after the experience. 
But grabbing the provider… when you do have a positive experience, when I'm grabbing them, like that dental hygienist, like I, you know, wrote down the name, and I'm like, I will schedule with him forever. 
Same thing with, I recently met with a OB-GYN provider who was incredible. And I disclosed I was autistic. And their conversation went well. And I asked her, then I was like, "How do I make you like my primary doctor for OB-GYN care?" So, whenever you do have a positive experience, like figuring out how to grab that provider and getting them on your panel.
PATRICK CASALE: I love that. That's a great point, though, like when you do have a positive experience asking that question and trying to feel comfortable as possible to say, how can I ensure that when I come here you're the person that I see, you're the person that I have contact with? I think that's a great step. 
PATRICK CASALE: I imagine if that hygienist leaves that dental practice and you find that out, you're going to follow that person to another dental practice because of the comfortability and the ability to feel supported.
MEGAN NEFF: Yeah, yeah, yeah, and that gets back to like, another, I guess, tip would be thinking through your, like, what are your primary needs, and then, pairing your disclosure to that? So, if you're someone who hasn't disclosed, if it's not in your medical record, and you don't want to disclose that, especially, there's a lot of trans people right now who are like disclosing that can have implications for gender-affirming care, so that I know, especially, in the transgender and queer community, this is like a really key topic right now. So, there might be reasons you don't want to fully disclose. 
So, thinking through, okay, what do I need in a medical visit? So, yeah, for me, sensory stuff. For me it was really important my OB-GYN knew I had sensory issues, it was really important. My dental hygienist knew I had sensory issues. So, I paired my self-disclosure to that need.
Actually, for the for the OB-GYN, I did a full self-disclosure because females are more prone to a lot of endocrine stuff, I wanted her to know that. So, again, it was paired to my need, what am I trying to accomplish here, and then tailoring my self-disclosure to meet that need.
PATRICK CASALE: Right. That's a really great point. So, what I hear you saying is like in these moments you have to be intentional and it doesn't always have to be the first time I meet this person I tell them everything. Getting really comfortable with the provider, and then deciding whether or not what is the purpose behind this disclosure, how is this going to best serve me? And I think that's important because you want to protect yourself.
MEGAN NEFF: Yeah. And you want to get your needs met. And it's a really effective, like, it's a good effective communication tool, in general. It comes from nonviolent communication theory, like express the underlying need, and then, make a request, right? So, it's basically, practicing nonviolent communication. 
So, another one that I see a lot being helpful, especially, for ADHDers, like an ADHDer, I feel like that tends to be in the medical record because many of us are on medication for it. But it could be like, I struggle with attention and remembering. Like, my work in memories is poor, especially, when I'm anxious or like in a medical setting, you want to have to add that part which is struggle to focus, "Is it okay if I audio record your feedback to me or if I audio record part of our visit today?"
That's a super helpful one because we're often, again, those 20 minutes, are fast, and we're often talking about complex medical things that aren't going to stick in our head, especially, like, if there's a lot of medical language that can be overwhelming, so being able to audio record a session is one accommodation I find been really helpful for a lot of folks.
PATRICK CASALE: That's another great tip. Another thing that I've done that I've found useful is sometimes writing down a list of questions before you go into a visit or things that are on your mind that are causing you anxiety that you would like to have addressed, so it doesn't feel like you're just sitting in this appointment, and it's like, "Oh, my God, I feel really overwhelmed and I don't even get to ask the things that are important to me or bring them up."
Scheduling-wise, asking for reminders, making sure that you are opting in to reminder texts, or calls, or emails so that it can help you get yourself oriented, especially, if your executive functioning is really struggling in that way. I find that to be really important for appointment reminders, and just ensuring that you have something on your calendar to defer to or however you like to visualize what your week and month looks like. I think that also helps quite a bit.
MEGAN NEFF: Absolutely, absolutely. Yeah, especially, you know, most of us have met like complex medical stuff going on. So, I love that idea of like writing things down ahead of time. I often even tell people, like, what are the top two or top three things you really want to talk about in the medical visit, knowing like, if you have a list of eight things, you're not going to get to it in 20 minutes, and because probably, like, prioritization can be hard for us, and then, again, if we're anxious and kind of in a fight, flight, or freeze state, we're not going to be effective in our self-advocacy. So, thinking through ahead of time, okay, these three things I really want to talk about and I'm even going to script out like, what I'm going to say, or I'm going to write it out. I love that.
PATRICK CASALE: Yeah, yeah, absolutely. I think asking, you know, any ND-affirming and positive and supportive community that you're a part of, like, does anyone have recommendations of providers who are ND-affirming? Because I think that's another way because, Megan, if you're saying I really enjoyed this hygienist, this person was really supportive. I imagine if someone was to ask about that you would be the first person to like, "Definitely see this person." Like, with person you'll feel comfortable, where you're going to talk within our communities and I think just having that ripple effect of sharing positive experiences is also really helpful.
MEGAN NEFF: Yeah, I don't think I'll actually do this, I don't think I have the spoons for it, but maybe one of our listener wants to do this project on. I've been saying for like a year, I really want to make like, a neurodivergent directory for like everything, right? 
So, I think a year ago I went and got my hair done for the first time in three years because it was so long, and again, like, these are things I don't like. So, I went on the website of the place I was going to go and I was like, "Who looks the most neurodivergent? And like, someone with purple hair, and like spunky, and I was like, "Her." And I went to her, and she was, and it's amazing. And just how much of a difference it made having a neurodivergent hairdresser, like, it has been so impactful that I think if we could make neurodivergent directories at like groupthink, I just think that would be so, so resourceful,
PATRICK CASALE: It'd be amazing. I mean, if any of you want to take that on as a startup or a project, when Megan and I have the spoons and capacity we can help add to it. But like, I think if people just were able to do that, you know, where we had some sort of resource. And I know it's hard, geographically, but like, just location-wise. And I'm lucky, like, and you are, too. I mean, we live in areas of the country where the cities are probably a bit more progressive than other areas of the country, so we're going to have more providers who are more holistic. And that is definitely a privilege for us to have the ability to say like, there are multiple providers we can contact for this one thing. I also think being mental health professionals, people are more inclined to listen to our feedback. And if someone's not, so I know that's also a struggle as well in terms of advocacy in the medical space.
MEGAN NEFF: Yeah, yeah. I mean, this topic of self-advocacy in medical spaces, like actually, it's on my wish list of workbooks to make someday because it's such an important topic and like, I think it's such an area of a struggle for so many of us. And there are some really practical steps of like, okay, this can help me think through how I want to seek out medical care or organize the visit, or, yeah.
PATRICK CASALE: Just the little things. Like, if you can do some of these little things that we're suggesting prior to a visit, I think it can alleviate just a little bit of anxiety. It may not complete really remove that sensation, or emotion, or experience, but I do think that it can at least allow for things to feel more manageable when things can feel really overwhelming when you're starting with a new provider, or doing a follow-up, or concerned about something that's happening and you don't really know if you're going to have enough time with this person. So, I do think these strategies can help quite a bit.
MEGAN NEFF: Yep, yep. Are we at the point?
PATRICK CASALE: I don't know. I'm reading you right now and I feel like maybe you're at the point, or you're at the transition point. Which one would you prefer?
MEGAN NEFF: Yeah, I don't know. I mean, there are a few other things in my head I tagged of like, that could be an interesting story, but like, it feels like we're in whatever that conversation was, like, I guess self-advocacy and medical office, it feels like we're done with that conversation. I don't know if that means we're done with the podcast for today or if it just means we'll transition to another similarly related topic.
PATRICK CASALE: I love that this is our experience. Like, this is really how this goes. And so many of you have mentioned that you really enjoy this aspect of the podcast, so we want to keep that feeling as natural, and awkward, and uncomfortable as possible for everybody involved, including ourselves. I do think we're done with these self-advocacies component of this conversation. I do think we can transition elsewhere. I'm always tracking time, as I've mentioned before, and it is about 15 minutes from your next appointment, so we can do something else in the next five if something's pressing on your mind.
MEGAN NEFF: Well, this is an association, it's not about healthcare. But it was an interesting realization So, I've been listening to our podcast back and I hear my awkwardness and I hear my misspeaks. Oh, I should add this because I felt so… this was my one misspeak that I was like, "Okay, these kinds of misspeaks bugged me last week." Well, the show that aired last week, the one after Thomas. There's was more of group dynamics. I said, "I used to exercise three to four hours a day." Which like, that is an exercise disorder, it was three to four hours a week, but I said day. And I was like, "Oh my gosh." Like, I need to like go back through and like add bloopers of like, "This is what I actually meant."
Anyways, that aside, like, aside when I make like mistakes like that, I actually have loved my awkwardness, which is really interesting because I think I used to be so nitpicky in my awkwardness. Like, if I was doing a presentation, I'd record myself, I'd watch it, I'd figure out how to make that smoother. And I genuinely, when I'm listening back to our podcast and I hear me being awkward or hear me misspeak, unless I'm indicating I have an exercise disorder, I smile, and I enjoy it, and it brings me delight, yeah.
PATRICK CASALE: I love that because, you know, when we first started this and kind of pitched each other the idea, I think that was a concern for you. Like, "How am I going to come across? And how am I going to embrace my authentic just experience and personality?"
MEGAN NEFF: Yeah, I mean, like a lot of ADHDers and autistic people, like I've got pretty gnarly RSD, like rejection sensitivity. So, putting myself out here in this way, I definitely was scared about. And I do realize that, like in being able to celebrate my awkwardness, A, it made me realize how much I have integrated my autistic identity and I have worked through a lot of my ableism. And I've realized that actually really helps with RSD in other ways like, and I mean, there's other places in my life where the RSD is still really active, but around my awkwardness, it's not nearly as much.
PATRICK CASALE: I love that. And I also love how this right now, like just processing out loud is probably going to lead to an episode because I think we definitely need to do an episode on RSD.
MEGAN NEFF: Well, and this is why my workbooks go from 30 pages to 130 pages. It's the divergent, like, and the combination of ADHD and autism, right? So, it's like, "Oh, this connects to this. Oh, but I have to go really deep into this."
PATRICK CASALE: Right. Yes, yes, yes, yes. I love it. Yeah, I think that there the RSD topic is a crucial one and one that we should definitely do an episode on and we could do a series on from people's experiences, too. I mean, stuff is so painful and so there's so much vulnerability there and I'm glad that you feel comfortable with your awkwardness on here. 
MEGAN NEFF: Yeah, yeah, yeah, we should definitely talk about RSD. I've actually got some content planned for it next year. So, I'll be deep into that research which will be fun.
PATRICK CASALE: We'll do a little behind the scenes of like Megan's life every week of like, what is Megan planning right now? What's Megan's deep dive?
MEGAN NEFF: Yeah because I guess it is my, like, whatever my deep dive is for that month, it's kind of my lens. Like, because I'm spending so much time with it, it becomes my lens for seeing the world, which is, I mean, that's why it's the perfect business for me as an autistic ADHDer. It's like a new, deep, immersive ecosystem, but they're all connected, but they're different enough that I don't get bored. So, if I could just learn to not, like, write 130 workbook page every month, and like, tone it down, then this is a perfect business model for me.
PATRICK CASALE: Sounds like good goals for the foreseeable future to try to figure out a way to satiate all parts of you to be able to do that. But yeah, I think that's a good topic for sure. And I think embracing our awkwardness is another form of advocacy in some capacities. Like, if we can be okay being awkward in public spaces, and okay with some of our, I'm trying to think of how I'm trying to say what I'm saying. I'm feeling awkward right now.
MEGAN NEFF: Are you saying [INDISCERNIBLE 00:46:16] the thing you're talking about right now. 
PATRICK CASALE: Yeah, exactly. You know, I think if we could just highlight that and just be like, "This is how we experience life." Right? That's the point of this podcast. Sometimes is like live processing, of acknowledging like, this is how we go through life, and when we have to mask, or when we have to really shift those behaviors, or interactions, or the ways we show up, it doesn't feel authentic for us. And it also feels painful and it also feels exhausting. So, I think the more we can do this, the more we can, you know, embody just actual real sense of self, then I think that's a really powerful thing. 
If you want to talk about RSD for the last 30 seconds, I obsessively check our podcast reviews on Apple podcasts, like almost every day. I don't know why, it's just something I've always done. I do it with my other podcasts, too. We got our first like, one-star review, but there's no comments and I just want to know, like, why? It's like when you look at a restaurant, and it's like all five stars, and there's just one person who's like, one-star, I just want to know.
MEGAN NEFF: You want context for it, totally. 
PATRICK CASALE: I want context.
MEGAN NEFF: Yeah, yeah, that hurts a little bit.
PATRICK CASALE: Yeah, I get it, but that's just the reality.
MEGAN NEFF: And I could see why we're not for everyone, right? Like, for one, anyone who's not in the neurodivergent affirming space, I could see having reactions to us. 
MEGAN NEFF: And I don't know, maybe not everyone loves listening to two [INDISCERNIBLE 00:47:51] people.
PATRICK CASALE: All I can say is that I love all of you who are listening, and supporting, and consistently tuning in, and consistently offering feedback, whether it's constructive, positive, whatever, that's what we want. We want feedback. So, if you have it, if you have topics that you want us to cover, if you have things you just want to share, check out our Instagram page, Divergent Conversations. You can post comments, you can send messages, whether or not we respond to those messages, that's a different story. I'm trying to limit the pings and pongs as Megan would say, but we do want feedback and we really do value your questions, and your thoughts as well. 
And we appreciate the fact that like, in less than two months there are 30,000 of you listening and that feels amazing. And I think that there feels like there's a trickledown effect from just having these conversations and sharing these episodes, and Megan and I just showing up as authentically and vulnerably as we can.
MEGAN NEFF: And that's [INDISCERNIBLE 00:48:59] goodbye. Now [CROSSTALK 00:49:02] awkward.
PATRICK CASALE: Okay, I'm losing my voice so saying goodbye is going to be fun.
PATRICK CASALE: To everyone who listens to this podcast, to Divergent Conversations, our new episode's out every single Friday on all major platforms and YouTube. You can like, download, subscribe, and share. And we will see you next week. Goodbye.

Friday Aug 18, 2023

Do you ever feel like your immune system is working against you? You don’t know what’s wrong, no one else knows what’s wrong, you keep doing medical tests and it’s coming back normal or the pieces don’t add up.
Autistic people often experience a myriad of chronic health conditions and nervous system dysregulation that leaves us feeling terrible, overwhelmed, and with tons more questions than answers about what’s going on with our bodies.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Dr. Mel Houser (she/they), an autistic family physician, about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome (MCAS), the connection between Autism and nervous system dysregulation, the struggles with the healthcare system and getting treatment for these symptoms, and the importance of becoming a “detective in your own life.”
Top 3 reasons to listen to the entire episode:
Understand the role that daily experiences play in potentially triggering health conditions or pain through nervous system dysregulation.
Uncover the complexities of living with neuroimmune conditions like ME CFS and mast cell dysfunction.
Learn how to get support to address the unique challenges that neurodivergent individuals face in accessing mental health and medical care.
More about Dr. Mel Houser:
Dr. Mel Houser (she/they) is an Autistic family physician with a clinical focus on providing primary care for neurodivergent patients across the lifespan. She is the Founder and Executive Director of All Brains Belong VT, a nonprofit 501(c)(3) organization in Montpelier, Vermont that uses universal design principles to provide neurodiversity-affirming medical care, social connection opportunities for all ages, and neurodiversity-related educational training. At age 37, Dr. Houser was diagnosed as autistic, ADHD, dyspraxic, dyslexic, and dyscalculic. She is also the parent of an autistic 6-year-old, who is her guru of so many keys to the universe.
Website: https://allbrainsbelong.org 
Instagram: @allbrainsbelongvt
Check out All Brains Belong’s new project: Everything is Connected to Everything: Improving the Healthcare of Autistic & ADHD Adults provides health education resources to support people with this constellation of intertwined conditions, as well as strategies for discussing the project with medical providers. There is also a Clinician Guide with a combination of evidence-based practice and the lived experiences of more than 100 Autistic and ADHD community members.
Here's the link to the project: https://allbrainsbelong.org/all-the-things 
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.
MEGAN NEFF: Well, Mel, I was so excited when you reached out to me over email. Patrick and I have been talking about how we just keep getting sick. I've been dealing with long COVID. And we've been saying probably for the last four weeks we've got to do an episode on health. 
So, you're an autistic physician, this is your, like, specialty. I'm so excited you're here. Before we started recording, I was talking about like, "Oh, we don't do bios." Which I actually love. It feels more organic. But it does put a little bit more pressure on you to explain to the audience who you are and give us context. 
So, can I hand it over to you to give us some context of who you are, why this conversation is important to you around autism and health?
MELISSA HOUSER: Definitely, and thank you so much for having me. So, yes, I am an autistic physician. I am the founder and executive director of a nonprofit in Vermont called All Brains Belong. We provide neurodiversity-affirming medical care, in addition to social connection opportunities for kids and adults, plus, community education. 
And in my medical practice, I am providing medical care, both primary care and additional support for the conditions that we'll talk about today for kids and adults. And so, not all of my patients are neurodivergent but most are. And the majority of my autistic and ADHD adult patients suffer from a constellation of related medical conditions. And the problem is that not only do many medical providers not know that these conditions are related, the standard management of some parts of this constellation, and in my practice, we would really call it all the things because mostly all the people here have all the things, so…
MEGAN NEFF: I love that, all the things. That's a good hashtag.
MELISSA HOUSER: Yeah, so the standard management of some parts of all the things make the other parts of all the things worse. It's like internal conflicting access needs.
MEGAN NEFF: Absolute, I love how you unpack that. A lot of the folks I work with and myself included will talk about that of like, well, I could do this medication for this diagnosis, but then, this other diagnosis I have is going to be negatively impacted by that treatment. So, it's like this wacky mole of health conditions. 
Yes, so having a provider who can do the zoom out which Western medicine is not historically great at, the, like zoom out, let's look at this whole body, and how its integrated. I get the sense you're absolutely doing that. I love the language of constellation. I feel like that is a really integrative way of thinking about it. I'm curious what you would say are some of the like, big planets in the constellation. Also, I love how we're like co-creating a metaphor here as we [CROSSTALK 00:03:51]-
MELISSA HOUSER: I love this. Yes, like, yes. So, I've been thinking about these "planets" as like buckets. So, this constellation includes something in the allergy immunology bucket, something in the connective tissue bucket, something in the gastrointestinal bucket, something in the sleep bucket.
MEGAN NEFF: That's that.
MELISSA HOUSER: Yeah, great, right, right, yeah. Something in the nervous system or neuropsychiatric bucket, something in the metabolic or vitamin absorption bucket, and something in the dental face and jaw bucket. And-
MEGAN NEFF: Oh, that's a new one. I didn't know about that.
MELISSA HOUSER: Yeah, yeah. And so, one of the things about this is that many people go often decades with like, maybe some like prodromal mild symptoms, and then because these are all neuro immune conditions, meaning they impact the nervous system and the immune system, and like the system's crosstalk, the mast cells, which we can talk more about, anytime the neuro immune systems get triggered by something, whether that be infection like COVID, for example, or surgery, or a concussion, or like, you know, trauma, you know, physical/emotional trauma, any kind of trauma, like these, or pregnancy, or menopause, or like just any trigger to the neuro immune systems, these conditions can get worse and for many people, they can get a lot worse.
MEGAN NEFF: So, not that I'm going to treat this like a consult, but this feels like a consult question. So, for me, I had two very complicated pregnancies as well as two pregnancy losses. So, pregnancy, that whole season of life was difficult for me. But both of my two labors, complicated and did C-sections, my recovery to C-sections was brutal. And I always attributed that to the fact that I'd had a 36-hour labor and uterine infections. But based on what you're saying about surgery, is it possible that my difficulty coping post-C-section was actually related to organic things going on related to being autistic?
MELISSA HOUSER: That is certainly possible. And in my practice, we see surgery, both from… there's all these different aspects of surgery, that's like a whole other podcast episode maybe. But like, when we think about, you know, aspects of connective tissue, for example, many autistic ADHD people have a condition called Hypermobile Ehlers-Danlos syndrome. So, like. wound healing from a connective tissue standpoint. Like, we just maybe don't heal well. And then, like, again, the autonomic nervous system aspects of, you know, maybe there's an impact in like blood flow, and maybe there's an impact in like, blood pressure, and heart rate, and like, all these things. Yeah, all of it, it's all related. 
But I think the take-home point is that everything's connected to everything. And I think patients know that. It's the medical system that's so like, fragmented and siloed with like the body parts are treated as separate entities, but like, we know everything's connected to everything. 
And you know, I love, Megan, you're talking about zooming out. You know, it's kind of like, you know, like on Google Maps, and you're so zoomed in, you don't even know what [INDISCERNIBLE 00:06:52] that you're on. Like, that's what goes on in healthcare.
PATRICK CASALE: Yeah, I think this is such an important topic because so many medical professionals don't look at it in that perspective, or are not neurodivergent affirming, in general. And that [INDISCERNIBLE 00:07:08] to impact everything in terms of even like seeking out treatment, seeking out support, being comfortable disclosing your own autistic diagnoses sometimes can feel really challenging and triggering as well. 
I was telling Megan, like, I'm 36 years old, I can remember being sick all my life, like getting mono at super early ages, in like second and third grade, being out of school a lot. And now my career has taken me to a place where I travel pretty often, and I'm sick constantly, whether it's upon arrival, or when it's upon landing, and coming home. And the immune system just feels like it can never catch up. And I just started to think about how much association there was between the way an autistic nervous system and body heals and recovers, and also, responds to stimuli, and just responds to immunity, in general. And it's just fascinating to start thinking about it from this lens.
MELISSA HOUSER: Yes, and a good search term is myalgic encephalitis chronic fatigue syndrome, MECFS. So, MECFS is this really complicated neuro immune condition that impacts multiple organ systems. It's part of the cluster, it's not its own thing, it's part of it. You know, and many people, for example, think about long COVID as being MECFS triggered by COVID. And the thing about MECFS that's really important, and, you know, patients with MECFS, which is, like, for any people's triggered by illness, you know, doesn't have to be COVID, it could have been like, you know, Epstein Barr virus, which is the virus causes mono, like you're saying, you know, Lyme. There's like all these things that kick off MECFS. 
And what we know is that one of the common hallmarks of MECFS is something called post-exertional malaise, PEM. And PEM is the consequence of, like you just said, the body doing too much. So, you tell me the story of every time you go do something too much your neuro immune system responds. And what happens is if you push through post-exertional malaise, it actually prolongs recovery. And so, and this can be, you know, physically pushing through, this can be emotionally pushing through, a cog really pushing through, and like you think about it, like, that is daily life for many neurodivergent people to survive in this world that is not built for us.
PATRICK CASALE: Yeah, Megan and I talk about that constantly about the fact that we're both very privileged to work from home, to work for ourselves, to have a lot of privilege in terms of employment. And I think about it, like, I'm intentionally placing myself in situations that are going to make me feel this way, but a lot of people don't have the choice, and have to go to work from a 9:00 to 5:00, or have to show up in large communities of people, and just thinking about how much impact that has on both the body, the immune system, and the nervous system, and not just feel pretty constant, and feeling like there's not a lot of escape from that in a lot of ways, either, in terms of recovery.
MEGAN NEFF: Mm-hmm (affirmative.)
MELISSA HOUSER: Yes, yes. And like when you think about, like, zooming way out, when viewed through an equity lens of like who gets to show up in society. And so, you have these layers that we might talk about like a lack of neuro inclusion. But like, if you don't have, like, the privilege of autonomy over like the safety of the air you breathe, or like whether you, in fact, are forced because as a survival requirement to put yourself in situations that harm your health, and there's so many layers of that. 
MEGAN NEFF: I think what really complicates it, you know, when I hear you talking about MECFS or some of these other conditions, these are not conditions that are well recognized by most doctors, and so, the experience, and then, especially, if you're a high masking autistic or ADHD person, the experience of chronic invalidation from the medical community that a lot of us experience of like, "There's something wrong with me, I'm tired."
Like, I remember what I was at the height of my fatigue, I had gone to a naturopath who was like, "Your adrenals are…" Like, "You're producing cortisol of an 80-year-old woman." And I was 31. And I went to my Western doctor, and I showed her these, like hormone tests, totally dismissed. And then, she's like, "Well, you seem kind of emotional." Because I was really anxious talking to a medical provider, "How about we start you on an antidepressant?"
MELISSA HOUSER: Hashtag health care, right? Like, this is what goes on. 
MEGAN NEFF: Yeah. So, that, like, chronic diffuse, just feeling of unwell paired with chronic invalidation is just, I'm trying not to swear, but like, I will swear here, it is a mind fuck.
MELISSA HOUSER: Yap, yap. Amen to that. So, you know, it's really hard. And I can send you a recording from a free educational that my organization put on last month about the health care system, and like, everything you just said. And so, we had a panel of clinicians, medical clinicians talking about, like, the system. 
So, a lot of times it's not the individual healthcare provider who's like setting out to, like, thwart and invalidate the patient. It's the system is thwarting and invalidating the clinicians, which, like, interferes with full access to one's cortex to like perspective taking, you know? What's the consequence of saying that thing right now to that person? Like, it's everything.
MEGAN NEFF: I love that Mel. So, I think an unfair burden gets placed on the providers, and the clinicians, and people don't often realize. So, I used to work in hospice, people don't often realize like, these medical providers are so booked in their days and like, it is like the system, like there's a reason so many medical providers are experiencing burnout, moral injury is so elevated in the medical community. So, this is not like medical providers being terrible humans, this is a much, like, the context around this is so much bigger, and I appreciate that you could bring that in.
MELISSA HOUSER: Yeah, like, it's, you know, healthcare system is the villain, not the individual people within.
MEGAN NEFF: Right, right. They've got 20 minutes with you, like 20 patients that day, and yeah.
PATRICK CASALE: And if we're being honest, most of the medical model is set up to just treat symptoms, right? Like, we're treating symptomology. We're saying, okay, if this is what you're explaining, and experiencing, this is how we fix it and alleviate it. And for autistic, or ADHD, or any neurodivergent human, it's so much more complicated than just saying, "Oh, Megan's emotional right now, let's start an antidepressant."
Like, that's just a quick band-aid fix that does not actually zoom out, as we're saying, and take into consideration everything that's going on behind the scenes. But if you don't have time to take in to consideration everything that's going on behind the scenes, it's a double-edged sword. It's like where do you fix the problem? And how do you alleviate that? 
I was telling Megan, yesterday, I have a healthcare collective that I'm a part of here in Asheville. And my PCP I think is quite open-minded, and really wants to be holistic, and integrative, and perspective. I sent her Megan and I episode on neurodivergence and sleep because we were talking about feeling dismissed when you go in and talk about sleep. And the issue is like, "Have you tried mindfulness? Have you tried relaxation techniques? Have you tried this? Have you tried this?"
And we're like, yes, we're fucking autistic. Like, I've researched everything under the sun that could help me sleep more than two hours a night. I promise you, anyway. She messaged me yesterday and was like, "I listened to your episode. I can't believe how dismissive I came across. I'm so sorry for that. And can you help me navigate how we can better understand how to help you sleep and rest?" And I thought that was so unbelievably validating. And I was like, "Okay, I can see this person and feel really comfortable here."
MELISSA HOUSER: I mean, this person cued safety right there? Like, "Oh, I just got chills." Like that, yeah, right. There are people who get it and can come to get it. So, and I don't know if this will air, or when this will air, or whatever but All Brains Belong has for the past year, we've been creating a free resource both for patients and for medical providers to different versions about this picture of all the things to just like be available of like, here's, you know, what's going on, here are some things that might help. 
And it has been about really bridging the double empathy problem, where, you know, when we think about, you know, the questions, or even the style, the way of clinical interviewing that medical providers are trained in, like, does not work for all brains, right? 
So, like, the medical writers are often not getting the information because they're not able to elicit the information. Like, the patients will tell you what's wrong, if you can, like, cue safety, and allow people to have access to their own cortex, to communicate in their own way. And we did focus groups of autistic adults, about like the words they use to describe their experiences. And so, that's all like built in to the tool. And so, like, when it's out, it'll be out like, maybe in like, three weeks. You know, I can send it along.
MEGAN NEFF: That's amazing. That is like one of the top requests I get is, can I have like a one-page handout to help me advocate with my medical providers? I'm so glad you've created that or are creating that. We'll absolutely link that because I think that'd be a really helpful resource. 
I like how you keep going back to cueing safety. I had a medical appointment last week and it's interesting. I'm not emotional. I've talked about that on this podcast. The one place I cry is in medical offices. Like, it's not intense, but it's like I'll say something vulnerable. And I think it's because I'm so prepared and scared about being misunderstood that it is really like the one place I cry.
MELISSA HOUSER: Yeah, I know, that resonates with me a lot. I, in general, don't seek a lot of health care for all the things. I have all the things also-
MELISSA HOUSER: Yeah, except very health care avoidant, right, exactly. But, yeah. Yes, like your nervous system is like, it's a trauma response, right? It's just, you know, you're waiting for the next hit.
PATRICK CASALE: Well, Megan and I have also talked about, you know, as mental health professionals how often autistic adults or adolescents, young adults won't come into a therapy room and say, "Hey, I'm autistic." And therapists will then say, "I don't work with autistic people, this is not my area of expertise." And refer the person out the door. And how invalidating and dismissive that is. 
So, if we take that in the mental health realm, and then, go into the medical world, there's almost this additional layer of fearfulness and vigilance around disclosure, and feeling safe, and feeling like you have to prepare to be dismissed or misunderstood, or you already feel dismissed and misunderstood in most areas of your life. So, it really does complicate seeking out treatment and support. 
And I think myself, like, talking about just chronic health conditions, people in my life, you know, especially, like family members, or friend groups, or probably like, this is all hypochondria, like this is like you're sick all the time, there's always an issue here, like there's always something going on. And that can feel really invalidating and shame-inducing as well to constantly feel like, I always feel this way and I wonder what it would feel like to have a week or two where you're like in optimal health as a 35, 36-year-old human being.
MEGAN NEFF: You know, one thing I've said my whole life pre-autism discovery was I just wish I could have a day in someone else's body. I just want to experience it. And I think it's because it's like, I don't feel like what I'm feeling is what other people are describing, but I don't know that because I only have my subjectivity. So, that's been my fantasy since I was a child, can I just experience someone else's body for 24 hours?
MELISSA HOUSER: Yeah, so what our model at All Brains Belong is that connection is the path to health. So, we do a lot of group medical appointments, for example. 
MEGAN NEFF: I love that. 
MELISSA HOUSER: So, not only do we have this piece of like, I learned for the first time that I'm autistic and/or ADHD, but I'm also like, I have this thing, and it's called all the things. And the thing you've been saying was happening, it has been happening. And guess what, there's like a ton of other people who are experiencing this also, and you have fun together, and you learn together, and you learn how to adapt the environment, and the routines, you know, to meet your access needs and, you know, be promoting neuro immune health.
MEGAN NEFF: I love that, I love that, this community of all the things. Okay, I'm going to ask a question, and if you're like, no, I just don't want to go there, like just-
MEGAN NEFF: …tell me. I noticed the first few years or the first year of entering autism advocacy space, I was really cautious of talking about anything related to gut health, nutrition, because for so long the message was, if you cure your gut, you will cure autism. And so, I wanted to steer so clear from any of those reductionistic stories of autism of this health thing or like if you cure your nervous system, you cure autism. I've heard that too.
So, that nuance of autistic people are more vulnerable to a ton of health conditions and supporting it supports our well-being, and no, we're not trying to cure autism, that sort of middle line of here are some things you can do to support yourself. Like, do you ever experience tension around that or?
MELISSA HOUSER: Yeah, no, it's interesting. I, like, sick mono-tropism. I, like, forgot to experience tension around that because I like experience tension by so many other things. So, I would say that it's not that these neuro immune conditions, like I read this book about like, some component of all the things that was talking about, you know, it had like a curative narrative, and it was gross. Anyway, whatever, I won't even like name the book. 
But it is worth like throwing that narrative out, like I am autistic, I have always been autistic, I always will be autistic. And in fact, it is the fact that I am autistic that allows me to zoom out and see the whole pattern because that's, like, what my brain does, right? 
So, it's that. These patterns are more common because of the way that we're wired. And most of the environment is unsafe, it's the environment that's unsafe. And so, that is why we're going to have a dysregulated autonomic nervous system, we're going to have a dysregulated immune system, we're going to have mast cells, which are a type of immune cell that like crosstalks between the nervous system, and the immune system, and the soft tissue, there's mast cell receptors on every organ system, like, so it's a good search term because that like managing your mast cells is like part of how you support this cluster. 
And it's not because we're trying to like, not be autistic anymore, we're trying to like, not be in pain, and we're trying to not have a blood pressure plummeting, we're trying to not have you know, trouble breathing, we're trying to not have a GI tract that's completely flipping its lid all the time when we eat. Like, that. So, I would just name…
MEGAN NEFF: Yes, I love that. And then, this is where also like mental health, right, so many of the things you just named are going to cause mental health issues, right?
MEGAN NEFF: A dysregulated nervous system, fight/flight anxiety. So, for therapists like Patrick and I, you know, we aren't typically trained to look for, like nervous system dysregulation as the cause. So, we'll go straight to like, here's some emotion regulation strategies. Not that those don't have an impact on nervous system, a lot of emotion regulation strategies are downregulation strategies, but I find adding an element of nervous system work in therapy for autistic people is so important. 
MELISSA HOUSER: I would add to that because like, what you're both bringing to the community is so critical because, you know, not only do we have patients who are seeking mental health support from like, neuro normative therapists that are like, you know, pointing out their irrational thoughts or something, but also, we bring this layer now, in the context of all the things that not only is emotional dysregulation, you know, equal, nervous system dysregulation, actually, making the mast cells more pissed off, actually, impacting the immune system. 
But the other way goes too, so if you have, you know, for example, where I am in Montpelier, Vermont, there was just really devastating floods. So, like, everything is wet and there's all kinds of crap in the flood water, and so, you know, a lot of people's mast cells are flaring. And so, what they may feel in their bodies may not be, "You know, I feel my mast cells." Like, they just feel terrible. They don't know what kind of terrible they feel because it's not like one or the other, it's everything because everything's connected.
MEGAN NEFF: Okay, so my internal clock just went off around how long we've been talking. And one thing I'm trying to be mindful of is as much as we talk about some of the hardships and the challenges we experience around navigating healthcare, I also want to have some words of encouragement, or empowerment, or just really practical advice that people can take away. So, I'm curious, kind of, what do you recommend to people, if they're listening to this, and they're like, "Oh, my goodness, I think maybe I've got all of the things but I didn't realize it." Like, what's next steps for them? Especially, if they're struggling to navigate with their medical team, things like that. Like, where do you start with people? What are some of your recommendations?
MELISSA HOUSER: I think, like, first step is to figure out that this cluster or this constellation of related medical conditions may apply to you. And, you know, first off, I need to say the disclaimer that of course, this is like general education, this is not medical advice. But like in general, what people find helpful is first step to recognize that this pattern applies to them, and then to learn about the pattern because a lot of what we talked about earlier were some parts of the management of all the things, maybe other parts worse. A lot of times people know that, they know it about themselves, and there's also a ton of information out there amongst the neurodivergent community. They may not know it, they may not like, you know, know that all these conditions are connected or, but a lot of people do because they feel it in their own bodies, and there's a ton of information. 
And I think what we've tried to do at All Brains Belong is like, synthesize all that information and put it in one place. But I think figuring out the things that make you feel better, that don't make you feel worse, like stopping the things and working with, you know, your personal medical provider to, like, figure out what are the things that I'm doing that might be making this thing worse, eliminating those things that are maybe making you worse, you know, is the first step I think. 
And a lot of times, especially, you know, I would say like, if you're going to pick like one search term, I would read about mast cell activation syndrome, MCAS because if you can understand mast cells, this is a cornerstone of this constellation.
MEGAN NEFF: So, I actually went on a rabbit trail a little earlier this year, and I was like, "Oh, maybe this is the missing thing." I've then, like, took a one-hour course on it. And like, in the course, the provider recommended a ton of vitamins. But I walked away from the course and I was like, "I don't actually know how to implement this or start." 
MELISSA HOUSER: Yeah, yeah, yeah. And I think, like, figuring out what your triggers are is the most important thing. And so, like, I'll give a personal example, sometimes when I do podcast interviews I shut off my air purifier because it makes a noise, and then, I feel terrible afterwards, and then, I'm like, "Huh, I think it took like the, like, sixth or seventh time over the past year." And I'm like, "Really, it's every podcast interview, what is that? I'm not stressed out." Like, I shut the freaking air purifier. There's something in the air that my mast cells are responding to. So, like, you have to be like zooming out, you feel like zoom out on your day, on your week, on your month, and like, identify these things, there's no test. Like, there's going to be no test that says, "You know, my mast cells are pissed off by something in my office." Like, we're not going to have that. It's like being a detective in your own life. 
Or I've never had a problem with dairy, but after I had COVID I can't eat dairy anymore. It took me like a few weeks even to be like, "Wow, I feel so terrible." And I realized that's what it was. And so, yes, you know, there are a variety of medications and supplements that can be helpful, and like, you know, life-altering for many people in the context of all the things. But trigger elimination is really important.
MEGAN NEFF: I love that idea of become a detective in your life.
PATRICK CASALE: My mind immediately goes like to the cynical place, though, like when it's all the things, and then, you're like, I have to identify all of the triggers and all of the things. It feels very overwhelming. So, I think for our audience, like, one thing at a time, you know? Try really hard to start small. So, that's a good example of having like, major throat surgery this year, and still being impacted by it.
MELISSA HOUSER: Sorry to hear that. And possibly related to all the things, right? So, yeah. The other thing is, Patrick, you brought up sleep a little while ago, that is a critical starting piece as well. When I listed the different buckets or like Megan's use of planets, you know, one of the things I listed was face, teeth, jaw. So, many of us we have long faces. You know, we have more of an oval-shaped face as opposed to a round face, right? Like, the three of us, like, look at our long faces. And so, we have, therefore, a narrower airway. 
And if we also have Hypermobile Ehlers-Danlos, for example, we may have a high-arched palate, her palate though that like also is making the airway more narrow. And so, there's like extent, I should have said this earlier, each piece of all the things is known to be more common in autistic people and some of which are known to be more common ADHD which, of course, are like, you know, almost superimposed Venn diagram circles, right?
But the idea being that, you know, these pieces are known by healthcare, but they're known as pieces, not as a whole entity. So, like, yeah, you might say, yes, you know, I know that obstructive sleep apnea, for example, is more common in autistic people because that is known, and having, you know, obstructive sleep apnea is more common in people with long faces and higher arched palates, that's known. Obstructive sleep apnea is more common in people with Ehlers-Danlos Syndrome, that's known. Put it together, zoom way out, this is one thing and a lot of us have sleep apnea. 
And so, you know, in my medical practice that is a starting place in many people, is identifying what's going on with sleep because it is so much bigger than like, like the examples you gave Patrick of like, you know, do you have a bedtime routine? Like, this is neuro immune, right? So, that is what I have to say about that. Fixing your sleep is essential and like if you don't fix your sleep, it's very hard to get the rest of all the things better. 
MEGAN NEFF: Yes, I talk about that a lot, too. Same thing for mental health, it's like well, if sleep's off the rails, let's start there. Okay, so now I'm super curious, one thing that I hear and know is also common among autistic people is our voices tend to be raspier or just have a different tone. Like, both my kids have done speech pathology. I know and I talk more from my throat, so I've kind of a raspy voice, is that connected to the like high arch, and what you were just describing about throat jaw stuff? Or is that a different mechanism?
MELISSA HOUSER: That's really interesting. I've never been asked that question before. That's a pattern I certainly see a lot and that I personally experience. And I wonder… I would imagine, I'm just like speaking off the cuff, I have no, like, literature to support what I'm about to say. But it's probably multiple things, right? So, raspiness might be because there's like mucus on the vocal cords because there's mast cell dysfunction. And so, you know, like, the allergic responses to things in the environment, so that might be playing a role of it. 
There's also like the dyspraxia component of like, ineffective or inefficient motor plans of like, when I speak, you know, I'm using, like, all of my upper body at the same time. I'm turning all of it on because like, that's how I learned to do it. So, I keep doing it this way, at almost 40 years old. Or, you know, if I have, you know, Hypermobile Ehlers-Danlos syndrome, and I'm working harder to hold myself upright, my diaphragm might get stuck, and I'm using my neck muscles to breathe, and so, these muscles get really tight, and so, that tension may be impacting, you know, vocal cord usage. Anyway, I would imagine it's like many, many things that are connected to all the things because everything's connected to everything. 
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: So, it's blowing my mind. I'm like, I wonder if my [INDISCERNIBLE 00:37:34] is diverticula? [CROSSTALK 00:37:36] 65, that's a whole conversation that we can go into, but it's the third issue that I have at 36 years old that I've had two surgeries for that impacts my vocal cords, that impacts everything, and it's just interesting to start conceptualizing it from this lens, and the recognition of everything being so connected, and yeah, potentially impactive.
MELISSA HOUSER: All that's related because it's definitely related, it's like on the list, is that connective tissue goes to the whole body, and so, if you look at the connective tissue of your esophagus is extra stretchy than like, the outpouching within the connective tissue. Like, you push it through same way that like, a lot of autistic people who struggle with, like chronic constipation, it's because the colon gets extra stretched out, and then, loses it squeeze. You know, I mean, there's a lot of ableism in healthcare, right? But, you know, of course, that autistic person is constipated because, like, look at their terrible diet or look at their inactivity. It's like, no look at their connective tissue.
MEGAN NEFF: So, I'm having like both aha moment, and kind of like an oh, shit, moment. Like, I think I sometimes feed into reductionism, partly, because my head just would like, it would be too much to contain. But like, I think I probably over-attribute a lot of autistic struggles to interoception issues and autistic burnout. I actually had this thought a few weeks ago when I was reading more on the research on autism and chronic fatigue of like, yes, burnout, but like, also, all of these, like, all of the things that you're describing, or even hearing that thing about the colon and constipation, I didn't know about this stretchy tissue aspect of it. So, there's more than interoception struggles going into that. It's kind of overwhelming.
MELISSA HOUSER: It is overwhelming. So, like, I wouldn't say that, like, oh no, I like erred on the side of saying things were attributable to interoception. Like, there are also interoception differences, but also, when you're Hypermobile because for anyone, you don't get feedback, you don't get like proprioceptive feedback until you're at the end range of motion. And if you're like extra stretchy, you go past, you know, what someone else's end range of motion is. So, you don't feel your body, you don't get that proprioception until you've gotten big movements. 
So, you know, when, like, I don't ever thought about this until, you know, I learned about all the things. But you know, I don't think I really feel my face unless I'm like smiling really, really big or like I think I'm smiling, but I'm really not. And the people are like, "Why are you so upset? "I'm like, "I'm not." Anyway, all that it's like that. So, it's [CROSSTALK 00:40:20]-
MEGAN NEFF: So, do people feel their face? 
MELISSA HOUSER: I think people feel their face. I think they, like, know like what facial expression they're making [CROSSTALK 00:40:29]-
PATRICK CASALE: We can have so many conversations on this [CROSSTALK 00:40:33].
MEGAN NEFF: …and you're listening to this, like, I want people to comment if they feel their face.
PATRICK CASALE: Yeah, when you see the reel for this video, or for this episode, please comment if you can feel your face. We would like to know, this is part of our research.
MEGAN NEFF: Well, it's the same thing with interoception, when I read about how interoception is measured, it's you connect a person to a machine and ask them to detect how many heartbeats they've had, and then, how accurate they are. And I was like, "Wait, what? People feel their heartbeat." Like, unless you're, like, sprinting-
MELISSA HOUSER: Well, there's like a-
MEGAN NEFF: …but otherwise no.
MELISSA HOUSER: So, the thing is, what's really interesting is, you know, you could feel like, I don't feel hungry until I'm like ferociously hungry, and then, can like, no longer access food. But I feel my heartbeat all the time. And I feel all kinds of things all the time. Like, that was surprising to me to see how common that is, that like people might have, you know, an increased sensitivity to some types of interoception signals, but not to the others.
MEGAN NEFF: Yeah, yeah. No, and that difference of, and I think that's really important too of like, some interoception might be exaggerated, some might be under, and then, it's really more about the differentiation that causes a struggle. Can you differentiate? Is it accurate reflection of what's objectively going on? Yeah.
MELISSA HOUSER: And like what you explain to yourself, so for example, like in my medical practice, when people learn about all the things, and then, something happens, they have a narrative to understand it. So, to the extent that your mast cells are triggered by your autonomic nervous system being triggered. Like, so that's where this integration of, you know, nervous system regulation strategies actually directly impacts the immune system. And part of that is like, knowing what this is, and not like… I mean, it's not that you don't worry that because like, it's still like, uncomfortable, and we need to have it not happen because it's impacting your quality of life. But we don't, like, you know, that like special narrative of like, I don't know what's wrong, and no one knows what's wrong, and they keep doing tests, and they come back normal, and there must be something really very dangerously wrong with me, that triggers mast cells, triggers autonomic nervous system, therefore, makes your symptoms worse.
MEGAN NEFF: I love that kind of tie-in. And I did this a lot when I worked with chronic pain, not that it's all in your head, that's a terrible message. But the story we end up telling ourselves about the pain signals will influence whether or not we get more pain signals or not. And I'm hearing that same as you talk about the narrative around your health conditions and what you're experiencing is going to actually influence your mast cells and influence your body's response because if your body thinks it's in danger, it's going to say, "Hey, we need to go on high alert." And that fight/flight activation. So, absolutely, not that it's all in our head, but that the story we tell ourselves about our experience will influence what's happening in our body,
MELISSA HOUSER: Just from a nervous system regulation standpoint, how could it not? You know, it's part of like, one of the strategies that one… But the other thing that I would say is that, like in my medical practice, you know, many people know that they're autistic and/or ADHD, many people come because they're wondering if they're autistic or ADHD, but many people come not having anything to do with that. They come because their needs were not met by the traditional healthcare system. And amongst that group, that group is much more likely to have all the things and that group is much more likely to be autistic and/or ADHD. 
So, like, it goes both ways. And either way, when people just, you know, I would say very similarly for many people, when they discover their neuro divergence, that organizing narrative, like you said Megan, that organizing narrative is so… it can be like life alteringly helpful for many people so it is with all the things. Like, having a narrative to understand often like decades of your whole life of living in your body all through a single lens, that's the point.
PATRICK CASALE: So, I think that we can have a whole series with you now because this is so unbelievably informative and honestly enjoyable. But I am always timekeeping for Megan's purposes, and we are getting close. So, I think that is a perfect way to wrap up with what you just said. And also, I think we're going to have like, once we release this episode, so many people Googling, "Can I see this practice in Montpelier, Vermont for health care?" And it's unfortunate, I wish that we knew about more practices within our country who are doing things the way you are doing them. It's really amazing. And I appreciate you showing up for the community the way that you are.
MELISSA HOUSER: Thank you and I think, like, this is probably my, like, most enjoyable podcast experience. Like, this has been wonderful.
PATRICK CASALE: I like hearing that. We are just going with the flow and seeing where it goes. And that's kind of been our routine since day one. And I think that's what works for us. And it's felt really, really enjoyable so far.
MELISSA HOUSER: That's awesome. And I'll send you… when our All the Things resource is out, it's almost out, the flood was a setback. But we're still on track, we just have to do some… Because we also want to be using universal design principles in presenting this information. So, we have text, and we have graphics, and we just have to record some videos, and then, we'll be ready to go.
MEGAN NEFF: So, yeah, I did want to ask Mel kind of so obviously, if people are in Vermont, they can come to your practice. But when I was on your website, it felt like you were also providing, at least education, but maybe not medical services to people outside of Vermont. But for people who might be interested in your work, like, are there ways that they can connect with you or connect with your center? 
MELISSA HOUSER: Yeah, definitely. So, first off, we do educational trainings that, yes, most of the trainings that we do are for organizations of a wide variety of types. But we do have people who they are coming to learn about specific health topics. So, it's an educational consult. So, I do those. And so, it's not medical advice, it's not prescribing medicines or making diagnoses. But like, you know, we definitely have people who come and want to learn about all the things, so we definitely offer that. 
And then, we have free community programs. So, for adults, we have Brain Club, it's virtual, it's open to anyone, everywhere, and it's free. It's [CROSSTALK 00:47:15]-
MEGAN NEFF: …it's open to anyone 
MELISSA HOUSER: [CROSSTALK 00:47:17] we have people… Like, last week we had somebody from the UK and somebody from Australia. Anyway, so it's open to everybody and like, it's a community education on everyday brain life. And we have, like, panelists, and presenters, and stuff, and it's really fun.
And for kids, also, open to anyone, anywhere, we have Kid Connections. It's a friend-matching program. So, like, we connect kids based on their shared interests, like their shared [INDISCERNIBLE 00:47:42] and [CROSSTALK 00:47:44]. Yeah, that was a kid's idea. So, we have a junior advisory board, so this kid is nine-year-old. We were like, "How do you make kids feel like they belong?" "You let us do what we love." Holy crap, yes. So, anyway, that's what Kid Connections is.
PATRICK CASALE: And where can people find this information for those that are like, "Oh my God, this sounds amazing." Where do they find that?
MELISSA HOUSER: allbrainsbelong.org.
PATRICK CASALE: And all of this information will be in the show notes so that everyone has easy access, and all of the links, and all of the information that Mel provided today. And we really appreciate you coming on and making the time. This has been really enjoyable and wonderful, wonderful resource for the community. 
MELISSA HOUSER: Awesome, thank you so much.
PATRICK CASALE: And to everyone listening to the Divergent Conversations Podcast, new episodes are out every single Friday on all major platforms and YouTube. Like, download, subscribe, and share.

Friday Aug 11, 2023

There are a lot of nuances of Autistic masking, and it's become a sensitive and polarizing topic these days online and in social media.
With all the various opinions, information, and anecdotes out there, it can be confusing to understand what masking is, and how privilege and different social identities intersect with the experience of unmasking. Masking and unmasking impacts mental health, identity, and relationships in significant ways. 
In this episode, Dr. Megan Anna Neff and Patrick Casale, two AuDHD mental health professionals, delve deep into the concept of Autistic masking as well as share their personal experiences with masking.
Top 3 reasons to listen to the entire episode:
Understand how autistic masking is not just about blending in, as well as how it can be both beneficial and harmful.
Identify ways that privilege, safety, and race intersect with masking.
Learn strategies to address burnout caused by masking and, if desired, to unmask if you are in a position and place to do so.
Masking can be a very charged and complex topic, so now, more than ever, we need to delve deeper into the complexities of autistic masking and promote understanding, empathy, and inclusivity.
Blog Post: https://neurodivergentinsights.com/blog/what-is-masking-in-autism
You can also grab the Autistic masking checklist when you sign up for Dr. Neff’s newsletter: https://neurodivergentinsights.ck.page/51e276c041
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.
PATRICK CASALE: In today's episode, we are going to talk about autistic masking and unmasking. And we want to just put out a warning that there are a lot of sensitive topics that are discussed and we just want everyone to be really mindful of that before starting to listen. And we just want to add that disclaimer to this episode. So, before Megan and I ever hit record, we always talk about, like, what do you want to talk about today? Because we never know until we hit record. 
But I think this is a good topic. And it's definitely one that we could, probably, have like a whole series on it in a lot of different… there's a lot of nuance here.
MEGAN NEFF: Yes, nuance. That's a good word for it. And I hope that's what we can have today is a nuanced conversation on masking. Okay, this is autistic. I mean, but here's how I'm like if I was to put an agenda for our podcast, which we never do, but if I were, it would be like, define autistic masking, talk about the costs of it, and talk about the benefits of it. I think those are three, like, key anchor points for us to hit in our conversation today. Why I'm I the one bringing structure today?
PATRICK CASALE: [CROSSTALK 00:00:57] episode. You are going to take away these three key takeaways just like an NBCC-approved training. And I like it. I think that we should define it. I think that's important. I think that, you know, because there's a lot of conversation about masking going on right now. So, I think it's important to define it, and I will let you do that.
MEGAN NEFF: Yeah. So, it comes from the research of Laura Hall, who is, I believe, based in the UK. And again, I think her pronouns are she, her. I've tried to like learn about her, I've tried to figure out if she's autistic or not, but I don't see that anywhere. But I assume people doing a lot of research on autism are interested in it for a reason. 
But she's the one that did the research that got the female autistic phenotype kind of on the map, which we now know there's some problems with that phenotype. But that work is so fundamental for understanding non-stereotypical presentations of autism. 
And her and her research team also developed the CAT-Q, which is the Camouflaging Autistic Traits. And what is really cool about this is it's psychometrically robust. What that means is, it's past kind of the standards for something to be considered a reliable and valid assessment. So, this isn't just some, like, social media thing that's been talked about. This is something that is validated in the psychological research that this is, in fact, a thing. 
So, what is it? It's the kind of deliberate, well, there's three components. It's the deliberate suppressing of autistic traits. And so, that might be repressing, stemming, and repressing things that we do to self-soothe ourselves. 
And that's really important because we, as autistic, people have a lot of kind of natural things we do to self-soothe. Like, right now you're fidgeting with your hands. Yep, I will probably start pacing soon. And there's things we do that regulate our bodies. So, one component of autistic camouflaging is suppressing those traits. 
Another component is something called assimilation and that's where we're assimilating into neuro-normative culture. So, that might be like forcing small talk, or forcing ourselves to do things that aren't natural. People often describe them like they're pretending when they're in social roles. 
And then, the last one is compensation. And that's where we're learning social skills through watching people, watching TV. Perhaps, like for me, I'm sorry, I need to catch my breath. 
MEGAN NEFF: My long COVID is making it so it's hard to breathe and talk at the same time. So, I'm just going to catch my breath. 
PATRICK CASALE: Megan and I are both sick right now. And so, just a real glimpse into our day to days when we're here, we [CROSSTALK 00:03:57]-
MEGAN NEFF: So, long-winded info dumps when your lung capacity is limited, apparently, doesn't go well.
PATRICK CASALE: We are going to do an episode on autism, and chronic health conditions, and illness. So, I think that is something to just stay tuned for as well.
MEGAN NEFF: Okay, yeah, so the last one is compensation. And that's probably what most people think, or actually, it's the first one, but I'm just saying the last. That's probably what most people think of when they think about autistic camouflaging or masking. That's where you are mimicking kind of neurotypical ways of communicating. 
I always have talked about it. Like, I have a running Google doc in my head. Like, I would watch people and when they would say a phrase I liked or they would use a hand gesture I liked, I would kind of take note of that, put it in my Google Doc, and then, I would copy that in different situations. 
So, those are the three components of autistic camouflaging. It's typically called autistic masking, but camouflaging is the more umbrella term that captures those three distinct components of what it means to camouflage your autistic traits.
PATRICK CASALE: Thanks for giving that overview. I think that's really helpful when you have the terminology and the language to put to some of these experiences. And to really identify those three components. 
And I can think of so many examples for myself with, you know, doing exactly what you just said. I like that you mentioned it that way, like a Google doc that's constantly running, that you can constantly refer back to, that you almost have on like copy and paste mode where you're like, "Oh, it's this situation, paste this hand gesture, paste this phrase. Like, when I say this thing I notice people laugh, or I notice that people nod their heads. That makes me feel more comfortable in the settings." 
So, like, my immediate reaction to masking and camouflage, my immediate thought is exhaustion. That's always where my brain goes is exhaustion because I think so often, and you do a great job of describing like, sensory soothing, and safely unmasking, and techniques and strategies to do so. My immediate reaction is like this is constant for us people. Like, this is a thing that you're doing 24/7, a lot of the time, and I just think about how much energy is spent moving through the world like that.
MEGAN NEFF: Yeah, I mean, it's really a double whammy, and like that feels like a child, like, I need a new phrase because whammy feels so childlike. But it's really a double whammy because on one hand… so the compensation part requires a ton of prefrontal cortex energy and that's where executive function lives, where our mind is making decisions because we're analytically deciding, okay, what does this situation need in this moment? We're not intuitively doing it like allistic brains. That requires a ton of prefrontal cortex energy. 
At the same time, we are repressing the things that self-soothe us, and that would self-soothe our amygdala and self-soothe our nervous system. So, we're both putting more tasks on the nervous system and on the brain while diminishing the things that would restore our energy and self-soothe.
PATRICK CASALE: It's really a challenging Catch-22 because those things really don't go hand in hand, right? So, if you're repressing, if you're suppressing, if you're assimilating, if you're camouflaging, if you're trying to do any of the things that you listed, and you're suppressing your need to stem, you're suppressing your need to do any of the things that soothe your nervous system, the internal, like, push/pull, it's like tug of war in a way is really hellacious and it can be so, so, what's the word I'm looking for? It's so emotionally overwhelming. 
And I think that for so many of us, myself included, I experienced most of my world like that, where it's just constant, like, I can't find the words, but it feels like you're constantly thinking about every single action that you do, you're thinking about every single way that you respond, you're thinking about everything. And sometimes you're not even aware of the thought processes that are happening. And it's just so much energy.
MEGAN NEFF: So, do you still do that, Patrick? Like, I know, you and I both have talked about the privilege of being self-employed and working from home, like, and I know a lot of the people you work with are neurodivergent, but not all. So, do you still… like, I would say, in my old life, what you just described, absolutely. And I'd come home exhausted and literally feeling sick. But I don't feel that anymore. But it sounds like you still do.
PATRICK CASALE: Yeah, I think I still do. I don't think I feel it as intensely as I used to. But I noticed that there are a lot of interactions that I have to have throughout the day, even being self-employed, where I have to come in contact with a lot of people who I have to, or I feel like I need to present a certain way, or that in certain meetings I have to act a certain way. There's a lot of, as you usually use the phrase like pings and pings going on throughout the day. And I think there's just a lot of constant thinking about how I'm responding to things. 
I use the example of like writing an email, and then, like having to add punctuation, and having to add exclamation marks, and almost wanting to insert an emoji to like soften how I'm communicating and like even those little things build up, and it's certainly not as exhausting as it used to be when I had to go to an actual office and spend time with a large amount of people. I have much more control over what my day-to-day looks like and the sensory input that comes in. But like, I do notice it in a lot of interactions still throughout the day where it just takes an enormous amount of energy and capacity to get through them.
MEGAN NEFF: So, okay, is there software developers listening to this podcast? I really think this is a good business idea. I mean, it perpetuates neuronormative standards. So, you know, that's my disclaimer, but developing like some sort of filter or app where you could use ChatGPT and have it translate, like autistic to allistic speech in the moment, like via text or via email because I think I've talked about that on the podcast before, I'll do that, I'll put it in ChatGPT. But if you had something where you could do that on Google, like, "Now allistic this email."
PATRICK CASALE: That's a great idea. Like, almost like Google Translate, and then, you just hit that button. 
MEGAN NEFF: Yep, yep. 
PATRICK CASALE: Then my direct-like statement turns into this really like…
MEGAN NEFF: Beautiful flowery. Like, "I hope this email finds you well." Like, every time I do it on ChatGPT, "I hope this email finds you well. I'm writing to…"
PATRICK CASALE: "Best wishes, Patrick." Oh, man. Maybe a PS, "PS, I hope that your family is also having a great week." Oh, my God, yeah, yeah, but-
MEGAN NEFF: So, does it, oh, did I interrupt? 
PATRICK CASALE: No, I don't know where I was going.
MEGAN NEFF: I mean, this actually kind of is a natural segue into some of the costs of masking is that when we mask we perpetuate neuronormative culture because we're kind of normalizing that those are the standards, versus when we're visibly autistic, we're introducing the world to a different way of being, which I think moves society toward a more neuro-inclusive world.
PATRICK CASALE: Yeah. And I think that, you know, you and I have, and you just alluded to this, too, is that when you're not privileged in the way of employment, in terms of owning your own business, creating your own hours, when you have to show up to a job, when you have to show up and maybe pick up your kids at school, or when you have to have interactions throughout the day or meetings that you did not create for yourself or agree to, there is so much mental anguish that goes into that, too, because you're physiologically, and emotionally, and psychologically preparing for each individual interaction. And I think that when you start looking at it that way, the barometer goes like way up, and the thermometer almost gets to like the boiling point, in my opinion.
MEGAN NEFF: Yeah, yeah, that made a huge difference in our household and in my mental well-being, you know, as the mom or woman in a cishet marriage, when kids have birthday parties it's often expected to the mom takes the kids. Once we realized I was autistic, my husband started taking the kids to birthday parties. And it doesn't require the same energy for him as it does for me because birthday parties, taking my kids to them were like so sensory overloading, all of the socializing, the awkwardness of like, I mean, there's context shifting, or it's just terrible. I feel so much empathy for any autistic parent taking their kids to birthday parties. And once we knew that, we were able to shift, to do that, and reduce some of those situations, which has been really, really helpful.
PATRICK CASALE: That's got to be helpful and that's fantastic for you both to be able to navigate that. I also think like you and I were texting because we just went through the Fourth of July. And that's another thing, like holidays, right? And gatherings, and family events, and work parties, and any situation where you are expected to show up, and expected to participate, and expected to be present. And I just think about how much I just do everything in my power to avoid those situations because I really can't handle them unless I have mentally prepared for months at a time.
MEGAN NEFF: Yeah, no, I'm with you. And I think if it wasn't for my kids I would probably never go to things like that. And that's where, especially, for autistic parents, I talk about kind of value hierarchies, and there's going to be conflicting values. And so, for me, giving my kids the experience of family gatherings is a higher value than avoiding overwhelming situations.
I associated to this so it's like going to be, there's not even a link here, I'm just sharing an association I had because it was a thought I had last night that… because my workbook this month is on masking and I've been reading on masking more. And I had this thought, I think there's two kinds of unmasking. We haven't even introduced the concept of unmasking yet. But I think there's two kinds of unmasking, probably more, but here's what's in my head. 
The first kind of a masking is what we do with ourself. So, especially, if you're a late-in-life diagnosed person, a lot of us don't know ourselves very well because one of the costs of masking is having a diffused sense of self because we're almost always kind of responding to the needs of others in the room, picking up what does this person need me to be? Okay, I'm going to adapt and I'm going to become that. So, we often don't know ourselves very well. 
So, I would say, that form of unmasking with ourselves where we're getting to know like, what brings me pleasure? What are my delights? What are my preferences? Like, what do I like? What do I value? I think every autistic person would benefit from doing that. 
Then there's unmasking that happens in public. And that is, okay, do I send this email in an unmasked version? Do I go to this meeting in an unmasked version or masked? And that I think becomes a lot more complicated of a question. And a person might choose to do that in some situations, but not in other situations. For some people, it's never safe to unmask in public. So, in my brain, it felt helpful to differentiate these two different kinds of unmasking, self-unmasking, and public unmasking. 
PATRICK CASALE: I think it's crucial to differentiate. So, number one, like self-unmasking, I think that's really important, like you mentioned, that diffused sense of self and really not having a sense of who I am? What do I enjoy? What brings me comfort? Any of those things. And it's interesting to start identifying those things later on in life too because you're like, looking back, like you're stepping outside of yourself, and like looking at this timeline? Like, did I enjoy any of this? Was this something that I wanted to be included in? Was this something I wanted to participate in? Or did I feel like this was a necessary thing for, you know, social adaptation and survival in a lot of ways? And that's interesting to pay attention to. 
And then, number two is very, very important to notate. And I'm glad that you named that. And there are situations where it's just simply never safe to unmask, and there are populations of people who are going to have significantly more risk unmasking as well.
MEGAN NEFF: Yeah, yeah. And that's where, I think, the nuance is really important. So, part of why we're doing this podcast today is because I posted an infographic I made that I knew was going to be provocative, but I wasn't quite prepared for some of the feedback I got, especially, on LinkedIn, where I talk about the benefits of masking. And the reason I made that infographic is because I'm seeing a lot of kind of… I don't like using this word, but like a lot of rigid narratives around masking, a lot of universal statements. 
Like, someone was sharing how they were shamed for being a masking autistic, or statements like masking's always bad. And those conversations, I think, are really problematic because it's not leaving space to talk about the complexity of race, and power, and privilege, and safety. Or even the fact… and people will disagree with this, but I identify the ability to mask as a privilege. Like, there's plenty of autistic people I've connected with who have said, "You know, I would love the ability to mask. It would have protected me from blowing, it would have…"
And so, I think the conversation around masking, I'd love to see a lot more nuance to be able to consider, like the issue of safety and race, for example. For a black person, unmasking is rarely safe.
PATRICK CASALE: Yeah, not just for a black person, for a trans person. Then we start talking about multiply marginalized identities, and we're talking about very rarely safe spaces to unmask.
MEGAN NEFF: Yeah, yeah. And I do want to credit, so a lot of my thinking around this has come from listening to voices like Sandra, @nd.narratives, Tiffany, @fidget.and.fries. They have got great… @nigh.functioning.autism is another one. And they did like an Instagram live, together, the three of them where they talked about some of these issues. So, I just want to credit that like, this is not me coming up with my own enlightened thinking. But the labor of black autistic people who have put a lot of thought into this.
PATRICK CASALE: The nuances, so, one, just want to give you props for doing that, for crediting where credit is due. We hope to have some of you on the podcast, at some point in time, if you ever come across this podcast.
MEGAN NEFF: Please come on.
PATRICK CASALE: I think the nuance is so important and the nuances where things get really murky where people can, like you said, take some pretty rigid stance and make some pretty rigid blanket statements. And I don't think that gives room to have some of these difficult conversations about different experiences. And I'm trying to really choose my words carefully right now. But I do think that there is privilege in making statements like that as well, to have rigid blanket, black-and-white concrete statements about some of these experiences.
MEGAN NEFF: You think that that is… Yeah, no, I think I know where you're going. Like, things like being anti-racist, or anti-transphobic, black and white statements are welcome there. Is that your train of thought?
PATRICK CASALE: No. So, I guess what I'm saying is, I think there's privilege in saying, like, masking is just bad in general, or like-
MEGAN NEFF: I thought you were saying that sometimes rigid narratives were good. So, I was-
PATRICK CASALE: Those are good if we're like, I think, if we're, like, talking about, like, anti-racism is a good philosophy.
MEGAN NEFF: Yeah, okay.
PATRICK CASALE: Right? Yeah [CROSSTALK 00:21:24]-
MEGAN NEFF: That's where I was like, okay, I'm trying to make sure I'm-
PATRICK CASALE: Right, yeah. I'm sorry, I wanted to be clear, and I was not. But I think there's some privilege in saying some of the things that-
MEGAN NEFF: There's privilege yes, absolutely. If you're going to make a blanket statement like that there's privilege in that. It's often, again, I don't want to make sweeping statements, but I do find it is often white people who make those sweeping statements who aren't considering their white privilege in the conversation. 
Okay, I just want to, well, maybe I want to say it. If I do say it, this will be triggering content, which maybe we will cut, Patrick. But what got me so upset yesterday was white people comparing, like telling people to mask is, and then, they made comparisons to race-based trauma. I won't say what they said. But they're making a comparison to a race-based trauma for telling autistic people to mask. 
And like, it kind of broke my heart that people who are in disability advocacy spaces, A, would like use that metaphor. Like, I'm shocked anyone is using comparisons to race-based trauma at this point, and B, that they want to be thinking about their identities from an intersectional frame. I just think there can be so much harm done in advocacy spaces when you aren't also thinking about your areas of privilege.
PATRICK CASALE: Yeah, I mean, I agree 100%. And I hope we don't cut that. I understand why there's considering.
MEGAN NEFF: I decided not to share specifics so that it, yeah.
PATRICK CASALE: Yeah, but I think that's spot on. And that's what we have to try so hard in these advocacy spaces to have these complex conversations. But I try to see every side of things in these spaces, in these conversations because I don't want to, you know, I'm going to get it wrong at times, I'm going to say the wrong thing, and I want to hold myself accountable to that, want to learn as we go. And I just think that when you can get so entrenched in like, advocacy, and defending your own reality and identity, and it's, especially, newer, it's very polarizing. Like, it can take over and consume. So, I think it's very easy to just overlook certain things. And it just can create a lot of conflict. And I'm sorry that you had to experience that and… 
MEGAN NEFF: I mean, yes, I experienced it, but I feel more sorry for like what it represents in the autistic advocacy community. And, again, I've heard black autistic people speak about how racist disability advocacy spaces are. And I think because I've probably curated who I follow on Instagram, and who follows me, I've been kind of protected from that. But then when I had this post go viral on LinkedIn, I was exposed to that, and it was just really disheartening to like see it. But no, I mean, like I'm impacted by it, but my identity isn't on the line. 
PATRICK CASALE: Right, absolutely. And I think that this topic of masking, like I think we could do a whole series on masking honestly, and we could find, you know, anyone that could come on and talk about their own experiences, if they feel safe enough to do so, especially, for black autistic people or people of color in this community. I think it's so important to get all these different perspectives, too.
PATRICK CASALE: Go ahead, sorry. 
MEGAN NEFF: Well, especially, like the added layer of when someone is code switching and masking that, like, we talk about how exhausting masking is. Honestly, I can't even imagine trying to run another software under that of code-switching. And yeah, I think it'd be great if someone felt safe enough to come on and talk about that experience because it is a really different experience than white masking.
PATRICK CASALE: I think about my wife, like, you know, who's a black woman in America who works in law enforcement, and code switches constantly as someone in the south, and how exhausting that is, and like listening to her change her dialect, listening to her change, you know, her accent, listening to where she feels comfortable, and then, just adding that additional layer on top of it and just thinking about that. It also circles back to like me thinking about my privilege and my ability to unmask as safely as I've been able to do so. Like, I am a cishet white, and with a master's degree in America. Like, I have every privilege aside from the religious one, and my neurodivergent piece. 
But I think it's just so challenging to pick and choose your spots too, even to this day, where, you know, sometimes I don't want to openly disclose why I'm communicating the way I'm communicating, why I'm reacting the way I'm reacting. But I've noticed that when I'm able to safely do so, and this, again, is privileged ability to do so, that it makes a lot of interactions a lot easier for me. And it makes getting through the day more tolerable. And that I felt really grateful for because for so long I just had no idea what the hell was going on, and why I was engaging the way I was engaging, and why I was avoiding the way I was avoiding.
MEGAN NEFF: Yeah, and that's where the lens of autistic masking, I think, is so helpful as it explains a lot. And for a lot of people when I'm working with them, and they're new to the diagnosis or for myself, I remember the like, it both just kind of disbelief and relief of like, "You mean like everyone isn't doing this?" Because that's the assumption, right? Like, we're not in other people's brains. 
So, of course, I'm assuming everyone else is coaching their body through social interactions or like having hours of pre-scripted conversations in private, and like plug-and-play scripts. Like, I assumed everyone was doing that, and sort of to realize that is not a normative experience is so eye-opening.
PATRICK CASALE: It's eye-opening. I mean, I think it creates a multitude of emotions when you start to think about it that way because I do think when you assume like everyone goes through life like this, and then, you start to acknowledge, like, "Oh, this is not how everyone interprets social interactions, or how they go to work, or how they…" 
Like, one thing that stands out to me, and this is probably one of my most obvious autistic traits and tendencies when I'm in a neurotypical work environment is like meetings, I can't fucking stand them. And when they were happening, and people just want to talk, and it just seemed like people just wanted to meet, to meet, I'll be like, "Can we be done? Like, are we at the point where we're done?" 
MEGAN NEFF: Like, you would say that?
PATRICK CASALE: And then, my supervisor would look at me and be like, "Don't say that." I'm like, "Oh, okay." I didn't realize I wasn't okay but why are we still talking? I don't understand why we are just sitting here to have this conversation. And why couldn't this just been an email? I don't understand.
MEGAN NEFF: So, I think I get a little bit more tact than you. But I would also often be the person be like, "Okay, so it sounds like you're saying this, and you're saying this. So, like, maybe we can do this." Like, I would just be trying to like pull together the strands so that we could like be done because, yeah, meetings are so painful. 
Okay, I brought the structure, but I feel like we have diverged. I do want to… I mean, I realize that right now, recency bias, I'm more focused on the privileges of masking because of my experience this week. But there are really real costs of masking that I think are also important to identify.
PATRICK CASALE: I wanted to name like four times already that you're the one bringing the structure today and I just really appreciate that so…
MEGAN NEFF: Oh, cool. I'm glad you appreciate it and don't feel like I'm like cutting down the organic [CROSSTALK 00:30:02].
PATRICK CASALE: When I'm sick, when my brain is not, like, online as much as I would like it to be I need that. So, thank you. But yes, let's talk about the cost.
MEGAN NEFF: So, yeah, the Rainmaker study, which I cite a lot when I'm talking about burnout, one of the things that that study showed was that autistic masking was one of the leading causes of burnout. And this is really important for mental health professionals to know, it is a kind of a pathway to depression and suicidality. And again, this makes so much sense based on what we were talking about earlier about the demands placed on the prefrontal cortex. 
So, very real mental health costs, something I often say, and I don't know, maybe I'll change my thinking on this later, but when I'm talking about high masking autistic people, I'll say, you know while we don't necessarily have the high support needs that people classically think of with autism, we have very high mental health support needs. And I think a lot of that's related to masking because it can result in depression, it does result in a more diffuse sense of self. If you think about the connections you're forging when you're masking, they're not going to be as authentic or meaningful, so our sense of belonging and connectedness suffers. I'm sure there's more costs I'll think of once I stop talking. What are some costs that come to your mind?
PATRICK CASALE: Immediately what comes to mind is in the correlation in comorbidity with substance use, as we've referenced so many times.
MEGAN NEFF: Oh, yeah. 
PATRICK CASALE: Just the reliance upon substances because of how much of an impact masking has, whether that be reliance in social situations, or when you get home from social situations. And I think that that also is a major contributing factor into increased depression and suicidality as well and they all go hand in hand.
MEGAN NEFF: Yeah, and we know that from like suicide studies that if someone has a co-occurring substance abuse problem, they're unfortunately way more likely to complete or attempt suicide because when you have the ideation happening, and then, you take something that kind of impairs inhibition and put it in your system, that person is going to be at a much higher risk of attempting or completing. And we know autistic suicidality is incredibly high. And again, not talked about nearly enough in mental health field.
PATRICK CASALE: Makes me want to do an episode on that, too. 
PATRICK CASALE: We know that's a triggering subject and want to be sensitive around that. But it does need to be talked about. Yeah, so substance use immediately comes to mind for me. That's something that like, just feels very much like an extension. You already mentioned burnout, you mentioned depression, the isolation factor. I think your anxiety ramps up significantly. I think that you can start to see obsessive tendencies start to increase pretty drastically too when all of this starts to ramp up. So, your mental health is just going to start to deteriorate because you're working so hard, there's so much output, and there's so much input at the same time so it's just… 
And then, that's a good reason why we're going to see increased illness, right? Like, we're going to see increased chronic illness when this starts to happen too. You and I have talked about this before, and I've been sick all my life, I think about it constantly. Like, it's starting to become really apparent to me. Who the hell gets mono in third grade? And then like, is sick for a month? I didn't kiss anyone. Like, what is happening? 
But, yeah, so I start thinking about illness, I start thinking about just unhealthy relationship dynamics, unhealthy partnerships that start to get created.
MEGAN NEFF: Absolutely. Okay, so this is kind of a side note, like I think we should add a disclaimer to episodes or to like all of our episodes, like is there a way to say like, all of our episodes are going to have potentially triggering content, this being no exception, intimate partner violence is much higher among autistic people. 
Also, the studies are a little bit different for ADHD, but also, for ADHDers. Some ADHDers can be perpetrators of intimate partner violence so that's why the studies are a little bit more nuanced for ADHD, but also, more likely to be victims. 
And so, yeah, absolutely, I think, I mean, if we think about masking as a trauma response that is a form of the fawn response. That makes a person incredibly vulnerable to victimization. There's a really painful study that showed nine out of 10 autistic women have been victim of sexual victimization. I'm not surprised by that at all. And I'm sure it's also high among autistic trans people. 
And partly masking teaches us to override our instincts, to override our boundaries, to override our ways of self-soothing, and it makes us so vulnerable in those situations.
PATRICK CASALE: Yep, yep. I was going to talk about just being really susceptible, to being vulnerable, to being taken advantage of in a variety of reasons, in ways. And when you don't have that sense of self, and when you almost feel like you can't trust your natural instincts, or your natural instincts and reactions can't show up in a way that is safe to do, you're almost starting to second guess everything in a lot of ways too, how you move through the world.
MEGAN NEFF: Absolutely. And so, then, if someone comes into your life who's like this, and gives you like a kind of way of thinking to orbit, which is what abusive people often do is they want you to orbit kind of their subjectivity or their world, then that's going to be really, in some ways, enticing of like, well, I can't trust my world but here's someone who's telling me I can trust their perspective on the world. So, I'm going to buy into theirs.
PATRICK CASALE: Yeah, and I think, you know, we've talked a little bit about this here and there, and I know we're going to eventually do an episode. But we could go down that religious pathway with that, too, you can go down a lot of… there's just a lot of possibility to be taken advantage of when you feel like I cannot rely on my own thinking or reaction, or I have to suppress how I'm thinking or reacting to something.
MEGAN NEFF: Yeah, absolutely, absolutely.
PATRICK CASALE: And that goes into assimilation, right? It's like assimilation, how do I stay safe? How do I stay a part of? How do I belong? And…
MEGAN NEFF: So, this is what is just kind of wild, right? So, the costs of masking are significant, right? Like, I feel a heaviness just having us listen to them. And for some people, it is safer to mask than unmask. Like, how much averseness, how much, like, the words are not coming to me, but how much systemic imbalance of power must a person be experiencing that it is better to mask than unmask?
PATRICK CASALE: Yeah, that's heavy stuff. 
MEGAN NEFF: I see it on your face.
PATRICK CASALE: It's just, you know, I think when we start talking about these subjects, you start experiencing the enormity and the heaviness that we both can understand. Like, you and I have gone through our own experiences and we know the heaviness and I know that you and I can both almost mind meld an experience. What am I trying to say? I know how we kind of have an understanding of our own worldview and our own inner experiences because we talk about them a lot. We're friends, we talk, we share this stuff, then you start to take on the understanding that it's so much heavier than that when you start to think about all of the people who are experiencing this stuff, all the people who don't necessarily know how to define this or identify what's happening beneath the surface, or someone who just, like you mentioned, cannot ever unmask. It's just heavy, it's a heavy topic.
MEGAN NEFF: Yeah, yeah, I saw it come over your face. Hey, I feel it too right now as we're talking.
PATRICK CASALE: I think autistic burnout, and autistic masking, and unmasking are just really important topics that we could have continuations of as we start to see the neurodivergent movement become more of a focal point in society because these things have to be talked about in order for things to change, in order for things to shift. But it's also just so freaking heavy to do that.
MEGAN NEFF: I think because they're heavy that's why I feel, well, frankly, angry when they're not talked about with nuance because these things can't be boiled down to one sentence acclamations, or to one infographic, or and I realized that's what I do for a living. I distill complex informations to like bite-sized pieces. But there's so many real limits when we try to take such a complex, and nuanced, and multifaceted topics such as this and boil it down into a sound bite. 
PATRICK CASALE: Yeah, and that's why I think that when you and I approached one another about starting a podcast, that was the real excitement factor for me because you're never going to be able to get this information out there in one social media reel, right? Like, this could be endlessly discussed for hours and hours and hours and hours.
MEGAN NEFF: Have we done the benefits or the privileges of masking? I know we kind of talked about it, where we talked about like, I feel like we've talked about more as the negative, in regards to, like, what groups sometimes don't have the privilege of unmasking. But I'm not sure we've covered, like, what are the benefits of masking? 
PATRICK CASALE: Yeah, let's do it. 
MEGAN NEFF: So, the things that I put on my infographic that, you know, got a lot of heat this week, things like, you know, job, job security, and again, this is a minute I've heard from a lot of autistic people talk about is access to jobs. 
And this is why I talk about it as a privilege, is masking has given me access to systems of power and privilege. So, access to jobs, access to education, being less targeted for bullying. Now, as we talked about, a person might be more targeted for victimization, actually, not more because like all autistic people are targeted for victimization. And if you're not masked, you could be targeted for other reasons. 
But less bullying, for your social differences, less kind of outward stigma, there might be more internalized ableism, but less of that outward discrimination that you're experiencing, less likely for your actions, your neurodivergent traits to be misinterpreted by the public or law enforcement, which again, this is where that intersectionality piece becomes so important. That doesn't guarantee safety for black autistic people or people of color who are autistic. But it could increase safety if… I'm not saying it well, my words. So, those are some of the benefits of masking. 
PATRICK CASALE: I think that was clear. Yeah, what I'm hearing is safety, potential security, potential access-
MEGAN NEFF: Economic security. 
PATRICK CASALE: Yeah. Yeah, absolutely. And it's just a shame because the benefits of masking directly correlate to the detriments of masking in a lot of ways, too.
MEGAN NEFF: Totally, which is why… like it's not as simple. And like early in my kind of content creation, I talked a lot about like unmasking. But then I realized like, it's not as simple as like just unmask because then you have these new complexities to deal with, you have people looking at you, you have to address negative comments. Those are also sensory experiences. So, the answer isn't unmask, I think, the goal often is to be able to strategically unmask. And of course, the goal is to build a more neuro-inclusive society. But that takes time and we're not there yet.
PATRICK CASALE: Yeah. One thing I think we could talk about, also, is just some strategies, maybe some techniques to safely unmask when you're able to do so, even if it's at home. You talk about a lot of these things on your Neurodivergent Insights Instagram account a lot of the time
MEGAN NEFF: I haven't yet but that is exactly what I'm working on this month. And that's where kind of the concept of self-unmasking versus public unmasking feels helpful for me. I think self-unmasking, like any sort of inventory that helps you figure out, again, your delights, your pleasures, that takes your desire seriously, other exercises I've seen are things like, find a memory of the last time you were happy, or the last time you felt connected to yourself. 
So, a lot of it's also about going back into memories. And for a lot of us that involves going back to childhood because that's when we can access a more unmasked version of us, thinking through, you know, what do we love? What do we love to talk about? What are our interests? What are our collections? If we have them. 
And, again, masking often we feel the need to hide our interests. So, actually, intentionally spending time with our interests, and celebrating them not as things of shame, but things that bring us delight and pleasure and meaning.
PATRICK CASALE: Yeah, I love that. That's why, like, I still stand by my statement about parts work and IFS being really helpful for autistic people in therapy [CROSSTALK 00:45:43]-
MEGAN NEFF: Because that helps you do some of that unmasking.
PATRICK CASALE: Yeah because you're able to at… if you can really get into that childhood part, you can have some really good access to some of those memories that can feel really fragmented at times, too. I, myself feel very disconnected from childhood and that childhood part of me, but if I can get back into that place where, like you just mentioned, I can remember having that Garfield collection, I can remember having all of these things that brought me joy, then it's like, okay, I can access that part of myself and I know that that memory is a positive one.
MEGAN NEFF: If someone hasn't already created this, like, even just like a 60-minute masterclass on using IFS to help a person unmask that would be a great, like, clinical training, or just a training for neurodivergent people because I hadn't connected that before, but you're right, I can see how that would be such a powerful tool.
PATRICK CASALE: Yeah, it's so powerful, especially, like, I don't want to diverge too much right now. But it's powerful, it's useful, especially, if you have a really hard time accessing present self or even like, past self that wasn't, you know, within the last couple of years. I have a very hard time with that. Like, I have a hard time with accessing and to be able to break it down in parts. Let's just say, like, the entire teen me doesn't remember this but I know there's a part of me there that like can access this that's really helpful.
MEGAN NEFF: Yeah, yeah. And then, figuring out, like, what are the things that kind of pullback that part? Like, pull it back like a thread you're pulling out. So, it might be like a sensory experience or like, you've talked about Garfield. Like, I could imagine just looking at Garfields that you have, probably, helps you come back into that part. 
PATRICK CASALE: Oh, totally.
MEGAN NEFF: Makes me want to go find some Blazer basketball cards, see what part I could access.
PATRICK CASALE: I love that that was such a special interest for you. Also, by the way, at some point in time, during an episode, we will definitely shout out all the responses we got for special interests on our Instagram because there were some really cool ones on there. I thought it was really unique to just hear everyone's special interest, the things that you collected as kids, things that you really remember very viscerally, very real that that brought you joy and some fulfillment. I thought that was really kind of a beautiful little engagement on there. 
MEGAN NEFF: I love that. Patrick, that's something I've been thinking about too, is like, as we've been talking about this heaviness, I really, like the feedback we've gotten, the exchanges. I know you've had exchanges, I've had with listeners, not that either of us need more on our to-do list, but I'd love to find a way of building community around what we're doing and our listeners. 
Again, back to that idea of people are craving and needing connections and I think, especially, autistic spaces that hold space for nuance and complexity, I think. I've heard a lot of autistic people kind of go into social media and then burn out because it feels like too activated which it makes sense, like it's going to be an activated space. But okay, now I'm diverging and tangenting, did I just throw that into a verb?
PATRICK CASALE: Sounds like a new Megan Anna-ism right there. Tangenting, no, I agree. I think that we could put our heads together about creating some space that feels really supportive and affirmative, and has room for nuance, and just connection, and conversation like this. So, I'm happy to try to figure out what that could look like.
MEGAN NEFF: 2024 goals.
PATRICK CASALE: Right, everything in my life right now is 2024. That is not a today me problem, that is a next year or 2025 [INDISCERNIBLE 00:49:38].
MEGAN NEFF: I do that all the time. I think my future self is going to have all this spaciousness. I think it was my husband who, I don't know where he heard this, but he was like, if you want to commit to it in the next three weeks, you should say no to it. Like, that's a mental exercise you should do. Because I do that all the time where I say yes to things that are like four months out because I'm like, "Oh, future Megan Anna will have all the time in the world, I hope." 
PATRICK CASALE: Yep, that's what we've talked about, that our ADHD selves are like, "This is a good idea." And then, it gets to that point on your calendar, and you're like, "What was I thinking?"
MEGAN NEFF: That was a terrible idea. 
PATRICK CASALE: Also, I just want to give myself props for not cursing a single time today. I'm trying to be really mindful of that. So, yeah. Anyway, I think it's time for our awkward goodbye. I hope this conversation was helpful. It was heavy, but I do think it's important. 
And Megan, I just want to say thank you for sharing that space and just sharing that heaviness too. 
And to everyone listening to the Divergent Conversations Podcast, new episodes are out every single Friday on all major podcast platforms and YouTube. You can like, download, subscribe, and share.

Friday Aug 04, 2023

Difficulty with unexpected changes or routine disruptions is a pivotal part of being Autistic and even small changes can result in a surge of irritation.
In regards to routine or plan changes, Dr. Neff described her feelings as an Autistic person: "Once I'm, like, emotionally checked out of something, I'm out."
Patrick Casale shared his experience saying that it's very hard to get back into a place where he feels mentally regulated, and he just gets very irritated, very easily.
In this episode, Dr. Megan Anna Neff and Patrick Casale, both AuDHDer mental health professionals, share their own struggles, experiences, and feelings around routine disruptions, being over- or under-stimulated in day-to-day life, and learning to better understand their reactions to small and big changes through the lens of their diagnosis.
Top 3 reasons to listen to the entire episode:
Understand the challenges faced by ADHDers and Autistic people when it comes to sensory stimulation and emotional regulation.
Identify the difference between Autistic-ADHDers and pure Autistic people around routine disruption and routine changes.
Learn strategies to cope and self-soothe emotions such as anxiety caused by routine disruption.
It can at times feel frustrating or shameful for Autistic people to experience strong emotions or feel upset by what others see as seemingly insignificant things. However, by recognizing these feelings and understanding that they are part of our neurodivergent nature, we can help combat self-criticism and better advocate for our needs.
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.
MEGAN NEFF: Patrick, you just asked if I could start it off and now I'm trying to remember the script of how we start. But maybe [CROSSTALK 00:00:39]-
PATRICK CASALE: No, no. We don't need a script because we already recorded it.
MEGAN NEFF: Okay. So, here's a tale of how I am. We've recorded several episodes and this is the first one where I'm sitting. So, to me, that's a to tell, like, I know, I'm not feeling well.
PATRICK CASALE: Yeah, usually, you're kind of standing [CROSSTALK 00:00:26]-
MEGAN NEFF: Like, usually, I'm standing, I'm moving. Today. I'm like, sitting. I have all the weight on me which means I'm also overheating. Do you ever do that where it's like, you want weight but then, you're overheating?
MEGAN NEFF: So, I'll probably be, like, sweating through today's episode because I want the weight.
PATRICK CASALE: Megan is not feeling well, so let's give her a lot of credit for being here.
MEGAN NEFF: No, I did something kind of mean to you today that I would have hated if it was the opposite. I texted you and I was like, "Hey, can we skip recording because I'm not feeling well." And then, I was going to try to get some more sleep, and then, I texted you, and I was like, "Never mind, let's record." Which I sort of like schedule change once I'm like, emotionally checked out or something I'm like out. So, I don't know, I'm just curious.
PATRICK CASALE: Thanks for that, yeah. Yeah, I was emotionally checked out because I had a podcast before this that I was doing with someone else. And then, I was like, "Oh, my day is done. Like, I'm just going to go eat lunch." And then, I don't look at my phone when I'm podcasting, obviously. And then, like, I looked at it, and I was like, "Oh, shit, we can record."
So, I wanted to because I've been away, it helps us get back in a groove, and like, we're running out of episodes. So, I was like, "I'm just going to switch my brain around and task switch." And just feels, at first, a little disorienting, you know? Because like, you're like, I was going to go outside, and yell at my dogs to come inside, figure that out, that whole situation out, yeah.
MEGAN NEFF: And then you saw my text like five minutes before 9:00 or 12:00 your time. So, yeah, like this is a pivotal part about being autistic, is difficulty with unexpected change or routine disruption. I know I experience a lot of things around this. We haven't really talked about that before, though. Like, yeah, do you, like, I think I would have felt a surge of irritation. Were you irritated or something?
MEGAN NEFF: Or maybe not with me, but with the routine change?
PATRICK CASALE: Actually, in some instances, I think, in situations like that I probably would be irritated. I'm not irritated at all. I actually was like because I don't have a lot to do today, the only two things on my schedule were to do this other podcast, and then, do this. So, it actually doesn't feel that disruptive to me because I had already in my mind, like, committed to it, you know what I mean? So, it wasn't that easy to switch back to a place where I was like, "Yeah, okay, we're doing this." So…
MEGAN NEFF: Okay, yeah. In general, like, because I also think this is different for, like, autistic ADHDers than pure autistic people, like routine disruption, routine changes. In general, like, what has your experience around those things been?
PATRICK CASALE: I do think it's challenging. You know, when you're kind of already, you're assuming or you've committed that mental energy to something happening, right? Or participating in something, or committing to something, in general, and then, all of a sudden something switches, or something comes up, or someone cancels, or whatever the case may be, it's very challenging to then get back on track to say, like, okay, I can just move on to the next thing I was supposed to do. For me, a lot of the times it looks like, I end up falling into a place of like nothingness, which is basically binge-watching shows or doom-scrolling on my phone. Like, I can't actually then say, "Oh, I have to also do this errand or do this thing." It's very challenging for me. I don't know about your own experience in that.
MEGAN NEFF: So, wait, just so I'm tracking, like you collapse into doom scrolling when there is a routine disruption?
PATRICK CASALE: Yeah, yeah. So, like, it's really hard for me to then say, "Okay, we're not doing this meeting, now what do I do?" It's hard for me to switch to something else.
MEGAN NEFF: To something else?
PATRICK CASALE: Yeah, yes, it's always been challenging. And I can get irritated for sure if something goes awry, gets canceled, whatever the case may be. So, I mean, honestly, I happen to travel constantly, where flights get delayed, canceled, things get moved around, and it's very hard for me to then get back into a place mentally where I feel regulated. I will just get very, very irritated very easily.
MEGAN NEFF: Yeah, yeah. No, same. And I think this is one of the sources I see of internalized shame for a lot of autistic people and myself included. Like, before I knew I was autistic little things, like, change, and it could be a subtle change of plan like maybe a friend invites another friend to a social event, but I didn't know that that other person was going to be there. So, it could also be like little social differences of expectations and I would get so irritated.
But I'm a people pleaser, right? So, I would do my best not to show it so it just simmer, and then, a narrative would start around like, why are you frustrated by this? This is so silly, this is so petty, this is no big deal. So, then, the whole shame narrative around why am I so upset by something so small kicks in. And I see that a lot with autistic people where like little changes to routine can cause big emotions and irritation, but it's like our rational mind knows that's not rational, so then, we can get pretty down on ourselves for having those emotions, especially, before we understand that it's part of being autistic and it actually makes sense.
PATRICK CASALE: So, when that's happening to you, like, you know, you're going out with a friend and then, all of a sudden so and so is also there, and you're having that disruption, and you're saying, "I'm a people pleaser, so I'm going to go along with this." What's happening, like in the moment for you while you're there? Are you kind of checked out from this [CROSSTALK 00:07:10]-
MEGAN NEFF: Yeah, I think my way of responding is kind of like low-grade dissociating. So, I'm checked out, and then, that's what I call my, if I can say the word, Plexiglas, Plexiglas, how do you say that word?
PATRICK CASALE: You said it right the first time, Plexiglas, yeah.
MEGAN NEFF: Plexiglas moments of like, I'll be there, but I won't be there. Like, I won't emotionally be there. And I'll be like, "Why can't I get into this experience? Why can't I be here? Why can't I get out of my head?" And so, those are the situations, yeah, where I'm there, but I'm not there. I'm not there emotionally, I'm not there, like, I don't feel present.
PATRICK CASALE: Does it ever come out where like, maybe you become short in your responses or kind of like the irritation, or frustration shows through the interaction?
MEGAN NEFF: Like, probably not with friends, but maybe with family, like people, I feel a little bit closest to or I am thinking, you know there was a group project I did back in my doctoral program, and there were some, I really didn't like this project because it involved like interviewing a family. It was a family therapy class, but like, it means you had to ask a family to like do something that, I don't like making social asks of people, I think, because I don't like when people make social asks of me.
So, there's a friend of mine, the family, and we were interviewing them, and the person I was going to interview with them, like, the co-interview swapped, were a group of three, and they decided to swap places. And I, like, had all kinds of feelings around that. And I think I was trying to make some logical argument for why it shouldn't be swapped. So, it'd be an example where like, I think I behaved low-key irrationally, and was way more upset than made sense by the swap of like, who was going with me to interview the family. And it was because it was a unexpected change.
And so, that would be the other thing, I think, okay, I'm thinking on the spot here. When I would become irritated by an unexpected change I would try to figure out why it made sense I was irritated and it's like I would come up with reasons to justify my irritation, if that makes sense.
MEGAN NEFF: But then I'd be, yeah.
PATRICK CASALE: It's almost like a way to kind of soothe yourself, too, right? To like give yourself permission to feel the way that you're feeling.
MEGAN NEFF: Yeah, yeah, exactly.
MEGAN NEFF: Then can look like looking for things in the other person to be upset by.
PATRICK CASALE: Right. Yeah, that's really true. I know when I've been in social situations, like kind of like what you're describing I will also have that Plexiglas-like moment where I will basically be non-existent. Like, in physical form I'm certainly sitting there, right? But like I'm not contributing to the conversation. If I am it's like, very much from a distance or like disconnected from it, and not really feeling involved in it, and then, trying to figure out ways to leave it. And then, you are, like you said, having that internal dialogue, trying to figure out like why you're feeling the way that you're feeling? And almost, yeah, absolutely shaming and beating yourself up for it, and just being like, why are you so upset by something so insignificant?
And trying to figure out the why behind that as we so often try to do, it's really a frustrating experience because you're almost trying to talk yourself out of feeling the way that you're feeling, but you can't get to that place, you just kind of get back to a place of like, regulation, and then, all of a sudden, everything is out of whack, and you almost beat the hell out of yourself mentally because it feels like it's something so small that caused such a major disruption.
MEGAN NEFF: Well, and it can be small. Like, what I did to you this morning, if that happened where… and partly, for me, I feel a lot of relief when things get canceled. I think that's my demand avoidance. So, someone canceled on me, and then, they were like, "Just kidding, I could meet." Like, yeah, to most people that's small, but like that would actually cause, I don't want to say significant irritation because again, I don't think the person would see it, but it would cause irritation, and then, I would do all of the things to talk myself down, and then, I'd be irritated that I was irritated. Like, that secondary emotion. So, yeah, it can be really small things that causes big emotional spikes.
This is one of the places that I think identification and diagnosis is so helpful. Like, this, I see be a big aha moment for a lot of people. I think, for anyone, it's helpful to know why we're feeling what we're feeling. I think, especially, for autistic people it's really important. It helps, you know, there's all these cheesy things in psychology, but they're not cheesy because they're also like really true, like, name it to tame it or name it to contain it. Like, when we have a name for something it's more contained.
And so, this is where, I call it free-floating anxiety, like free-floating routine disruption anxiety. And I often find with people that I'm working with, if they're anxious, and they don't understand why, and we kind of start exploring, we can typically trace it back to some sort of routine disruption. And just having that language of free-floating, like anxiety from routine disruption I know for me has been really helpful the last couple of years.
PATRICK CASALE: Yeah, I think you're absolutely right. And I do think that's why diagnosis is so important in so many ways because it allows you to almost give language to something that you're searching for. And it allows you to have clarity into a why and I think so often, like, for deep thinkers, and for a lot of autistic people, like, we're questioning everything, and trying to figure out the meaning of everything. It gives some relief in a way to say like, "Okay, this is why." That doesn't always change what's happening behind the scenes, but at least it gives you some comfort or understanding into this is why. Like, okay, I'm losing myself and what I'm trying to say, I think for myself-
MEGAN NEFF: Like, that happens for autistic ADHDers?
PATRICK CASALE: Like, for ourselves, like, we've talked about this, being mental health professionals gives us a different lens than a lot of people into our own inner world, which is unique. And I think for myself, like, questioning the why as it's happening, and then, associating it to being like, oh, it's because I'm autistic a lot of the times is actually like, it doesn't solve how I'm feeling or anything like that, but it gives me some understanding on a different level that I didn't have before because it almost is like permission to be like, oh, like I'm feeling the way I'm feeling because I'm autistic. It's giving me permission to feel the way I'm feeling in a lot of different ways.
MEGAN NEFF: I love that. Someone needs to work that into a hashtag, like diagnosing autism, like permission to feel the way you're feeling, and ADHD. It's interesting, I noticed you and I talk a lot more about autism and ADHD in this podcast.
PATRICK CASALE: Just mind melded on that for sure because that's exactly what I was just thinking as we're talking, yeah.
MEGAN NEFF: Yeah, absolutely. I do the same thing of now I'm able to be like, oh, that's my autism or that's my ADHD whereas before what I was left with is character-based labels like I'm messy, or I'm… actually, lazy wasn't, that's not been one for me, but like I'm too much, or I'm… definitely some of my self-talk was, and a lot of these are words that wouldn't be appropriate, but I'm just sharing my self-talk. Like, you're an idiot or you're incompetent. Like, a lot of really negative judgments I was making about myself that I now have a different framework for.
It's actually interesting just yesterday, so I have like three sets of AirPods because I use them all the time for my work. And then, I lose them all the time because of my ADHD. And I was going into an afternoon of sessions, and I was looking for one of my three sets of AirPods. I've actually lost most of them by now, and I find my phone, and the most recent location was a park, that adventure with my son over the weekend playing tennis, which made me realize, I realized, oh, they're in a vest jacket. I'm like walking you through the process of finding my AirPods, what is happening?
Anyways, I had washed them because I put them in a vest when I was playing tennis and I washed them. And either scenario was equally likely that I would have lost them or I would have washed them. And my spouse he was like, "Do you want me to order you a few other pairs." And I was like, "Yes, thank you." It was really interesting. He was like, "You know, a couple years ago this sort of thing, like, would have really irritated me. And now I'm just like, 'Yep, that's her brain.'"
And we've had probably like 10 interactions like that, especially, as we're moving right now, of where I've lost things, or misplaced things, or broken things, where he's also able to reflect how earlier in our marriage that would have caused him a lot of emotion and now he's able to see it as part of how my brain works.
PATRICK CASALE: That's such a great perspective from both sides. Like, it sounds like for you it's almost like permission or acceptance of, "Oh, that's my ADHD, I lost them again, and that's my reality." And for him, it's like, "This is how Megan's brain works and this is going to happen." And I think that's so interesting, as you learn more about yourself, as you learn more about your neurodivergence. It also helps your neurotypical [CROSSTALK 00:17:28].
MEGAN NEFF: Yeah, like, it's weird all my kids are very neurodivergent, I'm very neurodivergent, and like, we refer to him as like the boring neurotypical, and we're like, "Oh, you poor thing. Like, you don't have any fun flavors with you."
PATRICK CASALE: Right and he's like, "Yeah, and I've also never lost my AirPods, so [CROSSTALK 00:17:47]-"
MEGAN NEFF: Also like, he, and okay, sorry, can I diverge, and then, we'll go back to him?
PATRICK CASALE: We can always diverge, yes.
MEGAN NEFF: Someone asked me this and I was like, "Oh, my gosh, I should add this to my…" Like, you know how sometimes, especially, in training we like list our privileged identities as a way of thinking through our privileges. Like, I should list as a privileged identity that I'm married to someone who has really good executive functioning skills. And someone asked me that, they were like, "Do you…" Because they were wondering how I'm as productive as I am? And they're like, "Is it okay if I ask? Like, does your…" I think they asked, like, "Is your partner neurotypical?"
And it was a really interesting aha moment of they are and I borrow his executive functioning all the time. That's been a joke long before we realized I was autistic ADHD, was how much I borrowed his executive functioning and the kids will say it like, "If dad died we'd fall apart." And it's kind of true, like…
PATRICK CASALE: Shout out to dad.
PATRICK CASALE: This is going to be the type of episode today is… So, here's an interesting thing for me that I'm realizing as we're processing what's happening right now when my executive functioning is diminished because I'm usually the one who is like orderly, and structured, and like turning things back, my brain cannot do that where I'm like, "Wait, what is happening?" It's almost like this fugue state where I just know that I'm running on very little sleep, and jet lag, and travel transition. So, my brain is just not functioning as optimally as I would like it, too. And I notice how much effort it takes to then do A, B, C, D, and E in comparison to where like, most of the time some of these, like, or structuring, and conversation, and task switching are actually quite easy for me.
MEGAN NEFF: So, you're feeling the executive functioning low today?
PATRICK CASALE: Yeah, I didn't sleep not last night, the night before. Like, woke up at 4:00 AM and complete overwhelm, panic.
MEGAN NEFF: Wait, was this is after you got home that you woke up at 4:00 AM and panicked?
PATRICK CASALE: Yeah, yeah, yeah. Panic attack/meltdown while laying in bed trying to figure out how to get myself back to sleep.
MEGAN NEFF: Was the panic attack because you weren't sleeping or?
PATRICK CASALE: No, it was all existential crisis/like, what am I doing with my life, nothing is successful, everything is about to crumble mentality which-
PATRICK CASALE: …yeah, there's no rationale there.
MEGAN NEFF: Yeah, I didn't know you were prone to existential crisis.
PATRICK CASALE: I feel like I am in existential crisis every moment of every day. I think that is like my natural state is questioning my purpose, and what I'm doing, and does it feel fulfilling, and is everything about to collapse? Then I started thinking… my brain is diverging a lot right now, then I started thinking about like death and dying, and like shortness on the planet, and it just really intensifies, which I notice like when I say my brain is about to diverge, and like this is all happening I'm much more in my ADHD state right now than my autistic self. So, it's very interesting for me.
MEGAN NEFF: Is your existential self like more connected to one of those parts?
PATRICK CASALE: That is a good question. I think that my existential self is connected more to the ADHD side. I really think that it's like about the creativity, and the romanticizing. And when that part is not feeling fulfillment, or it's feeling like things are not in alignment, everything starts to feel very fragmented, and disjointed and falls apart.
So, I ended up at a coffee shop yesterday at 7:00 AM doing work so I could satisfy my autistic side of crossing things off lists and being like, done, done, done, and I had three coffees by 8:00 AM. And I was like, "Oh my fucking God, today is going to be a nightmare." Yeah.
MEGAN NEFF: So, this is kind of different than existential crisis, I definitely have those too. But when you talked about the ADHD self you reminded me of it. I don't know if I've shared this on this podcast before, but I often talk about it as the Goldilocks of stimulus. And I feel it so deeply. Like, I've seen, like, if I'm under, okay, if I'm overstimulated, which I am a lot it's too much. But if I'm understimulated, I'm really discontent.
And if I look back to the times in my life where I've had, like, just intense discontentment, and some of the questions you're describing of like, what am I doing with my life? Is it meaningful? What new, like, trip can I play on? Or can I plan another move? It's one of understimulated. And I think that is one of the pain pieces of being an autistic ADHDer, particularly, is yeah, like, I'm picturing just like a thin sheet of ice, which is our ideal window of stimulus. And it's a very, I would imagine, for a lot of us, it's a very narrow window when we're in our ideal stimulus.
PATRICK CASALE: [INDISCERNIBLE 00:23:22] being understimulated for the ADHD [INDISCERNIBLE 00:23:27] and how much disruption that causes the autistic side. And it's so challenging. It feels like this tug of war constantly of like, under-stemmed verse over-stemmed, and trying to desperately find that thin sheet of ice that you seemingly only have access to, like one hour of your life every month, that might be an exaggeration, but that's often how it feels.
MEGAN NEFF: Yeah, I mean, I think that's why hyper-focus feels so good to me, is I'm typically hyper-focused with a weighted blanket on my lap, at home. Like, my environment is sensory soothing, and then, the creativity of creating something is typically enough stimulus for me.
PATRICK CASALE: Yeah, yeah, so that for you is like that perfection, that zone where it just feels like this is as comfortable as I can be.
PATRICK CASALE: Yeah. I so often I'm seeking that, you know? And I don't know, sorry, my Basset Hound is like laying on my cord about to rip my sound system out, and no care in the world about how that was feeling to her. Yeah, so often I'm seeking that and I think that's really a struggle for me of feeling like where can I really feel comfortable? Where do I feel comfortable? And I do feel comfortable, like you're mentioning when I'm in creation mode when I'm in hyper-focus mode. That is a comfort place, for me. And I think so often I'm like, trying to force myself back to that place when I can't access it, and that's where things get really, really chaotic and disrupted.
MEGAN NEFF: When you can't access creativity, yeah.
PATRICK CASALE: Mm-hmm (affirmative.)
MEGAN NEFF: Yeah, I mean, I think that's when, and I know we're going to do an episode on it, and we keep saying that, so we probably should do an episode, like substances. I think that's when we're really vulnerable to substances of like the liquid dopamine or when we don't have access to creativity, looking for, like that, I would call it faux ideal stimulus window through chemicals and substances.
PATRICK CASALE: All right, y'all, this is us holding ourselves accountable that we are going to do an episode on substances because I think it's just so, so important, and you know, has a major impact on my life still, to this day, where I, unfortunately, still so often have to rely on alcohol for so many things and caffeine, too. But, yeah, I think that is what I was feeling and experiencing.
Now, my Basset Hound just got up and knocked my garbage over and is just yawning like she didn't do anything, just a clumsy, like, large mammal.
But I do think that was a struggle. I think I've come out of that after, you know, what ended up happening, if I can walk you through this process at 4:00 AM was that I had to then start putting, I was feeling very overwhelmed by all the to-dos, as well of like, the different segments of my life. So, I had to really compartmentalize because I was feeling like I was going to lose track of everything. And what I had to do was start making to-do lists for my group practice, for my other business, for my podcast, for my retreats coming up, for something else, so I had to start putting everything in its place to soothe my brain because my brain was so overwhelmed at that point where I was just really struggling. And I mean, yeah, those days are challenging. They're thankfully not, they're few and far between. But those days are challenging.
MEGAN NEFF: Yeah, yeah. And to-do lists are so containing. Like, in middle school and high school, I'd sit in class, not paying attention, making to-do lists, just to organize the chaos.
And I actually had this thought about you this week, Patrick. Like, people tell me I do a lot, and it's true, I do. But like, I don't think I do nearly as much as like, yeah, I honestly don't understand how you do it between the podcasts, and the retreats, and like owning a whole group practice. I could never, never do that. Yeah, you have a lot on your plate.
PATRICK CASALE: Thanks. I think, one, thank God I have good support in those businesses and two, I don't have kids, you know? So, I give you credit, too because so often we often overlook, like, people will say that to me, "How do you do so much? How do you create so much?" You know, and I'm like, "I don't have any children I don't have anything to do. I'm just like working. You know, like, if I'm not playing soccer or socializing, I'm just working."
So, it's a good and bad thing. I think my capacity can often get me into trouble because it's like, okay, in one instance, when you're feeling really creative, and you're feeling really hyper-focused, and you're feeling really energized, my capacity is like a massive, massive asset for me. But the flip side of that, of having that capacity is that now you have all of these things start to unravel, or that you have to maintain, or that you have to do for the week. And I've created that for myself, it's difficult sometimes.
MEGAN NEFF: Yeah, I mean, we've talked about this on your, this might have been one of our first conversations on Private Practice Podcast, like how our ADHD parts will create projects, and then, like our autistic part will have to maintain. I've been feeling that. Okay, another episode we should do at some point is like health and autism.
So, again, diverging here, I got COVID in 2020, like March of 2020, the month interrupted, and my autistic child and I got lung COVID, and the two non-autistic people in our family did not. And I'm seeing that lung COVID is a lot more common among autistic people. This spring, pretty sure we got the newest variant. We were testing negative but like, I'm pretty sure it's COVID. And then, my child and my lung COVID has come back. So, I think the last like six or seven episodes we've recorded I've been sick.
So, I'm feeling that right now of like, I've committed to making a workbook once a month, I'm writing a book in four months for Simon and Schuster, which I'll maybe talk about at some point. So, I'm in the middle of like a really fast manuscript, we're moving, and I'm feeling that right now. Like, I don't have any energy reserves to give, but I've committed to all these things. And for me, it's less about ADHD or autism, I think it's more about the health stuff that's come up for me because usually, summer is my most productive time of year. And so, now, I feel like it's getting robbed by lung COVID.
PATRICK CASALE: Which is a thing that I imagine brings up some emotion too, of like feeling robbed. I also can relate to the summer being very productive for me, and in more ways than one, not just professionally, I feel like I'm my best self in the summer and the fall. And I feel like I'm almost hibernating the rest of the year.
MEGAN NEFF: Yeah, same.
PATRICK CASALE: Like recharging, you know? Like, and just trying to replenish. It's really hard when, you know, there's nothing to pull from. And you also did mention that you also see clients and do assessments, and, you know, you may have a lot going on.
MEGAN NEFF: I have put assessments on pause till I get healthy because that's a big lift. But yeah, I mean, there's a lot. Yeah, I found myself like just kind of trying to do bare minimum, which doesn't feel great to me. But there're seasons where that's all you can do.
PATRICK CASALE: I think that's what I'm experiencing right now is that it may, to the outside world, feel like I'm doing a lot. But for me, it feels like bare minimuming because of throat surgery in October, I changed my life around pretty drastically. So, I think I'm at that point now where my energy is coming back but I'm not doing anything with it. Or at least I feel like I'm not doing anything with it apart from like resting in between retreats. Like, recharging every two months, or six weeks, or whatever, to be able to do another one. And then, I'm like, my rational brain's like, "But you are doing something, you're resting, you're like recharging you're, you know, doing whatever." But that's what I've been feeling, I need something to be working on. And that's what's missing in my life at the moment.
MEGAN NEFF: And does it feel connected to meaning? Like, you need something meaningful to be working on?
PATRICK CASALE: Yeah, it has to be meaningful, it can't just be like a task that I have to do, like, so, I think you can't force that, that's the struggle is like, I can't force it. I keep trying to find it. But wait, let me diverge again, this is meaningful. What you and I are doing is meaningful.
MEGAN NEFF: I was literally just going to say that, like, when we decided to start this we were both so busy and we're like, this is ridiculous, and we were both looking for meaning, we were both, like, I wanted an avenue where I was more personal than I am on, like, Instagram and my website, you were looking to dive more, specifically, into autism, ADHD stuff. So, yeah, I was just associated back to one of our personal conversations about like, let's do this because it sounds like a really meaningful project.
PATRICK CASALE: Yeah, thank you for reminding me of that. And I was thinking about that. You know, we've been apart for a couple weeks from me traveling and not connecting via podcasting. But we're still like, attuned, which is cool because I think that's what we were seeking. Like, are we going to find our rhythm? Are we going to find our balance? You were right, this is super meaningful. And the feedback has been phenomenal. And maybe we'll do an episode where we explicitly talk about some of the feedback we've received and some of the things that y'all want us to talk about, too. Because I think that we have a lot of good topics in store and we have a lot of good topics on the list. It's just, you know, we have these topics, and then, we get together and we just start talking. In true neurodivergent fashion, we don't end up talking about them or discussing them, so we will get to them, we promise, maybe, I don't know if we promise that.
MEGAN NEFF: Do you feel… so this is one of the first, I mean, I think, we've recorded once or twice since this was live. But do you feel more pressure like seeing the feedback, seeing how many downloads there are? Do you feel more pressure when we come into this space down here and we're recording? Because I remember like the first day we recorded, I like forgot it was a podcast. I was like, I'm going to have tea with my friend Patrick and have an interesting conversation that, you know, now thousands of people get to listen to.
PATRICK CASALE: Damn, I wasn't thinking about that until right now. Yeah, I think so. Probably, I mean, yes and no. Like, I feel pressure to continue to create, but I feel it for, like, a good reason because I think what we're doing is valuable, and people are getting a lot out of it. So, that feels like good pressure.
I think if we had sponsorship in place that would feel like a different type of pressure where you're like, because my other podcast has sponsorship in place and I do feel pressured to have constant episodes coming out because you can't really skip a week or two when you've committed to a contract of like 52 episodes in a year. So, I don't feel that pressure here. I feel the pressure of knowing that 15,000 people have listened to this podcast in less than two months. And just the fact that that means something. Like, I think that feels like a good pressure. But it also feels like a lot of weight and responsibility sometimes. What about you?
MEGAN NEFF: Yeah, I think maybe a little bit of like pressure to say something profound in each episode or to like have a cohesive conversation, even though I think a lot of the feedback we're getting is like, "Oh, my goodness, this is like the kinds of conversations I have." So, there's probably something to the Divergent Conversations we have that is actually quite helpful. But yeah, I think a little bit to like, have it be some really meaningful poignant conversation. And reality is, like all human conversations, the conversations we have won't always be like these super aha meaningful pieces.
PATRICK CASALE: Yeah. And I want them to naturally manifest instead of trying to force them to. So, if there's a topic we're talking about, and then, we diverge from it, I think that's meaningful in a lot of ways because the goal with this was to highlight and showcase like in real time what autistic ADHD brains and communication are often doing, and how we're experiencing in the moment examples. So, I think, you know, that is poignant in itself. Yeah, so [CROSSTALK 00:37:01]-
MEGAN NEFF: So, trying to wrap it, like, is your brain right now like, okay, we've got a lot of weaves out here. We've talked about existentialism, we've talked about, like, work, and fatigue, and sickness, we've talked about routine disruption.
MEGAN NEFF: Is there pressure to like, let's wrap it up in a nice, tiny bow?
PATRICK CASALE: I think that's just my own pressure of like, feeling like, are we at the end without asking, are we at the end?
MEGAN NEFF: You can always just ask.
PATRICK CASALE: I know, one day, Megan, one day. I think we've talked about a lot of good stuff today. And I think given that you're not feeling well, and I am jet-lagged, this feels pretty good to me. And I think my brain is now vacant, so…
MEGAN NEFF: Can I share one silly story before we go? So…
MEGAN NEFF: I think this is an ADHD-dyslexia thing. But there's so many words that like I've just been saying my whole life that are just flat-out wrong. So, I just found out like a month ago, my husband and daughter went to England and came back. And I asked them if they were jet lagged. And I always thought it was jet leg. And they were like, "No, it's jet lag." And like, my nine-year-old was explaining this to me. I was like, "No, it's jet leg." And my son was like, "How did you think it was… Like, how does that make sense? Like, how did you think it was jet leg? Like, it's lag." And like, I don't know why that made sense for me. Probably, in the same way that like I thought for years hat hair was cat hair. When people were like, "Oh, you have hat hair." I was like, "Someone told me like, 'Oh, you have cat hair.'" So, anyways, when you say jet lag it's just a fun reminder that me and words have a fun relationship.
PATRICK CASALE: Megan and words do have a fun relationship.
MEGAN NEFF: Which I've been realizing as I've listened to this podcast back.
PATRICK CASALE: I think I told you this, like, when you were using the word, what was it?
MEGAN NEFF: Claustrophobic?
MEGAN NEFF: Wait, how do you actually say that word?
PATRICK CASALE: As long as I'm accurate in saying like, are you saying claustrophobic?
MEGAN NEFF: Yeah, claustrophobic.
PATRICK CASALE: I think someone asked us on our Instagram page, too?
MEGAN NEFF: Yeah, someone who was like, because like, their voice memo wasn't picking it up. They're like, "What was this word you're saying because like my voice translator won't pick it up." So, how do you say that word?
PATRICK CASALE: Claustrophobic.
MEGAN NEFF: That just sounds gross to me. Like, I really prefer claustrophobic.
PATRICK CASALE: So, when you're saying claustrophobic, claustrophobic, I legit, in my head, I thought, I think what Megan means is claustrophobic but I don't want to be rude and say, "Megan, are you saying a completely different word?" And for a second, I thought, I have to look up the definition of claustrophobic and see if there is a word, and if it means what she's saying because I am now believing that this is a different word and term.
MEGAN NEFF: So, this was my friend at seminary and I went to Princeton Seminary, so you know, pretty like Ivy League, so pretty smart people. And one thing she told me was that I love, she was like, "You're really smart, but then when you talk in class, you'll say these words and like, because you sound smart people will like believe you, but the words don't make sense." And I think because I speak with confidence, and because, generally, I know what I'm talking about then when I totally misuse a word people are like, "Oh, maybe that is a real word." No, like it's not, it's just me and my relationship with words.
PATRICK CASALE: [INDISCERNIBLE 00:40:54] like create some social media graphics of Megan's words that she's used in this podcast or just in life that come up pretty regularly.
MEGAN NEFF: There's a lot.
PATRICK CASALE: I like that you can laugh at it, you know? And just own it. Yeah, that's definitely what was happening for me. I was just sitting there like, what the hell is she talking about? I don't know. Maybe she's, I mean, then you convinced me that that was a word so I just never questioned it.
MEGAN NEFF: Well, I was using it so confidently because in my mind that is how you say it.
PATRICK CASALE: All right, y'all, if you're still with us, we appreciate it and hope you can get something out of today, and just the realization that this is what a lot of days look like, and feel like, and this is how they're experienced by two folks that are neurodivergent. So, we appreciate you listening.
And to everyone listening, there are new episodes of the Divergent Conversations Podcast out every single Friday on all major platforms and YouTube. And you can like, download, subscribe, and share. And we really appreciate your support. And, goodbye.

Friday Jul 28, 2023

In this episode, we explore demand avoidance, a common experience among neurodivergent people. We delve into the factors contributing to demand avoidance, including executive functioning challenges, sensory issues, and a desire for autonomy. Additionally, we take a closer look at Pathological Demand Avoidance (PDA), also known as Pervasive Drive for Autonomy, a complex and often misunderstood subtype of autism. Join us as we navigate this important topic, gaining a deeper understanding of demand avoidance and its impact on neurodivergent lives.
Dr. Megan Anna Neff, an AuDHDer psychologist and mother of a child with PDA, describes it as "anything that comes at the person that threatens autonomy invokes an extreme fight-flight response," and says that it can be seen through a lens of "nervous system through stress response," making it different than something like oppositional defiant disorder or conduct disorder.
Individuals with PDA sometimes develop sophisticated and subtle masking strategies to appear compliant and cooperative on the outside, even though they may struggle internally, which can involve imitating expected social behaviors and responses while suppressing their genuine feelings of overwhelm and resistance.
In this episode, Patrick Casale and Dr. Neff speak with Tara Holmquist, PsyD, about PDA and her personal experience as an AuDHDer with PDA.
If you're interested in learning more about PDA, trauma, and demand avoidance, this episode is for you.
Top 3 reasons to listen to the entire episode:
Understand how PDA shows up in the lives of those who have it and how it both internally and externally impacts their lives.
See how demand avoidance is often a coping mechanism rooted in trauma.
Learn coping strategies and skills for managing demands.
PDA can be a painful and overwhelming internal struggle that also manifests in ways that aren't always received well on the external side of things when the pressure of demands just becomes too much. 
This episode aims to shed some light on the complex world of demand avoidance and PDA to gain a deeper understanding. 
More about Tara Holmquist:
Tara is a clinical psychologist licensed in CA and WI. She has been in private practice for about 5 years working with adults with relational/attachment trauma, as well as addiction/substance use. Her practice is exclusively telehealth, and her practice values include a heavy examination and challenge of implicit biases, internalized capitalism, and patriarchal leanings. Her practice is trauma and social justice informed. And she's a pretty cool regular human too.
Tara's Facebook: facebook.com/tmhpsych
Tara's Instagram: instagram.com/tmhpsychotherapy
Additional Resources:
Dr. Neff's blog post on "Autism PDA Explained: The Core Characteristics of Pathological Demand Avoidance"
PDA MasterClass: For an in-depth clinical definition of PDA, check out Neurodivergent Insights MasterClass featuring Dr. Donna Henderson.
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.
PATRICK CASALE: Hey everyone, you're listening to another episode of the Divergent Conversations Podcast. Today we've got a wonderful guest on, a good friend, and colleague, Dr. Tara Holmquist. She is a PsyD in California, lives in Wisconsin. And today we are going to talk about PDA. So, Tara, thank you so much for coming on and just share a little bit about who you are. 
TARA HOLMQUIST: Yeah, and thank you again for having me. Megan, very, very nice to meet you. I'm excited about today. I'm excited about this experience. So, as far as my neurodivergence, I'm definitely ADHD. I am about 90% sure that I'm autistic as well, so I'm sort of late identified, still exploring, but pretty sure. And as of late, I've really been, it's like exploring, and excited, and learning about the PDA profile. So, I thought we could have some conversations about that today, our experiences, and just, you know, the difference between just having demand avoidance and actually like a PDA profile, what that looks like, you know, as an adult really isn't a fab for me.
PATRICK CASALE: Cool. Well, I'm going to turn it over to Megan, who this is her wheelhouse, for sure, to kind of give the listeners, if you don't know what PDA means, or what that looks like a brief overview, and then, we'll kind of jump into why we're doing this podcast today, too.
MEGAN NEFF: Yes, so PDA, it has historically stood for pathological demand avoidance, which, again, I mean, so many of these things are defined by what the outside observer might see, and so, that's a classic definition from the outside, a person with PDA is going to have a lot of demand avoidance. I prefer the term, oh, my brain is foggy today, I would know who coined it [CROSSTALK 00:02:03].
But, well, yeah, pervasive drive for autonomy, I was trying to think of, I think, it's an Australian person, perhaps, who coined the term, a PDA. And I really like that term, the pervasive drive for autonomy because that captures the internal experience. It's anything that comes out the person that threatens autonomy, invokes an extreme fight/flight response. So, we really have to see this through the lens of nervous system, through stress response, which is what makes it so different than something like oppositional defiant disorder, or conduct disorder, which is often what, especially, these kids get diagnosed with, typically, is the main like oppositional defiant disorder, but it's their bodies are going into fight/flight mode, sometimes freeze mode. 
So, we also can talk about internalized PDA versus externalized PDA. And it's, I think, conceptualizing it through anxiety. And then, fight/flight is a really helpful way of understanding these children and these adults. 
Increasingly, we're seeing more and more adults talk about PDA, which I'm also super interested in. I have a ton of demand avoidance. I'm a parent to a PDAer, so there's things that I don't relate to about the full PDA profile. But I think most autistic people have a ton of demand avoidance. 
So, I'm really also interested in teasing out that conversation, kind of like you were saying, Tara, but like, what's demand avoidance? What's PDA? How do we tell the difference?
TARA HOLMQUIST: Mm-hmm (affirmative). Oh, me too-
TARA HOLMQUIST: Oh, go ahead, Patrick.
PATRICK CASALE: We're going to find ourselves in this today where [CROSSTALK 00:03:41]-
TARA HOLMQUIST: This is going to happen. 
MEGAN NEFF: Well, even where like robotic, like, you talk, you talk, you talk or we'll talk over each other.
TARA HOLMQUIST: Yeah, yeah, that's what's going to happen today. Like, I'm just going to dominate everything.
PATRICK CASALE: Good I'm glad because I wanted to use this episode for like exposure therapy in a way for Tara. Tara is a good friend and DMed me about like, what you were experiencing that's why I wanted to have you on. And do you mind sharing, like, I don't know if you remember the specific example that you gave me, but what's happening for you when you were like, "Oh, shit, this is something I really associate with, this is something that's starting to make a lot of sense." And you're starting to conceptualize it through that lens.
TARA HOLMQUIST: Yeah, I don't remember the specific thing. But now that I'm thinking about it kind of all the time it's like, oh, it could be an example. But I guess for me, you know, I had a client that was talking to me about, you know, like, shame, and guilt, and stuff like that. And she was saying, "This is why I do everything so fast all the time because, like, I just don't feel worthy of taking up space or whatever."
And I was like thinking about that for a while, and then, started to apply that to me because that's historically and everybody that knows me in person will laugh because I'm constantly like running around doing everything. I'm running wherever I go, I have to do everything as fast as possible. All of the things that are on my to-do list is going to get done in like one microsecond because I just have to. 
So, I started thinking about my experience, and I'm like, it's not a worst thing for me, but it's an extreme discomfort for me. Anytime that I am expected to do something, even if it's just feed myself, or step away from whatever task I'm doing right now, anytime that I have that it's like, extreme discomfort in my body around having to do something, whatever it is, and so, the way that I've coped with that, or the way that I've kind of understood it is just like, just get it done as fast as possible so that I could just sit down on the couch and stare at the wall type thing, you know? That I'm just like, just do it, and then, it's like a loop. 
But this is my constant experience, where I'm just like having to do something, I'm extremely anxious about it, go do the thing as fast as possible, and then, go sit down, and wait for the next thing to happen that I have to do. And then, go, repeat, repeat, repeat, repeat forever.
MEGAN NEFF: So, Tara, I'm smiling because I'm having a memory from my summer before I went into my doctoral program. I was kind of loosely connected to the program, so I was able to find all the syllabi from the program. And what I did, I ordered all of my textbooks, and I ferociously read cover to cover all of my textbooks, we're talking about thousands of pages, for my first semester of grad school during the summer before I even started the program. And it was kind of what you're describing as the idea of having a task on my plate was so anxiety-inducing, that it was like, "I'm going to do this as fast as possible, and then, I can rest." 
And it totally stole my summer, right? Because it's like, I cannot rest until this is done. And that becomes a loop for me of, I work through my tasks really quickly because it's like, there's this fantasy, once this is done then I can rest. But of course, life doesn't work like that because, you know, bodies need maintenance and work keeps coming. But that's absolutely the fantasy. Do you relate to that? I felt like I heard some of that when you were talking.
TARA HOLMQUIST: Yeah, 100%. I mean, constantly. And I don't even know at this point what rest feels like, right? Because I'm not even resting when the task is done. It's just, okay, what's going to be the next thing, you know? And depending on who it's going to come from because internally, I can manage my own tasks that I set for myself, feeding myself, or doing work, going to see clients, whatever. But if my partner calls me or one of the kids calls and is like, "Hey, can you start the oven for me so I can throw in a pizza." I'm like, you know, just totally dysregulated and I'm like, I hate my life, and now I can't move. 
So, yes, yes, yes, yes, very much resonate with that and question myself a lot because then when I go to explore kind of, like, demand avoidance in general, right? When I go to explore this, you know, watching the mastermind or whatever that you did with Dr. Henderson, like, I'm like, oh, that's not my experience of like outward, you know. It looks like your opposition or looks like you're just applying all of these things. But on the outside, I'm like, I'm getting everything done all the time. I'm constantly going inside and I'm struggling, though. Inside it's torture, yeah.
MEGAN NEFF: So, can I put you on the spot a little bit? 
MEGAN NEFF: Clinically. So, I'm curious how or if you can tease apart like what is difficulty with task switching versus demand. I keep hearing you say it's like the demand will do the [INDISCERNIBLE 00:08:51]. We know task switching is hard for ADHD and autistic brains, right? That switching from I'm in flow, you're now asking me to like, get out of hyper-focus, or out of hyper fixation, and shift tasks. Can you tell the difference between like, what is task switching struggle and what is like, this is a demand coming in that I wasn't expecting that is, you know, threatening my autonomy.
TARA HOLMQUIST: That's a good question. I think, in the moment, and if I'm in it, I can tell the difference. It feels different for me. I will say this, anything that is not something that I'm currently obsessed with is a task for me. And, you know what I mean?
MEGAN NEFF: Yes, yes. I already [CROSSTALK 00:09:33].
TARA HOLMQUIST: Yeah, so if I'm pulled away from Ted Lasso, or if I'm pulled away from Schitts Creek, or if I'm pulled away from scrolling through TikTok because I'm just, you know, resting or whatever, anything is considered a task for me, and when it becomes something that I now have to do, that's when the anxiety starts coming in of like, I don't want to. I don't want to at all, and then it takes a lot of energy for me to get up and do it. So, it kind of merges. I can tell the difference. I don't really know how to articulate it, though, if that makes sense.
MEGAN NEFF: Yeah, yeah, no, and that's what I was curious about because like, you have the experience, and then you're a clinician, I was curious if you're able to tell that subtle difference. I think I could also tell the subtle difference, but I don't know that I'd be able to articulate it either.
TARA HOLMQUIST: Yeah, yeah. It's just something. It's just a feeling in my body of like, stress. Yeah, I don't know. It's just like a stressful feeling. It's a frustration when I have to switch tasks and then pulled away from something I love to do, you know? It's a frustration and it's like, okay, get it done. 
But as soon as like, I have perceived it as an expectation, then it's like, oh, now I'm going to throw a tantrum along doing them. I'm still going to do it, still get it done, but I'm going to be huffing and puffing, and like, agitated about it while it's happening. And then, I don't know if I can even get back into Schitts Creek, or Ted Lasso, or whatever the hell else I'm doing because now I'm waiting for the next thing.
MEGAN NEFF: I think that captures it well. I think I experience more frustration if it's a demand coming from someone else. If it's a task switch, I feel more pressure. Like, I've got to finish this before I can like mentally kind of evacuate the space and go to another one. So, like panic, frustration, and I would say, in my case, irrational frustration if a person requested a demand.
PATRICK CASALE: Tara, you mentioned to me when we were first talking about this, like a visceral reaction because I think it was a, I'm remembering the example now, like, I think it was like furniture shopping or something like that or some type of shopping with your partner, and then, all of a sudden that got canceled. And then, it was so hard to switch into, like, a mindset of let's go get a drink, or let's go do something else because you had already built up the mental energy to say, "I'm going to do this thing that I don't want to do, and now because the task is switching, I have such a avoidance to what's coming up, and it's going to come up viscerally, and it's going to come up physically, and I'm going to get really irritated and really frustrated about this."
TARA HOLMQUIST: Yeah, yeah. Thanks for reminding me because now I totally remember it. And that, like, I attribute more to, like, I have the intense need for sameness. Like, my routine is set. I already know what I'm doing, and if you're going to change that on me, don't do it five minutes before, you know?
So, the situation was we were supposed to go to soccer game, my partner is the coach at his son's soccer team. We were supposed to have a soccer game, game's at one o'clock, whatever. We're going up, we were waiting for it, waiting for it, waiting for it. And then, literally, like a half an hour before we were supposed to be there for the game, the other team canceled for weather. Okay, nothing we can do about it, fine, it's fine, it's fine. So, we kind of sat there for a minute, and then, all of a sudden he was like, "Okay, well, we have time now, let's go grab the furniture that we wanted to buy." 
And immediately I like lost my shit. I was like, "I'm not prepared for this. Like, even though we've been talking about it for weeks, we just needed to find a time." I was like, "I'm not prepared for this." I had like, a totally, like, visceral response of like, but just anxiety. And I attributed that to like, just pulling me out of my routine, my structure of what I had going on, you know? 
And I mean, I had that paralysis when that happens anyways. Like, I wasn't doing shit until up into the game. Like, nope, I have to sit here because the game is at one, and I can't do anything until this game is over. I've watched and cheered as much as I can. And then, we can go do furniture. But now that you've changed this on me, it was really, really difficult to even regulate that after that, you know, and we did it. We bought the thing, but I didn't have a good time. I don't know, it was a hard transition for me as most things like that are, yeah.
PATRICK CASALE: And all three of us have the unique perspective of being mental health workers and trained in regulation, and techniques, and strategies. So, it's interesting, you know when we're experiencing it ourselves when this stuff is coming up, and then we're like, shutting down or melting down, so to speak. And then, we have to reregulate and figure out a way to be able to push through to do the things that we don't expect to do or don't want to do. And like Megan mentioned, the transition switches are so challenging, especially, unexpectedly.
And I imagine, you know, if we're going to frame this for like kiddos, and teens, and young adults who are not mental health workers, or don't have the language, or don't have the skill set, that is where we would see the misdiagnosis of ODD or the things that come up, and where all of a sudden it's like we need behavioral modification here because this person can't, you know, switch from these tasks or when this is placed upon them, they melt down or shut down.
TARA HOLMQUIST: Yeah, 100% and, you know, one of the interesting things that came up, and maybe this is a similar conversation that you had with our mutual friend, Patrick, around the intersection of like trauma and PDA, or even just like, you know, there was three things that we're talking about, like masking, and trauma, your trauma triggers, and then, like PDA stuff. 
So, my experience, and this is where I get confused, and, you know, wonder about what this looks like as an adult versus what we see with kids is like demand avoidance or even the PDA profile is so focused on like outward behaviors, right? Or outward experiences of, you know, the kid that's going to sit in the therapist chair and go, "I'm a therapist today, and I'm the boss, and, you're not…" You know, all of those things. 
Like, I love that. But for me, and like, my trauma history is I was raised very, very, very like hyper independent. So, like, I do everything for myself all the time. And I do everything for everyone else. Like, I'm super, super hyper-independent. And there's a trigger around, like, if I don't do everything I'll get in trouble in some way. If I cause anybody to, you know, question my behavior or question something, then immediately I did something wrong, and I'm in trouble, right? 
So, I learned at a very young age to just take care of it, figure it out, take care of it, rely on myself, do all these things. So, you're never going to see me outwardly defying anything, you know? As soon as somebody gives me a suggestion, or an expectation, or a demand, or tells me to do anything, I'm doing it right away, and you're never going to see me from the outside and go, "You know, she's having trouble." You'll never know. 
But internally, I'm dying inside, you know? Internally, I'm like, I don't have the energy, I don't have the strength, I don't want to do any of this stuff. Like, now, it's expected of me because of how I've coped with, you know, emotional neglect, how I cope with not getting all of my needs met, you know? 
When I was a child, you know, this hyper-independence is not actually me being like, "I don't need help." Self-reliance and all that. It's like, actually, I need a lot of help, and stop telling me to do stuff.
PATRICK CASALE: Yeah, I can definitely relate to that. So, I think, like, it's a struggle, especially, when you are still managing to get everything done because if people don't see the other side of it, of how much energy it's taking, and how much sensory overwhelm it's causing. And, yeah, I'm curious about your thoughts on that, Megan.
MEGAN NEFF: I had thoughts then they flew away. I think I was thinking how adaptive it is if your trauma environment was one of, kind of, overreliance. And if so much of your energy was going to your own survival, how any demand on top of that would just be like, are you kidding me? And what a kind of brilliantly adaptive response to your environment.
TARA HOLMQUIST: Fair, fine, will be nice to myself. It was adaptive and also exhausting.
MEGAN NEFF: Well, that's the thing, right? Like, those things that help us survive, like, non-ideal environments stop being adaptive when we're adults, right? And that's why we exist as therapists.
TARA HOLMQUIST: That's right, that's right.
PATRICK CASALE: That's true, that's true. Megan, for you, and you mentioned like, you know, sharing some of these tendencies and traits with the PDA profile and having a kiddo who does as well who's a PDA or what does that look like for you on your end? 
MEGAN NEFF: Yeah, I mean, tons of... I think, and maybe I get a little nitpicky here, what I'm noticing, at least in social media, I feel like people are conflating demand avoidance with PDA. And so, that's where I like to be a little bit specific with my language of like, having parented a PDAer and like, experienced a very visceral experience around parenting them. Like, I can tell, okay, when I'm experiencing demand avoidance this is different. And so, that's where, yeah, I definitely relate to a lot of the demand avoidance.
And the internalization, I'm very similar to Tara, and that it's on the outside. Like, someone says, "Jump." I'm like, "How high?" Although, that's actually not always true. Like, I've been recently working through some shame on this of, I was collaborating with a colleague, we were going to do some public speaking, and I realized that public speaking is where my demand avoidance just goes full throttle. Like, I will fantasize about getting sick, I will try to figure out how in the world to get out of it. Like, I'll often commit to public speaking because I'll be excited for the first 24 hours when someone reaches out. And then, I will have so much demand avoidance that it makes me actually pretty flaky. 
So, I've decided to stop saying yes to public speaking for the next year just to see like what set like because I will, for months and months and months have so much anguish around it, and I'll procrastinate which isn't common for me. So, it is one place where professionally I really notice my demand avoidance causing some tension. 
But then otherwise, yeah, a lot of the internal experiences of I do a lot of tricks to get myself to do things. It's interesting just hearing other people talk about their internalized PDA. It's one of those moments where it's like, "I thought everyone did this." Like I thought everyone tricked themselves into kind of multitasking, or doing these things, or making it a game to get themselves to actually do the thing. But yeah, I spend a lot of mental energy if it's something outside of my interest. 
I think it's one of the reasons I'm shifting away from clinical work, and right now two of my five days in a week I don't have any demands on me unless I'm placing them. I have a lot of work to do, I have a lot of writing, I have a lot of content to create. But those days feel so different to me because I'm waking up and it's demand free. It's whatever I want to do. And so, I am moving towards structuring my life more and more that way because it just works better for me.
TARA HOLMQUIST: Yeah, that sounds like a dream.
MEGAN NEFF: I know. I'm sorry. Are you doing five days of clinical work?
TARA HOLMQUIST: It's like four and a half. My Monday's are-
MEGAN NEFF: That's a lot. 
TARA HOLMQUIST: Well, they're such a good job of like, my Mondays are dedicated to me. But now I've started to fill up my Mondays with doing ADHD and autism evaluations, and like, absolutely love doing it but absolutely hate writing reports.
MEGAN NEFF: Obviously, that is a big demand.
MEGAN NEFF: I have a mixed relationship to assessments too. I love it and we need so many more assessors and the report, that's a big demand.
TARA HOLMQUIST: It is. And that's why I'm still sort of, you know, Patrick's always like, "Let's go. Whenever you're ready to go into it, like we're going to support you, we'll go full force." And I'm like, "I don't know because I love doing it. I love meeting with people. I love the assessment part." And then, yeah, it's just that writing part that I'm just like, "Well, can I just tell you? Like, can I just tell you instead of writing all this stuff down?" Like, yeah, just, you know.
MEGAN NEFF: Mm-hmm (affirmative), I mean, I know this isn't a consult call, but you probably could. Like, for people who aren't looking for accommodations, you probably could find a way to make a much briefer report, and then, do more of it verbally, depending on what they're needing.
TARA HOLMQUIST: Yeah, I had someone actually last week that we had that conversation, and they were like, "You know, I don't necessarily want it written down anywhere. But I do want to explore this and like, what are our options? So, can we talk about that?"
MEGAN NEFF: Yeah, I'm seeing more and more people wanting that. They're wanting confirmation, but they're not wanting that medically anywhere, which kind of makes sense to me.
MEGAN NEFF: That's your that's your demographic, that's your like, ideal client, and people who want they're like, "Yes, I anoint you as a psychologist with this diagnosis, but I'm not going to medically put it anywhere."
TARA HOLMQUIST: Exactly, exactly. I mean, it's just good [CROSSTALK 00:23:47]-
PATRICK CASALE: …if you're able to just anoint people with these things and then you validate, and support, we don't have to, you know? I think that speaks to this profile in a way, right? Like, the demand for I have to write this report, but I absolutely don't fucking want to for a myriad of reasons. 
And then, I notice that myself for so many things, and what I hear you saying, Megan, is like really creating a schedule in your life where it's much more flexible in terms of demands and demands that are put on you, and if they're going to be there they're demands that you put on yourself. 
And I know that not everyone has the privilege to do that with their schedule or create around it. But I do think that's a great strategy for people who are listening who need some relief, first up from some of this stuff is to figure out ways to lessen the load of demands that are coming on you from other people and less that you're putting on yourself. 
PATRICK CASALE: Tips, strategies, techniques, anything that we can offer the audience about, you know, when they're struggling or when they're experiencing anything like this that we're talking about. 
MEGAN NEFF: I mean, similar to what we're just talking about, I think, if, again, if someone has, like if this is accessible to a person, having one day a week that is demand free. And it could be a weekend day, right? But just the relief of, like my daughter and I will both talk about this, like the relief when we wake up and it's like, it is an open day, there are no demands. Having at least one day a week where… I think that's really soothing and to be able to depend on it too.
TARA HOLMQUIST: Yeah. Even the idea of like, oh, like it's a free weekend, right? And like even the thought of, "Oh, maybe we'll go to dinner later on Saturday night." Or something like that, if that's planned on Friday night, that's not a free day for me on Saturday, you know? It's not an open day for me because I'll like, all right, I'm going to do nothing literally until whatever time dinner is going to be, you know?
MEGAN NEFF: So, are you like this? I'm very much like this, like spontaneous socializing. I cannot make plans with people. Otherwise, there's something on my day. So, if I'm trying to connect with someone on the phone or see someone that doesn't happen much anymore, but it's got to be like, "Hey, are you free right now?"
TARA HOLMQUIST: Yeah, absolutely, you know? Even scheduling this, right? It was like, "Hey, here's your options for this." And I'm like, I just want to say no to all. Like, first of all, I should say, like, reactionary for anything, I say no, first of all, you know? "Tara, can you turn on the oven for me?" "No." "Can you do…" So, everything is no even though I'm going to get up and do it. 
But absolutely, like scheduling even this time to talk it was like, okay, I'm going to do it in the middle of my clients. I mean, it was limited time anyway, but like, I'm going to do it in the middle of my client so that I can't get out of it, I can't say, you know, yes, I'll do it, and then find some excuse on a Saturday to not do it, absolutely. Like, it has to be now or never, and preferably never. But let's do this now.
MEGAN NEFF: That's another good strategy is packing demands. Like, same thing with Patrick, when we started this podcast, I was like, "Well, Tuesday is my busy clinical day so let's do it Tuesday to record." Because it's like, it's a demand day, and that means that my Wednesday can tend to be low demand, but by packing my demands, like that's one strategy, and it sounds like you kind of did that too.
TARA HOLMQUIST: Yeah, without even knowing.
PATRICK CASALE: I have to do that with scheduling stuff. Like, scheduling my own stuff I'm fine with it, but I notice every time I scheduled someone else's podcast, or someone else's speaking engagement, or someone else's anything I'm like, rescheduling, rescheduling, rescheduling, pushing it back, pushing it back, pushing it back. And there was a part of my brain that's like, "Just fucking get it done." But I don't want to, so then, I can't. 
And I've rescheduled on one person in particular that I'm thinking about right now, Porter, like conversation about, like, come on my podcast, be a guest. And every time I pick a time, like, I don't want to do that that day. I don't want to do that at that time, like, so now it's in August, and I'm sure once we get to August it'll now become October, and it'll just never happen. And I'm sorry if you're listening, I-
MEGAN NEFF: Do you all do that fantasy thing where it's like, "In August, I will want to do this. Like, this is going to be a big deal." So, I'll commit to things, so like the speaking thing I mentioned that I then got out of, but I also had things out off my plate since then. But it was like, "Oh, in September, like I'll be this whole new person who would love to do public speaking." And it never happens. But the fantasy always stays that, you know, four months from now I will just, you know, love that demand but…
TARA HOLMQUIST: 100% or right now, like, I always take the week between Christmas and New Year's off, and here we are like almost in June and I'm like, "Oh dude, that week is going to be so good. I'm going to come back to the New Year just a whole new person."
PATRICK CASALE: That's such a fucking lie too, like, it's just a fucking lie. I get kind of romanticized idea of that. And I don't know if you all relate, but I think you do because I saw you both like nodding in agreement when Tara was talking about something, but like rushing from demand to demand or task to task to get them over or to give yourself like breathing room, I'm always telling myself like once I get this done, or once I've created this thing, I can finally breathe and like have nothing to do. And that never happens. And that feels like this internalized torturish pressure of like, I just want to disappear from all of this. But when could that actually happen?
MEGAN NEFF: Yeah, disappearing fantasies. I've had that since I was a child. Like, where, oh, this sounds so morbid. It sounds so morbid. I don't have this fantasy as much since realizing I'm autistic and adapting my life, but like, fantasizing that everyone I knew… This is-
PATRICK CASALE: You can say it [INDISCERNIBLE 00:30:15].
MEGAN NEFF: Oh, my God, that everyone I knew died. And that I was like, starting over nowhere, with no expectations on me, no demands on me. And I think part of that was the mask of like, I could actually be myself if everyone who ever had known me didn't exist, or if like, I moved to another country, that's a much less morbid fantasy, just me, but then, I'd live with the guilt of like having left and moved to another country. But it was about a demand avoidance and about like authenticity of I can't actually be my authentic self until everyone I've ever like, touched in my life as a human doesn't have, like, a known history of me in their memory.
PATRICK CASALE: You're really hoping for like the [INDISCERNIBLE 00:30:57] fingers snap, and then, half of those people are just gone.
MEGAN NEFF: Yeah, obviously, not a real fantasy, but I-
TARA HOLMQUIST: Maybe they could still exist, but just their memories are wiped. It's like a Men in Black thing. 
MEGAN NEFF: Yeah, yeah. 
PATRICK CASALE: Yes, yes. I can relate to that. I think that there is this fantasy of starting over or just not having anyone know anything. And you can just start naturally. Maybe that feels like a common fantasy for a lot of neurodivergent people who have struggled so significantly with social struggles, and just the day-to-day lived experience of what it's like to live inside a body with a nervous system that we have. 
I mean, what I'm hearing all of us say is that a lot of just getting through life is really fucking challenging. And we're constantly figuring out ways to do things so that we can get through another day, and that it's exhausting, and it's a different type of exhausting than like a neurotypical person saying, "Counting down the days to that beach trip, and that's going to rejuvenate me." It's like, we don't really have an escape. I think that's what we're saying.
TARA HOLMQUIST: Yeah, yeah, I even like, rest and relax in private, if that makes sense. Like, I'll do, you know, all of the things that I'm supposed to do and expected of, and that's my role, and my family, and my life, and everyone involved, I'm a therapist then I'm whatever. And then, as soon as I have like a unexpected break in my day or something like that, like, I ran over into my bedroom, shut the door because my kid lives downstairs for one more day, and so, I'm like, "Oh, I don't want anyone to see me like resting." I'm hiding away because, immediately, as soon as I don't have something to do, somebody's going to ask me to do something, or there's like a shame in resting, and I think that's part of my trauma stuff is like, there's a shame in not doing something all the time, or making sure that someone's okay all the time. So, I'd rather hide away in my room with my snacks and my Tiktok or whatever. And like, pretend, you know? Like, I don't exist to anybody right now. Everyone thinks that I'm doing something else. 
So, it's kind of similar to what you're saying, Megan, which is just like, I can be exactly myself, unmasked, and just no demands on me whatsoever, and I could just literally stare at the wall, like people think I'm joking. I'm like, I just want to stare at the wall for like an hour. Like, I literally just want to stare at the wall.
MEGAN NEFF: Yeah. Well, that's an interesting part of it, too, is I hear a lot of autistic people talk about like how comfortable it is to be home alone because it's not just that not having a demand, but knowing no demands are going to come at me. So, like when you go into your room and retreat, and it's like, okay, how do I create a bubble where someone doesn't just walk in the room and like, assault me with a demand. So, that's an interesting psychological component of it, too, is not just there not being demands, but like the kind of certainty no demands are going to come at me, which is really hard in this world with how kind of interconnected our lives have become with technology. Patrick and I have talked about this a lot, like the incoming pings and pawns like in all these little splintered demands that come at us. It's hard to not be assaulted by demands all day long. 
PATRICK CASALE: It really is. And I think you're so right about… That's the beauty of having the ability to work from home is you kind of do get to set your expectations, right? Of like, who has access. 
But Megan just touched on something I wanted to mention, for those of you listening, like really figuring out a routine to start your day because I know I don't do a good job of this where I immediately as soon as I wake up, check my phone because I put my phone in a different room at night because I have to get away from the demands. I also feel like this unbelievable pressure to always be responsive to things. So, I check it and immediately it's emails, messages, Facebook messages, Instagram messages, group practice messages, and my day can be ruined in a matter of seconds. And it really is important to try to figure out a routine and a strategy where you're not doing that immediately to start your day or end your day because there are techniques that we can put in place to have some distance, even if it's momentarily. Like, we don't get to just disappear all the time. 
But if even those momentary blips or rest, examples or abilities to just step away, even for a minute or two, and build on that, I think, it is about building on those moments as well. And like, then really incorporating them consistently, like Megan said, having a day, even if it's a weekend where you just don't schedule anything, or you don't check your phone, or you don't commit to plans because it's just a day to allow yourself to breathe. And I think that is so crucial. And don't follow my advice of checking your phone first thing in the morning because it's not-
MEGAN NEFF: [CROSSTALK 00:36:16] I do the same thing. And I've been learning so much more about like low arousal mornings and like, I have this fantasy of like an ideal morning routine. But yeah, I am the same way, Patrick, I-
TARA HOLMQUIST: Yes, and then it's a battle, right? Like, okay, I'll go put my phone in the other room, but then the battle is, I want to go in the other room and check, I got to go in the other room and check because how much is building up, you know?
PATRICK CASALE: [CROSSTALK 00:36:45]. Yeah, I tried so hard. It's so freaking hard. And I think that's where my, you know, PDA kicks in. And I have this inner personal feeling, maybe it's my own trauma history of having to respond, and having to clear, and having to constantly be like one step ahead. And that goes into my ADHD profile too, of like, I have to do everything immediately, or I'm going to fucking forget. And that feels like internalized pressure constantly because it's like, "You're so responsive. You responded to this email and this message." I'm like, if I don't, I never will. But that feels like infinite pressure that never ever goes away.
TARA HOLMQUIST: Yeah, I love that you're tied into ADHD because that also, I think, represented demand avoidance. I'm the same way of like, I don't trust my mind to remember to do this later so I will do it now. And it's small and big projects. Like, if I'm excited about a big project, I like have to get hyper fixated, and do it in a week, or like, send an email right now because it's just like, it's so hard to get myself to do it later, or I'll completely forget.
PATRICK CASALE: Yeah, yeah, schedule send has become my best friend for things like that because like, schedule sending emails, schedule sending text, but I can't do that on certain platforms where they don't have that as an option. But like, where it is an option, it is a lifesaver because then I'm like, okay, I can get it out of my head, I can get it cleared off the never-ending list, and I don't have to like message someone at 1:00 AM or whatever their experience. 
So, it is a challenge for sure. But that is something that's just been an accommodation that I've had to incorporate, otherwise, like you said, Megan, like, it would be gone, or it would never happen. And that just, again, feels like constant pressure. So, maybe a different topic, but ultimately, definitely, a part of the experience for sure.
TARA HOLMQUIST: I agree. I think it goes in hand in hand. Like, I know that when I'm under a certain amount of stress like my ADHD symptoms are just out of control, and then, it's this battle between let me get everything done as much as I can because I'll forget. I will forget and then, I'll do a lot of half things. 
And what I'm noticing lately because I've been exploring all this stuff and like what would it be like if I just unmask, like, what am I actually like, you know? And that's when I realized that, "Oh, I can't remember shit." Like, I actually can't remember anything. I don't know how I've survived 40 years of my life. I don't know how I became the therapist that I am. Like, I don't know how I do any of this because when I'm battling, you know what I trust my mind is going to do or not do plus exploring, like, what would it mean if I didn't have all this avoidance around like these expectations, what am I going to be like? And so far I don't like it so much because I'm not very functional, but we're going to learn to adapt. We're going to figure this out. 
Megan, I'm just going to be on your website just all the time. I'm just like, what else is she going to say about this? I need help.
PATRICK CASALE: Megan's resources are incredible. So, you know, I feel very honored to be co-hosting a podcast with you, Megan, because I'm like, geez, I just think everything you're creating, and doing, and how you're showing up for the indie community is really, really amazing. 
And yeah, I think, Tara, you know, a lot of over-functioning for executive functioning and deficits, and like, accommodating, and just figuring it out, and, you know, I think a lot of neurodivergent folks could relate quite a bit to what you just said, and you're not alone in that. I know I feel that way a lot of the time, I know Megan's mentioned feeling that way a lot of the time. Like, it's definitely one of our realities. 
So, I think we're at our awkward goodbye space, which is something we are figuring out as we go. But I do want to thank you for coming on, and just being vulnerable enough to share your side of the story and how you experience this. I think it'll be very helpful for everyone listening.
TARA HOLMQUIST: Yeah, no, I really, really appreciate. This has been very validating for me just having you both here, and just talking, and conversating about this because I feel like I'm doing this alone, and you know, just checking people's resources, and things, and feels lonely. So, thank you. Thank you for having me here, experiencing with me.
MEGAN NEFF: Yeah, thank you so much for coming on and for using one of your, like, demand spoons to be here.
PATRICK CASALE: That's going to be the episode title, something about demand spoons.
PATRICK CASALE: I'm sure we will be linking anything Megan has created to the show notes so that you all have access to it. She does have some diagrams on PDA, more information about PDA, and just anything in general. So, that will be in the show notes as well. Megan you got anything to add before we awkwardly close this?
MEGAN NEFF: Yeah, just regarding resources, I've got a fantastic masterclass up with Dr. Henderson who is a really wonderful neuropsychologist, who I would say is one of the specialists in diagnosing PDA. So, if you're a clinician looking for like, is it something I diagnose? What are the core features? We don't actually diagnose it, but we can't talk about it in the report, then I would say definitely check out Dr. Henderson's work. And I have a masterclass up where you can kind of hear more of the clinical definition of PDA.
PATRICK CASALE: Perfect, and we'll link all of that in the show notes so you all have easy access to it. Thanks for listening to another episode of Divergent Conversations on all major podcast platforms and YouTube. Like, download, subscribe, and share. Bye.

Friday Jul 21, 2023

Socializing in groups can feel exhausting and often adds an entirely different level of complexity to the sensory experience and challenges for autistic individuals.
Patrick Casale, an AuDHD mental health therapist, shared his thought processes and some of the questions that run through his head when in group conversations, such as, "When do I interrupt? When do I not? When do I jump in? When do I not? When do I stay quiet? When do I avoid adding commentary?"
Dr. Neff shared that she shows up differently in conversations with people one-on-one than in group settings, and gave the example that in her one-on-one conversations with Patrick during the podcast episodes, her "analytical brain is able to pretty much go offline" and she gets immersed in the conversation, but said that she can very rarely do that in groups.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, share their experiences around communication in various social settings.
Top 3 reasons to listen to the entire episode:
Understand what tracking is and how it plays a role in social interactions and regulation for autistic individuals.
Identify ways to reduce stress and overwhelm that is related to social interactions and sensory overload in group settings.
Learn how to balance the personal needs of autistic individuals with the needs of other members of their inner circle who are allistic.
It's important to find ways to support mental well-being through the struggles of emotional overwhelm and sensory overload that many autistic individuals face on a daily basis. Social interactions and experiences can be different for everyone, so we encourage you to make the effort to find ways to do restorative self-care and prioritize social activities that align with your values and needs.
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.
DR: MEGAN NEFF: So, Patrick, I kind of thought we could actually pick up today where we left off last week. And by left off, I mean, actually, what happened after we hit the stop recording button.
PATRICK CASALE: Yeah. So, last week, we recorded with Thomas Hensley. And we were experiencing things in the moment while recording that you and I were talking about afterwards. And I know you were thinking about that throughout the week, and wanted to talk more about what was actually happening, and how you were experiencing that conversation, and vice versa. So, what was coming up?
DR: MEGAN NEFF: Yeah, yeah. Before I answer that, I just kind of want to do a bird eye commentary as I do. One thing I've noticed… so we have now launched and we have a few episodes out, and we're getting feedback, and you and I have recorded, this is our 10th episode. One thing I was reflecting on that I think we're doing that's, A, pretty vulnerable, and I think we both named that but B, I think what has the potential to be really helpful for folks is we are bringing our lived experience and then we're also kind of analyzing it or putting it in a frame from also being mental health therapists. But what we're also doing, this is the part that feels more vulnerable is in the moment processing. 
And this is actually my favorite kind of therapy because it's so raw, it's so powerful. This is happening for me now. And I think we're able to talk about it in a way that's both centered, like centered in our experience, but also decentered. And by decentered, I mean, bringing, oh, this is interesting, from like a therapeutic psychological perspective. 
So, that's the bird's eye view of like, I kind of see that as not the whole thing we're doing here. We're not just like analyzing ourselves for an hour every week, that'd be weird. But it's definitely a part of the conversation we're having. So, in that vein, that's kind of where I wanted to dive into this.
PATRICK CASALE: Yeah, I appreciate you naming that. And I think that's true. I noticed, like, it's a complex conversation every week where there's a lot of layer. And I'm always tracking you, which is something I don't know if I'm doing that out of like, feeling protective of your energy or what we're talking about. But I did notice that last week while we were talking, I noticed you stimming a lot more than usual, I noticed you kind of rocking back and forth. I was watching your face and your expression a lot of the time when I was talking. And I think that these conversations are so nuanced, and complicated, and layered, and vulnerable, like you just mentioned. 
So, there's so much happening all at the same time, when you're trying to have like, a cohesive conversation too. And like, I'm really trying to think about like, what am I saying? Does it even make sense what I'm talking about? Is it landing the right way? A lot of analytics in my mind that are always kind of happening, which is basically every single experience of every day of my fucking life.
DR: MEGAN NEFF: It's busy, it's a lot. Like, no wonder we're tired. Yeah, it's a ton. So, yeah, there were there kind of two things, two threads I wanted to explore. One was what you just named of like, you were tracking me. And I actually think it's related to alexithymia, which is what we were talking about last week. 
I've had this really interesting experience of, I identify both as an empath and alexithymic, which is a weird combo, but where I'm absorbing other people's energy and I can usually, like, identify like, okay, this is what it is, and, you know, bring in my analytical mind. But I have a really hard time tracking myself. And I kind of think it's because I'm so cute into others along with, like, other alexithymia traits. 
But what was interesting was we hit stop recording, and you were like, "Are you okay?" And I knew I was, like, I've been sick the last three weeks. I knew it wasn't awesome. But the level of concern in your voice was like this aha moment of like, "Oh, yeah, I'm not really okay." 
And I've had that experience, typically, with my neurodivergent friends or my empath friends, where they'll kind of look at me and be like, "Are you okay?" And it hits as like, kind of, "Oh shit." Moment of like, I didn't realize I wasn't okay, and then someone asked me that. And I'm like, they're picking up something that obviously I'm not fully experiencing or understanding. 
So, that was one of the things I found really interesting about last week, was just you were picking up things that I wasn't picking up and I didn't realize till I had time to reflect on it afterwards.
PATRICK CASALE: Yeah, and I know you mentioned to me that you also hate that question like, are you okay? So…
DR: MEGAN NEFF: Yeah, yeah. 
PATRICK CASALE: But it's also interesting that you interpreted my, "Are you okay?" Like, in a different way than when we would start an episode and be like, how's it going today? Like, that's always [CROSSTALK 00:05:12].
DR: MEGAN NEFF: Yeah, there's concern in your voice. I think I feel exposed when people ask me are you okay and I'm not. It's like, "Oh." And maybe it's like, I thought I was hiding that better than I was, or someone is seeing through me, and they're seeing something I'm not yet seeing. And actually, I think that happens in therapy a lot for autistic people is when our therapists offer reflections that we haven't yet seen in ourselves. That can feel really intrusive.
PATRICK CASALE: Yeah, really intrusive. And it's also probably the sign of good, like [CROSSTALK 00:05:48] therapist, right? 
DR: MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: That happened to me last week. Like, we got off our podcast, I saw my therapist a day later, she mentioned something where I was not recognizing it yet. And she was already reading what was happening in the moment for me as I was processing what she was saying, and she's like, "Are you interpreting what I'm saying like this? And are you experiencing it this way?" And I was like, "Oh, yes, I am." But in the moment, there's like this layer, right? Of like, I'm outside of this experience looking in and I do feel like it is on the verge of the alexithymia/dissociation conversation. 
But I also think, maybe that's so often how we move through life as where we are trying so hard to not be vulnerable, and trying so hard to protect ourselves from how the world sees us. And then, if we're really attuned, and we're really picking up on these subtle movements, and subtle gestures and expressions, and I think it's even goes further than just being a trained therapist. It's like, being a trained neurodivergent therapist makes it even, like, more in focus and clarity for me, and for you, it sounds like as well. And I think that's what I was picking up on. It's just like these little subtle things where I was like, I've been recording with you for almost three months now. And that was the first time I had seen a pretty… and I can't even say the word is not drastic, because it's not drastic, but it was definitely like there was a big difference. 
DR: MEGAN NEFF: You knew it was because you knew what to look for. 
DR: MEGAN NEFF: Yeah, yeah. So, I'm curious what you saw. Like, I mean, maybe you already answered that, you saw me stimming and swaying, but like, there's something about my face, you said… Or even, you mentioned like, I went more analytic, like I went more cognitive.
PATRICK CASALE: Yeah, yeah. I think that was something in my mind is you had mentioned to me at one point that if you go really cognitive, if you go really analytic, that's a safe space, right? Like, that's when I'm feeling really uncomfortable and that's when I feel really confident in myself to show up and talk because I can almost like, disconnect because that part of the brain just takes over and I don't really have to drop into what's happening for me, in my body, or just emotionally. 
So, I asked you the question last week, like, are you going to this place in your brain because you're uncomfortable? And you pivoted very well. Like, very, like, trained response of like, "No, this is where I feel the most confident and we're talking about something clinical." And I was like, "Okay, cool."
DR: MEGAN NEFF: Like, partly that might have been true, but like, I think you're absolutely right. It's a safer place for me. And I think, so here's what, this was kind of my aha moment after we recorded and I was thinking about how I showed up differently. 
And again, I don't even know that listeners will notice it, but you're very hyper-vigilant in your tracking, which I'm sure comes from honest masking, among other things. But that was the very first time we've had a conversation that wasn't a one-on-one conversation, it was a group conversation. And it's so interesting. I think people do have such a different experience of me if it's one-on-one versus group. I think it's why I became a therapist and not a couple's therapist. I work one-on-one with people, I show up really differently. 
When you and I are talking, even though we're recording for apparently thousands of people, the analytical brain is able to pretty much go offline and I get immersed in our conversation. And I can't do that in groups. Rarely, rarely can I do that in groups.
PATRICK CASALE: I love that you're naming that because it again, exemplifies what you said to begin this conversation of like what we're doing in the moment, of how we're conversating and also, how we're bringing it back with this, like, clinical lens to dissect some of this stuff. 
And it's so interesting because in groups I do exactly what I was doing last week, which is I kind of attune and track the people who I really care about. And then, I'm very concerned about, like, how they're experiencing the group dynamic. And I had never met Thomas, wonderful human being. But you two had already had conversation before and some relationships. So, I was like, okay, when do I talk? I was feeling like we were, you even mentioned this, like, it was very, what's the word? 
DR: MEGAN NEFF: Repetitive?
PATRICK CASALE: Yeah, yeah repetitive and it almost turned into this, like, loop sensation where like you would talk and Thomas would talk, then I would talk, then you would talk. We never had, like, you mentioned something that I jump in and or vice versa. It was shifting and transitioning in a way where it was like, very regimented, and very, almost rigid in a way in terms of like, even though it wasn't being named.
DR: MEGAN NEFF: Yeah and I think that, I imagine this is a really common experience for a lot of autistic people. Like, there's a spontaneity to one-on-one conversation, a playfulness even that I can tap into that in groups… And I think it is because I'm doing so much work in my prefrontal cortex to analyze the conversation. 
So, I noticed this afterwards, I was much less in the experience, and much more up here in my prefrontal cortex of, A, I was feeling a lot more ADHD, and I was like, needing to intentionally be like, okay, pull your focus in, pull your focus in. But I would be listening to Thomas, especially, to then figure out, okay, what is he saying that then I can, like, add to or because I kind of once we fell into that, like, circles, like, okay, it's my turn to talk now. 
And so, I'd be listening to him, but I wouldn't be immersed in the listening. It'd be like, listening to figure out what could I add to? Or what could I associate to from something he had said, which is a very different way of listening. It's not an experiential like when you talk, Patrick, there might be some of that happening, but it's more like, I'm in it, I'm listening, I'm curious. It's not like, let me listen to then figure out what to say next, and then script out what I'm going to say next in my head. So, that sort of analytical, the mask, I would say, is so much more present in groups for me.
PATRICK CASALE: Yeah, I think for me, too, and I was doing a lot of that like trying to figure out okay, this is what's being said, how do I respond? Or how am I going to frame my response? So, again, that's taking you out of being, like, as present as can be in terms of conversation. 
But then there's this anxiety that creeps up and not being as present in conversation and trying to like, because I don't do well with like, structured robotic response. I have a really hard time thinking like, okay, point A is this, point B is this, point C is this. I have to be very spontaneous in conversation to have it feel genuine, and authentic, and just to feel like it's actually a part of. Otherwise, I feel like I'm on the outside looking into it. And I'm not really participating as much. 
So, it was very interesting. And I think that for me, you just mentioned like, maybe high masking, or whatever the case may be, I've always tracked body language, and facial expression, and everything. And in group conversation, it's so much energy to constantly track like- 
DR: MEGAN NEFF: Oh, yeah.
PATRICK CASALE: …Megan's face, Thomas's face, body movement, posture, how am I feeling in relation to how both of them are… they are feeling? And I'm like, I don't even fucking know what's happening anymore.
DR: MEGAN NEFF: Mm-hmm(affirmative). It's really overstimulating. Like, it's been interesting. It's something I write about, so I'm thinking about, so I'm just… and if you're doing an autism assessment, you really have to look at social skills, one-on-one for social skills in a group. 
And the more I think about it, I mean, I think there's a lot. I think, for one, it's the fact that there's so many conversations going on, there's so much unpredictability and spontaneity, and that's just a lot to be coming at us. But it's a really sensory overwhelming experience to be in a group and to be, especially, with that bottom-up processing style, where, you know, we take in details, all the little details, and then build up to a big picture. 
So, the sensory and cognitive experience of being around all these bodies, tracking, I actually don't think I track quite as much as you do. I think I dissociate more in groups. And then, taking in people's information, taking in the body noises. Like, it is a really overstimulating environment. So, I think a lot of us enter some sort of stressed body state and it's really hard to be socially engaged when we're in a stressed body state. 
So, I'm beginning to think about groups more through a sensory lens than, I mean, and they're not totally separate. But more than a, like, social communication deficit. I think we're sensory overloaded in groups, and the processing style, and like knowing when do I interject? And what do I say? And that part's hard too.
PATRICK CASALE: Yeah, I think it's absolutely both. And it is the sensory overwhelm for sure. And, you know, I think I notice that when I'm out socially too, like, if I'm with one person a hell of a lot easier to conversate, be quiet when I want to be quiet, know when to respond if I need to respond. But when you're in a group setting, and you're having that bottom-up thinking experience, and let's just say you're in a restaurant, let's say you're in a bar, let's say you're in a loud environment, and then you're also adding into the mix people that are not part of your group, you're adding in all the stimulation behind the scenes, the light, the noises, the other people, the other energy, all the things that are happening, and all of a sudden it's like, I will find myself shutting down and really almost having this, like, panic moment where I look like a deer in the headlights situation. And I'm just like, "Oh, shit, I really don't know how to proceed here comfortably."
And I think this will eventually be a segue into a future conversation that we've alluded to many times, but that is where substance use comes in for so many autistic people. 
DR: MEGAN NEFF: Absolutely. 
PATRICK CASALE: Because it's like, well, at least alcohol will numb my nervous system and my overwhelm.
DR: MEGAN NEFF: Yeah, yeah, no, I absolutely went to alcohol back when I was socializing. That's funny but true. And because, one, it like dulls the senses, so I want to be sensory overloaded too like that, you know, liquid confidence, that is not always a good thing. So, the filter or the mask kind of would go off, which would make me more comfortable in groups. 
Now, after the alcohol would wear off, I'd go home and like come through every conversation I'd had and like, "I can't believe I said this or that." But yeah, I absolutely think there's a reason that we are so vulnerable to, particularly, alcohol misuse.
PATRICK CASALE: You think this is why like, and I've never been a part of this community, but I think that maybe it makes sense why so many people that are autistic, or ADHD, or just neurodivergent, in general, are parts of like gaming clubs, where you don't really have to socialize in terms of like actual communication, but you're doing something active and participating.
DR: MEGAN NEFF: Yeah, absolutely because it's parallel play, which autistic people, particularly, really like. It's interesting, I was reading through a couple's book that is supposedly neurodivergent affirming. I keep using air quotes and realizing listeners can't see my air quotes. I don't actually think we have social communication deficits. That was an air quote. Anyways, I just used an air quote, and ADHD, bring back my thought, okay, book. 
So, like was purporting to be neurodivergent affirming, but then went on to say like, watch out for parallel play, like as if it's a bad thing and in a dyad. And I do think it's important if you're in an autistic allistic relationship to make sure both partners are having quality time. But parallel play is a really meaningful, soothing way for us to connect. I think it's one of many reasons I married my spouse was we were really good at parallel play, we'd go to coffee shops, and we both like reading and writing. And we'd just do that for hours when we're dating. 
So, yeah, I think parallel playgroups is a really great way to connect or even groups that have structure. So, like D&D. Like, my kids both love D&D, and there's, I think, a lot of autistic people in the D&D space because it's structured. There's roles, there's rules, it's not that spontaneous thing. 
And I mean, I think we should be thinking about unpredictable conversation through a sensory lens as well. Like, that sensory cognitive information we're taking in. I've done well in book clubs because again, we have an object that we are talking about versus just free-floating conversation. I still do better one-on-one, but you know, book groups, or if I'm leading a group, back when I was teaching, I led a lot of process groups, which is interesting. I would have struggled to be a member of the process group, but I can lead it.
PATRICK CASALE: It is interesting. I think those are all really good points too, the structure, and the role, and knowing that there's a common goal here. And I think it also takes pressure off, of like having to be responsive or respond a certain way, or tracking constantly. I don't know if it completely shuts off the tracking and attunement of terms of energy absorption from just other people's energy, but I do think it alleviates a lot of the stress and overwhelm that comes with socializing. 
And then, I'm thinking about, like, just conversations in group settings like that, in general, when you start to notice where they are becoming kind of looped in or not robotic and rehearsed, but really, like, I'm struggling with transitions, you mentioned struggling with transitions all the time. So, it's interesting because then you're starting to track like, when do I talk? When do I not talk? Am I being rude if I'm about to say something? Or should I like, wait and hesitate? 
And that process, right? That like, I know I'm making these motions now too, and like, my stupid camera tracks my motion. So, like, when you're starting to do that, thinking about how much energy goes into that process, which might sound really simplistic for some people to be like, "Oh, when do I interrupt? When do I not? When do I jump in? When do I not? When do I stay quiet? When do I avoid like, adding commentary?" Just saying that out loud is exhausting. And then like, the actual experience of that is even more exhausting emotionally. And it makes sense too. 
And. you know, we're mainly focusing on like, the autistic side of this right now. But the ADHD side, right? Of like spontaneity, and like, I want to jump in because I'm either going to get distracted, or I don't want to forget what I'm going to say. And that can be really challenging, too, if you're trying to record a podcast and like, every time Megan talks, I'm talking, and that becomes chaos as well.
DR: MEGAN NEFF: Yeah, yeah. I was like, that's funny. I was just thinking about ADHD. And I think when I'm more in my ADHD self, it's interesting, groups in the moment feel easier for me, but I have more rumination afterward. 
PATRICK CASALE: Yeah, I agree with that. 
DR: MEGAN NEFF: Because I like, yeah, impulsively said things, and then because of the autistic parts because I impulsively say things that are not context-appropriate and yeah.
PATRICK CASALE: But do you think like, when the ADHD part is more prevalent, that it feels easier to socialize in some ways?
DR: MEGAN NEFF: Oh, yeah, it feels easier, but then there's more shame afterwards. And so, I think I even would coach myself to like, okay, when you're in groups, like, I always do so much self-monitoring. Like, don't say anything, or here's your rules for talking, or like, in class, if it was a subject I was really into, I'd want to talk a lot, and I'd make rules for myself. Like, you can only raise your hand three times. Like, there's a lot of self-monitoring to control the excitement and the impulsivity. And it is absolutely easier. But then, yeah, way more shame. 
When I'm more on my autistic part, yeah, I'm pretty disconnected, I'm pretty foggy, I don't really say anything. Like, my parents have noticed that when we gather as a family. And when we gather as a family it's a high sensory experience of six kids, six adults, wait, eight adults. I can't do math, adults and kids, and conversation. And my dad has noticed, he's like, "Yeah, I noticed you seem pretty, you just shut down." And I'm just, "Yeah, it's low-key dissociation." And that's harder, but then I'm not ruminating afterward.
PATRICK CASALE: So, in my best therapist voice of what I hear you saying is both come with significant social struggles, and challenges, and potential aftermath, and fallout?
DR: MEGAN NEFF: Yeah, yeah. And I think for me it's interesting. I think, where I've landed, I've decided it's easier to do the autistic, I'm not in the experience. Now, if it's a group that I was really excited about, and that like pulled out natural passion, I think it would feel good to be more in my ADHD part. But for most groups, my default at this point is the more autistic part. In my 20s, it probably would have been more the ADHD part.
PATRICK CASALE: That's interesting. I could see that just based on how you've kind of framed your day-to-day. And that probably makes sense and what serves you in terms of self-preservation, too. I find myself vacillating quite a bit. Like, the ADHD part will definitely take over and be like, I want to be social, and I want to go do things. But then I pay for it afterwards. And I think that that's a constant push/pull, like tug of war, essentially, of like, knowing that I want and need to be social, but also knowing that my socializing has significant limitations and significant ramifications. 
So, I know we've talked about this before, like, for both of us just sometimes discussing grief around socialization and connection, but it's challenging. And I try really hard to not be that person that's going to jump in, and interrupt, and with potential divergent flight of ideas, so I've really realized, like, we've both kind of said that most of our social connections and relationships are probably with other neurodivergent human beings who don't get it, and we're probably going to be thinking or doing the same things that we're doing in those moments too.
DR: MEGAN NEFF: Yeah, yeah. And I was just thinking of one of your major social outlets, which is soccer, which is another like parallel play experience.
PATRICK CASALE: Yeah, and I don't have to think about anything there. You know, you have a common goal. You might communicate, like, based about like, movement, and possession, and whatever. But you're not like having conversations during games, which is wonderful. And it's probably one of the only places my brain goes to, to just be at peace. And I think that's why this ever-expanding injury list that I continue to accrue as a 36-year-old is frustrating because I am starting to have this realization of like, this is not a forever thing. Like, you can't go play competitive soccer as you get older, and you keep getting injured, and all the things. 
But my fear and anticipatory grief is this is all I know, to socialize in a way where I feel centered, and at peace, and without restriction or overwhelm. I think that's scary in a way for me too. It's also, there's identity there, that's a very complicated conversation. But like, it's scary. Because, you know, people say, "What do you like to do?" I'm like, "I don't know, I've played soccer since I was five. I don't know what I like to do. Like, this is what I do every week." So, it's challenging.
DR: MEGAN NEFF: I mean, that's an interesting… I mean, there's so many podcasts we could do. But like the aging process, and being autistic ADHD of… and a lot of us have chronic pain. I've had chronic pain for the last 10 years. Thankfully, I've recently had some relief from that. But like, I lost so many outlets that were really good for me, I would say good for my ADHD, well, and my autism. I used to do hit training and I used to be really into fitness. And I've kind of lost all that skill in the last three years when my chronic pain got really bad. 
So, this idea of aging, but then also just navigating chronic medical conditions that often come with autism and ADHD, and how that makes a world that's already pretty small, like so much smaller when we lose access to those things. So, yeah, the idea of like, if you've been doing soccer since five, of course, that's part of your identity, how you connect socially, sounds like so many sources of meaning there, that's got to be daunting to think about. I would say you've got… you're 36, you're young in my book, probably got some time [CROSSTALK 00:27:44]-
PATRICK CASALE: Hopefully, yeah. It is daunting, you know because I've had some significant injuries like, I tore my left hip labrum last week, tore my right hip labrum five years ago. So, it is this constant chronic pain and chronic back issues, all this stuff, and starting to think like, because I need intensity and sensation seeking in my life, where to replace that with I think is also challenging. 
And I know for a lot of you listening, socializing, and just even thinking about joining a sports team or a group is so intimidating and can feel like that brings up an enormous amount of challenge and potential for just being alienated, or having a lot of struggle in that arena. 
So, I think that could definitely be an episode where we talk about how to connect, and ideas for socializing, and just even if it's minimal, but yeah, it's daunting, and what you don't want it to turn into, at least, well, I shouldn't say what you don't, that's a generalizing statement, what I don't want it to turn into is then becoming inactive because I need to be active because of how much, like, I was talking to you about proprioceptive, like, struggle I have, and like the intense overwhelm/like pressure feeling that I constantly have in my body that I need to ground or regulate. So, losing mobility is fucking scary.
DR: MEGAN NEFF: Yeah, it is and that's like, I mean, I know this isn't our substance use topic, but it connects. That's when I fell into an unhealthy relationship with alcohol was when I didn't have access to… I used to do a good hour, at least four times a day of like really pretty intense training and once I lost access to that, like the stimulus seeking, the endorphins and dopamine I got from that left me just, I think, really vulnerable to then look for liquid dopamine via alcohol. 
So, for me my chronic pain and then my disordered relationship to alcohol were so related, which then, of course, that can set off… and I see this a lot that, like, back when I worked in the hospital, like, you see… and they're logical. That's what's so hard to work with them as a provider, you see these, I'm drawing a circle with my hand for people who aren't watching on YouTube. You see these patterns that make so much sense of like something happens, chronic pain, you start self-coping with something like alcohol, which then exasperates mood, like, and then it's just you're off to the races running with a really unhealthy cycle. 
And again, for so many reasons, autistic ADHD people are way more vulnerable to falling into those cycles.
PATRICK CASALE: Yeah, yeah, absolutely. I think that for so many of us who are constantly struggling with so much emotional overwhelm, and sensory overload, and just existence, having that one thing to look forward to, if it's taken away, for whatever reason, it's so easy to fall into these pitfalls of despair, and hopelessness, and reliance on substance or process because you're trying so desperately to just feel better for 30 seconds of your day. And it's quite the challenge and paradox too when you start to think about Canadian side, Northern New York side come out, other alternatives because like, we're diverging so much in this episode. I love it. I think like-
DR: MEGAN NEFF: [INDISCERNIBLE 00:31:25]. It feels organic. I feel immersed in it.
PATRICK CASALE: Yeah, I think this is exactly what we were trying to highlight comparatively to group experience. I think about trying new hobbies at 36. It's not too old, like you just said, but I'm like, "What the fuck do I like? I don't even know what I like." 
And I think so many of us struggle to say like, these are the areas I feel really passionate about, or these are the hobbies that I truly enjoy, or the things that I look forward to. 
And for those of you who struggle to identify something, I don't think you're alone in that. I think it's really commonplace to say, I don't really know. And I also think that's why we get so connected into online relationships and online connections because it just creates a little bit less vulnerability when it comes to socializing as well.
DR: MEGAN NEFF: Absolutely, absolutely. I'm, like, going back to mid statement to respond to something you said earlier, not the end of your statement. But I really like this concept, so I'm going to share it. Something I talk about with folks a lot is cheap self-care or like Glennon Doyle, in one of her books talks about the easy button. But cheap self-care versus like, kind of really restorative self-care. And I think restorative self-care takes more time and energy. It's going on a hike in nature, it's joining a soccer team, which then there's all those, you know, social barriers. It's figuring out the hobbies you like. But it's the kind of self-care that doesn't just feel good in the moment but actually restores. Cheap self-care is in the moment it feels good, afterwards it takes a toll on you. 
And I think there's so many reasons that we're more vulnerable to gravitate toward cheap self-care. Yeah, yeah. And especially, for the things you mentioned of. It's hard to know hobbies in adulthood and connect with hobbies, yeah.
PATRICK CASALE: And connect with people.
DR: MEGAN NEFF: And connect with people, yeah. And I know you have a different experience around this than me, but I was raised in a fundamentalist evangelical tradition. That gave me a lot of both structured community, but also, structured meaning. I no longer identify as religious and I'm not a part of a religious community anymore. And I feel really good about that. 
But I miss the like, I think religious was designed by humans to create community. And I haven't found a good replacement yet. And I feel that, especially, as an autistic ADHD 39-year-old, of like, and my spouse and I talk about it a lot of because we were both raised fundamentalists, we're not raising our kids in a religious community thinking about where do we plug them into like, a source of meaning, a source of community? Because we don't have that.
PATRICK CASALE: Yeah, it's a really good point. And I think that structure is so crucial. And I know you want to and we will do an entire episode on religion, and autism, and how susceptible autistic people can be to become parts of really structured extreme religion too because of the structure, and the control, and the consistency, and the-
DR: MEGAN NEFF: It hits all the autistic boxes, like, absolutely.
PATRICK CASALE: All the autistic boxes. So, but yeah, you're right. I mean, where do you plug your kiddos in and where do you plug yourselves in into the community? And I had a conversation on my other podcast today, the All Things Private Practice Podcast, with a LMFT, a licensed family marriage and family therapist in North Carolina about creating anti-ableist practices. And she was just talking about, like, living in an ableist society. I mean, you're just going back to it over and over again. So, whatever practices we create, or, you know, try to incorporate society is inherently ableist. 
So, there are not a lot of great places that feel affirming, and connecting, and safe in a lot of ways. So, I think that becomes really complicated when you're trying to figure out like, where do I spend my time? Or where do I want to use my limited capacity and spoons, essentially, to say, like, if I'm going to do something, and I know it's going to take a toll, where's that going to be?
DR: MEGAN NEFF: Yeah, I mean, selective, I think we have to get really honed in on what our values are and be really selective. Okay, I realize every day things get compared to cancer a lot, and so, I don't necessarily… I have feelings about bringing this metaphor, but it's part of my context because I worked in oncology for a while. And when you are going through chemo or cancer treatment, you have to get so selective about your activities, partly because of how fatiguing it is, but also, you have this existential like, I don't know how much time I have left. 
So, that was something I would talk a lot about with my patients of like, what… and we kind of tease it out. I use the green light, yellow light, red light system for this of like, what cost you the most energy, and then what most aligns with your values. 
So, for example, like yellow light activity cost you some energy, but if it's like really highly aligns with your meaning, and purpose, and values like that's a good activity to prioritize. If it's yellow light, and like doesn't align properly, like that's probably something that can go. 
But I think thinking almost two tracks, I'm using so many hand motions, is how I talk, isn't how I've always talked, but if we have like two tracks in our mind, energy expenditure, and then meaning and purpose, and are kind of mapping our decisions out that way, I think it's something we have to do because we do have limited resources and like you're saying, so many of the actions we do, we then are confronted by an ableist system, or society, or community.
PATRICK CASALE: I really like that. I like that imagery too because I think that makes a lot of sense for those of you listening and for myself too, to think about when you're thinking about self-preservation, and intentionality, and energy conservation, and the tax, and toll that a lot of stuff takes on our systems to try to identify it in a way that is values-oriented, and acknowledging like if it is a high value, and I know it's going to take energy, it's probably worth it. But if it's not highly something, not highly, if it's not something I value highly, and if it's going to take x amount of energy, is it worth pursuing or engaging in? 
And the answer is probably no, unless you absolutely have to, and I'm being weary of time because I know what time it is, but we could diverge that conversation into something as well because some of these activities that are red lights, right? And they don't align are part of a lot of your day-to-day and daily necessities, like your job that you've [CROSSTALK 00:39:00] but you have to go to and survival. So, that's like such a big existential conversation of then what?
DR: MEGAN NEFF: It really is, it really is. So, yes, so many red light activities go to survival which is why when autistic people can make a career out of special interests, or ADHD people out of their passions, like, oh my gosh, do it so that it's at least a yellow light activity, your eight to five or whatever hours you work. 
The other thing that gets complex, I work with a lot of parents, and our values are in conflict with our children's values. So, for example, I really do not like holidays. I do not like family gatherings. I like dread them, typically, for like a month before and fantasize about getting sick so that I don't have to go. I'm so sorry my family if you're listening to this, I do love you, it's a terrible sensory.
PATRICK CASALE: [CROSSTALK 00:39:56]. And I feel the exact same way. So, if you're also listening, I love you, and I feel that way. That's real.
DR: MEGAN NEFF: But my kids, I want to give my kids the family experience, the holiday experience. So, there's plenty of times that I choose a red light activity for me because it's a high value, not necessarily for me. Like, I'd rather connect with my family one-on-one but because it's a high-value activity for my children, this is really hard for autistic parents. We're constantly, like, our needs, and then our needs of our children can live in conflict, and a lot of times we have to, and we should be choosing the needs of our children, absolutely. 
But it adds a whole other layer that's really complicated. Your look is just like, I'm so glad I don't have kids right now.
PATRICK CASALE: That's Megan reading me really well. Yeah, I'm not going to lie about that. I think that I would struggle. I have a hard enough time committing to like, things that I, "Know that I should commit to." Like, weddings, graduation parties, holidays, in general. Like, all the things. And for me, I do feel like those are red-light activities. But values coming into play, I know how important a lot of that stuff is for my wife. So, I often will say, and she acknowledges this, and she's listens to this podcast, I know she's going to hear this, but she understands the mental exhaustion and sensory overwhelm taxation that comes with committing to going to a family event. Her family is quite large. I mean, we're talking 50 to 60 people at most events, lovely family, just a lot of energy and a lot of absorption. So, I really have to almost mentally prepare myself for almost a month anytime I agree to go to any event or holiday gathering or anything like that. 
But again, red light activity, high-value system because I know how important it is for her. So, it is this like trade-off in a lot of ways in terms of how do you navigate the world in different neuro types in partnership, and I think that could also be a episode as well.
DR: MEGAN NEFF: Yeah, we should absolutely talk about couples because, in dyads, absolutely clashing sensory needs, clashing values comes up so much. Actually, I kind of have a fantasy, this would be a group, so it'd be messy. But my husband and I keep having like really interesting conversations. I keep thinking like, it would be so cool to have you on and hear his perspective. He's neurotypical, he's introverted, bless him. I don't think I could be with a extroverted neurotypical. But I thought it'd be really interesting for you to have your wife on and for me to have my husband on and talk about our marriages and hear their experiences of us. That might be too much of a group for us to navigate, but I think that could be really interesting.
PATRICK CASALE: I think that's a great idea. I think that would be very interesting indeed and give some perspective to our listeners because I think relationships for neurodivergent folks, it's such a, like you mentioned, having neurodiverse affirming partnership books that are not really neurodiverse affirming. And then, like, we really don't have a ton of resources out there to talk about partnerships with autistic allistic, autistic and ADHD, different neurotypes in general. I think it's really crucial to have these conversations about what the messaging is, the communication expectations, how you're receiving set information, how you best receive information. I mean, I think all of that is crucial. So, add it to the list.
DR: MEGAN NEFF: My list is getting really long.
PATRICK CASALE: I think that's a good thing. If we were both sitting here-
PATRICK CASALE: Megan, I don't think I have anything else to talk to you about. I think we could call this a done deal. But I do think this was a good conversation. And I like that you wanted to have this after last week's episode because I think this just highlights and showcases the differentiation in one-on-one versus group communication and socialization. So, hopefully, we were able to just kind of showcase that if you were listened to the episode that we just did with Thomas followed by this episode. In continuation, I think you'll see quite a difference in just energy and conversation. And not to say either conversation was bad. It was just very different types of conversation and connection. and energy being spent.
DR: MEGAN NEFF: Mm-hmm (affirmative) that was a great summary which tells me you're getting ready to say our awkward goodbye.
PATRICK CASALE: I am always just tracking time because I am not-
DR: MEGAN NEFF: I appreciate it.
PATRICK CASALE: … the one who like goes into things after this. So, yes, everyone, thank you so much for listening to the Divergent Conversations Podcast. New episodes are out every single week on all major platforms and YouTube. Follow us on Divergent Conversations on Instagram and we will see you next week.
DR: MEGAN NEFF: Goodbye. 


Divergent Conversations

Dr. Megan Neff and Patrick Casale are two neurodivergent therapists in a neurotypical world. During this podcast, they’ll talk about their own personal experiences as Autistic-ADHDers. They will reflect on their lived experience as AuDHD mental health professionals, and entrepreneurs, as well as offer clinical guidance, and support. Episodes will be conversational in nature, and they’ll interview other ND Folx to amplify the voices of other neurodivergent advocates and individuals as they share their authentic stories. New episodes will come out weekly, on all major platforms. Megan told Patrick, ”I’ll bring the chaos, You organize it.” This perfectly sums up their working relationship and friendship. Reflections of two neurodivergent clinicians. Raw, Vulnerable, Affirmative As Hell.

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