Episode 16: Autism and Healthcare: The Impact and Challenges of Self-Disclosure

Show Notes:

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:

1. Understand the complexities of disclosing autism diagnoses and the various implications it can have on one's life.
2. Understand the complications and stigma surrounding getting treatment with medication for neurodivergent individuals who are struggling with chronic health issues.
3. 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.

Resources:

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

 

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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: 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. 

PATRICK CASALE: True. 

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? 

PATRICK CASALE: Totally. 

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."

PATRICK CASALE: Right. 

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. 

MEGAN NEFF: Yeah. 

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. 

PATRICK CASALE: Absolutely.

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.

MEGAN NEFF: Me too.

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.