Episode 18: Autistic Unmasking: Redefining Identity and Authentic Self-Discovery

Show Notes:

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:

1. Understand what unmasking and redefining identity can look like, as well as how it can impact both internal and external experiences, preferences, and relationships.
2. 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.
3. 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.

Resources

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) 

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Transcript

PATRICK CASALE: Hey, everyone, you are listening to the Divergent Conversations Podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale.

MEGAN NEFF: And I'm Dr. Neff.

PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening.

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.

PATRICK CASALE: Yes.

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.

PATRICK CASALE: No.

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.

PATRICK CASALE: Sure.

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?

PATRICK CASALE: Yeah. 

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. 

MEGAN NEFF: Yeah.

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. 

PATRICK CASALE: Absolutely.

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?

MEGAN NEFF: Yeah. 

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.