Divergent Conversations

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

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7 days ago

Rejection sensitive dysphoria (RSD) impacts many aspects of your life and can be a driving force in how you manage relationships and internally process the world around you, so there are many nuances for it.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, answer some of the questions from listeners about RSD, including everything from self-shaming to the connection with other diagnoses.
Top 3 reasons to listen to the entire episode:
Understand what masked RSD looks like and the impact it has on shame and finding connection.
Identify what connections and impact RSD might have on conditions like PMDD, as well as how the experience of rejection can be viewed differently between ADHD and Autistic individuals.
Learn some strategies to help deal with the experience of RSD to create a better environment around you and pay attention to your core needs.
When it comes to RSD, everything goes back to connection. It’s both the thing that humans need and also something that can seem so difficult to attain and maintain. If you are struggling with complex and shifting intrusive narratives or internalized emotions that can last for years, try to focus on your core needs at the moment and check in with yourself so that you can offer yourself the opportunity to think more objectively and take action that is more likely to benefit you.
Resources plus Exclusive Coupon Code
Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Clinical Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-clinical 
Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Personal Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-bundle
Use Code: “DivergentConversationsListener” To get 20% off anything in the shop, including the RSD bundle. 
Dr. Neff's free blog posts on RSD: https://neurodivergentinsights.com/blog/category/Rejection+Sensitive+Dysphoria 
A Thanks to Our Sponsor, Tula Consulting!
✨ Tula Consulting:
We would love to thank Tula Consulting for sponsoring this episode.
Workplace communication can be messy. Considering the lens of neurodiversity can be helpful for understanding this. Maybe you found yourself frustratedly typing "per my last email" in an office communication, perplexed about how a colleague or client doesn't seem to understand your very clearly written email.
Consider this. Visual information processing isn't everyone's strength. Perhaps a quick call could make a world of difference. Or how about including a video or voice message with your email? And this technology exists! Simple steps like these can make your work environment more accessible and bring out the best in everyone.
Tula Consulting is on a mission to help organizations build more neuro-inclusive products and work environments. Tula does this by bringing curious minds to solve curious problems. Find out more by visiting tulaneurodiversity.org.
PATRICK CASALE: All right, so we are back with RSD part three, which will probably lead into an eventual RSD part four. But last week, we did not get to all of your questions, we kind of diverged, and we want to get to more of them today, especially, the ones that we think we have a lot to talk about. So, I think we want to start off with what can highly masked RSD look like?
MEGAN NEFF: Love that question, first off. So, last month when I was, like, deep in RSD mode, making the workbook, I created a grid, which… this is my like pattern finding, so I just want to tease out it's not like in the clinical research. But I made a grid of overlain RSD responses on top of kind of like the fight, flight, fawn, freeze, and talked about different responses. And we talked about this a little bit in our first episode. But like the fawn and the freeze response, I would say are masked RSD responses. And so this could show up as like perpetual people-pleasing, right? And perfectionism, those two. The myth being if I never make a mistake, or if I never make someone upset with me, then I would never have to experience this really painful thing.
And so a lot of masked RSD looks like really high-performing, high-achieving kind of busybodies ways of being in the world. And then I think when the RSD doesn't really get triggered, because none of us are perfect, and even if we're people pleasers, we're going to have miscommunications with people. I think that experience gets very internalized. So, instead of perhaps an emotional or angry outburst, what you're going to see is things like perhaps substance use, or a lot of negative self-talk, and rumination, and retreating, in some cases, self-harm, and other really like that…. And taking the pain internal. Like, also talked about as internalization, you're going to see a lot more of that. So, the people around you might not actually even know you're having an RSD trigger.
PATRICK CASALE: Yeah. And you know, those are the moments, right? Where we could use the language for a lot of self-destructive behavior going on behind the scenes to be able to keep up appearances, to be able to apply that social lubricant, like you've mentioned before, of this is how I fit into these spaces, this is how I show up, this is how I can people please, this is how I can socialize. And then that burnout just really takes over, right? Because there's going to be intensified depression, there's going to be intensified burnout, there's going to be intensified anxiety going on behind the scenes. And you, kind of, like, starting each day from a negative energy reserve and trying to get it back at that point in time where you're like, I'm operating at like negative percentage, and I'm going to put myself into the situation again, and again, and again.
MEGAN NEFF: Absolutely. And then we've also got to consider shame dynamics, which also perpetuate all those things you just mentioned of people with internalized RSD would have a lot of shame dynamics going on, which perpetuates a lot of like negative coping.
And here's the thing about shame, so shame theory is really interesting, actually. But one of the tricky things about shame is that sometimes there's this belief we fall into or trap. Like, if I can self-shame enough, I can protect from other shame, right? So, self shame it's the shame we give ourself. Other shame is the shame we experience from others.
So, people with very internalized RSD who are, you know, people pleasing, perfectionistic, tend to have really harsh inner critics that are very shame-based and have a really hard time diffusing and unhooking from these inner critics partly because the inner critic feels really protective. Because if that inner critic is, "I'm going to shame you, so you don't experience shame from another person." It's playing a protective role.
Now, we would argue it's not actually protecting or helping the person, right? But it feels like it's incredibly protective. Most of my life I've had a very, very harsh inner critic. And yeah, I couldn't unhook from it until the last few years because I was like, "No, this is protecting me." So, self shame protecting from other shame.
PATRICK CASALE: Yeah, shame is one of those emotional experiences that is probably one of the most painful things that happens to a human being, I think, that that shame spiral is so incredibly painful, destructive, torturous, hellacious. I mean, the criticism that ramps up the internal dialogue. I tend to go into more of like a shutdown space when I'm feeling really shameful. I noticed that comes up a lot when I feel like I can't do something that I feel like I should be able to easily do like screw something in in a way that looks even, or not cause a hole in the wall, or having to call a handy person after that because I've created said issue. That happens a lot. Then there's the social shame component where that really happens with the RSD triggers for me, where it really does create this almost like existential dread component to where you are really questioning everything and anything and almost losing sight of your sense of self in those moments too.
MEGAN NEFF: Oh, I think we absolutely lose sight of ourselves in shame spirals. Yeah, so that's kind of, I guess, clinical or lexiconic, if that's the word, definition of shame, just in case people aren't aware. So, guilt is the experience of like, I've done something bad and guilt is actually a good experience. Right? It's helpful feedback. For one, we're not living consistently with our values.
Shame, on the other hand, is I am bad, right? It's like I am the bad object, I am bad. And so that experience of I am bad. It's interesting, as we're talking about shame I'm like, how are we three episodes into RSD and we haven't talked about shame yet? Or even how did I write a workbook on RSD and not to talk about shame? Because I think, really what we're talking about it is when the shame is activated relationally because I think that is what happens with the RSD trigger is it's, I let this person down, or I like hard feedback, I am bad, right? And it's such a quick narrative we drop into, I am a bad person, which is the shame narrative.
PATRICK CASALE: For sure. So much of our sense of self, self-worth is connected too. And that narrative of I am bad, or I am unworthy, or I am not good enough, or all of the things that start surfacing, oh, man, I've seen so many, just situations where shame has created this spiraling sensation that has created an immense amount of destruction in people's lives in terms of both therapeutically and personally, and from my own perspective for myself. So, it is one of those emotions that is just really, really painful.
MEGAN NEFF: Yeah, absolutely.
PATRICK CASALE: I mean, we're talking about associations right now and we're talking about shame, we're talking about guilt, we're talking about sense of self that all gets triggered. We start to also see, and I just want to use a trigger warning, but we do start to see an intensified sense of suicidal ideation with a lot of this, too.
MEGAN NEFF: Yeah. Oh, I mean, yeah, shame and suicidality absolutely walk hand in hand. So, when you're doing a suicide assessment, there's questions you ask, and how a person answers some of those questions are indicative of how much risk they're in. And one of those questions that tells us this person is in a really high-risk bucket is do you believe or feel that the people in your life would be better off if you weren't here? And shame seduces us into that really painful narrative, shame and many other things, depression, but…
PATRICK CASALE: Yeah, I personally think that shame is one of the most damaging and destructive things that we experience. So, heaviness aside, techniques and strategies to work through that shameful experience when it's coming over you because there are ways to not let it engulf you and drown you in a way where, you know, it can be that devastating and destructive too.
MEGAN NEFF: Yeah, I mean, Brene Brown is really the queen when it comes to shame, right? Like, I love the idea that vulnerability is the anecdote or the cure to shame. And I think that's part of why when we have internalized RSD we're so prone to some of the like negative coping, because we're less likely to reach out and be like, "Hey, I'm having this experience right now." We probably feel shame about the experience, right? Like shame about being too sensitive, shame about our shame. So, reaching out becomes incredibly difficult. But if we can find someone, whether it's a therapist, or a friend, or a partner who gets it and where we can give that shame some breathing room, and by breathing room not like room to expand, but like room to dissipate, right? Where it doesn't live inside so intensely, that is one of the most powerful things we can do to disrupt a shame spiral is to connect, which again, like we're talking about relational shame, right? So, like belonging has been threatened. It makes sense that connection would be the anecdote to that.
PATRICK CASALE: And it also makes sense that it would be the last thing that you would reach for when you're feeling like, "Oh, I'm really feeling this massive amount of shame or rejection. I know I need connection, but I can't reach out for it, because that makes me feel too vulnerable, that makes me feel unsafe. I don't feel worthy of connection." Whatever the internal dialogue is, it makes it that much harder a lot of the time.
MEGAN NEFF: Yeah. Well, it's interesting, I'm thinking about the matrix and I'll, like, find a way to make a one page infographic of this that I'm referring to, and we can attach it, because the other parts of the matrix are fight, flee. And I'm just seeing how all of these reactions, all of these stress reactions to RSD move us away from what we need, they move us away from connection. So, if we're fleeing, obviously, that's going to move us away from connection in the in the fight. That's where I would say projection comes online, and where the shame is so intolerable to feel it gets projected onto other people, and then we lead with anger. That's a way of pushing people away.
So, whether it's like we're retreating in our pain internally, we're fleeing, or we're projecting all of these move us away from what we need, which is connection. And so, I think that's a lot of work living and working with RSD is figure out like, these are going to be my, like, automatic stress state responses. How do I override that to actually address a coordinate here and move toward that?
PATRICK CASALE: Yeah, I think that's a great point. And if we can anchor into the idea that foundationally at the root of this is the desire and necessity to have connection yet the fearfulness or inability to feel like you can access it, and just constantly trying to anchor in, and remember, like, connection is at the root of this, right? Like, as humans, relational beings, regardless of we're introverted, extroverted, does not matter, we still need connection in some capacity. That's something that we absolutely need and it's a major… What am I going to say? It's majorly a part of our makeup. And when we don't have access, or we feel like it's not possible, or we don't have those people in our lives we can turn to, then this can really start to spiral out of control, I think, and this is where we see this really get to that negatively impactful place, and that really destructive place too. I'm not finding my words appropriately right now, but I just want to emphasize the importance of connection.
MEGAN NEFF: I feel like I was tracking. I didn't notice that. I feel like I could linger in this conversation if this feels poignant and important. I'm also aware we talked about trying to get through questions in this episode.
PATRICK CASALE: Oh, yeah. We did [CROSSTALK 00:14:08]-
MEGAN NEFF: Should we move on to the next one?
PATRICK CASALE: Let's put in that one question because I think that the topic of shame, in general, could be an entire series.
MEGAN NEFF: Let's do an episode on neurodivergent shame because shame is very much part of the experience. It's often tied to, like, of course, past relational experiences we've had, internalized ableism, and then a lot of us have co-occurring trauma and trauma and shame are also very, like part of what's traumatizing about trauma is the shattering of self that often happens in trauma. So, yeah, let's do a shame episode or episodes, because it's a big topic.
PATRICK CASALE: Yeah, so for everyone listening, if shame is important, it feels like it's a part of your experience, which I assume for most of you it is, including ourselves, we will do more episodes on shame and specifically focused on that topic.
But we do have other questions that we want to get to, if we want to make it an Answer Your Questions episode. So, one question was RSD linkage to PMDD. So, you wanted to take that one?
MEGAN NEFF: Yeah, I mean, I think we should do an episode on PMDD, and just like neurodivergence and hormones at some point. Anyways, but PMDD is essentially, oh my gosh, what does it technically stand for?
PATRICK CASALE: Post-menopausal dysphoric disorder?
MEGAN NEFF: Good job. Yeah, I've been referring it to PMDD so long. I was like, I'm not going to get those letters right. Thank you. So, it's kind of-
PATRICK CASALE: [CROSSTALK 00:15:47] also dysphoric disorder.
MEGAN NEFF: I mean, it's like PMS on steroids, essentially.
PATRICK CASALE: Yeah, it's called that.
MEGAN NEFF: So, basically, yeah, PMS on steroids, the clinical definition, PMS on steroids.
PATRICK CASALE: Going into the DSM 6 soon, premenstrual dysphoric disorder?
MEGAN NEFF: Yeah. And it's very connected to like how hormones are shifting as part of this cycle. And both autistic and ADHD people who have a estrogen cycle, would that be the way to say it? That experience a cycle are much more vulnerable to do both PMS and PMDD.
And one of the things about PMDD… PMDD can be really intense. Like, I've definitely seen cases where someone baseline mood is actually pretty okay but will experience like, acute suicidality in that like week or that period. Like, it can be that intense. It's not that intense for everyone, but for some people, it is that intense of a mood shift.
So, absolutely, like, I describe it as like just paper thin, like in the sense of like everything's getting in, in that period. So, emotions are going to be heightened. So, of course, RSD, if someone has a baseline RSD, that's also going to be heightened because RSD is connected to emotion regulation. So, with PMDD, emotional regulation becomes a lot harder. And we tend to feel things more intensely.
So, yeah, I hadn't actually thought about that, but I love that of that thought experiment of what RSD looks like in that window of time. And I think that's actually really helpful to know. Because it's not going to make it go away, but being able to say like I know RSD triggers are going to be big this week, I'm probably going to perceive rejection where it's not, I'm going to feel it deeply. It doesn't mean it's true. Like, being able to do that self-talk. Like, I don't know whether I have PMDD. But I definitely have like hormonal shifts. I'll tell myself typically that week, "Don't trust your mind. You're not allowed to think about the future, you're not allowed to evaluate relationships." Like, I have like hard rules about what my mind is allowed to do that week.
And it's not like a harsh rule. It's like a kind, like, parental figure come in and be like, "You know what? Your mind's not up to any good this week." So, there's some things we're just not going to think about because it's not going to be helpful. Here's what we're going to do instead.
PATRICK CASALE: I love that.
MEGAN NEFF: Yeah, but yeah. Sorry, go ahead.
PATRICK CASALE: No, that's great. I mean, man, you can make worksheets, or like affirmations, or guidelines for people around like that sort of structuring in terms of, I'm not going to trust my mind this week. Like, these are the things that you know to be true, these are the things that we're not going to put any energy into. Like, that makes so much sense. Okay, add another episode to the list of neurodivergence and hormones.
So, moving on through the questions, these are leading to episodes which we love. So, thank you for submitting these. Okay. Do stimulants cure RSD? That's a pretty basic response and we're going to say no to that. There are stimulant medications, right? Megan talked about the psychopharmacological perspective in episode one of things that do help in some capacities. But if we're going to just make a blanket statement that say stimulants do not just cure or help RSD in that capacity. Okay, we did highly masked RSD. What else did we say we were going to talk about?
MEGAN NEFF: I think autistic versus ADHD, and that was a question that came in. So, you'll hear autistic people and ADHD people talk about RSD. Like, there's a lot of resources out for both. Now, I actually didn't realize this till I started doing the deep dive about… as soon as questions come up, like is RSD specific to ADHD?
So, first of all, I see a lot of like monopolizing of experiences. Like, I see a lot of autistic people who are like only autistic people have sensory sensitivities, which isn't true. So, I just want to caveat that. Like, anyone can be high on the rejection sensitivity spectrum, right? This is a spectrum of humanity.
RSD as a term, as a concept, as something we talk about is specific to the ADHD literature, in the sense that it's come out of ADHD literature, you know, the projections are like, I don't know how scientific this is, but according to Dr. Dotson, like 99% of ADHDers experience this. Like it's a very core component of ADHD.
Other people might be very high in the rejection sensitivity spectrum for different reasons. You know, attachment style, trauma, autistic. Like being misperceived, internalized ableism.
Is it RSD if a person's autistic and not ADHD? I don't know. Like, I don't know if we would apply that term. We could say there might be really high in the rejection sensitivity. I have noticed when working with autistic-only populations, it's like hit or miss. Like, maybe they have it, maybe they don't. But I also see people where it's like, I don't really care what people think about me. Like, that's also present.
So, autistic people do experience victimization, and like social bullying, and marginalization, they're neuro minority. So, I think there's a lot of reasons why autistic people would also be high on rejection sensitivity. And then we know a lot of autistic people who are also ADHD. So, I think I didn't provide clarity, I just explained how muddy the waters is.
PATRICK CASALE: That's okay. Sometimes that is the answer, though, how muddy the waters are, because… And I'm also thinking as you're talking, right? Like, we know so many people are undiagnosed either autistic or ADHD, and how much gets missed. So, I'm just wondering just how many people out there who identify as ADHD, who are also autistic, but unknown, or undiagnosed, and vice versa, and how so much of that also plays a role into the prevalence of RSD showing up as well?
MEGAN NEFF: Absolutely, absolutely. Yeah. I will say, oh, this was after you left, you had to dip out for a meeting, when we interviewed Amanda for Ask An Autistic I asked about this. And at first, it was kind of like, yeah, maybe some RSD. And then we talked about like, okay, what happens when… and because we're both on social media, why I asked explicitly about that, she's like, "Yeah, these narratives come on and then, you know, I've usually worked through it in like five or 10 minutes."
And I was like, "Five or 10 minutes?" Like, I still get intrusive thoughts about experiences, or even like, this is embarrassing to admit, like comments that I got two years ago, where like, if I embarrassed myself, or did something I'm not proud of, I still get intrusive memories about that like 20 years later. That's a pretty different experience than being able to move through something fairly quickly. And I know Amanda's just one autistic person.
But that was a really interesting moment in our conversation, when, like, yes, painful, yes, hard. But the ability to have the tools to work through it without it like bouncing back for me, I work through it, but it keeps bouncing back. And then I have to work through it again. And that's part of that intrusive kind of overtaking.
PATRICK CASALE: That's a great point because that actually makes me remember what I was saying for my group practice. So, shout out to Dr. Bennett Harris who's going to rub that in my face that I named him on this podcast. But saying like, these things linger for years sometimes, right? And that's something we haven't addressed yet, is the length of time. I know you've addressed it in your workbook, but we haven't addressed on air that this can bounce back, like you just mentioned for years. And it can be something where you can look at it when you're in a healthy like cognitive space where you're like, "Okay, this comment, I've worked through it." But then maybe something thematic, or something similar comes into play, and it hits you, or it impacts you in a way that you didn't expect. And all of a sudden you're right back to that comment from two and a half years ago.
MEGAN NEFF: Yeah, yeah absolutely. Yeah, I'm glad we're talking about that because that's a part of RSD that like, A, it's just confusing and B, it's really stressful to just like be going throughout your day and like all of a sudden intrusive, like, embarrassing or shameful memory pops up and you're like back in it. Like, yeah.
Okay, this is kind of a silly example. But we were filming an episode, and we were talking about how we need to do RSD, and we were like speaking of RSD, we just got our first like one star review. And in the moment I was like, you know, like talking through like, okay, that makes sense.
But then that comment kept popping in my head throughout the day. And sometimes when I think about this podcast, like that just pops back up. And it feels so silly. And then the secondary narrative of like, "Megan Anna, why do you care about this?" Right?
So, it's not just the interest of memory, there's often a second narrative that comes on up like, why are you still holding on to this? Especially, if it's something like that or like, I feel like that's petty. And I should be able to just release it, then there's a second narrative of like, why are you still thinking about this? Why can't you release it? Why can't you get over it?
PATRICK CASALE: Let's talk about the secondary narrative, because I think that's so important that you just named that. One, I'm sorry for bringing that up on air, won't ever do that again.
MEGAN NEFF: No, I'm glad you did. It's a good live example. And it's like, yeah.
PATRICK CASALE: I think we're onto that ship forever. I cannot tell you how often I check All Things Private Practice and Divergent Conversations Apple Podcast reviews. Why am I doing this to myself? Like, why am I going on there knowing that there could, eventually, be a one star review? Like, I should be able to let that go and then that will destroy me for days. I don't know why. That's self-inflicted, it's not healthy.
The secondary narrative, that process, right? Of, okay, this experience, this reaction is creating this sensation, it's creating RSD, it's creating distress, then the secondary narrative that's trying to rationalize said reaction that is exhausting to bounce back and forth between narrative one and two over and over and over and over and over again.
MEGAN NEFF: Yes, and one thing I've observed, because the neurodivergent brain as well, so divergent is that we often have, like, overlapping narratives. I'm doing this with my hands of like, we'll have an experience, and then we'll have a narrative about it, and then we'll have a narrative about the narrative.
And so one thing I've noticed, and I've started to be more careful with this, so I don't do too much CBT, I do have more of a mindfulness approach to like, let's start noticing your thoughts. What I've noticed, and I think, especially, with neurodivergent people, sometimes once they started noticing their thoughts, they got worse.
So, like, there's an experience of this. So, the next week came back and like so much worse. So, it's like, okay, let's unpack what's happening here. And it was the secondary narratives. It's now that I'm observing my thoughts, I'm having so much judgments, and evaluations, and feelings about those thoughts. And so then you have to teach how to become mindful of the secondary narrative, right?
MEGAN NEFF: Yeah, yeah. RSD about the RSD. And invalidation, right? Like, I think we're really good at invalidating ourselves in those narratives. Yeah, yeah.
PATRICK CASALE: I'm going to try not to diverge too much, because we said we were going to stay on course, which we should always know it's never going to happen. I'm thinking about like, secondary narratives, and how often I have to verbally process them out loud. Like, I will talk myself through the secondary narratives a lot of the time, and how often my wife looks at me in the house. And she's like, "Who the fuck are you talking to?" And I'm like, "I am talking through like my internalized experience and my thoughts that are happening right now and processing them out loud to try to pick them apart to decide what feels rational versus irrational and what feels like there's a linkage to." And she's like, "Is this happening in your brain all the time?" And I was like, "This is happening in my brain all the time."
MEGAN NEFF: Yeah, yeah, absolutely. It's weird to me that it's not happening for everyone inside their brain all the time. Like-
PATRICK CASALE: Like, this isn't taking up all this mental real estate 24/7 for you? People were like, "What?" She looked at me like, "How do you sleep?" And I'm like, "Well, you know the answer to that, not well." Oh, my God.
MEGAN NEFF: Yeah, we have busy minds. And so I think learning how to work with our mind it becomes really important.
PATRICK CASALE: Sometimes that is that mindfulness. Like, for me when I hear the word mindfulness, right? And I'm really going to diverge is I hate that word.
MEGAN NEFF: I do too. I do too.
PATRICK CASALE: Because I associate it with like being still-
MEGAN NEFF: Meditation.
MEGAN NEFF: Come to your mind.
PATRICK CASALE: Exactly. Yeah, that's not going to happen.
PATRICK CASALE: But I would much rather apply mindfulness in the way that you do, which I think you said was like, I cannot remember the term that you [CROSSTALK 00:29:38]-
MEGAN NEFF: Oh, mindfulness on the go. And I searched it up after that. And there actually is a book that was written a long time ago with that same term. So, I did not come up with the term. I mean…
PATRICK CASALE: But I like what you mentioned, right? Like, you're being mindful about the temperature of your smoothie in the morning, or your water, or you're being mindful about the fact that your mind is diverging into a million different directions. And instead of like saying, "Oh my God, my mind is diverging into a million different directions. I need to shut it down. There's something wrong, I can't do it." I'd rather say my mind is diverging into a million different directions. And I'm just being mindful of that.
MEGAN NEFF: Yeah, yeah. So, when I think about mindfulness, like I like the imagery of tagging. Like, I feel like a lot of what I'm doing is tagging, like, oh, that's what that is, that's what that is. So, it's like naming, tagging, and…
PATRICK CASALE: List making.
MEGAN NEFF: Yeah, what did you say?
MEGAN NEFF: List making. Well, no, I think I would think of list making as more like you're in the content. And when I think about mindful tagging, it's more of an observational process. That's a really subtle distinction. And that's part of it.
So, I like the imagery of like, observing mind, evaluative mind, and what mindfulness, like it's not an activity, it's a way of being, it's a way of being with self. So, whenever we're in observing mind, like that observer who's not judging, not evaluating, but like tagging, like you're having this experience, this is the script that's happening, you're in observing mind. And you can do that while being busy. Like, you can do that. You don't have to sit and listen to a 10-minute meditation and try to empty your mind.
For me, when I tried to do those exercises, then all of the evaluation scripts like I can't do this, this is so hard for me, my body physically feels uncomfortable.
PATRICK CASALE: Yep. And that can even lend itself and I'm going to get us back on track in a second. But that can even lend itself to being dismissed in the medical and mental health care system where medical professionals are like, "Have you tried mindfulness for sleep?" And you're like, "The fuck? Yes, of course, I have tried mindfulness for sleep. I am neurodivergent. Do you understand how that mean? How the brain works?" Yes, I have tried it.
Have I ever tried to like tag and be mindful of a million different thoughts simultaneously while looping them all together? Like, that's every night of my experience? Of course, I've tried that. Yeah, anyway, I don't want to diverge that way. So, you wanted to also get to the topic of…
MEGAN NEFF: Oh, yes, yeah.
PATRICK CASALE: … slash [CROSSTALK 00:32:20]…
MEGAN NEFF: So, we got a couple of questions about like, how do you tease out RSD from trauma, from attachment stuff? Which is great question. So, first, I think whenever we get the, like, tease out questions, I want to first ask, like, for what cause? Or for what purpose are we teasing this out? If it's like, I don't know what the diagnosis is, if you're a clinician, that's going to be a very different conversation. And if it's like, this is a known neurodivergent person.
So, I mean, it's physiologically the same things happening, right? Like, the sympathetic nervous system or shut down mode, like it's been activated, a stress state has been activated. We're responding to something relational like, so teasing out like what are the triggers? So, in the context of trauma, and well, that also gets complicated over time about PTSD with a specific trauma, we're talking about complex trauma? But like, what are the triggers around it?
Same thing with attachment. But honestly, I have a hard time teasing out like, what is anxious attachment and what is RSD, because if criticism, or feedback, or someone being disappointed in you, that's going to be an attachment injury. So, in attachment theory, we talked about attachment injuries, and that's going to activate stuff. So, yeah, again, muddy waters.
When it's the neurodivergent person who also has trauma, also has insecure attachment, that point it's like a soup, right? Like all of these things are intersecting. And which means, also, like on one hand that could feel disempowering, but on the other hand, it means like, as we heal from trauma, as we move toward more secure attachment, everything's going to get better, right? The whole system's going to get better. Okay, I feel like I've talked or rambled. Let's stop for now.
PATRICK CASALE: When you say it's, you know, muddy waters and like a soup, I think that's, again, I know so many of you want clarity on this. And I think sometimes there's not a lot of clarity to be given, because so many [CROSSTALK 00:34:44]-
MEGAN NEFF: …things intersect. And these are constructs, right? Like attachment theory. Like, these are constructs we've put on top of experiences.
MEGAN NEFF: But they're limited.
MEGAN NEFF: Now, it's totally up to you.
PATRICK CASALE: No, that's fine. We're both having thoughts at the same time. But the one takeaway when we're talking about attachment trauma, if we're trying to like differentiate, if we're trying to… okay, if we want to put RSD over here versus what's anxious versus what's avoidant versus what's complex PTSD? Gets really murky. But what is at the foundational level of all of these things? It's something we've talked about several times already in the last two hours, connection. Attachment trauma is about connection. RSD, ultimately, is about connection, complex PTSD, there's going to be layers of unsafe or unhealthy connection. And I think that so often we're missing this mark of like, we want so badly to understand what's happening to us or our own experiences, right? But at the end of the day, foundationally, at our core, it comes back to connection, and our desire to have it, and our inability sometimes to receive it, or maintain it. And I think that that impacts everything that we're talking about.
MEGAN NEFF: I love that of like, get back to the basics. And I think, especially, with autistic people, I can see this of like, we want to know precisely what's happening, right? So, like, what's the RSD? What's the trauma? What's this?
I don't know how helpful that conversation is, but I do know that what's helpful is getting down to the core need. Like, okay, this is a painful moment, what do I need in this moment? And getting back to that like? And yeah, typically, a lot of these things are connection, belonging, these are the things that are being threatened, and this is what I need right now. So, getting back to the basics in those moments, I think, is ultimately, typically, going to be more helpful than like, is this attachment is this? It's like it's all the things, right? It's all the things intersecting in a difficult moment.
PATRICK CASALE: Exactly. And what usefulness does it serve if we're just throwing label on top of label on top of label, because like, there's such a bad negative stereotype with avoidant attachment as there is, and then you throw, you know, the label of autism or neurodivergence, and people are going to have their own experiences around this.
And I think, if we just circle back to connectivity, and just the ability to have relationships, and what are we missing? What are we feeling like we're really having painful experiences around? The attachment label doesn't matter as much. Like, it just gets so complicated and convoluted then, or trying to, like, parse apart, you know, things that are really deeply connected and interwoven too, and it's really hard sometimes to get a sense of like, where does this go? And where do I place this?
MEGAN NEFF: Yeah, yeah, absolutely. And I think, partly, like, we have to get into how is the label being used? You know, I take a very constructivistic approach to language in general. Like, I prefer language that is most helpful. So, for some person, like talking about like, oh, my attachment system is activated right now. If that's the most helpful for you attuning to yourself, and validating your experience, use that language, right? If it's more helpful to be like, "Oh, my RSD is activated right now." Use that language, use that frame.
But how these labels are being used, I realized, like for myself, I often use these labels in that mindful tagging way that we were just talking about of like, "Oh, this is happening for me right now." But I'm very aware that those labels could be used and have a very different experience for someone, right? It could be like, a shame base. Like, this thing is activated right now and I'm so like, mad about it and mad at myself. Or it could be used as a distancing, right? Distancing from the core wound, distancing from the core need by saying, "Oh, that's RSD." And then, like, just leaving it at that. It could be a way to emotionally distance from the pain.
So, as much as the label is important, I think, more so like, how is that label being used? What's the internal experience of it?
PATRICK CASALE: I just lost your sound for a second.
PATRICK CASALE: You're back, okay. I heard how is this label being used? How is this label being experienced? Is that it?
MEGAN NEFF: Yes. And then I was done. So, I just feel like I ended the sentence.
PATRICK CASALE: Maybe that was it. But yeah, I agree 100%. And I think if we can kind of incorporate some of those techniques, and strategies, and just ways of thinking about this it could be a little bit less painful. And it's given me a lot of ideas right now, which is not where I want my brain to be going, and to diverging into all these ideas because I've got to get into other meetings. But I have so many ideas for episodes based off of these last couple of conversations.
And again, I just want to highlight how helpful these Ask The Audience sessions can be, because, one, we want your feedback. Those of you who are listening, we appreciate all of you. That feedback has been very helpful, constructive, positive, and we do not take it for granted. And we want to answer these questions because we know a lot of this experience is feeling confused, feeling overwhelmed, feeling [INDISCERNIBLE 00:40:26], feeling disconnected, feeling alone, and we want to help maybe make this a little bit more of a human experience for all of you involved. Megan's just [INDISCERNIBLE 00:40:42].
MEGAN NEFF: I'm feeling like that was the conclusion, episodes are out every Friday.
PATRICK CASALE: Yeah, episodes are out every Friday on all major platforms and YouTube. And goodbye.
MEGAN NEFF: It's like a compulsion now, Patrick. I like have to make it awkward at the end.
PATRICK CASALE: I mean, you're doing a good job.
MEGAN NEFF: I honestly I'm not trying. It's just like, okay, that was the summary. You look at me. I don't know what to add. I feel like if I add anything I'll have ruined yourself your beautiful summary. My voice is now going out.
MEGAN NEFF: Goodbyes are rough.
PATRICK CASALE: All right, goodbyes are rough. Goodbye.

Friday Nov 17, 2023

If you struggle with rejection sensitive dysphoria (RSD), navigating social media can be complicated. 
Social media is both a place where many neurodivergent individuals are able to find connection and be seen, but it can also be a place where impulsivity and reactiveness can run rampant, both on the giving and receiving end of online conversations and posts.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, delve deep into the complex relationship between social media, rejection sensitive dysphoria (RSD), setting boundaries, and mental well-being.
Top 3 reasons to listen to the entire episode:
Understand how to address RSD burnout with social media, as well as the important role that boundary-setting plays in helping you show up online with reduced intensity of RSD.
Hear about some ways that Autistic individuals may experience social media differently, and even more positively, than allistic people and neurotypicals.
Learn some RSD-symptom-reducing strategies to check yourself and check in with others when you are struggling with fear of being misunderstood.
As you navigate the complexities of social media, remember to check in with yourself and establish your boundaries for the way you interact with others online and who you allow into your space. Don’t be afraid to unfollow someone or snooze posts from a friend. Make it your priority to protect your mental well-being and engage in a healthier way.
Resources plus Exclusive Coupon Code
Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Clinical Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-clinical 
Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Personal Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-bundle
Use Code: “DivergentConversationsListener” To get 20% off anything in the shop, including the RSD bundle. 
Dr. Neff's free blog posts on RSD: https://neurodivergentinsights.com/blog/category/Rejection+Sensitive+Dysphoria 
The EFT attachment infinity loop can be downloaded here: https://neurodivergentinsights.com/couples-resources
A Thanks to Our Sponsor, Tula Consulting!
✨ Tula Consulting:
We would love to thank Tula Consulting for sponsoring this episode.
Workplace communication can be messy. Considering the lens of neurodiversity can be helpful for understanding this. Maybe you found yourself frustratedly typing "per my last email" in an office communication, perplexed about how a colleague or client doesn't seem to understand your very clearly written email.
Consider this. Visual information processing isn't everyone's strength. Perhaps a quick call could make a world of difference. Or how about including a video or voice message with your email? And this technology exists! Simple steps like these can make your work environment more accessible and bring out the best in everyone.
Tula Consulting is on a mission to help organizations build more neuro-inclusive products and work environments. Tula does this by bringing curious minds to solve curious problems. Find out more by visiting tulaneurodiversity.org.
PATRICK CASALE: All right. So, last week we talked about RSD from a very basic foundational level, and we asked for questions, and we got a ton. And we want to address the ones that we can today. So, Megan and I are going to sort through these, and we have some that we definitely want to do deeper dives on. We appreciate everyone submitting them. And it's definitely a really important topic. And I think one that we could have a lot of conversation around.
MEGAN NEFF: Absolutely. Just side note, like, I'm really liking this Q&A format podcasts. We should do more of them. It gives us structure, which is actually kind of nice for a change.
PATRICK CASALE: Yeah, I think when we introduce, like, topics, and then we can always ask for questions for follow-up so that we have episode ideas and keep the audience engaged too.
MEGAN NEFF: Yeah, structured chaos. Okay.
PATRICK CASALE: Yes [INDISCERNIBLE 00:00:56] when we started this.
MEGAN NEFF: Should we start with some of the easier questions or dive into the hard ones?
PATRICK CASALE: Oh, Megan. Where's my brain out today? Everywhere.
MEGAN NEFF: I need a slow warm-up, my brain is still warming up. Let's start with some of the more concrete or easier-to-answer questions.
PATRICK CASALE: So, I'm looking at the questions that we have. Where would you like to start? I think maybe one is how to open social media, again, when scared of RSD hangover days.
MEGAN NEFF: Oh, yeah.
PATRICK CASALE: I think this is a good question, because we spoke a lot about, like, entrepreneurial RSD. But this is more specifically for anyone who is just experiencing RSD and having to show up on social media.
MEGAN NEFF: Absolutely, yeah. I think social media for probably anyone with RSD, if you're at all posting or commenting is going to be a really anxiety inducing experience open. I just watched like a one hour kind of training on this from Lionni Dawson. They are a autistic ADHD entrepreneur in Australia. And, first of all, just if you're an entrepreneur, you should check out their work because it's fantastic. But they had a one hour kind of training explicitly on kind of rejection, social media. And there was some other entrepreneur stuff, but there's a lot of stuff that could be applied.
So, like one of thing she said that I love was, I think there's a visual, like, a bird in nature. And she was like, "You know, if I'm walking through nature, like, a bird doesn't just yell at me like, 'You asshole.' But on social media, right? Like…" Or not a bird, okay, I'm totally mixing visuals. She's like a person or bird, I don't know, people in real life don't just yell at you you're an asshole. But that sort of interaction, like, does happen in social media spaces.
So, I think, one, just having this lens of the kinds of conversation that tend to happen in digital spaces when, you know, we're more removed from the humanity of the other, it does more easily take on kind of a toxic bend. So, I think just having that framework around our interaction with social media and digital spaces, in general, is really important.
And then there's kind of a criteria she walks through of like, who is this coming from? Right? Is this like, an asshole on the internet who's just trolling? Or is this a friend and you're like, you want to consider it? But actually having a system for like this feedback I'm getting is hard. Like, who is this coming from? And considering that.
So, I would just say, whatever your system is having some sort of process around how you engage social media, and contextualizing it, contextualizing these interactions that are happening, and then to figuring out like, is this how you want to be interacting socially with people?
I encourage people to do like a week break and see what their mental real estate is like. For some of us as neurodivergent people, like we form some of our deepest connections digitally. But I do think we need to pay attention to how we're doing that, what spaces feel generative, what spaces don't. I realize this is way more like bird's eye view than like what to actually do when you're opening the app. This is more kind of meta how to have a relationship with social media in a healthy way. But I think when you have RSD, you just have to be thinking about these things more intentionally.
PATRICK CASALE: Yeah, I think that sounds like good advice. And I'm almost thinking about, like, taking a step back and like putting different responses from different people in different buckets. Like, waiting the responses more or less because you're right, if you're walking down the street, someone is probably not going to scream that at you. I mean, most likely. But when you can type whatever you want, and just put it out into the world without really any repercussions a lot of the time. It really does create this social dynamic where it's quite polarizing and society is quite torn in so many directions. So, the likelihood of being trolled or just having people disagree with you, or have to jump in just to say something because they want to say something that can certainly lead to a response, and a shutdown, and more anxiety, and overwhelm. So, I think if you're able to, like you said, step back, contextualize, take a look at who you want to be having conversation and relationship with.
And I agree with you wholeheartedly. Like, some of my deepest formed connections are via the internet and social media, some of whom I've never met in person like [CROSSTALK 00:05:49]-
MEGAN NEFF: Yeah, like you and I wouldn't exist, this podcast wouldn't exist without social media. Like, I think I literally met you, I saw your podcasts with Joel. And I think it was in a Facebook group, and then we connected on Instagram. Like you and I would not know each other, this would not exist without social media, yeah.
PATRICK CASALE: No, and I consider you one of my closest friends that is in my circle of people right now. But I wonder if we could ever get into, like, the existentialism and the layers that come with having to create like more of a callous skin or approach to social media. But I also acknowledge that social media plays a major factor in my business, so I know that I have to like sift through and experience some rejection at times too. And I've learned to deal with that before the common human, who's not a therapist, who's not entrepreneurial, who's not on social media for business, but is just on there for connection, it can feel like there is an inability to create community if it feels like there's just constantly rejection every time you open up Facebook, or Instagram, or whatever platform you like to be on.
MEGAN NEFF: Absolutely, absolutely. Okay, I'm going to give a few more anchoring concepts. There's this idea from social psychology called upward comparison. This sounds really twisted. Every time I say it, I can't say it with a straight face. But what the research shows is we tend to do best when we do more downward comparison than upward comparison. This is why like, it sounds so like cringy of like, intentionally compare yourself to people who are doing less well than you. I don't love that as a like intervention strategy or practice. But I do think it's important to be aware of how much of your energy is spent in upward comparison. And social media is built for a lot of upward comparison, right? If people are posting like the highlights of their life, and you're comparing the, like, mundane moments to that, like we could talk about like how many likes, how many comments, but even just the experience, as in other people's highlights, and then filling in… Like your mind fills in the stories, that can also create or trigger RSD of just like, "Look at what all these other people are doing and are able to do."
So, I think being aware of social comparison and upward comparison when engaging with social media is really important. The other thing, you know, boundaries, I think, become really important. What are your boundaries? Getting clear around that. When you post things, do you have comments on? Do you not? Do you get into hard conversations in social media spaces? Or do you not? Do you say, "Hey, this would be better in an email or this would be better in a phone call." So figuring out what your boundaries are.
And then the third thing, impulsivity, right? A lot of us have impulsivity. Like, there's like a breathalyzer for phones where, like, some people will do… Have you heard of this where like, you have to breathe into your phone to be not drunk to-
PATRICK CASALE: Like, there's [INDISCERNIBLE 00:09:02] you know, impulsively send drunk text messages and things that get them into trouble the next day. So, yeah.
MEGAN NEFF: I feel like we need like a filter like that for like impulsivity, of like, how am I going to feel about this comment in 30 minutes tomorrow, especially if we're in a heated dialogue or if there's a lot going on socio-politically? Just knowing that we're more likely to have those impulsive comments come out, and then to consider your future self, which again, is going to take, I think, intentional practice for us because it's not something a lot of us do naturally of like, how am I going to feel about this comment tomorrow? How am I going to feel about people's feedback to this if I'm putting something out there that is, you know, one of those like hot ideas.
PATRICK CASALE: I'm glad you named that because I actually found myself in that situation within my Facebook group last week, and I'm not going to go into the dynamics because the issues at play are just polarizing on all sides, and there's trauma and damage being done all around worldwide. So, I'm just alluding to something without alluding to it. And I had to step back and pause my Facebook group for two and a half days because I was mentally unwell. And I was struggling to keep up with comments, and like moderate, ensure that everyone was talking to each other respectfully as adults and as therapists, which doesn't seem like something I should have to do. But I also then realized I'm like, "Okay, this group is a purpose for like, how do we help each other through entrepreneurial journeys, and it's turning into something that I don't want it to be. How do we address all things? Right? And also, how do we show up authentically? How do we stand by our values?" So, I decided I will turn comments on limited comments. So, someone can only respond every five minutes, right? Including myself, which means that you have to take [CROSSTALK 00:10:53]-
MEGAN NEFF: I love that. Yeah, you have to…Yes, yes. Yeah, because that like posting in a reactive space, that's where a lot of these things kind of pile on. And so I love that, like a forced kind of nervous system break between posts. I didn't know that was possible, yeah.
PATRICK CASALE: Yeah. So, I turned on the limited comments, right? So, someone can only comment every five minutes. This allows me as the host, and the moderator, and the human to step back and breathe. This allows whoever is feeling really charged up to step back and breathe. And I think we can implement, like you said, these boundaries that allow for us to take that step back, to take that breath, to not respond impulsively. And also, not to react impulsively because that's what's happening in this world where we have information at the tip of our fingertips, and we can just respond to anything and any everything all the time.
MEGAN NEFF: Absolutely. And then when we do that, and we have RSD, like, and we look back, and we're like, because I've definitely had that experience of like I'm in my reaction, and I am being impulsive. And afterwards, I'm like, "Oh, shit." And I replay the dialogue over and over and over. And, like, I don't feel like myself in those moments. And those moments become like kind of raw spots of shame. And so it's not just protecting kind of others from our spewing reactivity, but it's also protecting ourself of like how we're going to hold that memory and that whatever feelings or shame we have about how we acted in that moment. So, it's also protective of our future selves.
PATRICK CASALE: Absolutely, 100%. And I think there are other things you can do too to create these boundaries. Like, you can hit the unfollow button on groups or on people that are not creating that feeling of safety, or energy, or connection. You can snooze people for 30 days. One of my favorite things to do is hit the snooze button. I have snoozed so many damn people that I did forget to unsnooze-
MEGAN NEFF: I didn't know that was a thing. Okay-
PATRICK CASALE: [CROSSTALK 00:13:03] and then also they come back up, I'm like, "Oh shit, I need to snooze them again."
MEGAN NEFF: I just came up with an exercise. We should have everyone listen to this do this and you, and I should do it. Like, to log into a social media account very intentionally with a very specific lens, like a emotion nervous system lens, and to scroll but the thing you're paying attention to is what happens to you like when you see that content right? Is there activation? Is there anger? Is there like, "Oh I feel connected, and understood, and known." And yeah, to potentially like unfollow based on, I mean, that might sound harsh, but yeah, just based on like paying attention to what is your body telling you as you look at this content, and then is that someone you want to follow?
I know on Facebook it feels a little bit more personal. Like, oh my goodness, this person unfollowed me or we're not friends anymore. So, I know that gets a little… But that's maybe where the snooze button's helpful.
PATRICK CASALE: Well, the beauty of unfollow/snooze is not unfriend. There's a differentiation here, right? So, like, hitting unfollow means they'll never see your stuff again. But we're still friends. Like, they don't know that-
MEGAN NEFF: I don't know Facebook very well anymore.
PATRICK CASALE: Yeah, I spend too much time on Facebook, sadly. And that's where like the bulk of my work and audience comes from. And then there's the snooze button where it's like, I don't want to see these groups, or these messages, or these people for 30 days, and sometimes just simply hitting that button. And that would be the mute button on Instagram where you can mute and hide stories and posts from people too, but you don't unfollow them. And this allows for you to maintain the relationship, but just because you have a social media relationship does not mean that it's healthy for you to see their content, see their messages, see their posts every day. And if it's causing you harm, especially, if you're doing the exercise that Megan just suggested, it's a great opportunity to give yourself that detox experience or that ability to step away cleanly without hurting anyone's feelings, without like disconnecting from someone that you may have to have interaction with. So, I think it's important to always prioritize your energy first, because this stuff can really get on top of you and it can be quite depleting, and honestly, traumatizing.
MEGAN NEFF: Absolutely. The other thing, I'm thinking way more basic here, but things like something I see come up a lot is like when you post something, and there's no comments or likes, like there's not feedback. And that's an RSD trigger, also. Like if you say an idea in a meeting, and it just like drops, and no one comes back to it. I would think having some self-affirmations, maybe we can make like self-affirmations for social media, that'd be cool content. But things like having some mantras of like, you know, how many likes I get on this post, like, doesn't represent how many people in my life care about me, or doesn't represent my worth, or my value.
And so if those are the things that trigger you, I would actually work on developing or finding some self-affirmations that you could have, and have them on hand so that they can be front and center when the RSD story wants to take over your brain, you can kind of bring those back to mind.
The thing with mantras and positive mantras that I always say, especially, for neurodivergent people, we have to believe them. If we don't believe them, they're probably going to make us feel worse. And sometimes it's hard for us to find mantras that we actually believe.
PATRICK CASALE: Absolutely. I like that idea. I also love the idea, this may sound basic and simple. But I heart every single one of my posts that I make on Facebook and Instagram, and it just allows me to feel like, okay, I made this post, I made this content, I feel proud about it, so I like it. And like I've had other people start to mention like, "I've started liking my own posts, and it makes me feel significantly better about putting it out to the world." I'm like, "Yeah." I think that there are these little subtle psychological things that you can do to offset that worry, and that concern, that overwhelm.
I also wonder like, how much of RSD… I don't know if there's any research about this at all, and I'd be curious, is connected to the RAS, the reticulating activating system, the part of the brain that was developed to kind of like mediate risk-taking behavior, and kind of tells you like, "Hey, there's danger ahead. Don't do that thing. Don't post that thing. Don't pursue that thing. You know, don't experience that thing, because it's risky, or it's scary."
And, you know, I think the best way for me when I'm in these moments of like, major rejection sensitive dysphoria, I didn't just say that, right?
MEGAN NEFF: You did. [CROSSTALK 00:17:53]. It feels like you should. Yeah, yeah.
PATRICK CASALE: I should say, it feels like it should say sensation. I don't know why I feel that way.
MEGAN NEFF: Or it feels like it shouldn't be rejection sensitivity dysphoria, I actually used to call it that. But it's technically rejection sensitive dysphoria, which doesn't feel right coming out of my mouth.
MEGAN NEFF: That's the technical term that's been used, I know.
PATRICK CASALE: [CROSSTALK 00:18:10] rejection sensitivity dysphoria many times and I'm like, no, that's-
MEGAN NEFF: I actually think I have it in print as that and then only in my last round of research was like, "Oops, that's wrong."
PATRICK CASALE: Right. I don't even know what I was saying, doesn't matter.
MEGAN NEFF: You were talking about fear, and inhibition, and RSD.
PATRICK CASALE: Yes, that, and that, and that. Oh, yeah, when I'm in these moments, when I'm experiencing RSD, when I'm noticing being really, like, critical of myself, really taking to heart what other people are saying, or not doing, or how I'm experiencing feedback, I've got to get out and move. Like creativity and just being in movement and grounding myself, whether it be in nature, or going for a walk, or just getting out of this space because I think a lot of the times that RSD space, that energy, that actual physical presence of like feeling stuck and confined in it, if I can just put my phone down or my laptop in my house, leave the technology behind, go for a walk for an hour, like, just go do something else away from it, it really does allow me to center, and ground, and just regulate.
MEGAN NEFF: I love that. I love that. Yeah, I often will, like, use the metaphor of like burning excess energy. And that's very much what it feels like when I have a RSD trigger. Like, I just feel like so much energy. And so, absolutely, if I can channel it towards something like a walk or something that's more grounding, that helps me move through that energy more. I'm still going to have the intrusive thoughts, I'm still going to have the rumination, and I have other strategies for that, but getting the kind of stress, anxious energy out is so important, which is why, again, back to social media, right? Like, you could be in class opening your phone and you see something that activates, or like right before a business meeting, then you've got all this energy and you're supposed to be sitting and focused. So, that's probably another, like, thinking through when do I open this? Would be another consideration. I also, yeah-
PATRICK CASALE: And that would mean a good way you mentioned boundaries, you can put those restrictions on your phone, right? If you notice, like I am impulsively or compulsively checking my phone at these times, and it's creating distress, let's say it's in class, or at work, or whatever, put the boundary or limitation on the app that says like, I can't open this from this time to this time. At least, that gives you that, like, accountability check when it's like, oh, I click on Instagram and it tells me, "But you have it turned off for the next six hours." And I'm like, "Okay, now I have to make the conscious decision of do I want to continue on to Instagram? Or do I want to realize I need to step away from this for a reason because it's for my own mental health?"
MEGAN NEFF: Absolutely, absolutely. Okay, I'm kind of decentering from this conversation to have another conversation, I'm noticing that we're like, let's start with a simple question. And we're like 20 minutes into talking about RSD in social media. And I think there's a reason we're still talking about it. I kind of wonder if we want to make this whole episode about that, and have RSD in three parts. So, it's a huge topic. So, do you want to just keep this conversation and we can get to the more complicated questions in episode three? Cool?
PATRICK CASALE: Works for me. Yeah. And, you know, I think it's also, this topic, we're probably gravitating more towards the social media topic because that's where we spend a lot of our time. Not just for our businesses, like we mentioned, but for our communities, for connection. And I think that's really challenging. Like we mentioned, the connection piece, especially, for those of us who are neurodivergent, or introverted who have a hard time going out into the world and being social or our sensory systems are just overloaded constantly, if we're working from home, especially, we're probably spending a lot of time on the internet.
MEGAN NEFF: Oh, yeah, absolutely. So much of our life is spent in digital space, which is why like, narratives like social media is good or bad, like, just don't work because it's like, well, no, it is. And then it's like, let's have more nuanced conversations about how we use it, about our relationship to this, about when we have these social interactions through this container of digital space what does that do to the like, relationship, to the interaction? Like, it's so much more complex than is this thing that we have good or bad?
It actually reminds me, there's a study that just came out, and I've read the abstract, and I've skimmed it, but I haven't read it in detail yet. But it's a really interesting study. So, it's looking at autistic teens, and depression and anxiety. And so this is well-known in the research, right? Social media, and teen like depression, anxiety, like social media use tends to increase depression, anxiety.
So, they did a study and they looked at autistic teens versus non-autistic teens. What they found was that for non-autistic teens, like how much a person was using social media, or maybe it was digital, maybe it was screens. I think it was more broadly with screens, increased depression, anxiety, but for autistic people, it didn't it. In fact, I think it decreased it, and then where the researchers get it is autistic people are using digital space differently. They're using the internet differently. And I thought that was so interesting. And I want to do more of a deep dive into that.
But I'm also curious, I mean, we've been talking a lot about the ADHD experience. I'd be curious, like, yeah, how are autistic people using digital space differently in a way that is maybe helpful for mental health or at least less harmful?
PATRICK CASALE: Yeah, I'm actually thinking of an example. I had my first major throat surgery two years ago. And I remember, like, laying in the hospital bed, like recovering and obviously, can't speak, because I'm like recovering and just had throat surgery. But I'm also isolated, right? Like, I'm just laying on the hospital bed. And I know that I'm going to be there for the next three days.
And I was online, I was in my Facebook group and I was like, talking, and just sharing updates, and whatever. And several people were like, "Hey, you're supposed to be recovering. Like, you should get off of social media." Hence, like the social media is bad phenomenon/reality. And I got really like reactive/defensive in a way where I was like, "But this is how I connect with the world. This is not taking energy from me, this is actually energizing me to feel a part of something that I've created opposed to feeling isolated and alone, laying on this hospital bed for the next three days." Like, yeah.
MEGAN NEFF: I love that. And that I feel like really gets at the heart of it, which I would say is belonging, like humans have an innate need to belong. Social psychologists have really picked this up in the last handful of years of, you know, adding into some of like Freudians innate drives, when he would say an innate drive is to belong. And there's actually been some interesting research that what they demonstrated was that a lot of anxiety, and a lot of pathological anxiety, because anxiety is not always pathological is connected to this need to belong. So, this is such an innate, built in need in us. So, that's what I hear you saying in that moment is like, "Wait, no, like I need to tap into belonging as part of my recovery. And that is what I am getting from this space."
PATRICK CASALE: Absolutely. And I don't know if I was able to communicate it that succinctly. But what I did notice is like, I got immediately reactive, I started to feel very defensive. And I think this goes back to, maybe this is core as well for a lot of us who are neurodivergent, is not only that we need belonging, humans need belonging, absolutely, we need connection, we need to feel a part of. Like, that is just in our biology, in our genetic makeup. We need to feel seen, too. And I think that so often we do not feel seen, and we do feel overlooked, and we do feel like someone misses the mark of what we're trying to get across, or what we're trying to emphasize.
And I know for me, that feeling is really where I shut down, that's really where I experience a lot of shame, that's really where I experience some self-loathing is when I'm trying to get a point across or where I'm trying to express myself. And it's just missing the mark, and the person is just not seeing it the way that I'm trying to communicate it. And I think that for me, that is a lot of, if we're talking about the autistic experience, a lot of what I'm experiencing in these moments when we're talking about RSD.
MEGAN NEFF: We are experiencing the absence of being seen, of being missing.
MEGAN NEFF: Yeah, yeah, yeah.
PATRICK CASALE: [CROSSTALK 00:27:28] situations, this can happen in appointments, this can happen in social experiences.
MEGAN NEFF: I almost want to tease that out, but I mean, I think it is part of RSD, but that like experience of being misperceived. Something I've noticed, this is a clinical observation, I haven't necessarily seen research on this, but that I've noticed autistic people, many of them really don't like just the experience of being perceived, of knowing I can be perceived and knowing, you know, if I go on a walk someone can see me, if I am doing a performance, someone can see me, just see experience of being perceived. And I wonder how much of that… I mean, I think there's a lot of reasons for that. But I wonder how much of that goes back to like how frequently we are misperceived and how painful that is?
PATRICK CASALE: Yeah, that makes sense to me.
MEGAN NEFF: Just your reactivity makes sense too. Like, I was just thinking about like, how sad that is. Like, you went to this group because it was a place you do feel belonging. And then I know they weren't trying to tell you you're doing something bad, but I imagine that's kind of how you took it in to feel so unseen in that moment, when what you were getting out of the group was belonging, but then to be misperceived in your attempt to find connection and belonging.
PATRICK CASALE: Yeah, I think it was like the situation, right? Like, I'm the moderator of All Things Private Practice. So, I set the stage, I set the tone, I create all the engagement, all the interaction, and I probably had a lead up to surgery of like, I'm going to be away from this group for a while because I'm having a throat surgery. I'm not going to participate, and blah, blah, blah, blah, blah.
And then immediately, like, several hours after surgery, I'm like participating in said group. And people are probably coming from a place of like, "Oh, we're trying to look out for you, you said you were going to be recovering." So, I think it was an inability on my part to explain like, this is what I need right now. And I think that created this intense sensation of frustration. And like, I was not able to explicitly communicate my needs in that moment and just was hoping that people would just be like, "Yeah, let's talk about, you know, whatever."
MEGAN NEFF: Which that's probably like a really powerful takeaway, right? That part of neurodivergent people finding belonging and feeling seen is the ability to articulate what we need, because what we need in any given moment might not be kind of the status quo. Like right now I need space, or right now I need a hug, or right now I need to engage in this digital conversation and that this is actually helpful for me. So, A, getting clarity about what our needs are and B, finding comfortable ways to communicate that. I think that absolutely wraps into the belonging conversation-
MEGAN NEFF: …of being seen.
PATRICK CASALE: I want to model like, healthy communication around RSD as well, if you are okay with me sharing some behind the scenes of our friendship, and dynamic, and relationship.
MEGAN NEFF: Sure. Yes. My anxiety just went up-
PATRICK CASALE: Oh, no anxiety.
MEGAN NEFF: …but like, I love this about [CROSSTALK 00:30:53]-
PATRICK CASALE: I want to just like model it for people too.
PATRICK CASALE: So, Megan, and I obviously share an Instagram account. And then we collaborate on posts for said podcast.
MEGAN NEFF: Oh, my gosh. I almost texted you last night. Is this about last night?
PATRICK CASALE: Yeah. But I want to frame it from last night's perspective to six months ago perspective.
PATRICK CASALE: So, Megan's Instagram audience is significantly larger than my Instagram audience. It's a big source of your business and community. So, when we first started this podcast, we'd send collaboration invites, Megan would accept them. Well, half the time accept them, half the time not.
MEGAN NEFF: Accept them on Fridays, I have a very specific schedule I stick to.
PATRICK CASALE: And then she would remove herself from said collaboration. And I would get the notification like, Neurodivergent Insights has removed collaboration, whatever it says, And I'm like, "What the fuck?" And then I would say, "Okay, I respect Megan, and I appreciate our relationship. I cannot have this resentment/frustration or confusion."
So, we talked about it. But I was definitely in RSD moment where I was like, Megan doesn't want to do this anymore together. I said something wrong. The video content isn't up to her standards, whatever the narrative was in my head, and then we talked about it. And you're like, "No, this is just how my brain works. And this is how I need my grid to look. And this is how I need my post to look."
And I was like, "Oh, that makes a lot more sense. Like, it's not me, it's not us, we're still having a good podcast relationship and friendship." And that happened again last night. But I did not experience it the way I experienced it six months ago, because we talked about it.
So, for those of you who are able to have these types of conversations, I think it's very useful in relationships, whether it be friendships, professional, intimate relationships. I think the struggle is for those of you who feel like you're not able to express this in a way where you're going to feel seen, heard, validated, or understood. And that's the part I would like to tease out too, is for those of you who feel like, I can't do that with people, I don't have access that way, or don't have the ability to communicate it in a way that's going to lead to feeling like we resolve these feelings or emotions.
MEGAN NEFF: Absolutely. First, I love that you brought that up part. Like I did. I almost texted you last night to explain because like my profile grid right now, it's like divergent conversations, the middle column, and, you know, I'm autistic, I like… So, I almost texted you that I was like, "Oh, I don't want him to think." Yeah. But I love that that came up.
So, a term popped in my head when you were talking that just like came to me, relational reality testing. I think when we have RSD, that when we have those relationships that can sustain that we're going to be like, "Oh, this happened and I want to check in around it." Can be so helpful, not just for that relationship. But it starts creating, I guess, like evidence or a narrative of like, "Oh, right, my mind is not always telling me an accurate story, or a helpful story." And so having those experiences.
And then so for those situations where there's not enough trust to do that relational reality testing, if we can and have done those in relationships that are safe enough, where there's enough trust to do that, I think we can draw on those moments of like, you know, this last week this happened and my mind started telling this story and I found out it was actually about them. Maybe something similar is happening here, so we can kind of talk yourself through that perspective, I guess that perspective taking or that reality testing of like, maybe it's not about me. Like, we need a Taylor Swift song that's like opposite of the problem is me to like maybe it's not me. We need some catchy like, maybe it's not me song out there.
PATRICK CASALE: I love that. I think I like that term a lot too. And I think that's perfect to describe. And you talked about this last week where we were like, take a step back, be the detective, or the investigator, hear about your brain and what your brain and your thoughts are doing right. So, like, I think it's important to look at it that way. Also that it makes me divergent to another celebrity. I shot my shot for both of us with Chloe Hayden and her Instagram. She's an autistic celebrity, author, podcast host [INDISCERNIBLE 00:35:20]. Nevertheless, they responded, which I thought was really cool. And I was like, "Oh, man, maybe I can get them on his podcast." But sadly, not. Chloe's commitments take her away from-
MEGAN NEFF: Did that activate your RSD?
PATRICK CASALE: No, I never expected a response. So, it was actually like, "Oh, cool. At least you read this." I also shot my shot with Dr. Devin Price, have not heard back.
MEGAN NEFF: Well, speaking of social media boundaries, he's someone who has really good boundaries. And so, like, actually, I think I was inspired by him. Like, I don't know if it's changed. But back when I was more on there, like he rarely had comments on if ever. I don't think he does DM so I'm not surprised we didn't hear back. And I think it's partly because of those rock solid boundaries that he models and has.
PATRICK CASALE: Yep, I agree 100% because that's the message I got. DMs are not allowed to this account. So, you know, I will continue to try.
MEGAN NEFF: Yes, probably, I would guess email would be [INDISCERNIBLE 00:36:30].
PATRICK CASALE: Yeah, I tried to find it, couldn't find that but-
MEGAN NEFF: That's probably also smart.
PATRICK CASALE: Boundaries are important. And I think that Megan is someone who really has good boundaries. Like your email, auto response, your social media comments turned off for the most part. Like, you are protecting yourself and your energy. And I think that that's a big part of this, right? So, the ability to take that step back, create the boundaries that work for you, remove the interactions that are causing you harm, or distress, and trying to figure out how to channel that energy, like you said, that excess energy that you can have when you're in this RSD space, because we do need to burn it off in some way. Otherwise, it can destroy you in those moments. And it can lead to impulsivity, it can lead to things that you would like to take back, it can lead to destruction in relationships too that you care about.
MEGAN NEFF: Absolutely, it can. Yeah, yeah. That was a beautiful summary, like paragraph, and I kind of just want to end it there. But I feel like I'm going to ruin it, because I had a thought, I had an association.
MEGAN NEFF: I think we often have to work through some of our RSD to be able to create boundaries. I think the reason I waited till I was absolutely burnt out, overwhelmed, and struggling with health before I put up boundaries was partly because of my RSD of like, but people will be upset, but I won't be accessible. But like, that made it hard for me to go into digital spaces with boundaries. Or I have to respond to every email, right? Like, because of the RSD. So, that's a tricky thing here. Boundaries are really helpful for RSD, but we have to work through a level of it to be able to cultivate those boundaries, or just get burnt out enough that like you're like, "Okay, fuck it, boundaries."
PATRICK CASALE: That's where I got to. I mean, I learned some from you, you know, and your boundaries. But I got to, and I'm glad you just named that because that's honestly very, very important. It allows for us to not minimize the experience. Like, I think that you have to work through it to create the boundaries for sure, or be working on it. And you may be working on it, because like you said, you get to the place where it's like, "Fuck it, I don't care." And that's the place I got to for a while. And maybe that's the place I'm in is like when I meet with my therapist, she's like, "So, the ADHD part wants to create, create, create, the autistic part looks at the calendar and, you know, is already exhausted and frustrated about the planning."
But then I got to this place where both parts had no interest in doing any of it. And I think that was the fuck it moment where it was like, "Yeah, I'm not I'm not responding to every DM, or consult request, or email anymore. I'm just going to respond with blanket statements or referrals outward because I just cannot do it.
And it's unfortunate that so many of us have to get to that place, because there's so much connection, we talked about attachment systems last week with feeling useful, feeling responsive, having value based on feeling responsive or useful, working through that internalized sensation of I'm not going to be valuable, I'm not going to be useful, people aren't going to think of me, people aren't going to want to connect with me if I put these boundaries in place. So, it's a lot of unlearning. And it's a lot of healing when you're working through how to navigate this process.
MEGAN NEFF: Absolutely, absolutely. If there is one gift to burnout, and I feel weird, calling it a gift, maybe growth edge to burnout, it is, if it propels you to build a life that works for you, right? Like so many of us, the life we're living doesn't work for us, and we get burnt out. And if the pattern is like, live that life, burnout, kind of recover, go back to that life. Like, that's just going to be a perpetual cycle. But if that burnout is the thing, that's fine. Like, okay, I've got to do something different here. And if that becomes the instigator for cultivating a life that works, and like boundaries are a big part of that, that is, yeah, I guess, kind of the gift of burnout. And again, I feel we're using any kind of gift language with burnout, because it's atrocious, but…
PATRICK CASALE: I think it's illuminating in a lot of ways, though. I think it kind of is illuminating into what your next steps are, when you get to that level of burnout, where it's like, fuck it, I don't care anymore. I have to set these boundaries, otherwise, the results are XYZ.
MEGAN NEFF: It's kind of like grief. Like, I think about those moments in life that break you wide open, which are those moments that invite you into transformation if you can accept that invitation. And like grief absolutely does that. I would say burnout also does that.
PATRICK CASALE: Agreed. Well, I think that you just added to my summation perfectly. So, for those of you listening, lots of good takeaways here, and things that you can implement. I hope we answered the one question that we set out to answer-
MEGAN NEFF: One of the questions we got to.
PATRICK CASALE: DR. MEGAN NEFF: We start with the easy question and talk for an hour. Divergent Conversations is out every Friday on all major platforms and YouTube, and we will do part three, simultaneously. Goodbye.

Friday Nov 10, 2023

Do you ever feel like you are more sensitive to rejection, teasing, criticism, or your own perception that you have failed or fallen short? Or maybe you know someone who seems to be particularly hard on themselves and reactive to others?
Everyone experiences some reaction to rejection, but individuals with RSD find themselves more likely to perceive harsh rejection and criticism where there might be none and can sometimes feel like they live in a chronic state of rejection.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, dive deep into the complexities of rejection sensitivity dysphoria (RSD) and its impact on neurodivergent individuals and the people around them.
Top 3 reasons to listen to the entire episode:
Understand the impact of RSD and how it can lead to chronic pain, affect relationships, and cause avoidance behaviors in professional and personal settings.
Hear about some ways that RSD can impact relationship dynamics and major life changes and decisions.
Learn about treatments and strategies to help with RSD, as well as ways to adapt therapeutic modalities to be more effective with neurodivergent individuals.
Rejection sensitivity dysphoria can be difficult to navigate both internally and externally and can have a profound impact on the way you experience the world, but there are ways to address it that can help with reducing the intensity around feelings of rejection and finding ways to improve relationships through collaborative communication around RSD.
Resources plus Exclusive Coupon Code
Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Clinical Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-clinical 
Dr. Neff's Rejection Sensitive Dysphoria Workbook Bundle (Personal Use): https://neurodivergentinsights.com/neurodivergentstore/p/rejection-sensitive-dysphoria-bundle
Use Code: “DivergentConversationsListener” To get 20% off anything in the shop, including the RSD bundle. 
Dr. Neff's free blog posts on RSD: https://neurodivergentinsights.com/blog/category/Rejection+Sensitive+Dysphoria 
The EFT attachment infinity loop can be downloaded here: https://neurodivergentinsights.com/couples-resources
A Thanks to Our Sponsor, Tula Consulting!
✨ Tula Consulting:
We would love to thank Tula Consulting for sponsoring this episode.
Workplace communication can be messy. Considering the lens of neurodiversity can be helpful for understanding this. Maybe you found yourself frustratedly typing "per my last email" in an office communication, perplexed about how a colleague or client doesn't seem to understand your very clearly written email.
Consider this. Visual information processing isn't everyone's strength. Perhaps a quick call could make a world of difference. Or how about including a video or voice message with your email? And this technology exists! Simple steps like these can make your work environment more accessible and bring out the best in everyone.
Tula Consulting is on a mission to help organizations build more neuro-inclusive products and work environments. Tula does this by bringing curious minds to solve curious problems. Find out more by visiting tulaneurodiversity.org.
PATRICK CASALE: Hey, so we are about to do an episode on RSD today, which I think we are going to turn into a two-part episode. One, because there's so much to cover. Too, because Megan just wrote a 170-page workbook on the subject. Three, because I am unbelievably jet lagged and haven't slept in days. And Megan is not feeling well and is sick. So, we're going to do what we can today to kind of jump into the introduction to this topic.
But a lot of you submitted questions to our Instagram, a lot of you submitted questions in general, and we want to cover all of them. We just may not get there today. But this is certainly a topic that we are going to circle back to. So, because Megan just wrote a 170-page workbook, I'm going to turn it over to you to kind of set the stage.
MEGAN NEFF: Yeah, well, one problem is when you've been swimming in the literature it's hard to know where to start the conversation. So, yeah, how do I synthesize RSD? Well, RSD stands for rejection sensitive dysphoria. Yeah, I guess I'll go over the history of it briefly.
So, it was coined by Dr. William Dotson, who if you don't know who that is, like, I recommend Googling him. He's got a lot of really awesome articles up. He's got a lot of webinars that are free through ADDitude Magazine. And he's, like, done a lot in really emphasizing kind of the emotion regulation struggle that often happens with ADHD. But yeah, he's the one that coined RSD. Although, you could actually go back to the '60s and there was a psychiatrist before him, Dr. Paul Wender, who was describing symptoms that now we realize are RSD, who's using the language of atypical depression. But looking back, we actually see, like, okay, that was undiagnosed or often undiagnosed ADHD. And it was RSD and emotion regulation struggles that he was describing.
So, there have been breadcrumbs of this in the literature since the 1960s. But it was really in the last 20 years or so that it's become an actual term. It's not a diagnosis. It's not something you'd be diagnosed with. It comes out of the ADHD literature, so there's some debate, like, is this a specifically ADHD thing? And there's several people that say, yes, this is like a distinctive ADHD thing. So, that's the kind of, I guess, clinical definition of RSD. Oh, I guess what it is.
So, the question that Dr. Dotson would ask his… and he's a psychiatrist, he's not a psychologist, he's a psychiatrist. But what he'd ask his people when they come in is this question, "For your entire life, have you always been much more sensitive than people you know to rejection, teasing, criticism, or your own perception that you failed or have fallen short?"
And he said, 99% of ADHDers would have this like, yes. And not just, yes, but like, "Oh, my gosh, I feel like you know something about me that I've been so embarrassed to tell the people in my life." And then about a third of ADHDers said, "This is the hardest part of ADHD to live with." So, it's pretty significant when we think about kind of the clinical picture of ADHD.
Okay, I'll take a breather there. So, that's, I guess, the clinical definition, is it's a really intense, physical, emotional response to the perception of rejection. Or even, like, I guess self-rejection in the sense of like, I didn't live up to my own standards or bar, yes.
PATRICK CASALE: And this is very different than other forms of rejection. And I think that's important. Like, you went over that in your... was it Misdiagnosis Monday that you created the diagram for recently?
MEGAN NEFF: Yeah, so I created a Venn diagram comparing, like, what is normative rejection sensitivity and then what is RSD? And that's actually typically where I start the conversation. Earlier I was like, "Oh, I don't know where to start the conversation. I usually start with like the evolutionary history."
Rejection sensitivity is like a human experience and thank goodness it is. So, if we look at it from an evolutionary lens, the idea that belonging to a group literally meant survival for most of human history. You know, we're pack creatures, and we're not the biggest or strongest species, but it's our ability to think together, to be together, to problem solve together that has meant humans have survived. So, the thinking goes, and this is, you know, any evolutionary psychology is going to be an oversimplification, but kind of the thinking goes, so our anatomy hasn't caught up, right? So, if we perceive rejection, we can experience that as a threat to belonging, therefore a threat to survival on a very kind of automatic level because it's like it's baked into our DNA.
And so we haven't caught up to the fact that we don't actually have to belong to the group to survive in modern life. But our body chemistry or our nervous system hasn't caught up to that. So, I like to frame, like, rejection sensitivity through that lens of, yeah, this makes sense as a human experience and it's a spectrum. Some people have really intense. So, like, if you have RSD, you're going to have a really intense rejection sensitivity, whereas other people have more mild rejection sensitivity.
But yeah, that is what I did on the Venn diagram and the articles. I walk through, like, this is what normative rejection sensitivity looks like and this is what RSD looks like because RSD is above and beyond that normative sensitivity to rejection.
PATRICK CASALE: Yeah, thanks for setting the stage like that because I think it's important to delineate between the two. Like, it's absolutely a process of human experience to feel hurt when they feel rejected, or to feel vulnerable, or to feel insecure, or to feel unsafe. But this takes this to a whole new level, right? Because the symptomology, the struggles that come with RSD can really intensify very quickly and be unbelievably debilitating.
MEGAN NEFF: Absolutely, absolutely. Yes, debilitating. And like, yeah, I think that captures it. And that is part of, like, that's one of the ways I distinguish between, like, RSD versus normative of how much is influencing the person's decisions or daily life. And if, like, a fear of rejection, a fear of putting ourselves out there is significantly influencing our decision, that has a lot of control over our day-to-day. And typically, it's not a great thing for our well-being when fear is controlling. There's a lot of avoidance that can often happen for people when they have RSD. Like, avoidance of social situations, or putting themselves out there for like a job promotion. So, there can be career implications, romantic implications. Like, I can't even imagine asking someone out on a date, right? What if I'm rejected? So, yeah, it can be really debilitating.
PATRICK CASALE: I see it show up a lot in the coaching that I do because of the entrepreneurial side of my business with a lot of my ADHD coaching clients, where it's really hard to even put themselves out there on social media, it's really hard to create content, it's really hard to put their own spin on something because God forbid someone comes in and critiques it or says something that really sends them down that shame spiral.
MEGAN NEFF: So, I actually just had a really interesting consultation around this. And right now I'm working with a psychoanalyst because I'm wanting to… this is a little bit of a divergent trail, I'm wanting to… So, as a psychologist, when I work one-on-one with people, I have a relational framework for the work I do. And I've realized having a framework is really helpful.
So, I'm wanting to figure out how to adapt that relational framework to what I do as a public psychologist. So, I've been consulting with… a lot of people consult with like business coaches, I'm consulting with a psychoanalyst to figure out how do I bring a relational framework to the work I'm doing?
PATRICK CASALE: That's right.
MEGAN NEFF: But part of what came up was this, I've realized in writing this workbook that RSD is probably the number one block when it comes to, especially, social media because social media is just such a vicious space right now. It can be, I shouldn't make global statements, it can be.
And one thing I was talking about was how as an autistic person, my ideas, and my emotions are not separate. So, as an autistic ADHDer, right? Like, and I see that a lot with autistic people, our ideas, and our emotions, our ideas, our values, and our personhood are so integrated. So, when I put my ideas out there, I'm putting a lot of myself out there, and then you layer on top of that RSD, damn, that's hard.
PATRICK CASALE: It is. That's such a great way to kind of just put that out there too. And I know that you've been on the receiving end as I have too, your audience is significantly bigger, so you probably receive more of it, but I've been on the receiving end of text messages with you where someone said something nasty, or really like offensive, or just inappropriate, and how debilitating… why do I keep using that word? How painful that [CROSSTALK 00:10:1]1-
MEGAN NEFF: ...today.
PATRICK CASALE: I don't know, I feel like my brain is moving at like
MEGAN NEFF: Yeah, we're both struggling.
PATRICK CASALE: [CROSSTALK 00:10:19] but how painful that experience has been for you and how it makes you kind of retreat inward, and then a void.
MEGAN NEFF: It does. So, I just recently switched things up. And it's actually been so good for my mental health. Like, the way I joke about is that I've emotionally broken up with social media because what I was noticing, I noticed a few things and it's so helpful to have the RSD lens. Like, probably for the first six months, when I was growing, it was really exciting. I'd open the app, I'd be excited to see like how many like, you know, because I had these little posts that would just go viral. And it'd be exciting to see that.
And then it shifted to where I'd open the app and I would dread like, "Oh, no, did it go viral?" Or like my stomach would drop every time I open the app. Or every time I open a DM or the comments, like, half the time I literally kind of open the comments because I would feel so stuck of like, what am I going to see? 99% of the comments are really incredible things to read. But of course, those aren't the ones that stick to my brain. It's the 1% of it.
Again, I want to tease apart, some of the comments that are critiques have been really, really good learning experiences for me. And then some of them are just like rude, and unkind, and come with a lot of hostility. And I do value the ones that are hard to take in but those have been good learning experiences for me.
Yeah, I got to a point where I would feel physically sick opening the app. So, what I've done is I've turned comments off. I have an auto DM. And I will go days without opening the app. So, I will open it on Monday and Wednesday when I post. And you know how you can see on your phone how much time you've spent, like I spend like five minutes a week on Instagram. And it's amazing. And I feel like I've so much of my nervous system back, I have so much my mental real estate back. And I'm reinvesting that. I've launched my more community-oriented membership. And I'm reinvesting that energy in people who are really committed to showing up and engaging authentically. And I cannot explain what a difference that has made for my mental health.
PATRICK CASALE: I'm really happy that you've done that for yourself because I know the amount of energy it takes. I also know how impactful it becomes. And it becomes a situation where you have… I, typically, in these moments will shut down, I will avoid, I'll turn everything off, I have to disconnect from everything.
And then you're right, there's like this fearfulness of even opening the app back up. There's this like overwhelming dread sensation of like having to look at anything where you may perceive it in any sort of way that feels critical or… and not in a bad way because criticism is not always a bad thing, like you mentioned. But there are just people who like to just say stupid shit just to say stupid shit. And you have free rein to do that on the internet. So, it becomes really hard for people who are in online practices who are therapists who will have to network virtually, who have to show up online because that can really intensify very quickly and all of a sudden that leads to that shutdown or the disconnection.
MEGAN NEFF: Yeah, yeah. No, I love how you're connecting it to entrepreneurship because I think there's a lot of, particularly, ADHD entrepreneurs and RSD is very ADHD thing. And like, that double-edged sword of, yeah, like, you have to put yourself out there to be an entrepreneur. And oh, my goodness, if you put yourself out there, you're going to face criticism. You just are. Like, you can't please everyone. And something I like that's a mantra I remind myself, but when you have RSD you have to.
PATRICK CASALE: Yeah, you're right. And that's why I keep bringing up the entrepreneurial side is because so many ADHDers that I know are entrepreneurs and it makes sense. Like, it works with the way the brain functions, and the creativity, and the spontaneity, and all the innovation. And like, it's also really challenging because it is about showing up.
And you mentioned something before that's sticking in my mind about like, the inner connection of like the inner woven thought, feeling, experience for autistic people. And I get that very much and so much of ourselves when we put ourselves out there in that way, is like this is an extension of how I'm feeling and how I'm moving through the world. So, for it to be picked apart at times of like, "Oh, well, this isn't that character, this doesn't sound right, or like, I don't like the way this came across." All of a sudden it becomes this, like, sensation or this experience of my personhood, like, my sense of self is being under attack right now. And that makes me want to, like, bury my head and hide.
MEGAN NEFF: Yeah, absolutely, absolutely. And then, again, I guess, to bring it back to the AuDHD experience, like, another thing I see and I experience as an autistic person is like the fear of putting something out there and it being factually wrong. Like, I think that's one of my biggest fears. And I see that with a lot of autistic people. Like, what if I write something, and then in five years new research comes out, and like that language, and that, like, I've been talking to my spouse a lot about… my business has just become a huge source of stress if I'm working way too many hours, and I'm chronically sick. So, something has to change. And one of the things I was realizing and talking with my spouse, the reason I'm so stressed is I'm frantically because I have this membership that I've historically published a workbook a month that also means I've got like 20 workbooks, and I'm like, what is wrong in that, that I now want to go back and update? Because the idea of like, anything being out in the world that has my name on it, that might be factually wrong, from an autistic lens is also, like, very unfathomable.
PATRICK CASALE: And I imagine how unmanageable that becomes too, that it's like, "Oh, I have a 170-page workbook. Now I have to go back and add or edit and revise." And like, very time consuming, obviously. But, you know, Luke is obviously a God sent too, so…
MEGAN NEFF: Yes, that's what he is [INDISCERNINBLE 00:16:44] one. But yeah, so I think, especially, the autistic ADHD experience, it gets complicated because there's a lot of different layers that we can feel rejected or criticized.
So, this, I think, is a really important part of RSD. And I think this becomes an important part of learning how to work with RSD when our brain is hyper-vigilantly scanning for signs of rejection, what it means is that, like, the wiring around that is going to become like, and the neural pathways are going to become really forged around, like, perceiving rejection, which means we're going to perceive it when it's not actually there. And this is where I think partnerships and friendships really suffer. Like, let's say two ADHDers, right? So, like, someone forgets to call or someone forgets, like, because working memory, it can be a struggle, and the person with RSD that might trigger, like, that person doesn't care about me, and it could trigger so many narratives, when it's really like, oh, something came up and they forgot. And I think that is part of what causes so much pain around RSD is it's like someone is perceiving it chronically when they're not actually being rejected.
PATRICK CASALE: That's what I come across the most too when people are asking questions around RSD is like, well, if I'm moving through the world where I'm constantly feeling this pain of rejection or experiencing it this way, how do I then move through the world? Because it's so hard to maintain friendships, working relationships, professional relationships, etc. when I'm experiencing RSD so intensely in all of these situations.
MEGAN NEFF: Yeah, yeah, yeah, yeah. I mean, for a lot of people it's like, okay, it's easier just not to put myself out there. It's easier not to be in a relationship. It's easier to make my world small. And that's a really sad solution.
PATRICK CASALE: It is because there's so many feelings of isolation, and loneliness, and disconnection as there is for a lot of neurodivergent people, so intentionally shrinking your world to protect yourself from potential harm, it's really, really hard.
MEGAN NEFF: Yeah, yeah, yeah, yeah. We haven't even talked about that aspect of RSD of, and this is why, like, you also hear autistic people talk about RSD. I'm really curious, we haven't seen a study on this but I'd be curious if we did a study that controlled for the ADHD because we know so many autistic people have ADHD, like purely autistic people, would they still have RSD? I'd love to see a study on that.
But the neurodivergent experience of just perpetual miss-attunement, like we have had more rejection. So, that's another complicating factor, right? We're more likely to perceive it, but partly that's because we are more likely to have experienced social victimization and rejection. And then it becomes this kind of vicious feedback loop of if we show up anticipating rejection, we might have developed psychological defenses and ways of being in the world that actually make it more likely for us to be rejected. And, yeah, it's vicious.
PATRICK CASALE: We've talked before about, like, how we always lay out the pain points because so much of the experience is pain points, honestly. But if we're saying this, right? And then we take a step back from the clinical lens for people to say, okay, this is my experience, this is my world, this is every day, this is how I move through relationships, this is how I perceive conversation and feedback. What do we do?
MEGAN NEFF: Yeah, no, I mean, there are things we can do. And I'm going to kind of put it in two buckets, psychopharmacological. Okay, big words and brain fog don't mix well today. And then kind of psychological treatments or therapeutic, like, more traditional type treatments. And again, this comes from Dr. Dotson's work, but he has talked about, so there's a class of medications, I'm going to actually look it up so I make sure I'm using the right words, that it's a non-stimulant medication, that it's a class of medications that's sometimes used for a for ADHD.
So, alpha agonist is the class, and clonidine and guanfacine are the two medications within that class. Okay, this is really technical, but both have about a 30% response rate. So, a response rate when we're talking about medication is kind of significant reduction of symptoms when the person is on it. So, 30% isn't great. But these two medications are different enough that if you try one, and it doesn't work, and you try the other, there's about a 55 to 60% response rate that one of these will work for you. That's actually a pretty good response rate when it comes to medication.
And Dr. Dotson, and again, he is a psychiatrist, but like, he will talk about how he's worked with people who have maybe been like, psychoanalysts for 10 years. RSD wasn't touched, they go on medication, and it's like they ask a girl out for the first time or they apply for that job. Like, it provides emotional armor that they needed. A, to just get out of that avoidance suit, but B, to actually be able to engage like the talk therapy tools. We often need some sort of armor or just regulation to be able to engage the tools that are useful. So, I think that's a really helpful frame just to realize, like, there are medications out there that might be helpful for some people.
PATRICK CASALE: That is definitely helpful. And then, you know, on the other bucket, the psychological framework and toolkit that we're talking about, what are strategies that you think are useful?
MEGAN NEFF: So, yeah, like a lot of kind of the traditional emotion regulation strategies, but then like, a little bit more targeted. First of all, I think, learning about the rejection sensitivity lens, I say this a lot, and sometimes it gets big reactions, but like, we have to learn to not always trust our minds. Like, our minds are not always helpful. Sometimes, like-
MEGAN NEFF: Yeah, our minds love attention. And so sometimes it'll spew the most mean, negative, alarming things at us to get our attention. And this is one area where I think learning to not trust our minds becomes really important, realizing, okay, I am prone to have like a rejection goggles on or rejection lens on, which means I'm going to see it when, like, maybe my partner isn't actually trying to reject me, or maybe my boss is genuinely giving me… like, is intending good for me in this constructive feedback.
So, I think one really getting clarity on that lens so that we can identify when that's on so that we can unhook from it a little bit more. I would say that's the first step. Other steps like emotion regulation strategies. So, again, if we put this back into the perspective of a threat response, our nervous system, our stress state, our fight, flight, freeze, fawn wherever we go in our nervous system is going to be activated when we're perceiving rejection.
So, I'm a big fan of like nervous system mapping, which I think that comes from polyvagal theory. I don't love all of polyvagal theory, but I like this idea of nervous system mapping of like, let me map where I am in my stress response, and then figure out what tools you need. So, if you're someone who goes, like hyperarousal, you would need downregulation strategies to kind of help cool the body off. So, emotion regulation strategies.
And then, also, things like knowing your rejection triggers, knowing your, like, what I call raw, but what I didn't come up with the term, but raw spots. Like, what are those raw spots or those areas in our life where maybe we have some attachment wounds, or some relational wounds so when they get bumped they pull a big reaction from us, getting a lot of clarity about, like, what are your rough spots? Why? What's the history of those? What happens to you when those get activated? So, also, like a ton of insight, right? Insight into your relational patterns, into your psyche. I'll stop there, that was a bit. There's, I'm sure more.
PATRICK CASALE: Those are good to start out with so that people can implement this stuff and start, you know, doing their own research or incorporating these into their day-to-day because I think it's important to be proactive, too, because I think you're mentioning so many important tips right now and the raw spot suggestion, great suggestion, right? Because if you know what creates these triggers for you, then you can work on, you know, preventing, or at least putting into practice something that will help regulate when you're going into events like that or moments like that.
I actually don't like at all, and I just want to be clear about this, CBT but REBT, rational emotive behavioral therapy, when you do like the ABCDE model of like activating event, behavioral challenge, challenging belief disputation, because what we're talking about is like, my wife's not picking up the phone, she must not love me anymore. And we're jumping to these conclusions, we're catastrophizing a lot, and I like that you said, don't always trust your brain because there are always, and I don't want to use blanket statements either, there are often alternative explanations for behavior.
MEGAN NEFF: Yeah, yeah. Wait, so are you saying you don't typically like CBT but you do like that CBT exercise?
PATRICK CASALE: Yeah, I like that exercise because it allows you to say like, what's the activating event? Okay, she doesn't pick up the phone. My immediate reaction is she doesn't love me anymore, right? Like, and then you've kind of processed it through that lens of like, but what are the other scenarios here for not picking up the phone?
MEGAN NEFF: Yeah, I'm glad you say that because I'm with you. And that, like, I tend to not default to CBT, especially, for neurodivergent or anyone who's had a marginalized experience in the world because I think it can be really invalidating. But then there's these tools from CBT that I really like. And I'm like, well, if you put it in context, this can actually be really helpful. And I don't want us to, like, throw the baby out with the bathwater.
So, I'll talk about that too, like putting your thoughts through a reality filter. And there's certain questions you can ask to be like, okay, is this thought helpful to me right now? Is it like, yeah, are there cognitive distortions that are, like, influencing this? Kind of that detective work of like, let me become a detective of my own mind, and my own experience, and my own thoughts, which even just the act of stepping outside of the experience into that observing detective, ideally, non-evaluative, non-judgmental mode is therapeutic, no matter where you land on the reality filter of the thought.
PATRICK CASALE: Absolutely, yeah. And I'll just piggyback on my statement of saying I'm not a fan of CBT. I know how harmful it is for marginalized communities and for neurodivergent folks in… oh, we could have a whole episode on therapeutic modalities that don't work well for neurodivergent human beings. But if you put it through that lens, and I like that you use that word, you can start becoming that detective, you can start, like, taking that step back because it's really helpful when it feels like almost everything is creating this intensification of experiences that leaves you feeling like you're not able to participate in your life because you just feel like you can't put yourself out there or you can't, you know, speak your mind, or you feel like you just can't show up the way you want to show up. And I think that's really challenging for a lot of ND folks, too, is like, if I can't show up authentically, that really feels uncomfortable and that feels really painful, too.
MEGAN NEFF: Yeah, I mean, that then ties into like masking and RSD which that can be its own, like complex conversation. But yeah, if masking helps reduce RSD you could see how like, okay, I'm going to say this, but then I'm going to unpack it, masking becomes a form of self-care. And I don't mean that masking is actually self-care, but like, in that option of like, I'm either going to, like, spiral, like, the fear of I'm going to spiral with RSD because I'm going to show up authentically and you know, the fear, it's not going to be perceived, or I'm going to mask, I could see how for someone masking feels like the less energy cost of the two. And again, that's assuming that masking is like a choice, which it often is not. But it's just that is an interesting, like, yeah, the masking RSD dynamic.
PATRICK CASALE: Yeah, absolutely. So, I think we could take this in a variety of ways. And I think we could talk about, like, partnership and RSD, I think we could talk about so many different avenues. I also don't know how your energy is and I want to check on that.
MEGAN NEFF: No, I actually feel like I've talked a lot about like content creation in RSD, which is not going to be, like, the majority of people listening to this. So, I'd love to spend some energy to generalize it more to, yeah, relationships, workplace, things like that.
MEGAN NEFF: Absolutely.
PATRICK CASALE: So, let's talk relationships. Whether it's, you know, different neurotypes, same neurotype, one person is experiencing RSD, one person's not, that can be really challenging because conflict can arise in relationships, and often does. And it can feel really, really painful to feel like you are being critiqued, or you feel really vulnerable, or you're, you know, feeling like you're spiraling often in conversations with your partner. And I imagine then the other partner would then feel that challenge too of like, I don't even know what I can say.
MEGAN NEFF: Yes, yeah. I mean, I think it's painful for both people involved, right? Because if one person feels like they're walking on eggshells, right? That's kind of the famous metaphor, that is not healthy for a relationship if there's not the capacity to talk openly about what is happening, and if hard conversations spiral into, like, emotion dysregulation and conflict. So, that is a really painful scenario for both partners involved. Yeah, absolutely.
With relationships, I'd be curious to kind of like overlay attachment style and RSD. And attachment theory is one that like it gets critiqued for being oversimplified, but I find it a really helpful lens, even with it being, if people know like, okay, this is probably an oversimplification, I still find it really helpful and to someone who has RSD and also, anxiously attached, like, there's going to be some big emotions when they perceive like an attachment injury or where they perceive they're being criticized.
And again, kind of, I'm mapping, I guess, is my word today, but mapping out what are the attachment styles. There's a really great exercise from EFT therapy. It's infinity loop. I have a link on my website, I could link it in our show notes. But it's essentially you map out, like, what happens in the aftermath of an attachment injury. Like, what story does each partner start telling? What did they start doing, right? So, some partners will retreat, some will go to work because it's like, we have to fix this. But then that activates another story, like a secondary story. So, you can map out like, okay, what happens to us in an attachment injury. I think exercises like that become really helpful because then you can understand and name the chaos without a map of like, what is happening here? It's really confusing.
PATRICK CASALE: Yeah, yeah, absolutely. And I'm glad you mentioned that because I think recognizing the attachment style and the pattern and then being able to, again, step back when you're not activated and look at it, and say, okay, now I get a sense of like, what's happening in these moments because what you don't want to do, like you said, it's not a healthy partnership if you're walking on eggshells if you feel like you can't have communication, and it's very different experiences on either side, so each partner is experiencing this painfully but very differently, too.
MEGAN NEFF: Absolutely, absolutely, yeah. Like, I think ideally the RSD could almost be externalized and be talked about as like a thing in the relationship, right? Like, okay, we just hit an RSD wall, or like, we just triggered the RSD. I love externalizing both and like individual techniques, I do it all the time. Like with, oh, my mind is doing this thing, right. That's it. I'm externalizing it. I'm making it less connected to me. I'm saving the relationships when we can externalize it and it's like, let's collaboratively solve the struggle we're experiencing around this RSD trigger versus you versus me. That really changes the conversation.
PATRICK CASALE: It feels much more like teamwork at that point in time. And going back to your detective analogy before, like, you're both putting on that detective hat of like, how can we solve this together? Instead of you're injuring me versus I'm experiencing our relationship this way.
MEGAN NEFF: Yeah, yeah, exactly, exactly. Yeah, yeah, that makes such a big difference when partners can do that, like stand side by side, look at the dynamic together versus… I see that a lot, so much like accusations, and kind of like, I mean, our narcissism episode just came out. Like, you are a narcissist, or you're gaslighting me. Like these huge words get thrown out, or can get thrown out when we're looking at the other person as the problem versus looking at the dynamic, or the issue, or the like the process, content versus process. Like, that's a communication thing of when we're locked in the content, which we typically are during in RSD trigger. That means we're locked in like, the thing we're talking about.
Process is kind of like bird's eye view, like what is actually happening here relationally? You can get unhooked from the content enough to have some process conversation, some process reflection, that is so helpful in relationships.
PATRICK CASALE: Absolutely, 100%. And I think that's also a good transition point into professional relationships. Like, because those things happen in the workplace, too. And it can happen with your co-workers, it can happen from a employee/employer standpoint, and the implications can be pretty huge, like you said, not trying to go for that promotion that you wanted, not talking out in staff meetings because you're going to feel rejected for how you come across. There are so many ways that this can show up in the workplace, too.
MEGAN NEFF: Absolutely, absolutely. And I think it's going to depend like, so I talked about, well, Dotson talks about three ways people can respond to RSD, I've added a fourth one. And I have like a little matrix up of like the different ways people can typically respond to RSD. So, workplace stress is going to depend on like, what is your kind of default response?
So, like, perfectionism is a really common response to RSD. Like, if I just never make a mistake, then I'm fine. No one's ever going to perceive any of this, right? It's totally illogical, except it's not because we're going to make mistakes.
People pleasing, so kind of, like, I put that in under the fawn mode. Like, perpetual people pleasing, like reading, like, what does this person want from me? And a lot of people that are RSD become really good at like, kind of taking in a person, figuring out exactly who they want the person to be. I think that ties back into masking and other things.
And then avoidance. So, just like, I'm going to avoid putting myself out there. I think that's the one we've talked about the most in this episode.
And then the one I added is the like projector or someone who gets like fight mode when they're perceiving rejection. So, yeah, workplace, if you're a perfectionist people pleaser, with RSD in the workplace, you're going to burn out really fast.
PATRICK CASALE: Yeah, yeah. It's going to look like workaholism, right? And you're going to be potentially putting in extra hours that are unnecessary, you're going to be taking on additional tasks that you don't really have the capacity for or don't want to do. And you're going to be one of those employees potentially that goes above and beyond for everything. And then ultimately, it's like, fuck, I can't do this job anymore. This is not manageable for me. This is not sustainable.
MEGAN NEFF: Yeah, yeah. And like I think you and I were probably both in that category. And I think that then resentment can come in. So, I would say it's like a more low-simmer chronic RSD response, right? Because there's this illusion of I can, yeah, evade rejection if I just work harder. But then the resentment that builds up, the burnout that that builds up. Absolutely, yeah.
PATRICK CASALE: Yeah, absolutely. And then it leads to either termination or leads to quitting a job that you may have been able to navigate or find some accommodation for and it can be really challenging. I think that if we're looking at the whole person, this is so impactful interpersonally, in relationships, in employment places, employment places, places of employment, [INDISCERNIBLE 00:39:39] but it's so impactful. So, knowing the triggers, like you said, implementing some of these soothing strategies for your nervous system, being able to have these conversations, being able to externalize. I think there are a lot of good strategies that you're naming and mentioning right now.
MEGAN NEFF: Yeah, yeah. And then also for the avoiders, right? Like getting out of the avoidance loop, which essentially, a lot of anxiety-based treatments are all about targeting avoidance because avoidance feeds anxiety. So, I would add that tool for the avoiders, and especially, with the workplace. Like, avoiders are probably going to be underemployed, they're not going to be going up for that promotion, they're not going to be putting themselves out there. And so really targeting avoidance, using exposure.
Gosh, it's going to be a whole other episode. Actually, I feel some guilt about this because I think I used to be one of the voices that said this, and I'm now seeing it on social media a lot. Like, exposure therapy doesn't work for autistic people. Exposure therapy doesn't work for sensory habituation. But that doesn't mean it doesn't work for PTSD triggers, for anxiety. So, we have to get out of this, I think it's a dangerous mindset to say exposure therapy doesn't work for autistic people. When you're in an anxious-driven avoidance loop, you absolutely have to do exposure. Like, it can be natural, it should be led by you. So, for that person exposure and addressing the anxiety would be a really important part of the toolkit.
PATRICK CASALE: Glad you name that. I think that's a really good tip and also good framework for the recognition that in some instances certain techniques and strategies are useful, like we said before, despite not being useful as like a blanket statement or across the board.
MEGAN NEFF: Yeah, I'm starting to become more gentle in my language use. Like, I think I used to be like, "This kind of therapy is bad." Like, I used to say, like, "CBT is bad for autistic people." I'm now more around like things need to be adapted, right? So, you need to adapt exposure therapy when you do it for an autistic person, 1,000%. If you're using CBT, you should adapt it and consider the marginalized experiences. So, I'm kind of like, yeah, I'm changing my narrative a little bit and how I talk about it. I'm softening it to talk more about adapting and less about what's good and what's bad.
PATRICK CASALE: I think it's also important to like, differentiate between taking one simple tool, or technique, or strategy from something, opposed to saying like, okay, CBT as a whole, we don't like it. But this one technique really is useful if we adapt it in a neurodivergent affirmative way. And I think that you could do that with a lot of different therapeutic interventions and modalities.
MEGAN NEFF: Absolutely, absolutely. Yeah, yeah, yeah.
PATRICK CASALE: Usually, three yeahs in a row from you is like, all right, let's transition out. So, is that where we're at?
MEGAN NEFF: I mean, I don't know how long we've been recording. You're right. Like, you said this before we started recording because we were both feeling really lousy. And I was like, "I don't know if this will be a good episode." You were like, "Usually when we start talking it like works." I feel like I could talk longer. But I also feel like I could be done. I don't know, what do you feel?
PATRICK CASALE: I feel the same way. I think we've been recording now for about 45 minutes so-
MEGAN NEFF: Okay, good length.
PATRICK CASALE: Good length of time. And I think it's a good foundational episode to then build off of for different perspectives. I think we can also have people on here to talk about their own RSD experiences, and how it shows up, and how they work through it, or try to manage, and support themselves. So, I think we can go a lot of directions with this.
MEGAN NEFF: Yeah. And I mean, I love, we should definitely do a like answer questions follow up because I think people have a lot of questions around this topic. And so we could do that.
PATRICK CASALE: Yeah, will say I didn't think about even asking for questions for the episode until like 10 minutes before we started recording. We got like six questions immediately. So, I think that with another day or two, we could compile all that and we can address that the next time we record.
MEGAN NEFF: Let's do that.
PATRICK CASALE: Cool. Well, for those of you who don't know, Megan, and I haven't recorded in like three and a half weeks because I've been gone and I just appreciate being able to fall back into this even though we feel crappy, like connected in that way. So, just want to thank you for that. What was I going to say?
MEGAN NEFF: I think episodes are out every Friday on all major platforms, Spotify, Apple…
PATRICK CASALE: What Megan just said, new episodes are out every single Friday. If you have topic requests, if you have questions you want answered, please email our Gmail address that's attached to our Instagram, which is divergentconversationspodcast@gmail.com. We do read those. We don't always respond because we just don't always have the capacity or the spoons to do so.
And new episodes are out every single Friday on all major platforms and YouTube. And Megan has a 170-page workbook on RSD that you can purchase from her website at neurodivergentinsights.com. And that will be linked in the show notes as well. Cool. All right, goodbye.

Friday Nov 03, 2023

Do you wonder how life might differ between an Autistic individual without ADHD and an Autistic individual with ADHD?
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Amanda Diekman, mother of three neurodivergent children, and an author and coach in the neurodivergent-affirming parenting world, about her experiences as an Autistic individual without ADHD.
Top 3 reasons to listen to the entire episode:
Understand some of the struggles, grief, and loss surrounding switching between a masked and unmasked self.
Identify some of the ways that autism without ADHD can present differently from other neurotypes, including sensory issues, special interests, demand avoidance, and life tasks.
Get a glimpse into the world of parenting for neurodivergent moms.
There are many nuances surrounding the experiences of Autistic individuals since autism is a disability you can’t necessarily see. We want to give this disclaimer that this episode only highlights the experience of one Autistic person, but it still gives a glimpse into the unique ways that various neurotypes experience the world.
More about Amanda:
Amanda Diekman's mission is to lead weary parents into the joy and ease of the low-demand life. She's an ordained pastor and parent coach, a late diagnosed autistic adult, and a mom of three neurodivergent children. Since recovery from her own burnout and PTSD, Amanda has been spreading the message of low-demand parenting — dropping demands and aligning expectations to meet children with radical acceptance. She lives in the North Street Community, an intentional community of all abilities in downtown Durham.
Amanda's Website: www.amandadiekman.com
Amanda’s Book: Low Demand Parenting
Parenting Summit: Low Demand Parenting Summit
Mastermind: Amanda’s Mastermind Program 
A Thanks to Our Sponsors, Tula Consulting & Marisa La Piana LCSW Psychotherapy!
✨ Tula Consulting:
We would love to thank Tula Consulting for sponsoring this episode.
Workplace communication can be messy. Considering the lens of neurodiversity can be helpful for understanding this. Maybe you found yourself frustratedly typing "per my last email" in an office communication, perplexed about how a colleague or client doesn't seem to understand your very clearly written email.
Consider this. Visual information processing isn't everyone's strength. Perhaps a quick call could make a world of difference. Or how about including a video or voice message with your email? And this technology exists! Simple steps like these can make your work environment more accessible and bring out the best in everyone.
Tula Consulting is on a mission to help organizations build more neuro-inclusive products and work environments. Tula does this by bringing curious minds to solve curious problems. Find out more by visiting tulaneurodiversity.org.
✨ Marisa La Piana LCSW Psychotherapy:
We would love to thank Marisa La Piana Psychotherapy for sponsoring this episode.
Marisa (she/they) is a neuroqueer licensed clinical social worker and trauma therapist. They bring a queer and neurodivergent-affirming, anti-ableist lens to their practice.
She is passionate about utilizing attachment-focused EMDR work, parts work, and body-based somatic work to support folks with trauma healing. They are also deeply influenced and inspired by the inherent strengths, resilience, and wisdom of queer, disabled, and neurodivergent communities. Marisa offers both individual therapy as well as workshops and trainings. 
If you reside in the state of California and you're looking for a queer, neurodivergent-affirming therapist, you can schedule a free consultation at marisalapianalcsw.com.
MEGAN NEFF: Well, welcome back to segment three of our Ask A Neurotype series. We have Amanda here for Ask An Autistic, which I'm so excited about. First, just a huge disclaimer, we are asking one person about their experience of their neurotype, that is not a global statement on everyone's experience.
So, with that, I'm really excited to introduce you to Amanda. Amanda and I have worked on a few projects together. She just released a fantastic book, Low Demand Parenting. And she's really active in the neurodivergent informing parenting world, especially, for PDAs or anyone wanting to learn how to parent in a low demand way.
Amanda, do I feel like I captured that right? What would you like to add? I should say.
AMANDA DIEKMAN: I am a mom of three neurodivergent kids. And I discovered that I was autistic some point in my 37th year. So, I gave myself my autism, like official diagnostic experience was my 38th birthday present to myself.
MEGAN NEFF: Oh my goodness. Wait, I love… like you went for an assessment on your birthday?
AMANDA DIEKMAN: It was two days before because my-
MEGAN NEFF: I love that.
AMANDA DIEKMAN: …birthday was on holiday.
MEGAN NEFF: I love that so much. Did you make like a cake? Like. Happy Birthday, I'm Autistic because that would have been amazing.
AMANDA DIEKMAN: The truth is that I was super ready for the assessment. I had self-identified for months and gone through a full diagnostic process for one of my kids where I was like, check, check, check all the boxes. But it's still getting the official diagnosis sent me into about a two-week swirl brain cloud where I wasn't really very present or celebratory. I was just communing with the younger parts of myself and feeling a lot of self-compassion and grief. So, I think the cake part came about three weeks after the diagnosis when I was ready to say hello world, I'm autistic. Yeah.
MEGAN NEFF: Oh my gosh, there's so much I love about what you just said. And my brain is diverging in so many ways. Like, one, just the combination of grief, and liberation, and how that is such a common experience. So, love how you dropped parts work in there, which Patrick talks about all the time. I think is so healing, especially, in that discovery process.
Yeah, I was also 37. I feel like I keep seeing, maybe it's like confirmation bias, but I feel like I see 37 pop up a lot as a time of identification. Yeah, yeah.
Well, part of your claim to fame beyond your book and your awesome resources is that you're the only autistic person in your family that's not also ADHD. Do I have that right?
AMANDA DIEKMAN: Yes, yes, yes. And some of my family members are very ADHD-forward. Like, that's kind of the leading edge of how they move through the world. So, I feel like not being ADHD in a way is a big part of what kept my wider family from knowing I was neurodivergent because they were like, "Well, clearly you don't struggle because we are all struggling and you are over there just fine."
And it made it harder for some of the places that I really struggle, like some of the social communication, and the intense inward feeling of not ever fitting in anywhere that some members of my family didn't struggle with quite as intensively. I think in some ways the ADHD kind of gave them, I don't know, some sort of social superpowers that I didn't have. But that was not as evident in the family dynamic because it seemed like I didn't have any trouble following through when I said I was going to do something. I was incredibly detail-oriented. I never lost the thread in a conversation. And those were many of the biggest skill gaps that the people around me were struggling with. So, they were like, "Man, Amanda, she's as neurotypical as they come. Like, just not ADHD."
MEGAN NEFF: Well, that's interesting because what you're describing is intact executive functioning. And so with that the autism could go missed. Patrick, do you mind muting when… I'm hearing the, I don't know if it's the right noise? Oh, there it is. Thanks. Okay.
PATRICK CASALE: I just want to jump in real quick though, Megan, because that's kind of what my experience was like, too. Although I am autistic ADHD, I think autistic parts are much more pronounced and it gets missed a lot. And I just remember, like, feeling like exactly what you said that intense loneliness, disconnection, and socially, especially. It was what really led to me seeking out my diagnosis in terms of being 35 and getting diagnosed at that time.
AMANDA DIEKMAN: Yeah, I agree. And sometimes people talk about like not having the rulebook to other people, feeling like the key to unlocking connection was always missing unless I contorted, and chameleoned, and performed, Like, became somebody else. And it felt like it was one option or the other. It was authenticity and loneliness, or it was connection and betrayal of self. And they both hurts so excruciatingly that I ended up choosing connection and betrayal itself because it felt like it was the safer way. Of course, it was very reinforced by the world around me. Masked Amanda was very well-liked. But the hard part is that the lonely authentic part of me doesn't go anywhere. She just hangs out inside. Like, no one really likes me, no one really sees me, no one really wants me that you ultimately can't betray yourself because wherever we go, there we are.
And so it was, you know, intact executive functioning in some ways. Made me a really strong masker because I was very, very perceptive and making some pretty clear cognitive loops between what other people were saying and wanting from me and then how I performed.
I sometimes envied family members who seemed like they were like, "Well, I am who I am. You know, take me or leave me." I was like, I never have that power. It was take me, take me, please. I'll do anything.
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: That internal experience feels so, I've said, like, feels so torturous, like internally, like this push/pull tug of war, and like, where do I belong? How do I show up as my true self? Do I even understand my true self? Why do I feel so disconnected? Why do I feel so lonely and isolated even when I'm around people who "care about me?"
And I just commend you for just, you know, working through that experience and naming that too. And I think, for me, I've said it many times in this podcast, like the grief relief process of like, diagnosis was grief-inducing, for sure. And it was also majorly relieving in a lot of ways after I processed the grief and some of my own internal experiences.
AMANDA DIEKMAN: Yeah, I feel so free. Over and over again, in my life, I've had people who love me really well help me to name this reality with some metaphors that have been really powerful. I'm an ordained Presbyterian pastor. And when I stepped down from pastoring, I knew… this was years before my diagnosis, but I knew that this work that we're outlining was the path ahead for me and that it was too hard for me to be a pastor and figure out who I wanted to be in the world. And I had come up with the metaphor of myself feeling like I was a turtle, that all the soft, tender parts of me were very small and very hidden. And the shell, the big, strong, capable back was like, displayed for all to see and there were all these people all over my shell. And that I was just dragging them along with me, and that I was dreaming of being a turtle without people all over my shell.
And then this dear friend and colleague pulled me aside and said, "Amanda, you're not a turtle. You're a flipping bird." And that was like my first glimmer of being autistic. It's like, I'm not even a turtle. It's not that I've got so many people on my shell and that I'm so tired, it's that I'm the wrong creature altogether. And that, gosh, becoming the bird has been because a bird-like soars and a bird has urgency, and be like alone, and in a flock, and just like the isolated, tired turtle dragging the people across the street is like all of my old self. And the freedom has been the bird.
MEGAN NEFF: That's a beautiful metaphor, I love that. Yeah, I was going to ask kind of based on that, I think the answer is yes, first of all, I love the kind of this or that scenario that you drew out of like, either I think it was authenticity and-
MEGAN NEFF: Loneliness, or connection and betrayal. Was that it? That captures it, I think, so profoundly. And I was going to ask if since diagnosis and discovery, have you found a third way?
AMANDA DIEKMAN: One thing is that I've discovered how much I enjoy being alone. So, I have recovered loneliness, that loneliness is actually still bound up in ableism. It's still saying there's something wrong with this emotional experience or something scary. And I've discovered how little social interaction I need in order to feel whole and thriving.
AMANDA DIEKMAN: It is remarkably little. And that that doesn't then make me and then like a loner, a social misfit. Like all of these labels that are put on people who really just have a very small need for social interaction. And that, like, it fills me all the way up. I'm all full, and I feel so good, and I really only need one friend that I see every couple of weeks for a short period of time, relatively. Like [CROSSTALK 00:12:16]-
MEGAN NEFF: Yeah, yeah. I love that.
AMANDA DIEKMAN: … that. So, my third way is like, maybe it's a healing and a recovery of that earlier self. I guess, it is a third way. It's saying loneliness is really not loneliness. It's being honest about what fills me up and then choosing those things wholeheartedly without label or judgment. And then recognizing that being full of myself is actually how I feel most connected to the world.
But my primary connection to me is actually what makes me feel so vibrantly alive. And that connection to other is quite secondary for me. And then I have to say that my family has become a really crucial middle space there. The more that I unmask, and that I feel truly free, and cozy, and nestled, and comfortable in my immediate family dynamic, like with my children, with my husband, that I'm experiencing, really, for the first time what it feels like to be in a flock, that I've kept myself lonely even within my most intimate connections for the before times as well. So, even with the people I trust the most, I still am holding back so much of myself, I'm still being very secretive with my true self.
And so laying aside those old patterns of protection and choosing to trust the people who have earned it is also a big piece of what makes me feel whole and connected to myself and others at the same time. It's the same work.
MEGAN NEFF: Well, and yeah, those are still reciprocal, right? Like, I actually talk to people about this a lot of, we you could be going through the motions of connecting to others, but unless we're connected with ourself, we're not actually going to feel deeply connected to others. And so I hear the both and of that, and taking the space you need to connect yourself it also has allowed you to show up kind of authentically in your core relationships, to where you're also feeling deeper connections.
I've experienced a very similar experience, especially, with my nuclear family. And, like, I was relating so hard to everything you were saying about, like being alone and giving myself permission to be okay not being social. Like, so on the SRS, it's one of the autism measures, there's a scale for social motivation. And if it's really elevated, that means you have very little. Mine is very, very elevated. It was the most elevated out of my scales.
And for so long I overrode that instinct because of all the shoulds, like I should be socially X,Y, Z and just realizing, yeah, I love connecting with ideas through books, and through taking in information, and I love being creative. And being able to actually think through do I want to go to this event? Like, it sounds so simple, but it's actually quite radical.
AMANDA DIEKMAN: Yeah, yeah, it's made a big difference in our family life for me to be really honest about this because I do opt out of a lot of things that I was participating in before. But it's actually really freeing because a number of my children don't want to go to various things, too. And so it becomes very aligned to that my partner, my husband is neurotypical with a really strong love for kind of like, busy social environments. He's a social butterfly, I guess you would say. And so, you know, if there's a soccer game, where I know there's going to be a ton of sideline conversations, and interruptions, and some kids want to stay home, like in the old times, we would have done a pretty detailed dance around who's going to do what. And now it's like, "Can I please stay home? I would love to stay home." And he's like, "Okay, awesome because I really want to go." And it's so easy. It's just like what do you want to do?
MEGAN NEFF: I love that.
AMANDA DIEKMAN: And same with birthday parties. We live in an intentional community. So, we have a lot of big community events, which my heart is with everything that we're about, but I don't actually love going to most of the events, but my husband does. So, it's just made it so easy. So, I get all of this cozy alone time with my more introverted or maybe somebody who's kind of a little anxious about that gathering, or it's just not their thing, then they always know they can stay home with me. And we're all getting our needs met.
I used to think that, like, not only the shoulds but some shame that I didn't really want to go. And so I would override it, in part because I didn't want to face my own shame. And-
MEGAN NEFF: Can I jump in?
AMANDA DIEKMAN: Go ahead. Yeah.
MEGAN NEFF: And I don't want to do reels too much into like, mom and parenting. But I think, especially, you know, we're both in kind of a heteronormative structured marriages, there's a lot of social pressure for the moms to be the ones to take the kids to the events. And same thing in my family since discovery. My husband is introverted. But he has so much more tolerance for socializing than I do. So, we've shifted, we've defaulted to where he takes the kids, or similarly like one of my kids really loves the movie theater, one doesn't. I cannot handle movie theaters. So, I'm the designated, I'll stay home with the kid. And it works really well.
And I also love how it pushes against a lot of the narrative of what a mom should be because there's so much pressure for us to be the designated social parent.
AMANDA DIEKMAN: Yeah, yeah. And I'm in the homeschooling world, also, where that is like times 10.
MEGAN NEFF: Yes, that is times 10 for your world.
AMANDA DIEKMAN: So, opting out or saying, "You know, one person can come over. I would love for one person and one kid to come over, but we can't do a co-op, we can't do, you know, gathering, I can't turn something like my home that feels super safe into something that feels chaotic. It needs to meet my needs too." And that has been so much easier to do as I've become more honest with myself.
MEGAN NEFF: Yeah, yeah. Well, can we ask you some questions that we've been asking everyone kind of about their neurotype experience as our little compare and contrast?
AMANDA DIEKMAN: Sure, let's do it.
PATRICK CASALE: You can start us off, Megan, with whatever you've got.
MEGAN NEFF: I noticed you unmuted so I thought maybe. Well, first, I feel like you've started talking about this, but can you tell us a little bit more like what is your experience of small talk and kind of socializing I guess, in general?
AMANDA DIEKMAN: Okay, I experience small talk, especially, in an environment where there are multiple small talk conversations happening all at the same time. It feels to me like being in a rushing river. It feels like I will drown here and that my first mode is actually to try to dissociate in order to float. I imagine myself I'm like thrashing and kicking trying to participate in this moment. And instead, I kind of like go under, and put my head back, and I drown out the sound. It's like, it all turns into a moo moo, like when you put your head under the water, and I'm just like, just make it, just stay right here.
I'm remembering imagining myself, one of the last parties that I went to was a while back. And I usually cling pretty tightly to my partner in these environments because of that drowning feeling. It's like, you're the only person here that I feel like I can anchor to. And he went inside to do something. And so I was out all by myself. And I feel so acutely aware of my body. Like, I turn into like a reptile or something like that. And I sort of start to slowly move away from the conversation that I'm a part of, like, maybe if I just like, take tiny steps away, I can extricate myself from this.
And so I eventually went and sat, there was like a bunch of people chatting, and there was one table. And I went and sat at the table by myself and just ate. I just, like, shoveled food. And my husband came and found me later and he was like, "Do you need saving?" And I was like, "No, I'm okay." And he said, "Well, there's a person over there that is interested. I think they study autism and medical care, something like that. And like, do you want me to introduce you?" And I was like, "Yes, that would be great."
And so then he kind of like found me a person that I could special interest with. And I said, "Do you mind if we moved to this corner of the yard?" And we had like a deep dive conversation separate from other people and I was able to really enjoy that.
But it's so acutely different that, like, it's a kind of a panic reaction to in terms of what my physiology is communicating. So, I'm guessing that both parts of my nervous system are hitting it hard.
And what I think is so confusing, it always has been confusing for me, is that when I disconnect from my genuine self, like, if I completely disconnect from my body, I'm actually really good. I can fake and I don't know how fake it is. I can perform small talk really well, where the other person would never know how hard I am working and the cost. And so I didn't know because I kept the reality of the experience that I was having way under lock and key. But of course, like many people, you know, it just came out in all these other ways. Like, why am I so chronically anxious? Why am I depressed? Why can't I accomplish the things that I want to in life? And it was kind of all bound up in this round neckly extremely stressful social situation that I kept getting myself into. As a pastor, I did [CROSSTALK 00:24:16]-
MEGAN NEFF: I was thinking about that. I was like, if you were a pastor there's a lot of small talk that goes into that, yes.
AMANDA DIEKMAN: So much. And sometimes I was able to quickly steer it into deep talk. But usually, I was suppressing just how intense the embodied experience is that I was having.
PATRICK CASALE: I actually want to ask you about the... that's a good segue as well, is during small talk, right? When you're noticing these experiences now, maybe not in those moments beforehand, what are you experiencing behind the scenes when you're feeling like trapped in terms of like, are we mimicking gestures? Are we mimicking body language? Are nodding our head a lot? Like, how was eye contact as well?
Because I notice for me when I'm in a masked state, I feel this need to like nod my head a lot, and validate, and socially reinforce, and like make more eye contact, even though it's unbelievably uncomfortable for me instead of being able to just look away, or look down, or look to the side. And what I'm experiencing internally is, like, this constriction feeling of like, how the hell do I get out of this?
And I do a lot of, I won't call them Irish goodbyes anymore, but I'll call them autistic goodbyes maybe, but I definitely don't do a good job of it. Like, if I want to get out of the conversation, I do not do a good job of like saying, like, "Hey, I'm going to leave. Goodbye." I'm just like, "I'm getting out of here." And I just pack away.
AMANDA DIEKMAN: I do the same thing. My goodbyes are one of, I think, that's like a clear place that I've never been able to mask. I have always done something where I like make it clear it looks like I'm going to the bathroom or like, "Oh, I got a call." And then I just leave instead. I still do that.
MEGAN NEFF: Yeah, me too, me too.
AMANDA DIEKMAN: All the time.
PATRICK CASALE: All the time, all the time.
MEGAN NEFF: [CROSSTALK 00:26:06] like wrap up a conversation. I mean, every week on this podcast, I'm like, "Patrick, you do…" I actually was just having an anxious moment Patrick might hop off early today. And I was like, "Oh, shit, am I going to have to say the goodbye." And I was starting to script like what does he say every week? Like, why are goodbyes so hard?
PATRICK CASALE: It's so true. And I do the same thing, Amanda. Like, I will pretend I have a phone call. I'm like, "Oh, hey." And I like put it to my ear. And I'm like, I just walk away. And then I just put the phone in my pocket. Like, it's clearly not illuminated. Clearly, nobody's calling me, there's no voice coming out of the other side. But I have to get out of there. And when I have to get out of there, I have to go immediately. Like, it has to be like that. It cannot be like a long drawn-out process.
MEGAN NEFF: Oh, longer goodbyes are so awkward because you, like, keep summarizing, like, "Have a good week, have a good week, good to talk to you, good to talk to you. Bye-bye." It's like what is the closing statement?
PATRICK CASALE: Yeah, you get caught in this loop of like, continuously saying the same thing over and over, hoping for that like, exit point, and then you can't find it. So, you have to like force the issue. And my face will just shift completely. Like, it'll be like, looking for the exit very dramatically. And like, I don't know how to get out of this situation, I'm out.
AMANDA DIEKMAN: Yes, well, the only thing I would add to all of this around, like what's happening in my body when I'm masking really heavily is I get increasingly rigid in my body. So, I start to lock my knees, then I'm flexing my thighs, then my hands are starting to turn into little grippy balls, then I start clenching my jaw. It's like my whole body is freezing up. And I often lock on eye contact which people have always commented, like, that I'm such a good listener but I never look away. I am, like, zeroed in and like, the looking away and knowing when to look like, I can't do that. But if I'm really going to be in touch with myself, any kind of truly difficult question like, "What do you want for dinner?" I have to close my eyes. Like [CROSSTALK 00:28:30]-
MEGAN NEFF: …couple of questions like what do you want for dinner? Because that's so true.
AMANDA DIEKMAN: Yes. Like, if you guys asked me, like, you'll know it's a hard one when I'm like, I have to close my eyes. Like, there's just no way for me to know what I think unless I shut out the visual stimulation.
MEGAN NEFF: You did that just a minute ago when I asked you about small talk. You took a moment, you shut your eyes. Yeah, yeah, yeah.
AMANDA DIEKMAN: Yeah, it's a need and yet it's one that I have overridden with this intense eye contact.
MEGAN NEFF: Yes, yes, okay, that's right. Is there any other autistics specific questions, Patrick, you want to ask before I hop on the like ADHD verse autism questions?
PATRICK CASALE: I always like to know, socializing is always the big one. I like to always know about like transitions and like changes unexpectedly and abruptly, how those feel or experience. I also think about, like, food consistencies, textures, things like that. But ultimately, special interests, all of those questions are the things that come to mind. But I am happy to sass out the two between ADHD and autism as well.
MEGAN NEFF: Well, those are great questions. Amanda, you just heard a bunch basically, yeah, all the autism criteria, special interest, sensory stuff, routine disruptions, which with a family full of ADHD, I think you'd have a bit of. Like, are there any of those that are grabbing your attention of like, oh, yeah, I want to talk about that.
AMANDA DIEKMAN: I've always had an uneasy relationship with routine. I always craved it as a young person and I would generate a lot of very rigid routines. But in a family of ADHDers, it was really difficult for us to ever stick to any of them. And so I created a idolized persona of myself, where I am very consistent and routine-driven. And then as I've grown into myself as an actual adult, and not the fictional adult I thought I wanted when I was a kid, it turns out that I actually much prefer to have free and open time where I can move through it without a sense of how it is supposed to be that actually scripting my own day and following a regimented order is more of a stress as, what did they say? That the autism criteria are actually autism stress behaviors. Like, I think that that is actually a stress behavior for me and not actually a safety and flow need.
And that, if there are too many things expected of me, then that produces stress. And then I get very regimented on how I will do all of those things. But when I do what I do, which is drop all those demands, release the expectations, and do the proactive and deep work around restoring a sense of flow in life that actually works for me, very few externally driven routines, I'm very much in tune with, what do I feel like doing right now? What might feel good to my body?
But I think, in a way because I'm not ADHD, just to kind of get to your, I don't have quite the same sense of time blindness. Like, I don't lose myself in quite the same way. And so I feel like I'm able to follow the flow without it completely derailing like the things that I want to do with my day. Like, I can hold the kind of loose agenda, and follow my flow, and feel like it'll probably all get done. Like, that's the thing that I can have confidence in, which I think, and I've never been autistic and ADHD, but I think it's hard to feel that sense in yourself. Like, I can do these things if I just follow my flow.
MEGAN NEFF: That's so interesting because I I've always thought of this as hyper fixation, but maybe it's more hyper-focus. I have a hard time, kind of, I'll create a structure for my day or a to-do list. But then what will often happen is I'll end up spending like eight hours deep in a workbook, when I like set out to be like, I'm going to do three hours of admin, email, like charting. But then I'll get into a project, get really focused, the day has gone by, and I have no inertia to go do the boring things. But does that that happens to you less? Like, if you're like, I'm going to do these things today, you just do them?
AMANDA DIEKMAN: So, like yes and no. I can only do three things in a day and sometimes more. And it depends on if they're hard things. Like, if I have to call and make a doctor's appointment, it's just one thing.
MEGAN NEFF: Oh, yeah, yeah, nothing more.
AMANDA DIEKMAN: That's it. Yeah, it is. And I know a lot of people talk about, like, you kind of sit around waiting for five hours, and then you do the thing, and then you decompress for another four hours. Like, that is actually my real life. I am spending a lot of that time, you know, with my children. And it's not empty time. But I only do one hard thing a day.
And I think that's one of the ways that, like, I am autistic in that, sometimes my capacity for those challenges is pretty limited. But I can find a time in my day when I will want to do it. Like, that's how I feel about daily tasks, like not every day do I find a time where I want to wash the dishes, but almost every day at some point I want to do it. But if I say I always do it first thing in the morning when I wake up, and then I don't want to do it at that time, that can really throw me off. So, I'll just say, like, pay attention to yourself, when do you want to do it? When is it the right match for energy?
MEGAN NEFF: I love that. I do a ton of that, of like I have tasks, but then I pair it to my energy because my energy is all over the place. Sometimes it's physical energy, sometimes it's cognitive energy. And that's been probably one of the biggest accommodations, or the best accommodations I've given myself is to create enough space in my life where the tasks can pretty much pair with the energy. And I love that. Before like that created a lot of strain and stress in my body, when I was like doing a task that was in conflict with the energy I had.
AMANDA DIEKMAN: Yeah, I agree with that. And a lot of times I would be doing it out of somebody is putting a lot of pressure on me to do the thing. Like, you really need to do this, you really need to do this. And that just increases my stress and resistance to doing the thing.
And so if I feel a lot of stress, like, well, recently, I got a computer a while back, and I really needed to get AppleCare on it because we have so much issues with broken technology around here. And the harder my husband reminded me to do it, the less likely I was to do it. And guess what? I never did it. And then it got broken. And he was like, "Did you do it? Like, I really wanted you to." And I was like, "I know, I didn't. I really didn't." And then I felt really terrible because like he tried his very hardest to get me to do it.
And I started to like, maybe I don't deserve a new computer. You know, this was my fault. And I really appreciated the way that my husband pivoted, maybe this is a good example of what it looks like for the people in our lives to be accommodating. Because he was like, "You know, it's okay. This is one of the costs of having a disability that people don't see. And it's okay, you couldn't do it. And next time, we'll put it in my name so that I can do it for you, that asking you to do it was too much."
Because sometimes I can tell right away that the task is not like at some point, my energy is going to match this task. Like, my energy will never match this task. That's how it was for me with the AppleCare. Like, I was never going to get it done.
MEGAN NEFF: Yeah. First of all, I love that as a response from your husband. That's really beautiful. I've mentioned similar stories with my husband where things that, yeah, are expensive that I like start having so much shame about where he stepped in and be like, "You know what, that's part of your brain. You also like use your creativity in your brain to bring in income, and there's like…"
Like, actually I had the other day, I realized a pretty significant oversight that cost my business quite a bit of money and I don't know if you've seen those reels of like the ADHD tax for personal life? I was like, "Oh my gosh, if I applied the ADHD tax for my business, it is substantive." And again, this is part of our brains, it's going to happen.
But that's actually pivoting me to a question I wanted to ask you, which is around the interest-based nervous system because I've gone back and forth on putting that in the middle of my Venn diagram between ADHD and autism. But part of what I heard in that was, it was hard for you to get yourself to start that task. I'm curious, does the interest-based nervous system so that idea that if it's outside of an area of interest, or urgency, or novelty, that it's really hard to get started? Does that resonate with your experience?
AMANDA DIEKMAN: Just say those things one more time, I just need [CROSSTALK 00:40:51]-
MEGAN NEFF: Interest, urgency, novelty.
AMANDA DIEKMAN: The category I would put on there that you didn't mention is like, love or service. Like that is what enables me to do that.
MEGAN NEFF: This is my… Well, actually, my theory is much colder than you, my theory was that if you add duty to it, then that's the autistic experience, that duty. But I love how you put it in more relational terms of service. And that is very motivating for autistic people. So, that's so funny that that was exactly the theory I was working with, yeah.
AMANDA DIEKMAN: Yeah, my oldest is autistic and needs, like, cleanliness, and a certain type of cleanliness is a really high bar for him. But it's really difficult for me to execute with our family structure. And so the only thing that gets me over the hump to do it is I think about how much I love him and how much he needs this and then I can do it. I don't need novelty, I don't need… Actually, some of those things hurt me, urgency really hurts me.
MEGAN NEFF: What? That was my hypothesis was I think autistic people are probably more prone to kind of get paralysis and its urgency. I see that, the pressure. Whereas for an ADHD system, it's like, okay, let's go. So, that was another one of my kind of theories around that was the urgency would actually backfire.
AMANDA DIEKMAN: Yeah, yeah. Interest is always going to be, you know, the way in.
MEGAN NEFF: Yeah, yeah, absolutely.
AMANDA DIEKMAN: I'd put that at the center of the diagram.
MEGAN NEFF: You would say, like, interest and then, like, relational care service would be two drivers. If it's outside of those two, is it hard to get yourself started on a task?
AMANDA DIEKMAN: Yeah, yeah. Pretty much everything else is hard to get started on.
AMANDA DIEKMAN: Yeah. If it's not an area of special interest, or it is not in service to someone I love, that's pretty much everything I don't do.
PATRICK CASALE: Speaking of special interest, what special interests do you have? Or have you noticed over the years?
AMANDA DIEKMAN: A friend of mine, where we're kind of kicking around things about our neurotype lately, and she said, "Is it okay to say that I think I'm my own special interest?" And I was like, "It's okay to say that." That really struck a chord with me. I think that deep introspective work about me, like I have always been one of my own favorite subjects. I am the easiest thing for me to talk about. It's part of the reason that I have really enjoyed podcasting is that it takes away the obvious 50/50 reciprocity of most conversations, and it's like I'm expected to talk about myself 90% of the time, and that feels so easy.
And my children have been a special interest for me since they were born. I got really hyper-focused on understanding autism for a season when that was my number one special interest in parenting. Parenting with radical acceptance at the center is the other thing. And I pretty much think about all those things all the time.
My kind of less known special interests are, Disney World is one. I'm wild about Disney World. And when we were talking about connection, like fiction reading, historical fiction about women, especially, if it's like fantasy historical fiction about like, ancient witches and stuff like that, like that is 100% my jam. And I get a lot of connection from like the ancestors. And sort of a sense of like, alternate identity. Like, if I'd been born in another time and place, like who I would have, yeah.
PATRICK CASALE: I can relate so hard to that, like so hard. Yeah, I got to jump off of here, but you all are going to continue the combo. So, I appreciate meeting you and having you on for this. I just wanted to say that before I get out.
AMANDA DIEKMAN: Thank you, thank you.
PATRICK CASALE: As much as I hate saying goodbyes. So, goodbye, see you, Megan.
MEGAN NEFF: I love how you made a business out of your special interest. That's something Patrick and I both also done and I don't think I could run a business or really do work outside of my interest because it would be so, so hard.
AMANDA DIEKMAN: Yeah, I've never even fathomed it really. I think it's always felt so utterly impossible. And when I was a pastor, and well, before I was a pastor, I think that my sense of inability to get like a job, and how deeply I have known that, and how long I have known that is another piece of this, like self-knowledge that has always been really clear. Like, I have absolutely never been able to imagine myself doing almost every job I see other people doing. And really any job that's handed to me because it has to be my unique view of the world in order for it to be a fit.
So, even though I was completely consumed and engrossed in theology, and church history, and social action, and the way that we can, like, corporately represent our values in the world, I was like, I could never serve a church because I mean, I could never be a part of a system like that. I've never been able to participate in a system. One of the ways that I compensate or work around that is that I always am the leader of everything that I'm a part of, and then I infuse it with my interests.
MEGAN NEFF: So, that was one of the reasons it was hard for me to see myself as autistic is, like, I'm pretty good at leading groups or creating groups. But then I realized that, especially, when I went through my doctoral training, I realized I had a hard time developing friends within my cohort. But what I became was like, my supervisor or mentor called me like the TA extraordinaire. Like, I would TA all the classes, I would lead groups, and I can mentor people.
And again, that's not a reciprocal relationship. Therapy is not a reciprocal conversation, I mean, to some degree. And so I found myself in these roles where I could, like, kind of hide the reciprocal aspects that were harder for me. So, yeah, it's interesting.
And I also did seminary, we've talked about that. And theology was a special interest of mine for a long time. And I thought I was going to become, like a Hebrew scholar, was my first school, which would have worked well, right? That's reading, and research, and writing, and teaching, which is, again, not very reciprocal. The church would have been hard for me, too.
AMANDA DIEKMAN: Yeah, I've also gravitated to those kinds of roles where I'm in deep connection with others, but where I'm playing a specific role in their life, that I find it easier, you know, again, to use the parts where it's like I'm choosing only one part, and occupying that, but like being the fullness of me is harder. And so I can be teacher Amanda or I can be pseudo therapist Amanda. But all of those are pretty narrow slices of me, and that's what enables me and they're non-reciprocal relationships, yeah. Usually, where I'm in a giving role. Although, I can sometimes flip it where I'm in the exclusive teaching role. I'm also good at that.
MEGAN NEFF: Right, when you're teaching, or you're coaching, or you're on a podcast. Yeah, yeah. That's actually one of the reasons I think a lot of people that go unidentified is like when we're in the helping role, it's still a non-reciprocal conversation, but people aren't expressing concern about that. And so, you know, we go under the radar, under the autism radar, yeah.
MEGAN NEFF: Because you could be like a good helper and a good listener.
AMANDA DIEKMAN: Yep. It's very reinforced as well. And so you become more and more that role as people are like, "Wow, this is you, you're just so this." And you're like, "Oh, this must be me." This is just so… But it's really a very, very small [CROSSTALK 00:50:04]-
MEGAN NEFF: Well, and that gets so complex, right? Because that becomes, I think, for a lot of us, I know for me part of our core identity because it's so reinforced that then to unmask for me meant to give up this part of my identity that had been so reinforced and valued, that that's its own complex process of giving up that, accommodating-
MEGAN NEFF: Yeah, yeah.
AMANDA DIEKMAN: Especially, when the identity that came before it, largely for me, when I was younger, and before I took on that role so very, very fully, was like, "You're too much, you're so picky." So, I was like, "Oh, okay, then I'll become super flexible and the nicest person you've ever met." And everybody liked that version much better. And the first one was actually much truer. And so that also makes unmasking feel extra risky.
MEGAN NEFF: Yeah, for sure, for sure. Yeah, yeah. Okay, I want to ask one more, maybe two more ADHD questions, and then I want to be cognizant of your time as well.
Okay, I just did a deep dive on RSD, rejection-sensitive dysphoria. And the research really comes out of the ADHD research. It's also common among autistic people, but it's unclear if that's because of co-occurring ADHD or if it's just a shared experience.
And again, to summarize, RSD is kind of like an intense response to any perceived rejection or criticism. A lot of people with RSD describe it as like will have a physical pain, like a gut punch or kind of chest pain. Is that part of your experience?
AMANDA DIEKMAN: I've actually thought about this a lot. So, as with the things I've thought about a lot, it's like I could tell you 20 minutes of things about it, but I'm not sure how to summarize. I think from sitting with this question, I do not experience it very often. I have experienced it enough that when you say those words, I can feel the echo of sensation in my body, like I have felt that. But it's not a common experience for me. And I think that it's possible that because of that, the mechanism that's leading to it is different than for people with RSD.
MEGAN NEFF: Okay, so like, I'm going to bring it to practical, we're both on social media. I'm at a point where like, every time I open the app, I have a stomachache. Like, I actually struggle to open the app because of, like, if there's a negative comment on a post, I will think about that all day and it might even carry over to the next day. Like, last week, I had a Venn diagram that there was a lot of dislike of the Venn diagram I put up.
And like that ruin my day. And I hated that it ruined my day. And then I like, hated that I hated that, you know, those spiraling emotions.
You're on social media. I imagine that some of your posts don't get all love because these are controversial topics. When you have a negative comment, what is that experience like for you?
AMANDA DIEKMAN: My primary emotion is shame, and hide, and never show up again. I want to withdraw-
MEGAN NEFF: Okay, yeah. I relate.
AMANDA DIEKMAN: …and retreat, yeah. And so one of the things that feels good to me and that is, I have like a little thing that I say to myself, I say I'm just a mom in North Carolina. Like, I try to remember, I'm like, I'm just another human. And it's a way that I also remind myself that I don't have to be anything. Like, my identity is not what's out there in the world being judged like that resides with me and me only. And also just like a little, like, I can always quit. Like, I can always just stop being Low Demand Amanda and just be a mom in North Carolina. Like, I'm not stuck.
Sometimes I will get into like a pretty lengthy argument with the person inside of my head. I don't love that because I'm giving them a lot of real estate in my head and I really don't enjoy doing that.
MEGAN NEFF: Yeah, yeah.
AMANDA DIEKMAN: Something that I really like to do that is like, kind of celebrate that like my ideas are big enough that people don't like them because I have aimed to be likable my whole life. Like, that's been the sum total of my energy in the world was like, "Please like me." And so sometimes I can bring it around myself and be like, "Wow, like you're something. You're something and you're someone. And so people aren't going to like it."
But like, that's my goal. I've been trying to do that, so it can help me to…. So, I'm not really answering your RSD question. It probably is, though because if I'm able to pull all of these mental resources in, in the moment, I'm probably not spinning out at quite the same rate as other people might be.
MEGAN NEFF: Yeah, so the big like, kind of one of, like, the litmus tests that I use is so for normative rejection sensitivity, right? Which this is like makes sense from an evolutionary perspective, it's proportional to the criticism. For RSD it's out of balance, right? So, like, your ability… it does sounds like it stings and then you have an ability to come in and self-soothe. And then, like, yeah, how long does that process take till you've released it and it's not like, in the back of your head?
AMANDA DIEKMAN: It can be as quick as a kind of a like five minute about that-
MEGAN NEFF: Oh, my God.
AMANDA DIEKMAN: …that really hurts.
MEGAN NEFF: That sounds pretty nice. Okay [CROSSTALK 00:56:14]-
AMANDA DIEKMAN: I'll go swing or something like that, like some kind of intense body movement and it'll move through. Sometimes it takes a couple of hours. But I can usually flesh it out with some really vigorous play. I usually have to get really immersed in like some other part of me in order to release it, yeah. Definitely a playful self yeah.
MEGAN NEFF: Yeah, yeah. I've been experimenting with like, reducing how I'm on social media, or I have played around with just leaving, but I don't think I will. But partly for exactly what you said about like, the mental real estate of I don't want that being the thing in my head. But your experience does sound a bit different than mine in regards to like, how long it lingers. I do a lot of that self-talk, too. But it's like, I have to keep doing it because it'll keep coming back. And so the releasing takes a little bit longer for me.
AMANDA DIEKMAN: Oh, I'm sorry. That sounds hard.
MEGAN NEFF: Yeah, yeah. You know, it's interesting, I've actually seen a lot of autistic advocates leave. And I am not at all surprised. I understand. And ADHD advocates. A lot of us have, I think, kind of a short lifespan in the advocacy space, which I think is really sad. And I think it's really understandable.
AMANDA DIEKMAN: I agree, I agree. Something I'm wrestling and struggling with right now, too, is like, the way that privilege intersects with all of this. And it feels like so inescapably true that my privilege is a large part of what enables me to be the advocate that I am because of all of the supports that I'm able to put in place for myself to show up this way. And also that that is then making the message itself more difficult for people to hear because it is wrapped in my own privilege. And yet, I don't want to not do it because I think of all of the people who are saying, "You're the only one saying this stuff, we need you to keep on going."
And it's not that I'm only doing it for others, it also comes out of me and an alignment there. But it's a complex picture to sit with. Like, if someone was less privileged than I am, they wouldn't be able to withstand the challenge of being this kind of advocate and so people are leaving, and so then we're losing those voices in those spaces. And yet, I can't be the only voice on this or the message is going to get very convoluted by my own privilege.
MEGAN NEFF: No, I love that you bring in that lens of privilege because that absolutely intersects in so many profound ways. And yeah, like I was sharing my experience with someone with a ton of privilege, most specifically white privilege, and I think that it is like, yeah, when I look at particularly trans autistic advocates and BIPOC autistic advocates, like the level of risk they take, and just the crap they have to deal with, the terrible, terrible stuff they have to deal with. Yeah, yeah, I really appreciate the work of the people who are out there. Yeah, and I feel a lot of sadness when they ultimately, many of them often have to leave for their safety or their well-being. And I think that says a lot about where we are in the movement and where we are in society, yeah,
AMANDA DIEKMAN: Yeah, I agree. And as my children move into some more vulnerable identities, that also makes me less and less able to kind of embody the transparency that I want to have in protection. So, there's also different roles that we need to occupy for the vulnerable people in our lives.
MEGAN NEFF: Yeah, no, absolutely. I asked Patrick to take a reel down previously because I was like, "This doesn't feel safe." Because it was like a reel where I share a lot of my identities and like, we're a very neuro queer family. I was like, "I've gotten one too many death threats around this, so can we take that off?" And it is, especially, when you're thinking about vulnerability of family. Yeah, gosh, this just felt heavy, Amanda. I just like felt a wave of heaviness.
AMANDA DIEKMAN: I feel that too. I feel that too. And I think that maybe it's not RSD, right? It's like, there's nothing out of proportion here. Like, this is a very proportionate reaction to the incredible risk of being alive today in the intersection of, yeah, like you said, like neuro queerness. Like, it's not safe. And even those of us with tremendous privilege are still feeling just the acuteness of the unsafety. And that tells you, like you said before, like, of course, anybody who is embodying even more vulnerable identities, it just becomes unbearable.
MEGAN NEFF: Yeah, yeah. Absolutely. I feel like I'm wanting to transition us either to the end or to like, back but I'm also realizing… like, I'm feeling the heaviness of this and like, how forced of a transition that feels in this moment.
Yeah, I want to say I really appreciate the work you do because I know, I actually saw like a pretty, pretty big creator in the ADHD world, like, criticize the summit that I was a part of. And I think it was actually because of an infographic I made that went viral. And then like, they were completing it with permissive parenting, which is a really shallow understanding of low demand parenting. And I was just like, "Oh my gosh." Like, it made me really thankful for the work you do, just realizing how I'm sure you get a lot of people who are like getting a two-second bird's eye view of what you do and making a ton of assumptions.
And I've had so many people who typically are on my email list, and they've heard about your resources who are like, "Thank you so much. Amanda's work has changed our family's life." So, I really, really appreciate that you're showing up even though it is a risk to our safety, and it does take a lot of spoons and a lot of our resources.
AMANDA DIEKMAN: Yeah, I saw yesterday somebody put up the book cover on autism inclusivity. And I was like, "What do people think about this?" And my heart just dropped. I was like, "Oh, God, like, this could be anything." You know? Like, because that space can be, it's gray and also they can really be harsh.
MEGAN NEFF: Oh, yes.
AMANDA DIEKMAN: And it was mostly positive. But yeah, it does feel really hard. Like, I want people to get this message. And yet, every time there's just a world of people who are going to misunderstand and I do get a lot about permissive parenting, like a lot, a lot, a lot, a lot. And I'm trying to recover permissive parenting.
I wrote a piece… I'll send it to you if you're interested in about, like, why I even question, I'd be curious from, like, you've read so much research is like, whether the original research even found that permissive parenting has the lowest or the worst outcomes? Like, I even wonder and I haven't gone back. I only didn't know if I would have the skills to deconstruct it. But just whether or not that was actually just capturing neurodivergent parenting, even then, that people that, like, the other two, they only gave three categories, right? So, everybody fell into something. And so anybody who was, and I looked at all the measures, and stuff of like how they, and equality with your children was one of the key differentiators between authoritative and permissive, and that no matter what, if indeed it was capturing neurodivergent parents back then, then they were never going to score as well on the standardized testing and the markers of success that were generated in the 60s.
MEGAN NEFF: It's really interesting. I'm not sure that's a factor. I personally do still think the research around permissive parenting and like how that impacts children and children's mental health and self-efficacy, like I do believe in that research, but I don't believe low demand parenting is permissive parenting. So, I think that's where I would tease it out slightly differently because part of what's the classic definition of permissive parenting is kind of that level of, well, okay, we are very much diverging.
AMANDA DIEKMAN: We are, we're way off, we're way off.
MEGAN NEFF: So, Amanda, you've got fantastic resources. I know people and families really benefited from them. Tell us where people can find you, if they want to connect with you. I don't know if you're still doing one-on-one coaching or if it's mostly group coaching, but tell our listeners where to find you.
AMANDA DIEKMAN: I would love to connect. The best places to find me giving things away and sharing with the world is on social media through Instagram and Facebook. I'm Low Demand Amanda, Low Demand Amanda. And also I have a quiz on my website called Why Are Things So Hard? That can help get a sense of what you might be up against if you're a parent and you're trying to figure out, yeah, that question like, why do I feel like I'm drowning?
And then one next step that you can take to begin to get either to start floating or to get a life raft out there in the deep end. I also love to share in in groups in deeper ways about this method and about learning how to take care of ourselves, and caring for neurodivergent parents is a real passion point of mine right now.
So, I'm running group coaching. And I'm just starting in the next month a mastermind group that's going over six months with live retreats where I can get off of the computer and into real face-to-face connection with other people and really designed around deep care for neurodivergent moms in particular. So, I feel like I'm getting closer and closer to, like, what my real deep purpose is in the public space.
MEGAN NEFF: I love that. And I love that you're incorporating embodied work every time I meet with you. And though it's all been over Zoom, like you have an embodied feel to you. So, I'm not at all surprised to hear you're hosting embodied retreats. I worked for about a year or a year and a half over an autistic moms group. That was like one of the highlights of my month because it is really rare to find a space where we're moms and we're not talking about our autistic children, we're talking about our experience. I love that you're leaning into that right now because there's so much need for spaces for neurodivergent parents.
AMANDA DIEKMAN: Yeah, I would say like people find me in the world if you are a drowning mom thinking, why am I messing this all up? Like, you're my people because you're not, but the game is rigged. So, we're going to start, like, to change the roles.
MEGAN NEFF: Yes, yes. Well, Amanda, thank you so much for coming on. I think sometime we'll have to have you on to talk about the work you actually do, which is like low demand parenting and caring for neurodivergent parents. So, if we do, I know people have been asking for parenting episodes. So, if we do a parenting episode, we might have you back on if you're willing. But thank you so much for being our representative autistic person without ADHD.
AMANDA DIEKMAN: It's a pleasure. Thank you.
MEGAN NEFF: So, new episodes are out every Friday on all major platforms and YouTube. And you can like, download, subscribe, and share. Thank you so much and goodbye.

Friday Oct 27, 2023

Would you describe the way you feel as you walk through the world as having raw, exposed nerve endings? Or would you say that you just flow through the world able to smoothly transition throughout to day to handle whatever comes your way?
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Jennifer Agee, a neurotypical mental health professional, about her experience moving through the world as a neurotypical in comparison to the experiences of autistic individuals.
Top 3 reasons to listen to the entire episode:
Understand some of the ways allistic neurotypicals might experience small talk, context cues, and pivot in social situations.
Identify the ways in which neurodiverse couples communicate and adjust for sensory needs so that both partners can have their needs fulfilled.
Hear some personal stories from Patrick, Dr. Neff, and Jennifer about how they experience travel, dating, marriage, and daily life in different ways.
We want to give this disclaimer that this episode only highlights the experience of one neurotypical person, but it still gives a glimpse into the unique ways that various neurotypes experience the world.
More about Jennifer Agee:
Jennifer is a Licensed Mental Health Therapist, Professional Entrepreneurial Retreat Host and Coach, host of the "Sh*t You Wish You Learned in Grad School" podcast, an internationally known speaker, and owner of Counseling Community, Inc. and Counseling Community KC. Jennifer stepped away from seeing clients in January 2023 and is now focused full time on clinical supervision, strategic business coaching, leading retreats and continuing education. Jennifer is a mental health regional spokesperson for a national healthcare company and pursues entrepreneurial opportunities utilizing her educational and therapeutic training to benefit the community in non "butt in seat" ways. She has a passion for helping therapists not only become excellent clinicians but solid practice owners.
Jennifer’s Website: https://counselingcommunity.com 
Jennifer’s Facebook: https://www.facebook.com/groups/destination.ce.retreats 
Jennifer’s Instagram: https://www.instagram.com/counselingcommunity
PATRICK CASALE: Hey everyone, you are listening to another episode of the Divergent Conversations Podcast. And today we are continuing on our series of our neurotype interviews. And I'm really excited to have Jennifer Agee here today who's an LCPC in Kansas City, and a business coach, and my business partner in retreat planning, and a podcast host, and all the things, owns a group practice out in Kansas City as well.
And today's part of the series is going to be neurotype Ask An Allistic, specifically, a neurotypical. And Jennifer and I just spent 30 days traveling together in Europe. And we're going to talk about how that experience was vastly different for both of us. But Megan wanted to have you kind of set the tone per usual and just kind of define terms, and then we can get into it. And Jennifer, thanks for coming on.
JENNIFER AGEE: Thanks for having me.
MEGAN NEFF: Yeah, so there can be some confusion sometimes around neurotypical allistic all these terms. So, allistic is just a non-autistic person. So, last week when we had Dr. Donna Henderson on she was allistic because she's non-autistic. And then a neurotypical would be someone who doesn't identify with any form of neurodivergence. So, now we have Jennifer here, who is both allistic and more specifically, a neurotypical allistic.
PATRICK CASALE: Jennifer, what's the first thing we said to you when we got into this room about [CROSSTALK 00:01:31]-
JENNIFER AGEE: I don't remember what you said, but I said, "I don't know what is going to happen today but I'm here for it." And you both laughed.
MEGAN NEFF: That is just so, like, I would never say that. Or I would never feel that. I wouldn't be say it if I was masking. I would never feel that. And I love that, that it's… So, like, you didn't totally know what was going to happen today but you're just cool, go on with the flow.
JENNIFER AGEE: Absolutely. And Patrick knows me well enough, especially, even in traveling with me that that's really me all the time. I really do feel that way. If something happens, I'll pivot, no big deal. If a room's uncomfortable, I can be a little uncomfortable.
And one of the things that was super apparent to me when we were traveling together is that we really do walk through the world in wildly different ways of how we experience it. And towards the end, I said, "I just feel like you walk through the world as a raw, exposed nerve ending. And for me, I'm just flowing through the world. And it's very apparent in spending this time together that that's what's happening."
MEGAN NEFF: I love that imagery of flowing through the world and Patrick actually brought that into a podcast, which is really interesting because I've used a similar metaphor to describe both my daughter and myself. Like, our nervous system being outside our bodies and the idea of flowing through the world. Gosh, I'm experiencing a little bit of envy right now, that sounds really nice.
PATRICK CASALE: I'm going to give you a real-life example of this because it just happened like an hour ago. I was talking to Jennifer. We have a retreat coming up in Portugal in October. And I said, "I'm really concerned that the retreat host is like, not very communicative, he takes about 10 days to respond. My mind goes to like, what are we going to do if this person just keeps our money? We have to refund 30 people." And she's like, "No, we'll just pivot and figure it out." And I'm like…
JENNIFER AGEE: And we would, and we would. And here's a part of why, actually, this combination of the way Patrick's brain works and my brain works is a good combination, where I say, "Yeah, we'll just figure it out. Like, we'll pivot, we'll make it awesome. It'll kick ass, it'll be great."
And I know that his anxiety is going to be so freaking sky high around it that he will have contacted every person he knows in Portugal he would have made contact somewhere. Like, we would have pulled it out of our butt if we had to, but it's going to be great, it's going to be great.
PATRICK CASALE: This is a good example, Megan, of like, what every day together in Europe was like for 30 days where I was, like, struggling so much and I'd be like, "Okay, this is how I'm experiencing today." And Jen would be like, "Oh, I have like, opened my window. And it felt like I was in a Disney movie. And I was really excited to be here. And I slept really well. And I talked to nine people across the street about, you know, various things." And I'm like, "What the hell is happening here? This is so strange." It was a very good glimpse, though.
JENNIFER AGEE: It was. I think both of us had a good glimpse into the real way that our behind-the-scenes work in traveling together, for sure.
MEGAN NEFF: So, I keep thinking, like, my brain keeps going back to the Big Five. I don't know if either of you are familiar with the Big Five sometimes called the OCEAN. It's actually my favorite tool for understanding personality because it's non-pathologizing. But as I'm sitting here listening to you talk I'm like, kind of seeing your Big Five in my mind. Like, I imagine you'd be very high in openness and very high in extraversion. Have you taken the Big Five? Like, do you know…?
JENNIFER AGEE: I haven't taken that assessment, but I am very high in openness and I am very high in extraversion, for sure.
MEGAN NEFF: Yeah, yeah. Because I'm also like, yes, you're allistic and neurotypical, but I'm also picking up some strong personality traits that would also factor into this. I'm just realizing how complex this conversation is because we're not just talking about neurotype, we're also talking about personality traits.
PATRICK CASALE: Yeah, there's a lot of nuance, for sure. And I think that it's interesting to see how people move through the world. So, you know, the reason we want to highlight this experience, and I also did not do the disclaimer that we did last week, we just want to just use that disclaimer right now, that again, Megan, and I know that interviewing one person does not speak for an entire population of people. So, disclaimer now entered into the conversation.
Megan, specific questions, like, that come up for me when I'm thinking about spending time with neurotypical people, my first immediate thought is always small talk. Like, that's where my mind goes of, like, our absolute, like, visceral physiological reaction to small talk. And then, very often neurotypical conversation, which a lot of small talk is kind of the foundation. So, what are your thoughts around that, Megan?
MEGAN NEFF: Oh, me? Wait.
PATRICK CASALE: Yeah, so I want you to just like expand upon that if you want to. This is where we can explain things like-
MEGAN NEFF: Well, I, okay.
PATRICK CASALE: …we never knew when to talk over each other, so…
MEGAN NEFF: This is always that whenever we have a three-person conversation, this is always like fighting the flow. So, I found this study once. I can't refind it, which bugs me because I really would love the citation. But something about where neurotypical people, allistic people get dopamine from small talk, which gave me so much more compassion because for me it's a very stressful experience, I shut down, I low-key dissociate to get through it. Like, no dopamine.
So, yeah, I would be curious to hear a little bit more Jennifer about your experience on small talk? Like, is it pleasurable to you? Like, what is your experience around small talk? Does it depend on who you're doing small talk with or what the topic is? What in your mind is the purpose of small talk? Like, I kind of get it, but like, why do you all do this thing?
JENNIFER AGEE: So, for me, it could be positive, negative, or neutral, right? And the way I view small talk, let me make a disclaimer, I understand that as an extrovert I kind of want to get to know everyone and at my base route I do like most people. Genuinely, I think human beings are fascinating, I love spending time with them, all that things. So, I've just got to say that and that might just be my personality.
But I kind of look at small talk like going to a cocktail party, and you have like cheese trays out and things, and they have cheeses out that you've never seen before. I know how they cut them into those cute little cubes, right? So, you can have just one and you can see like, do I like that one? If so, I'm going to go back and like load the plate? Or do I not necessarily like that one?
And for me, small talk is kind of like those little bits to see do I want more of you or less of you? Are you my people? Are you not my people? Do I want to make a business connection here? Do I feel like you could end up being a friend that I have coffee with? Are you someone that I want to hang out with? Are you someone who… You know, those kinds of things.
So, that for me is really a part of the purpose, is I am sampling off the cheese tray so to speak, to see what you're about, who you are, how you present in the world, are you my people or not my people? And it doesn't cost my system if you're not my person or it's not an interesting conversation. And I think maybe that's a part of where the difference is.
So, for me, if I'm in a conversation that's not all that interesting, I've actually seen Patrick do the, where you could see this look on his eyes where he gets that, "I got to GTFO." You know? Like, he's looking for the exit. Whereas I could just like, enjoy whatever part of the conversation, find an excuse to leave, and like just get out of it, and it's fine. But I like sampling the cheese tray to always kind of get to know people.
MEGAN NEFF: I'm having, first of all, I love the cheese plate butter metaphor so much, but I just had an aha moment. You said, you know, if it's not cheese for me, I can get out of the conversation. That reminds me of that fluid idea. For me, it would be very stressful how do I get out of this conversation? How do I do it without offending them? There'd be an awkward like, "Okay, well I got to go, bye." So, the getting out part is harder for me. And I wonder if that's part of why small talk is not as stressful as you can fluidly enter and leave small talk without it being like this big, "Okay, how do I get into it? How do I get out of it? When do I know when the other person wants out? When do I want out?"
JENNIFER AGEE: I think you're right.
PATRICK CASALE: I also heard like the compartmentalization ability to say like, is this someone I want to have a business relationship with? Is this someone who falls into the coffee category that could become a friend? In my mind, like, there is no ability to have that interpretation and analyzation in the moment where I'm literally, exactly like Megan said, I'm analyzing everything around me, and picking up on everything around me, and trying to figure out the least stressful way to get out of it. And honestly, it does look like this look, that Jen is describing where I'm like, "I have to get out of here."
And I may not do this in a non-abrasive way. Not that that is my intention, but it certainly feels like this thing that has to immediately happen. And that it becomes almost torturous to exist in the conversation the longer it goes on. And I don't have a good filter for like my face. My wife will often say, like, "Patrick, fix your face because it's very obvious."
JENNIFER AGEE: So, what's going through your minds when you're having to engage in small talk? Because you're both business professionals like I am. Like, we're in these spaces where it's kind of expected. So, I kind of shared what's going on in my mind as that's happening. How do you guys see it? Like, what's that like for you?
MEGAN NEFF: That's a great question. I have kind of curated a life where I actually don't do much small talk. I've created a little island of work. And I've actually thought about that of like, it's kind of weird I don't collaborate with more people. Patrick's probably the, yeah, you're like the only… well, I've got one other person that I do some collaboration with and they're both neurodivergent. Okay, but that's not your question.
So, I'm trying to think about the last time I did small talk. It's typically, like, I am thinking about my face, I am thinking about, like, nodding, I am thinking about, what is the point of this conversation? I'm maybe, like, rehearsing ahead of time what my next question will be, so I'm like listening for something to grab on to that they're saying that will like move the conversation forward so there's not an awkward pause. I'm typically not thinking about building connections because for me, if I was like, "Oh, this would be a good coffee person or a good business partner." As soon as I think that it becomes a demand and I want no more demands in my life.
So, there's a scale on one of the, like, autism screeners, and it's social motivation. My scale is very elevated. Meaning I have very, very low social motivation. So, there's also like, unless I'm having a really automatic connection, like Patrick and I did when I was on his podcast, I'm not thinking about forwarding the connection. I'm thinking about how to exit.
PATRICK CASALE: Yeah, and I think that's where these abrupt conversation disruptions come in sometimes. I also think I do a really good job of, like, camouflaging/chameleoning, that's not a word. Acting like a chameleon.
MEGAN NEFF: Listen to Megan Anna, you just turned something into a verb. I like it.
PATRICK CASALE: Claustrophobic is going to be the one because I still have people asking me about that.
JENNIFER AGEE: You made me Google that word.
MEGAN NEFF: I read a lot of people, that's going to be like a trend in Google because I made a lot of people Google that word.
PATRICK CASALE: I do a good job of picking up on what people are interested in and being able to create conversation off of it, so I can remember being at a job where someone was wearing like a Duke basketball sweatshirt. And I did not like spending time around this person. But I knew that I needed to create conversation with them because of the sake of the workplace. So, my immediate conversation drifted into like, "Oh, Duke, like, how long have you liked them? Like, what's really interesting to you about them?" Because it allowed to create conversation that was not like, "How's your day going? What's the day look like? How's the weather outside?" Like, "Oh, man, how was your sleep?" Like, questions that I don't care about to answer. Like, yes or no questions in, general.
And so, I've always been good at that but it comes with a cost. And the thing that I think small talk does for me is, Megan, you made a great point of like rehearsing already, and like anticipating your answers. And that takes a lot of mental energy to then have to sit there, and analyze, and think about what am I going to say? How am I going to respond? And then often when masking in situations that, like, say I go out with my wife's friend who I don't know I'm going to feel more uncomfortable despite being with my wife and I'm probably going to mask more because I'm going to be like head nodding more, and making more eye contact, and trying to stay engaged in the conversation.
And if the conversation is of no interest to me, and I know that we're not going to become like, friends or contacts, I want it over with. And sometimes in those scenarios, you can't get out of them. Like, I have to sit and endure in that situation.
And I think, Megan, and I want you to speak to this too, and your perspective, but I very quickly and intuitively pick up on who I'm going to connect with and who I'm not going to connect with. And if I'm not going to connect, I have no interest in continuing.
MEGAN NEFF: Yeah, yeah. And that's why, like, I pick up energy so fast. Oh, I want to ask you about that next Jen, first, like picking up energy, that like within, yeah, probably five seconds I know if I'm going to connect with someone. And it's an energetic, like, either it's there, it's not there. And I feel like I can also register how authentic is this person and if they're not authentic, I feel so psychologically unsafe in their interaction and like, I get disoriented because I can tell there's an incongruency there. Like, I have a really strong reaction to that.
But I did just want to piggyback off something you said, Patrick. I totally did that, too. I forgot it. But when I was in hospitals, until I could find like a shared context to connect with someone I didn't know how to enter the conversation. So, I was always doing that too of like, did we go the same universities? I remember, like the doctors I connected with best were ones that like we had gone to the same university, like out East. And once I could find a shared context, I could enter conversation. But outside of that, I'd feel so disoriented, not knowing how to enter the conversation. So, that was just interesting.
Yes, Jennifer, picking up other people's energy, is that something you experience?
JENNIFER AGEE: Absolutely. But again, I don't think it costs my system if they're not my people, I just re-categorize them in my brain and continue on in the conversation with them in that new category. So, [CROSSTALK 00:17:09]-
MEGAN NEFF: This information.
JENNIFER AGEE: It's information for me to then I'm making decisions as to what level of investment I'm going to have. I will say, though, a part of my personality, and I don't think this is necessarily neurotypical, but I do think it's more part of my personality, I am way more likely to give people more chances, I'm way more likely to see 1000 different areas of gray as to how someone might have arrived at a conclusion or made a statement, or things like that. And so I know that even in Patrick and I's interaction because he does pick up on patterns and things that I don't pick up on as quickly, I'm more likely to maybe stick in something a little bit longer than he would because his system has already very immediately made a decision whereas mine might have made an initial decision and then I test the theory.
But yeah, I definitely pick up on people's energies in the room but then I just re-categorize them and move on.
MEGAN NEFF: So, when you talk about picking up energy and then re-categorizing like, is it like infecting you? Like, does it become your energy? Or is it a like a signal. Like, okay, that person has a high tempo, that person has a low tempo.
JENNIFER AGEE: I think that has changed as I've gotten older, and I know myself better because I am very intentional about protecting my energy in a way that I didn't know to be when I was younger. And I think that's true with most of us, as we know each other better, you know how to show up in spaces.
But I can think of a specific example with another leader in our community who always talked about our friendship. And I did think there was a base of friendship there. I didn't think we were friend friends, but we were kind of like on that road to friendship, for sure. I met them and spent time with them in person. And within the first three minutes, it was very clear I was a business transaction to this person, I was not an actual friend to this person. I felt it immediately, I saw the non-verbals, whatever.
And so, although, I felt just some level of disappointment because I thought it was really going to be one thing, my brain immediately re-categorized this person as this is a transactional relationship. So, anything that they did moving forward, I always just saw it in a lens of we're both getting something out of this, not that it's friendship, but we're both finding ways to use each other's skill set to benefit our businesses in some way. And so I didn't harbor as much ill will or resentment whereas I know other people I've had interactions similar and have walked away with a very different experience.
MEGAN NEFF: Yeah, that. Because I think, for me, like I'd feel like kind of clickbait like, but with a person and I'd feel, betrayal is too strong of a word, but like, I really have a sensitivity to feeling manipulated because I'd way rather someone be like, "Hey, I'm interested in a business collaboration, let's go." But if someone is like, manipulating to get to that, like, yet, for me, that would be a pretty quick cutoff. Whereas I hear the psychological flexibility in your mind, you're like, "Nope, I'll put them in a different bucket, move forward, fluid. We'll move through the world fluidly."
JENNIFER AGEE: Mm-hmm (affirmative). And if that person was not able to benefit my business in some way, transactionally, I would have then just kind of completely put them to the side. And I wouldn't have had a problem with that. But yeah, there is that flexibility where, again, I think this goes to I do flow fairly easily in the world and in my relationships.
MEGAN NEFF: Yeah, yeah. I'm going to backtrack something I just said. Actually, I don't know that I would cut them off. I would explicitly ask them, I would say, "Okay, I'm confused. It seemed like you were pursuing a friendship, but now it seems like this is what you're pursuing. What are we doing here?" And actually, now I just don't really respond to people in my DMs but when people used to… Is slide into my DMs always a sexual connotation? I don't know what I mean.
PATRICK CASALE: I think it's the right connotation, yeah.
MEGAN NEFF: Yeah. People would slide into my DMs. My kids are going to, like, hate me, they always make fun of me when I try to use like Gen Z language. And want to set up a meeting, I would explicitly ask, like, "What is your intention here?" And I'll still do that. I'll be like, when people want to meet, I'll be like, "Give me a bullet list of your intentions, and then I might consider giving you my time."
PATRICK CASALE: That makes sense, though, in a lot of ways. And like, whether I do think that is certainly much more of a neurodivergent trait, but it makes sense when you get bigger and busier. Bigger, like you're a medium-sized influencer at this point in time. You have over 100,000 followers on a social media channel. Like, you have to be intentional about how you kind of structure your responses.
But I agree with you Megan, like, I want to know the intentionality immediately, and what I'm getting a lot of, and I fucking hate it. Sorry, for cursing world, I'm doing better, is someone will like DM me-
MEGAN NEFF: You don't need to mask here, remember.
PATRICK CASALE: Someone will DM me and then they'll say like, they'll immediately send a compliment out, but then immediately follow up with an ask. So, in my mind that feels very inauthentic, that feels very disingenuous, that feels like you're just sending this compliment out so then you can ask your request. I don't respond to those anymore. And I used to respond to all of them. And I just realized, like, I can't. I don't have the energy or capacity. But I like-
MEGAN NEFF: I'm happy for that progress, Patrick. I'm so pleased.
PATRICK CASALE: I know. Jen makes fun of me because she's like, "Patrick picks up every phone call that comes to his life." [CROSSTALK 00:22:41]-
JENNIFER AGEE: Every, every phone call.
PATRICK CASALE: … if I was in jail because I you know you wouldn't pickup.
JENNIFER AGEE: Yes, absolutely.
PATRICK CASALE: I don't do that anymore, though.
JENNIFER AGEE: I don't think you'd send me bail money too. So, you'd definitely be on my call list.
PATRICK CASALE: I screen more calls than I was screening. But like, I like what you're saying, Megan, about, like, give me exactly what you're asking from me because I think that's really important for us, in terms of, like, no longer masking and no longer trying to always have neurotypical relationships. So, like, just ask me for what you're asking without like all the additional layers and all the additional like fluff that comes with some of the conversation and then I can make a much more informed decision energy-wise and also like intentionality-wise, I think that's important.
And something you said before that stood out to me, Megan, is like, the ability intuitively to pick up on energy that feels incongruent, or out of alignment, or I can pick up on artificiality like that. And as soon as I pick up on it, I'm not having this relationship, it's going to get cut off. And I think that's a big difference in what you're saying, Jen, is, like, the ability to flow through the world and categorize in the moment. My ability is like, black white. Like you're either going into the pile of people that I don't care about, or I'm going to really, really like you, and I'm going to really like show up for you. So, there is no middle ground for me in terms of socializing.
JENNIFER AGEE: That's actually one of the things I love the most because, like, I'm the only neurotypical in my family, right? And so one of the things-
MEGAN NEFF: Yeah, I was going to ask you, like, if you had any connections to neurodivergents. So, you're the only neurotypical in your family.
JENNIFER AGEE: Correct, yeah. And I-
MEGAN NEFF: Wow, so, like, you're parents to neurodivergent kids?
JENNIFER AGEE: Yeah, my husband, my two children, two of my grandchildren have already have diagnoses. And so one of the things, I guess, I totally lost my thought, but-
MEGAN NEFF: I'm sorry, I interrupted your flow.
JENNIFER AGEE: You're totally fine. Yeah, I do just flow differently in the world. And I think being in a household, oh, I got it back. Okay, so I'm reining it in. Okay, here we go. So, what I love about the neurodivergents in my life is exactly what Patrick said. If I am someone that they love they like really love me, I am super in, they invest in me time, energy, and mutually we do that. Whereas with neurotypical, I think, because we're more used to flowing in and out of each other's lives based on all sorts of different things, including seasons, everyone in my life who is a neurotypical who I'm genuinely friends with, they're a real friend. And I see that not as a privilege because I'm not inflicting anybody's head, especially, one on this podcast. But I do think that I honor that I know that I'm in a space that not everyone gets to go to in their life. Whereas a lot of people get that space with me, they're not in my inner circle, but a lot of people get access to me in a different way.
PATRICK CASALE: That's a really important point. I think Jen pointed that out to me, Megan, like, while we were traveling, I was thinking about, like, how many people want access to me, and she made a good point, she was like, "Because you don't give them access. Like, you shut them out, so people want to have more closeness and connection."
And in the business world, that's a really strange feeling because it means that people are going to like, try to manipulate you sometimes to have more contact with you. And that's something that I really, really struggle with, as someone who has to be around a lot of people a lot of the time for the work that I do.
MEGAN NEFF: I'm having kind of a realization as well, as we're talking, Patrick, of like, you and I are both in positions because of our like platforms and business where people want access to us. So, we have the privilege of being like, give me a bullet list of what you want to talk about.
Right, there's a lot of autistic people who are experienced in inverse. Like, I'm very aware of my social motivation is so elevated to where like, I don't want more people in my life. But there's plenty of people who are having the opposite experience of like, I'm really trying to build community and I can't give people a bullet list of what do you want to talk about because it's not like I've got 100 people sliding into my DMs.
PATRICK CASALE: For sure. That's a good point. I mean, what do we hear a lot of from, specifically, our autistic listeners and followers is like, loneliness, right? Well, are you trying to revamp the camera?
MEGAN NEFF: Yeah, right. Yeah.
PATRICK CASALE: I bought Megan the camera that I have and it tracks your motion, so it's not always in alignment.
MEGAN NEFF: Oh, my God.
PATRICK CASALE: But what we hear a lot of is like loneliness, and disconnection, and the desire to have community, and where can I get more community, in general? So, it's really hard then to say no to requests, say no to demands, have boundaries with energy, and time, and sensory overwhelm because there's such a desire for connection. And I think that is a really good point, Megan, that it definitely is a privilege to be able to say, like, not going to respond to this, or I don't feel like paying attention to the messages, or the emails, or whatever.
MEGAN NEFF: That I'm going to put boundaries around how I'm going to engage with you, yeah, yeah.
PATRICK CASALE: Yeah. Like your email response is pretty perfect about that. Your automatic response that you have built-in.
MEGAN NEFF: Oh, right, you've seen that now. Yeah, see? Building boundaries.
PATRICK CASALE: Building boundaries. That's right. Yeah, really, really good point. How about we diverge to another set of questions? So, last week, when Donna was on, we were asking about context, Megan, and like context clues. And what was the example you gave, in terms of context clues? Something about a neighbor conversation? I can't-
MEGAN NEFF: Yeah. So, it's, like if someone asks what's your favorite book? And Donna was saying how it would depend who was asking. Like, for me, I'd be like, sifting through trying to figure out like, it'd be so hard because, like, what does the person mean my favorite book, what genre?
So, first of all, I just like, can't answer that questions to context-dependent. But what Donna said, which just kind of blew my mind was like, well, if my neighbor asked, I would say this book, if a colleague asked, I would say this book because I know that like, that's kind of what they're asking. And then what Dr. Henderson was saying is how those context cues are all interpreted subcortically. So, like, outside of our, you know, prefrontal cortex, all of the labor that goes into that. I feel like I heard some of that when you were talking about small talk as well. Like, how quickly you're picking things up and then putting them into buckets, if this is a business connection, this is a friendship connection.
MEGAN NEFF: I think you're absolutely right. And I'd do the exact same thing. If somebody asked me what book are you reading? It depends on who they are, and what context I'm seeing them, and I immediately know which category I need to go to and which ones I definitely don't tell them that I'm also reading either.
PATRICK CASALE: I've heard too much of those.
MEGAN NEFF: Oh, so you also know, like, what filter to apply?
MEGAN NEFF: Oh, wow. And again, it's this is not like an analytical process, it's intuitive to you.
JENNIFER AGEE: It's very intuitive. I don't think about it. And again, this goes back to things that I noticed spending this much time with Patrick is, I see that he has to think about it, I see that he is intentionally filtering things that I am not intentionally having to filter.
MEGAN NEFF: Sounds so nice.
PATRICK CASALE: I just got like weirdly emotional on that. I don't know why. But, yeah, I think it's exhausting. Megan and I have talked about how exhausting it is to have to constantly like, try and prune information, and categorize it, and place it where it needs to go. And that's probably why like, sorry, that's probably why like, a lot of the times I have this look on my face where I'm like, maybe feels vacant or blank, but it's really just like, really inside my head trying to figure out the scenario, or how to categorize, or compartmentalize, or answer specific questions. So, it's really interesting. Like, I really wish that it would be completely intuitive, or it was just like, "Oh, I know exactly how to respond to this without having to think about how I'm going to respond to this." Sounds nice.
JENNIFER AGEE: I don't know any other way. So, you know, our brains are our brains and they just work the way they work, I suppose.
But you know, another part of this conversation, and if you don't want to go into this category, we don't have to, but because Patrick is my friend, I have talked to him before about sometimes the different costs to our system just in relationship like with partners and closer friendships and relationships. And in part because I know that it's harder on my spouse's system to do some of the things than it is mine. I find that I very often will default to the highest sensory needs person in the room. So, because I know it will not cost my system as much no matter what we do, really. If I know that if we choose X restaurant, that it's really noisy, or it's this, or it's that, and it's going to probably be uncomfortable for them even though I might really want to go there I won't even bring it up. Like, I make a thousand tiny internal pivots to try to make space comfortable for the people that I love and care about.
MEGAN NEFF: Yeah, yeah. First of all, I love that. When I work with parents who aren't neurodivergent themselves, that's something I'm often like, encouraging like, because they'll be like, "Why does my kid not want to go to the restaurant with us?" It's like, "Whoa, let's think about their through sensory lens."
So, first of all, I just love that you are doing that, that you're thinking through what I would call a sensory lens.
But to the other thing that's interesting that I think I hear your analytical brain, right? Like, for me, that's intuitive. Oh, I don't want to go that restaurant. And this is that double empathy problem, you have to analytically think through, okay, is that a high sensory restaurant? What is my spouse's experience going to be about that? And I think that is at the heart of the double empathy, which is, when we're in a cross-neurotype interaction, we're just not going to intuitively understand the other. But you're doing the labor, you're doing the prefrontal cortex labor of thinking through what would this experience be like for the other person?
JENNIFER AGEE: Yeah. And full disclosure, I've been with my husband for 30 years. So, I can tell the way his eye slightly moves a lot of times, you know, how that's affecting his system whether he says it or not, you know? And I think proximity is helpful, right? The longer you're with someone, the more you know how to pick up on their non-verbals and can adapt. And I think we all do that for people we love, right?
So, I'm sure you both have put yourself in situations that you don't necessarily really want to be in. But you know that your partner would really enjoy it, or it's important to them, or, you know, going out to a Happy Hour with coworkers you don't know or whatever. Like, that's not how you want to spend that day but you love your partner and you make accommodations for it. And I think you know that we just do that.
But I have noticed that I'm more aware of the fact that I'm doing it and I think it's because I'm getting older and I'm asking myself the questions like, how much am I doing that? Or how much am I doing that is accommodating other people? Kinds of questions, but I've been more aware of it. And, you know, I've kind of come to the conclusion that I really don't mind like, because I've asked like, do I feel resentful about that? Should this tick me off? You know, and when I thought about it, it doesn't because when my partner is happy and is flowing through the world in a better way, that helps me in our home and in our life low better, too.
MEGAN NEFF: Yeah, right. Like, you're going to get a more present version of your husband at a lower sensory restaurant, so if your thinking about the quality of the dinner, it's like, okay, I could go here and maybe get the food I want, but I'd have a dissociated husband or depending on if he goes up or down.
So, I love how you think through like the nuance of that. And I think this is so important for neurodiverse couples, is a love Esther Perel's work in general with couples. But one thing she talks a lot about with couples work is like the importance of not always looking to our partners to get our needs met. And I think, especially, for the neurotypical spouse, when there's a neurotypical spouse, like, take yourself to the restaurant, go there with a friend. Like, make sure you're getting that need met of like, I love this restaurant and it's a high sensory restaurant.
And I think when I see neurodiverse couples get stuck a lot, is they're not giving themselves permission to meet their needs outside of the dyad. And then that resentment builds up.
JENNIFER AGEE: Absolutely.
PATRICK CASALE: That's a great point. And you know, I'm very thankful that my wife is very intuitive about that, and also analyzes the cost because she knows that if we go somewhere where I'm just very uncomfortable, it's not going to be an enjoyable experience, and it's not my intention. But she also knows, like, there are like six restaurants in town that I will go to consistently. So, if she really wants to have a date night she's like, "Do you want to go to one of these six places?" I'm like, "Yeah, that's fine. Like, that's okay." "Do you want to try this new place that's really loud, or, you know, really crowded, or really busy?" And I'm like, "Not really. No, I don't want to do that."
And Megan, you and I have talked about, like family obligations, and familial obligations, and the cost that comes with saying yes sometimes to going, right? Like, my wife's family and my in-laws are big, loud family, and they're wonderful, but it's overwhelming. And the cost that comes with that is something where I will have to kind of give myself months of time to mentally prepare to say, like, "Okay, we're going to go on Christmas Eve, and I'm going to, like, sit in this room for six hours." And like, I know what that means in the long run. And I just think that is an interesting way to put that in perspective, too.
MEGAN NEFF: The other thing, and like, I'm feeling the controversy in my chest before I say this. So, I want to give it some context. But you know, after my diagnosis, and, Patrick, we've talked about this on this podcast, like, there were aspects of being autistic I needed to grieve like the limits I have. I think my biggest grief is around my sensory limits because I have such a hard time being present anywhere in the world, outside of nature and my house because I'm shut down, my nervous system shut down.
But I've encouraged my spouse, like, you get to grieve this too. And that's tricky for him, that's not intuitive. But like, the other day, a concert came up, and he was like, "You know what, I had a moment of like it'd be nice if, you know, Megan Anna would want to go to something like that with me." And I am encouraging him of like, "You get to grieve that you don't have a spouse who can enjoy concerts with you."
So, I think that's a tricky line, but I think it is important, especially, if this is later in life discovery for both partners to process and grieve elements of what it means to be a neurodiverse.
And likewise, like, there might be elements where I grieve that my spouse doesn't intuitively get me in the same way that neurodivergent people do.
JENNIFER AGEE: I love that you guys are having this conversation. I really do because I just think of how many people that have been in my office over the years, where there's an undercurrent of all of this going on, but in people's politeness are not wanting to hurt their partner's feelings. They don't also own the parts of them that are true that may not feel great to say out loud, and I think healthy relationships gives space for both partners to feel those feelings.
MEGAN NEFF: Yeah, yeah. And I think that that's important to any couple but especially, in a neurodiverse couple where we are working on that across neurotype, double empathy issue of like, we have got to create space for there to be complex emotions and for us to hold space for our partners to have complex emotions.
PATRICK CASALE: That's definitely an episode in the making. I think just having conversations around neurodiverse couples, and partnerships, and communication styles because that's what comes up a lot is missed attunement, and communication, and interpretation of communication.
JENNIFER AGEE: That is going to be a huge episode. You all don't even know, buckle up. It is going to be big. I want to compliment you guys, one of the things I really enjoy about your conversations is that you very clearly and articulate the felt experience of being an autistic person walking through the world, where just like you're asking me questions as, you know, ask the neurotypical day, you know, kind of thing, it gives me a peek behind the curtain too, to what's actually happening in your system. And so I just really appreciate and value what you guys are doing. I want you to know that.
MEGAN NEFF: Thank you. I'm going to, like, not to totally deflect but I'm going to deflect. First of all, like those words mean a lot, but I also noticed myself retreating with the compliment coming in. How do you experience compliments as a allistic neurotypical?
JENNIFER AGEE: I think, for me, how I experience compliments has changed as I've healed my own childhood crap. So, you know, when I was younger, it was definitely not something that I accepted or received. And now when somebody says something nice, I just say, "Thank you." Or I hear all, you know, a lot of times, "Oh, my word, your life looks freaking amazing. Look at all the things you're doing. You know, I just wish I could, you know, have a life like that." And I'll just say, "Thank you. Yeah, it is pretty amazing."
And so I can receive it now. But that was not easier when I was younger. And I think that just had more to do with childhood junk than anything else.
MEGAN NEFF: Yeah, yeah.
JENNIFER AGEE: But I'll make my husband stay in there and take it sometimes. I'll just be like, I'll warn him, I'll say, "I'm about to say something nice and you just need to take it." That's exactly what I say.
MEGAN NEFF: I love that.
PATRICK CASALE: Well, and I can see that being true because that's kind of how our relationship goes sometimes. And two, I could see you retreating Megan. Like, I saw your body like do this.
MEGAN NEFF: Even though, like, I loved I loved those words and they genuinely mean a lot. I think it's the positive emotion. And again, this is on the big five, there's a whole facet of positive emotion. It's often low for autistic people. But it's both like, how much we generate positive emotion, but also how we experience it coming toward us. And for me, it can mean a lot but positive emotion coming toward me it feels like a sensory demand. I don't know how else to say it, which is that-
JENNIFER AGEE: Because of the titter tat, like, of like a give and take. Like, because I'm saying something nice to you now there's an internal expectation something's supposed to come back.
MEGAN NEFF: That's part of it. So, part of it is energetic, just like, but then part of it is I'm supposed to have a nice response to this. And I just typically have an awkward response to compliments. So, also, I guess, there's social demand around and now how do I take this in, and then respond to it? And it's also the like, okay, like, teenage era, it brings me back to like middle school and high school. Like, someone complements your shirt, then you compliment their shoes. Like this exchange. Yeah.
JENNIFER AGEE: There's a lot of, you're tapping into something that's completely accurate, which is there's a ton of nuance around relationships, which is where, I think, you know, the two of you would just prefer to cut the bowl and get right to the meat and potatoes. I'm from the Midwest as well. So, like, there's a ton of politeness that goes around conversations because coming-
MEGAN NEFF: I grew up in the Midwest, yeah.
JENNIFER AGEE: So, coming directly at someone with like, "Hey, saw you messaged me, tell me what you want, what you really, really want. And then like, we'll get out of here."
MEGAN NEFF: I love So the Spice Girl reference just there, by the way.
JENNIFER AGEE: All right, random brain. But anyway, so if someone came at me that way, I'd be like, "Well, okay, then Mr. so and so." You know?
MEGAN NEFF: It will put you off.
JENNIFER AGEE: But I know enough now to be like, they're just being direct because they need me to cut to the chase but I will tell you that is a more recent development. And you will be on my suspicious list as to whether or not you go in category, transactional. Like, I'm already starting to make categorizations based on that directness now.
I will tell you the first time I met Patrick, and I had already hired him to talk at my first retreat, I told my husband I said, "I don't even know if I should go up and say hello to him based on the look on his face." Like, I'm like, "I don't think this dude likes me at all."
Anyway, because he's like, "Well, it's the truth. You tell stories about me, I'm going to tell him about you." Anyway. So, just the way, you know, his presentation and all this stuff is, as soon as he was diagnosed, it was like my brain re-categorize every interaction we had, and I was like, "Oh." And I didn't feel some type of way about them anymore because I understood that was just him being genuine in that moment, his face didn't want to make a fake smile face, which my good Midwestern parts were like, "Put a fake ass smile on, I'm here, come on." You know?
So, and he didn't want to, and he didn't. But now that I know that I'm like, okay, he was being genuine in that moment, and my brain re-categorized that.
MEGAN NEFF: And this is one of the potential benefits of relational self-disclosure is then we have an accurate narrative to, like, encode those interactions. I got this a lot from my life, too. I think, Patrick, you have too, probably, a lot of autistic people. Like, you seem distant, aloof, like hard to get to know, disinterested. Whereas like, I might be the person in the crowd, like, trying to find someone to make talk with so that I don't awkwardly stand in the corner. But most people are reading me and have read me as disinterested. So, I think it's so helpful then when there's this narrative of like, oh, okay, I understand this interaction, I can categorize it differently now.
PATRICK CASALE: Yeah, absolutely. That's so spot on. I think those adjectives or description words would be the ones that people would use for me most often. And when I'm connected with people, I'm really connected with them. Like, I can talk, and be very social, and very engaging. But yeah, those would be the words that I think come to the forefront for most people.
And I think a diagnosis helps, like you both said, re-categorize, in a way, or at least reshape a perspective, which I think is important, too, if you're open to reframing the perspective, right? Because people can also interpret the diagnosis is like, so what? Like, you're still acting this sort of way. I'm from New York. Like, even if I wasn't autistic, I think there's still a level of directness of being from the Northeast, where like, that is how people communicate. And then moving to the South, were people who are like, "Bless your heart." And like, we got to put all of this fluff into all of the conversations. And I'm like, what is happening here? I don't understand it. So, that's very interesting, you know, in general.
But I agree that those are the words that people would describe me with in terms of like, getting to know me socially. And I think that's strange when I am the face of a business where we're hosting people all over the world and if their perception is like, Patrick, is unapproachable, and distant, and really mean, that just doesn't feel great for my brand. But it doesn't seem like that is the case. It just seems like people want to get to know me more because of how distant I present, I guess. I don't know, that's what I'd say.
JENNIFER AGEE: I've told you 1000 times it is a part of the key to your success because the, I want to be liked parts of us, freaking love a good aloof person because we're like, "Why don't they like us? Maybe we can…" I mean, like, so all those parts kick in for us, too. I think when we see that we go into all of those spaces within ourselves and yeah, I think it's been a part of your success, to be quite honest.
PATRICK CASALE: I appreciate that.
MEGAN NEFF: I think it's part of why my spouse married me was because I was like, the aloof in college, right? So, like, that plays really differently. Like, being an autistic girl who was like, hard to get to know, like, in the dating world, that kind of works, actually.
JENNIFER AGEE: I could see that.
PATRICK CASALE: Can we talk about dating real quick? Because this is something we did not talk about last week and that is something. I just want to check our time too. Do you have your meeting, Megan?
MEGAN NEFF: I don't but I don't know if you all have anything. I also have a couple more questions I would really like to-
PATRICK CASALE: Okay, cool. We've got like-
MEGAN NEFF: …have conversations on-
PATRICK CASALE: …20-ish more minutes, so I am [CROSSTALK 00:49:21]-
MEGAN NEFF: Are you okay Jennifer for time?
PATRICK CASALE: Last week I didn't have the same buffer, but so dating, right? You just made a good point, Megan. And we've never talked about dating on this podcast as neurodivergent people. I struggle so much to pick up on social cues. I think I'm better at it now. But during that span of my life, it was really hard. And like if people were interested in me, I definitely did not know. So, if someone came over and just talked to me randomly, or like, put their hand on my leg or like, gave me a certain look, I would just not really be able to absorb that or take that in or make sense of that. I definitely had a lot of those interactions where someone was definitely hitting on me and I was probably like, "Oh, did you need, like, direction somewhere? Or like, do you need recommendations for a restaurant?" And I just, like, got up and walked away.
My wife is like, "You definitely missed out on a lot of relationships because the first date." I didn't know she wanted to kiss me. I didn't know. She said, I gave her like an awkward side hug, like, goodbye. I probably like ran the hell out of there. I was like, "I got to go." Anyway, Jennifer and Megan, how do you experience that and picking up on social cues?
MEGAN NEFF: Jennifer, I'll let you go first.
JENNIFER AGEE: I mean, I picked up on it just fine, and then, look, I think if you're cute enough, and you like the person enough, any stupid line will work is kind of my theory. So, I never had a problem with it. And then based on the cues, I would, again, immediately categorize in my mind, do I see this person as a potential anything? And if the answer is no, I would politely you know, hahaha, and exit the conversation. And if I thought they were a potential, I would lean into it. But I was able to tell and really intentionally make a decision if I was going to navigate that interaction one direction or another.
PATRICK CASALE: I'm thinking of a situation right now that while I was in Charlotte, before I moved to North Carolina, with some friends, and a friend of their friend, and she kept putting her leg on my legs while we were sitting at a restaurant, and I kept moving and being like, "Oh, my God, you must need space. Like, you clearly don't have enough space in this booth." Anyway, sorry.
JENNIFER AGEE: Yeah. You misread that one.
PATRICK CASALE: I misread that one.
MEGAN NEFF: Definitely. I hear that a lot. Patrick, that's not been my experience, but I hear that a lot from autistic people, especially, more so, I think, cishet men. Like, just totally missing. And, again, talking like in kind of heteronormative spaces, I wonder if many girls are more subtle in their… Because like, we live in this patriarchal culture where it's typically like, the man is supposed to initiate.
So, like, yeah, I didn't really relate to that. Also my dating experience happened in this really weird bubble of evangelicalism. And so my dating experience was more like I get into a really deep kind of philosophical, existential conversation with someone, we end up talking late into the night. Like, it would become pretty clear. And it would start with kind of a emotional intellectual connection, typically.
So, I do think that I have had like, I think I interpret all banter as flirting, so I do think I have difficulty and in the workplace, this has confused me when I've had male supervisors, banter with me, of it feels flirtatious, but then I'm, like, confused by that. So, I've definitely had that experience actually work. But it's more, everything feels flirtatious versus nothing feels flirtatious.
PATRICK CASALE: It's very interesting. I definitely think we have episodes to do off of some of these conversations because it's just interesting to hear these different perspectives and how we interpret and move through the world. So, Megan was there [CROSSTALK 00:53:53]-
JENNIFER AGEE: They're so fascinating.
MEGAN NEFF: They really are. Jennifer, well, this is a strong pivot. I don't know if we're done. It seemed that fluid, I have to explicitly ask.
PATRICK CASALE: This actually feels more fluid than last week. So, pivot away.
MEGAN NEFF: Oh, I'm just saying I'm not fluid. So, I'm like having to explicitly ask, are we done with that conversation? Can I-
PATRICK CASALE: Can I transition?
MEGAN NEFF: Yeah, sensory, we haven't talked about that. So, I know, we've talked about small talk, we've talked about context cues, what's your sensory experience of the world?
JENNIFER AGEE: I literally don't think about it.
MEGAN NEFF: I was actually guessing that might be what you say, of just like, because it's like a fish in water not experiencing water. That's so interesting. So, like, you'd have to think about it to think about what your sensory experience is.
JENNIFER AGEE: Exactly. And now it's 105 degrees. So, if I go outside, I'm going to have a sensory experience of being hot and uncomfortable. I mean, it's just being a human in the world, right? But in general, I don't filter or anticipate anything in terms of thinking about my sensory needs at all because this is kind of, I hope that didn't make me sound bad. But the truth is, I know my systems got it. So, if I walk into a situation, I know that my system will pivot or adjust in whatever way it needs to, to be okay. So, I just really don't think about it.
MEGAN NEFF: Yeah, yeah, that doesn't sound bad. That's like literally one of the core differences is something I talk a lot about is how neurodivergent people have like ice thin window of, like, window of tolerance because we can't take in incoming stressors in our body adapt as easily. Same thing with sensory, you're saying your system can take in new input, and adapt, and be okay. And that is like precisely one of the huge differences between allistic and autistic systems.
PATRICK CASALE: Yeah, I'm thinking about, like, the one-degree temperature difference that I sometimes need to make me feel more comfortable in my house. And if my wife uses the air fryer, how I can't sleep at night because I can smell the smell of like the air fryer all night, and I'm so uncomfortable, and how I so often default to certain clothing items because of comfort. And it's just amazing how much energy and intention has to go into like sensory soothing, and really having to be really aware and vigilant about it pretty constantly in order to be comfortable.
JENNIFER AGEE: So, this is a great example, actually, you mentioning the temperature of how my system, I will just kind of take a lock and just get on with it. So, when we traveled we would often stay in Airbnbs because we packed basically in a backpack for a month, you know? Then we always had to do laundry. He likes it like a freaking icebox. I mean, it was a meat locker in there. I keep my house at 77 degrees.
JENNIFER AGEE: Yeah, and I feel amazing, right? So, at night we'd get in, we'd both kick our shoes off at the door and go to separate rooms. And he would have it set to icebox temperature. And I literally slept with my head under the covers almost every night because I was freaking freezing. But I knew I could wake up and be like, all right, let's go to coffee, you know, it's going to be a good day. And if that affected his sleep, if that affected you know, all of these things, I was thinking of those things, too. I know you made accommodations for me too. But I'm just talking specifically about the being physically comfortable in a space. I was just like, it's not worth it because it's going to cost him sleep, which is going to cost him a lot, lot more the next day.
PATRICK CASALE: 77 degrees sounds miserable, first of all. That's what my dad keeps his house at in Florida. I go down there and like, go into an Airbnb, I can't do this. But too, I appreciate that.
So, that's a great example of friendships throughout different neurotypes. And being intentional about the things that we know are going to impact the other. And I knew you did that while we were there. Like, I knew you were definitely like Jen is a verbal processor. And I had to tell Jen, like, "If you're going to say all of these things to me every day, I'm going to take them literally. So, if you need me to do something now, then tell me. But if you are just processing your thoughts, please, like, give me context that that's what's happening. Otherwise, the conversation of like, 'Okay, we need to do this, we need to do this, we need to do this.'" And I'm like, "Fuck, are we doing that right now? Like, what's happening?" So, that was very helpful.
And also, like, I know, Jen wants to talk in the morning and I am not a morning person. And every morning that we went and got coffee she'd be, like, holding it in, and I could see it in her face where like, I wasn't even talking, I was just like, pointing direction sometimes because I was like, so tired or like, out of it. And I just want to say that I appreciate that, so it was helpful.
JENNIFER AGEE: I got you. Thanks for not letting me get run over because he did pull me in a few times when I was distracted by the beauty of the world.
MEGAN NEFF: I just want to say, like, I love kind of, you're all… Oh my gosh, words, do words stop for me after an hour? Is that what's happening? I love your dynamic and I love getting this inside perspective on Patrick of, and I really appreciate seeing your dynamic. I think it's a really wonderful model of what good cross-neurototype friendship. Like, I wanted to say business but it feels and sounds more like a friendship when you all talk.
JENNIFER AGEE: It's a friendship that turned into business, for sure.
PATRICK CASALE: And it all started with both of us not liking the other person based on certain stereotypes.
MEGAN NEFF: Based on the double empathy problem? Was it because of assumptions you were making about each other?
JENNIFER AGEE: Yeah, Patrick.
PATRICK CASALE: I would talk about what I was assuming on air because it sounds unbelievably discriminatory.
JENNIFER AGEE: Yeah, Patrick.
PATRICK CASALE: [CROSSTALK 00:59:44] from the Midwest, they're having their first retreat in Gatlinburg, Tennessee. I assume this person is just a terrible human being. I don't want to say associate with this person. Why did I say yes to speak at this event? All the things that are going through my head. And then we met in Hawaii at a conference and like then we spent the next five days together, her and her husband and me and some other friends. And the rest is history. But that was definitely my initial impression, which unfortunately is very often my initial impression is like, I'm already assuming I'm not going to like the person, and I really have to experience them to then change my opinion or perspective. I don't go into a lot of social situations assuming the best, I should say, socially. So, that is a difference in our styles, for sure.
JENNIFER AGEE: And I'm the exact opposite. I go into every situation and assume that it's going to be awesome. And if it turns out not to be I just adjust.
MEGAN NEFF: I think that's what makes me think you're an EO. Yes, I abbreviate personality assets or factors because the high extraversion, high openness, when you look at personalities, if you were to line up 100 people they are the most optimistic forward thinking people in the world. So, it is interesting to me how well you all gel because that's typically not the autistic person. Like, we're maybe on the other side of the spectrum, often, not always, but…
PATRICK CASALE: I think that doing some of these events together that we do, and then having that 30 days…30 days I don't want to travel with anybody, I'm just going to be quite honest. Like, I don't want to travel with my wife for 30 days, I want to travel with anyone by like, halfway through, I was just like, "Oh my God, I'm so done."
But it gives you a good glimpse into someone who is very extroverted and optimistic because I think some people in society can also misinterpret that as like, this doesn't feel real, this doesn't feel genuine, this feels really artificial. How can you put this face on every day? I got to see for 30 days that this is just every day. And I thought to myself, "This is wild like that someone can move through the world optimistic all the time." I cannot do that. I feel like I'm optimistic 3% of my life, and that might be generous.
So, it was just a very interesting experience. I really wish we would have documented more of it either via writing or video to give different perspectives into the different neurotypes in terms of moving through the world, and traveling, and experiencing all of these places, and transitions, and sensory overload, and stimulation, and everything that went into those 30 days because it was so vastly different.
Like, if you can imagine Jennifer in Italy, opening her window, seeing the mountains, and like I imagine there were like bluebirds singing and all sorts of stuff. When I opened my window, my view was of old Italian men arguing with each other every morning. Like, we had very different experiences in every sense of the world. And I almost feel like that is like a good glimpse into actual inner world and inner working.
MEGAN NEFF: [CROSSTALK 1:02:46], oh, go ahead.
MEGAN NEFF: I was going to… Go ahead.
MEGAN NEFF: Oh, I was just going to clarify is that because your perception of what your, "I gravitated toward." Was different or because you actually had different…
PATRICK CASALE: We actually had very different locations in the hotel we were staying.
PATRICK CASALE: And she had a really beautiful view. Like, I imagine if I looked at it every day, I also would have been more happy than the view I had, which was just an alleyway, and a coffee shop, and these two old Italian guys every morning arguing with each other in Italian about who knows what, and I would open it not having slept the day before or night before, and just be like, "Oh my God." And she would come and be like, "Did you see this like, amazing image that I have?" And I'm like, "Fuck."
JENNIFER AGEE: Do you want to know, honestly, my initial thoughts if I were to open the window and saw two little Italian mints arguing on the street? I would have been like, this is freaking awesome. I wonder what they're arguing about. I would have made up a whole story in my head, and it would have been really good. Like, and I would have been like, "Can you guys believe? I got to see these two people having this argument in Italian and their hands were going in." Like, my interpretation of my of our realities, we really literally do walk through the world in very different ways. And it's so freaking fascinating. I think it's fascinating.
MEGAN NEFF: I love that.
PATRICK CASALE: That's a good ending point. And I'm ending it even without doing it awkwardly because I have a meeting in seven minutes, so…
MEGAN NEFF: Okay, can I ask one final question? I want to start asking people this.
MEGAN NEFF: When I say it's raining cats and dogs outside, what do you see in your mind?
JENNIFER AGEE: I just see that it's raining hard.
MEGAN NEFF: Like, you see it hard, right?
JENNIFER AGEE: Just hard rain. Hard rain with [CROSSTALK 1:04:37] on the street-
MEGAN NEFF: [CROSSTALK 1:04:36]. Patrick, what do you see?
PATRICK CASALE: I think I also see hard rain.
MEGAN NEFF: Wait, you're not autistic.
JENNIFER AGEE: This whole thing is a farce.
MEGAN NEFF: Sorry to be the one to tell you this, Patrick, [INDISCERNIBLE 01:04:52].
PATRICK CASALE: I'm glad to hear it on air just like this, too. That's perfect.
MEGAN NEFF: You see hard rain? I see cats and dogs like coming down and umbrellas and they're popping off of umbrellas and-
JENNIFER AGEE: That sounds horrifying.
MEGAN NEFF: That's right, it's terrible. I know that people mean it's raining. But what comes in my mind are cats and dogs coming down. Patrick, I actually got this from Joe Short in a consult I did with him. He was saying how autistic people are visual processors. So, often we'll see that and I was like, "Wait, what? Not everyone sees cats and dogs." So, I asked my spouse. He was like, "I see rain." And I was like, "What do you mean you see rain?"
PATRICK CASALE: Well, I guess I failed the test and life is a lie.
MEGAN NEFF: Well, you failed. But Jennifer passed the allistic test.
PATRICK CASALE: I do see and interpret most things visually. I will say that but I don't know it. We live in a temperate rainforest in Asheville. It rains all the damn time. And I'm so sick of the rain. And that's all we see. But yeah, that's actually a very funny question. All right, we got to wrap up, sorry y'all. This has been fun. Jennifer, thank you so much. This is a really good conversation and I'm glad we're doing this series. I would like to do it with more people, Megan, if we can start figuring out that that process, for sure.
JENNIFER AGEE: Thank you guys for having me on. I've totally enjoyed my afternoon with you two.
PATRICK CASALE: I'm about to see you again in like an hour or so.
JENNIFER AGEE: Yeah, I know. And I am probably happy about it. And you may feel some type of way but will show up anyhow. I'm wishing you both an awkward goodbye because I hear that's your thing.
PATRICK CASALE: We try and end this episode. And Megan will sometimes be like, "Are you trying to transition?" "Yes, I'm trying to transition."
All right, so thank you to everyone who was listening to the Divergent Conversations Podcast. New episodes are out every single Friday on all major channels and YouTube. Like, download, subscribe, and share. Goodbye.

Friday Oct 20, 2023

Ever wonder what the differences are between the ways non-Autistic ADHDers and Autistic ADHDers process and move through the world?
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Dr. Donna Henderson, a non-Autistic, ADHDer psychologist, about her personal experience as an ADHDer, as well as explore the overlap and differences between ADHD and autism.
Top 3 reasons to listen to the entire episode:
Understand what life looks like as an ADHDer in regards to things like executive functioning, sensitivity and reactiveness, conversational tempo, working memory, and task switching.
Identify the ways Autism and ADHD can influence how we process information and engage in conversations, as well as how this shows up in relationships.
Learn about what it really means to do self-care and how to break free from the generic standards of healthy living to act in alignment with what you actually need and want.
There is a surprising number of differences between the way Autistic individuals and ADHDers might experience the world. This episode only covers the experience of one ADHDer, so we encourage you to further explore the nuances and diverse perspectives of ADHDers.
More about Dr. Donna Henderson:
Dr. Donna Henderson has been a clinical psychologist for over 30 years. She is passionate about identifying and supporting autistic individuals, particularly those who camouflage, and she is co-author (with Drs. Sarah Wayland and Jamell White) of two books: Is This Autism? A guide for clinicians and everyone else and Is This Autism? A companion guide for diagnosing. Dr. Henderson’s professional home is The Stixrud Group in Silver Spring, Maryland, where she provides neuropsychological evaluations and consultations for children, adolescents, and adults who would like to understand themselves better. She is a sought-after lecturer on the less obvious presentations of autism, autistic girls and women, PDA, and on parenting children with complex profiles. She also provides case consultations and neurodiversity-affirmative training for other healthcare professionals.
Dr. Donna Henderson's Website: drdonnahenderson.com 
You can grab Dr. Donna Henderson's books here: isthisautism.com
Dr. Donna Henderson’s Masterclass on PDA (with Neurodivergent Insights): https://learn.neurodivergentinsights.com/pda-masterclass/ (As a listener use “PDA10” to get $10.00 off the Masterclass!
PATRICK CASALE: So, Megan and I are very excited to introduce our little miniseries within a series about interviewing different neurotypes within the neurodivergent and neurodiversity communities. We want to just put a big, big, big, big disclaimer out there that we understand that by interviewing one person per neurotype there are lots of different perspectives, different experiences, one person does not speak for the entirety of a neurotype. And we just want to really make that clear. But we are really excited today for our guest and our interview with our Ask an ADHDer. And I'm going to turn it over to Megan.
MEGAN NEFF: Yeah, so likewise, I'm really excited for this series. And I think it's kind of a playful series. And I'm glad you mentioned the disclaimer of, of course, we're not going to nail down all experiences in one interview per neurotype or however many we have. But I cannot think of a better person to be, kind of, getting us started on this process than Dr. Donna Henderson. I am just going to gush over to you for a minute, Dr. Henderson. I hope that's okay with you. I don't like when people gush over me. I hope you have more tolerance for it.
DONNA HENDERSON: I have mixed feelings about it.
MEGAN NEFF: Okay, we could process that, we have to. I am such a fan of your work, as you know. Dr. Donna Henderson has done a lot in, I would say, advancing the conversation around non-stereotypical autism. She and her co-authors just released two books this summer, Is This Autism? Which is a green book. And then the second one, Clinicians Guide. What's the other book?
DONNA HENDERSON: So, they're both called Is This Autism? And the subtitle is different.
MEGAN NEFF: The subtitle is different.
DONNA HENDERSON: The subtitle of the first one is A Guide for Clinicians and Everyone Else. And the second one is A Companion Guide for Diagnosing.
MEGAN NEFF: Got it. So, if you're a clinician, check out the blue book. And if you're everyone else, check out the green book. Am I oversimplifying? I'm sure I am.
DONNA HENDERSON: A little bit because we feel really strong… we wrote them as one book and we were very upset when they had to be divided into two books. But you know, I went way over my word limit. And-
MEGAN NEFF: Understandably, it's a complex topic.
DONNA HENDERSON: It is. And we really want clinicians to start with the first book because the first book tells you kind of know what to look for. And the second book tells you how to look for it. And if you don't know what to look for, it doesn't matter if you know how to use-
MEGAN NEFF: I love that-
MEGAN NEFF: Okay, I'm actually so glad, like, that was just a divergent trail based on the introduction. But I'm actually really glad we had that conversation because I've been wondering how to recommend your books. And I've read the green one, not the blue one yet. And I remember thinking like, this is so much helpful information for a clinician in training. I want alternative programs to have your book.
So, yes, one of the reasons I love your book and I love you is because I think you're putting… So, Routledge just published it. This is a really academic, solid publisher. I think it's really hard for a medical provider to look at the case you put forward and say this is rubbish. And so that is one of the reasons I'm such a fan of your book is you're taking what is, I would say, known in the autistic community, and really putting kind of a research backbone to it, to where it's going to be hard for the field to continue to depend on stereotypical ideas around autism.
DONNA HENDERSON: Yeah, and that came from, it's the way I structure my reports. I literally use the DSM diagnostic criteria. And people have all kinds of feelings about them but I think if you actually understand the scope of them, and what they really mean, then they do make sense. And they can be very clinically useful.
And so when I write a report for somebody who is autistic and has been misunderstood over and over and over again by their health care professionals and everyone else, I literally write how they meet each diagnostic criteria because I want to arm them with that document, so a future healthcare professional can't say, "Well, I don't think you're autistic." Because they have the proof, you know?
MEGAN NEFF: Yeah, yeah, well, and now you've done that for a wide audience, which is why this is so valuable. Okay, I'm bringing myself back on track. So, other than these fantastic books, like, also, I've been at your trainings, I've heard your trainings, I've posted some of your trainings around PDA, around autism in girls. I know there's a podcast that has, like, gone viral where you walk through the DSM criteria for girls. So, you're well-known in this field as an expert on autism.
So, you being on our podcast today is a little bit different because we asked you to come on to speak from your personal experience as an ADHDer. I think it's so interesting, here you are at the forefront, I would say, of the clinical research around autism and you're an ADHDer, which you talk less about. I have heard you talk about it here and there, but I haven't heard you talk about it in depth.
So, first, I'm just curious, what is it like to be coming onto a podcast where it's not like ask the expert, it's let's talk to Donna the ADHDer?
DONNA HENDERSON: It's a little bit nerve-racking, you know? To do, you know, something more personal, but I ask people to tell me their personal stuff all day, every day. So, turnabout is fair play, I guess.
And I think one of the reasons I'm drawn to, you know, studying, and working with, and writing about, and talking about autistic people because what resonates with me is I was misunderstood for so many years. You know, I'm 58 years old. And so I had no hope of being diagnosed as an ADHDer when I was a kid. I was also you know, a girl who, you know, found school to be relatively easy. I messed up a lot, I didn't get the best grades, and all that, but it wasn't super effortful for me. And so I had no hope of being identified.
I got identified and diagnosed when I was in my, I think, mid to late 30s. And so I understand, to some extent, at least, what it's like to be misunderstood, and then to internalize all the shame and blame, and to, you know, blame yourself, and be really hard on yourself. And then to have that experience of somebody seeing you and saying, "Actually, this is what's been going on." And how unbelievably life-changing that can be.
MEGAN NEFF: Yeah. It's so liberating, so liberating. And this is something I think Patrick and I have talked about some, but I'd be curious what some of your internalized labels were? I think different and both shame-based, but I think some of my most, like, just aggressively negative labels I've put on myself is actually more from my ADHD than my autism. Do you feel comfortable sharing what were some of the internalized narratives that came online for you, having been undiagnosed till your thirties?
DONNA HENDERSON: Sure. Definitely, when I was younger, like in high school and college, lazy. I knew I was smart, I knew I was capable of, you know, advancing in my academic career, and yet, you know, I avoided hard work, I couldn't sustain attention or effort sometimes. And so, definitely, I thought of myself as lazy. And now I realize I'm absolutely anything but lazy.
MEGAN NEFF: Right, when you literally just came out with two books this summer.
DONNA HENDERSON: Yeah, so that's been a big change. But that was, you know, the first half of my life, I definitely thought of myself as lazy.
One that I'm still really struggling with is sensitive. I grew up with people constantly saying, "You're so sensitive, you're so sensitive." In a negative way. And I definitely internalized that as something incredibly negative. And now, I definitely still struggle with it and there are many times I wish I was less sensitive, and I get mad at myself for having such big emotional reactions. But at least I understand it's not a character or logical problem, this is my wiring. And that gives me a fighting chance of not, you know, blaming myself at the end of the day.
MEGAN NEFF: I love how you word that, not a character or logical, it's my wiring. Okay, so this is going to kind of trail us somewhere. And I'm curious what you mean by sensitivity? Because I know like emotional regulation is harder when we're ADHDers. But also, I'm thinking about like, HSP, highly sensitive person kind of phenotype. Something I see a lot in the autistic community right now are folks saying and I used to say this too, focusing HSP is just a repackaging of autistic traits. I've backed off that because I've now seen and, like one of my kids is an ADHDer who also wouldn't be considered HSP. I'm curious, like, does the HSP, that highly sensitive person, is that part of what you meant by sensitive? Does that fit your experience?
DONNA HENDERSON: I read that book so long ago, it's hard to for me to remember.
MEGAN NEFF: Yeah, it's-
DONNA HENDERSON: I could say, I'll sort of make a differentiation, I think. My sensitivity, I would say, most of it, is about me feeling judged or criticized easily.
MEGAN NEFF: Okay. So, like rejection sensitivity, emotion regulation sensitivity.
DONNA HENDERSON: Yes, exactly-
MEGAN NEFF: Okay, cool. No, that's what I was-
DONNA HENDERSON: It's very specific to that as opposed to a more general, like I just finished a parent interview this morning about their daughter who, you know, I don't know yet, but I suspect she's autistic. And my gosh, this poor girl is hypersensitive to everything, just everything, throwing out a used crayon, she feels really badly for the crayon, but like, you know, it's so generalized her sensitivity, and you know, sensory stuff, and all of that. I don't experience that level of very generalized sensitivity. For me, it's that specific sort of RSD kind of thing.
MEGAN NEFF: I love how you can put words around this stuff. Okay, so sensory, that's a big overlap, but I like how, again, you are… and I feel like another conversations I've had with you it's the globalness of some of the things that distinguish like autism from ADHD. But, yeah, what is your kind of sensory experience of the world?
DONNA HENDERSON: Yeah, so I think my perspective is that ADHDers and autistic people, one area of overlap with sensory stuff is hyperresponsivity to, you know, all kinds of things. You know, noises, lights, whatever. And I have a little bit of that. It's just a little though it doesn't majorly affect my life. I put on clothes that feel comfortable to me, that may or may not look great. But comfort is the most important thing.
If I have to wear something uncomfortable, though, it's not the hugest deal in the world. So, I would call it a minor hypersensitivity. So, as opposed to one of… well, I won't get into that story, never mind. I think that sort of hyperresponsivity is pretty typical in a lot of ADHDers. What I don't see a lot in ADHDers, but I see more in autistic people is hyporesponsivity, being less responsive to internal or external sensations. And I don't see a lot of atypical sensory craving. Sometimes sensation seeking if you have hyperactivity impulsivity, but not atypical sensory craving, like looking objects or smelling objects. That's just not typical.
MEGAN NEFF: I love that. Okay. And this is more question for clinical Dr. Henderson. I've often thought hypo responsivity and sensory seeking kind of went together. Like, if someone was hypo, then they might be sensory seeking because they're looking for that additional input. But am I kind of conflating ideas there?
DONNA HENDERSON: I mean, I think they can go together, but I think of them as separate things, you know? And when I think of hyporesponsivity, I think of interoception more than any other sensory system really, and like not perceiving, or contextualizing, or understanding, or responding to your internal sensations as much.
MEGAN NEFF: So, like, with interoception would you have pretty accurate understanding of what's happening inside your body?
MEGAN NEFF: Mm-hmm (affirmative.)
DONNA HENDERSON: I think so. I mean, when I've learned about it, it never resonated with me, I'm like, "Oh, my God, that explains it." Now my son, who is autistic, he's 22 years old. He has really, really, really low interoceptive awareness. And it's so important, I think, for clinicians and for everybody to understand this because I think people call it denial if they don't understand the physiological basis.
MEGAN NEFF: Absolutely, yeah.
DONNA HENDERSON: And I remember once he was in therapy with someone for he has a really bad needle phobia. And this became a crisis when he needed the COVID vaccine, of course, and so he was in in therapy for that. And she was doing a hierarchy, and she had him watch a video of somebody getting a shot. And he literally, like, scooted his chair back, he gasped, he put his hand to his mouth, and she stopped the video and said, "So, you're feeling anxious?" And he said, "No, I'm not." And I think that therapist could mistakenly call that denial, which is a psychological defense mechanism. But no, he genuinely did not realize he was anxious and that's really global for him.
MEGAN NEFF: Yeah, yeah, yeah. I have so many thoughts, but Patrick, I've been hogging the conversation, so…
PATRICK CASALE: You can continue to hog it. I'm lost in my own head. So, I'm just paying attention and listening.
MEGAN NEFF: Patrick flew yesterday, he traveled yesterday.
PATRICK CASALE: Yeah, I had at 5:00 AM flight out of California-
PATRICK CASALE: Got back to East Coast at 7:30 PM. So, my brain is not online.
DONNA HENDERSON: I feel you and I love it [CROSSTALK 00:14:58]. No, I was just going to say that. And you know what, that's something that has evolved for me as an ADHDer. I used to try to hide it a lot more. And now I'll say things like that, you know whether or not I have a good excuse like you do. I'm more willing to say in conversations, you know what? I just completely blanked out for no good reason. I actually really want to hear what you just said. Can you tell me again? And it's sort of freeing to be able to do that and not to constantly feel like I have to pretend I'm paying attention perfectly well all the time.
PATRICK CASALE: Megan and I just released our episode on masking. And that is just kind of the definition for me, in regards to communicating how I'm experiencing conversation or social interaction, is just to be like, I'm not really able to follow this or pay attention to this right now. I'm sorry. Like, I'm here, but I'm not here.
MEGAN NEFF: Yeah, yeah, yeah. I think that's a beautiful example of ADHD and masking to be able to own like, I'm sorry, my brain's space off, I do care about you. One, I've been getting more and more requests for resources for ADHD couples. You know, Kate McNulty has a great book for autistic partners. But I am yet to find like a really good book for ADHD partnerships. And I think this sort of thing happens a lot where the ADHD partner, we get distracted or we misplace something significant like keys, and the other partner experiences it as us not caring.
MEGAN NEFF: And yes, so I love how you model that ability to be able to say, whether it's to your spouse, or to someone else, like actually, I do care about you, my brain just, you know, went offline for a minute,
DONNA HENDERSON: Right, but it's hard because, you know, it takes a lot of self-awareness on everybody's part. And then it takes communication on everybody's part. So, here's an example. I listen late. So, when somebody starts talking to me, it takes me a few seconds to realize, "Oh, this person's talking to me, and I missed the first sentence." Right?
And so my husband will walk into my, you know, I'm in my home office now. He'll frequently just walk in and start talking while I'm writing. And then by the time I realize he's talking, I've missed, you know, the important first sentence or two, and then he gets upset. Like, "Hey, how come you don't listen to me?" And so I've had to explain, here's what I need, I need you to walk to me, say my name, and wait for me to look up, and then problem solved, right?
MEGAN NEFF: I love that because I feel like that's like advice you give ADHD parents. Like, get their name, get some sort of, like, visual cue. That's been so helpful in my family since discovering, you know, the majority of us are neurodivergent is task-switching language. Like, so if a child now comes up to me because that used to happen a lot with children, I'd be hyper-focused. And I'll now say like, I need three minutes to task switch out of this, and then I'll be able to help you. And to be able to just have that language of like, "Give me a minute to task switch then I can actually take in your words."
But yeah, I think that was actually one of our questions we wanted to ask you was around like, task switching, hyper-focus. Sounds like you're-
DONNA HENDERSON: Oh, God, switching, it's like my nemesis. I mean, sometimes I switch too easily, right? I'm writing a report, I'm into it, and I'll randomly think, "I should check my email." And then I do. And I realized that that's not, I'm trying not to judge myself too much for that because, as Johann Hari says, in his amazing book on attention, you know, there are 10,000 engineers on the other side of your screen that are doing that to you, right? There are forces that have nothing to do with my ADHD that are pulling my attention in this culture that we're now living in.
But yeah, sometimes I switch too easily. And then other times, I can't switch when I want to switch. So, I wish I just had more control over my switching and as a hyperactive type ADHDer, I need a lot of stimulation. So, I tend to jump from one task to another, which is not good, you know? It makes you make mistakes, and makes up less efficient, and is sort of tiring. So, what's a girl to do when she needs a lot of stimulation, and which switch, right?
MEGAN NEFF: I call it my tree branch projects where I will like, I'll switch to something because it might be like, I'll check my email, but then, like, will turn into this huge project and like, I'll be five steps over on a project. And like, how did I get on this? Like, why am I making a new landing page with a new… Like, why? Oh, because I checked my email, and that led to this which led to this, which I think I've found ways to structure my life where I have space for tree branch projects, which I've noticed that reduces my executive, like, stress a lot just by having the bandwidth to be able to chase those. But it is really stressful. And it's like, I just want to get this thing done, but I'm five steps over here.
DONNA HENDERSON: Yeah, but what I'm hearing is that you sort of changed the narrative about it. And so it's not necessarily a bad thing when you go off and do a new project. It's a branch of the tree, you know? And every branch has its own place, right? So, just thinking about it differently could be helpful.
MEGAN NEFF: Yeah, yeah. And I think-
PATRICK CASALE: And because I think you can-
MEGAN NEFF: Yeah, oh go ahead.
PATRICK CASALE: Sorry. I think you can get into the narrative, you know, especially, for a lot of ADHDers of like those "tree branch projects" that Megan's referencing as like, "I can't finish anything, I can't follow through with anything. Every time I start something, I diverge somewhere else and that makes me really frustrated with myself." So, just the ability to reframe that and think about it differently. I think, like you're saying, Donna, is super helpful.
DONNA HENDERSON: Yeah, I'm really great at starting things.
MEGAN NEFF: This is where I think my autism really helps my ADHD is I typically do finish projects. There's a lot of unfinished projects, but I typically do because the stress of having, like the completionist in me, the stress of it having it incompleted it is too stressful. And I've often wondered, like, how do you all do it? How to ADHDers who don't have the support of autism, like, do it? So, yeah, like finishing tasks, how do you navigate that?
DONNA HENDERSON: So, when I'm doing something for other people, it's super helpful, like when other people are counting on me to get something done.
MEGAN NEFF: And is the RSD, like, helping with that then?
DONNA HENDERSON: For sure, for sure. And I think that's just part of my nature. And you know, what's important to me. Honestly, I get a lot of help. My husband has amazing executive functioning. I have terrible executive functioning. And so he makes a lot of decisions, he does most of our planning, and it works out really, really well for us. And I'm lucky, we didn't know this about each other when we got married, but it's worked out well.
And at work, I used to try to manage my own schedule and I was a disaster. I made constant mistakes. I would triple-check something and still get it wrong. And I've just remembered, you know, Bill [INDISCERNIBLE 00:22:31] he wrote some great books. He's my mentor, and I once showed up at his house on a night when there was no meeting, no plan for me to be there. I literally walked in, like, "Hey." And he and his wife looked at me like, "What are you doing here?" I mean, that's how calendar-challenged I am.
And so I finally accepted that. And so at work, I now have somebody who manages my schedule. And it takes all of the decision-making and planning off my plate. And I listened to your PDA episode and I heard you, you know, talk about you needing control over your schedule, that's the exact opposite of what I need. I love it when somebody else decides what my schedule will look like. And then I wake up in the morning, and they hand it to me, and I follow it. Yeah.
MEGAN NEFF: [CROSSTALK 00:23:23] I wonder if, oh-
PATRICK CASALE: Sorry. Well, it's interesting, that's-
MEGAN NEFF: I'm curious if that's one of those subtle differences between ADHD and autism. Again, there'll be diversity, but like, yeah, my autistic daughter, it's like, what is the schedule? Let's make it together. Like, there's got to be urgency in creating the schedule. My ADHD is like, "Stop giving me decisions." Like, just give me breakfast. Like, just tell me what to wear. Just tell me what we're going to do today. So, I hadn't thought about that before. But like how we feel about our schedule and who's in control of it [CROSSTALK 00:23:59] subtle.
DONNA HENDERSON: Yeah, it would be an interesting thing to think about. We'd have to sort out the non-PDA autistics from the PDA autistics, of course, and then, so many autistic people also have ADHD. So, it could be messy. But it's an interesting thing to think about, you know.
And for me, you know, the important thing is, knowing that about yourself, and trying to set up your life to accommodate that and not judging yourself. Like, I used to get really frustrated with myself for being so bad at planning, and scheduling, and all that. And now it's another one of those things I can own and say, "Yeah, I'm terrible at that, and that's okay. I'm going to get help. You know?
MEGAN NEFF: And that's the nice thing is if there's a lot-
PATRICK CASALE: That was actually going to be my question. 
MEGAN NEFF: Oh, go ahead.
PATRICK CASALE: It's great, Megan and I are going to do this a lot today. That was going to be my question that you just answered Donna, was like, was there shame, and guilt, and frustration building up when, and initially it was like, why can't I do this? Why is this so challenging for me?
DONNA HENDERSON: Yeah, yeah, and I just kept thinking, "Donna, come on, concentrate, concentrate, you know, stop being so distracted." And get so mad at myself. And obviously, it's embarrassing too, you know, walking into somebody's house and just, you know, the million and one times I just screwed up my schedule. And now I have to laugh at myself and I have to be okay.
Dina Gassner said something really, really smart, wise, wise to me, once. Dina is an autistic researcher. And she wrote one of the forwards for one of my books, and she said, "The goal for any of us isn't independence, it's interdependence. It's understanding all the ways that you do and inevitably will depend on other people." And that's okay, right?
MEGAN NEFF: I love that, I love that. Yeah, especially, in psychology, there's a lot of focus on the individual. And I'm writing a book right now, Self-care for Autistic People, just kind of funny because I have a weird relationship to the term self-care because I feel like so much pop psychology is self-care, but without that interpersonal relational lens that, like, we are interdependent. Like, we have always been, modernity gives us the illusion we're not. But we do best when we're actually supporting kind of interdependence.
DONNA HENDERSON: Right, absolutely, yeah. I'm glad you're writing that book. I knew you were working on something. I didn't know it was that and I'm tired of all the self-care advice being exercise more, eat right, get enough sleep. Like, of course, those things are important, of course, they are. But you know, there's so much more to it than that. And those things are so hard for so many people, right?
MEGAN NEFF: Yeah. For both ADHDers and autistic people, right? Like, if you think about the executive functioning that goes into any of those tasks you just listed.
DONNA HENDERSON: Right, right, yeah.
MEGAN NEFF: So, like…
DONNA HENDERSON: Yeah, I'm going to try to think about how to say this without outing somebody. So, I have a challenging relationship with someone in my life who is not an immediate family member. And that person says hurtful things to me. And for years, I have then immediately, without thinking about it reacted and said things that I regret because I don't want to be hurtful or disrespectful, and also, because it just feels crappy when you lose it a little bit and say things you regret.
And I've been working on paying attention to what's happening in my body when that person says hurtful things. And so, you know, recently that person said something hurtful, and I was able to just notice, oh, my heart rate just escalated. Wow, like, I hear sort of a whooshing sound in my ears, my muscles just tensed and I feel like I'm preparing for a fight. And I was aware of my body. And because I could do that, it allowed me the three seconds of grace I needed to not just say something, but to respond in a way that I was proud of. And to me, that's sort of the beginning of self-care, to be able to notice what the heck is happening with your own body, right?
MEGAN NEFF: I love that. I love how you connected that, like, having that internal narrator of like I'm naming and narrating and, like, I sometimes call that self-attunement because we're attuning to ourselves. I love thinking about that as the basis of self-care. And I steal that from my book. I love that idea so much.
DONNA HENDERSON: Absolute, yeah. And I'm sure I'm not the first person who made that connection. But when I think about self-care, yeah, but I love that phrase. That's the first step is you have to be attuned to what's going on with yourself, you know, before you can do anything else, you have to know you're tired before you try to get some sleep. You have to know you're hungry before you try to put some food in your body. It's pretty basic,
MEGAN NEFF: Which gets back to that entire assumption, if it's not basic then nothing about self-care is basic, yeah.
DONNA HENDERSON: Right, that's true.
MEGAN NEFF: Can I… I don't know why I'm asking permission to diverge [INDISCERNIBLE 00:29:36].
DONNA HENDERSON: I know, right?
MEGAN NEFF: Because I'm very cognizant of like, I feel like I'm talking a lot, but there's one piece I want to make sure I get on our conversation today. And this is a conversation, I don't know if you remember us having it. It was probably one of the first or second times you and I had met. So, there's this term context blindness. I don't like the term myself. I prefer, like, I'll talk about out high context communication that gets into anthropology, which is confusing, need for high context communication. But there's a conversation where I asked, like, I was saying how, you know, someone asked me like, what's my favorite book? I really struggle with this. Do you remember this conversation?
MEGAN NEFF: And okay, so I asked you, and I was saying how like, I would struggle with that because I'd be thinking about what bucket are we talking about? Are we talking about psychology buckets? Are we talking about fantasy books? Like, how do I possibly pick one favorite book? What's the context?
And what you said, you were like, "Well, for me, if my neighbor was asking it, like this book would pop in my head. Whereas if I was at work, this book will pop in my head." And I remember asking you, "Like, you mean, you're not analytically like sifting through all that." And that was such an aha moment for me around, there's definitely something different for an ADHDer who's not also autistic around intuitively, I guess, picking up context cues would be the way to say that.
DONNA HENDERSON: Yeah. So, my friend, Dr. Amara Brooke, who's a psychologist-
MEGAN NEFF: Yeah, she's great.
DONNA HENDERSON: Do you know… yeah, well, she once in a conversation with me called it context independence. So, I liked it.
MEGAN NEFF: Oh, I like that term.
DONNA HENDERSON: Right. It was too late, the book had already gotten to press. I couldn't stick it in the book. But I liked it. It's context independence, right?
MEGAN NEFF: Yeah, because it doesn't depend on the context. I'm not going to change my authentic self based on the context.
DONNA HENDERSON: Right, right. And so there's no right or wrong. There's two different ways of, sort of, moving through the world. And for non-autistic people, for the most part, well, everybody has top-down and bottom-up processing, right? So, I'm going to oversimplify, but for most non-autistic people, the top-down processing is prioritized. And so we take the context first. And here's the key, that happens for us subcortically, automatically, within milliseconds without our awareness. It just-
MEGAN NEFF: And it's not through the prefrontal cortex, right?
DONNA HENDERSON: Correct. It's subcortical, right? Correct. There's no awareness, there's no effort the overwhelming majority of the time. It just happens like magic, right?
DONNA HENDERSON: But for most autistic people, there's more of a bottom-up processing where you have to take in all the details, get all the details, and sort of build up to the big picture from there.
And, again, not better or worse, but there are different advantages and disadvantages to each style. And a huge, huge disadvantage to the context-independent style, the autistic style, is the time, and energy, and effort that it takes to move through all of that information when you're under pressure to respond to somebody, right?
And so often, I get, you know, referrals for kids, or adolescents, or adults where everybody is saying, "We think they have slow processing speed." But on testing, their processing speed is just fine because testing does not require context. So, it's working tempo, it's conversational tempo that you might need extra time to build up to figure out the context. Does that make sense?
MEGAN NEFF: Totally, yeah. I see something similar that often autistic people are deep processors, not slow processor. Like, we're processing so much so deeply that it takes more time. Yeah, absolutely.
DONNA HENDERSON: Yeah, for sure, for sure. Especially, compared to, you know, a hyperactive impulsive style ADHDer like me, we tend to be fast, and, you know, I don't always go as deep. I'm capable of going as deep. But as I move through my day, it's not my natural way of being.
MEGAN NEFF: So, in my first Venn diagram was putting autism and ADHD together. I put high-context communication in the middle because I talk with a lot of ADHDers where it feels like they share a lot of context to get to what I think neurotypical people might call the point. Like, how would you categorize that in the top down, bottom down? Or is that totally unrelated? And also, do you also observe that in ADHDers or on also autistic kind of a high context way of sharing stories or divergent to the point.
DONNA HENDERSON: In the people I've known who are most context-independent or in the traditional term, you know, have the most context blindness, I haven't noticed, like, it would be interesting for me to go back and look how many of them also had ADHD, right? I think I might do that because that would be very, very interesting. And I've lost track of your question now.
MEGAN NEFF: I love that.
DONNA HENDERSON: I have no working memory.
MEGAN NEFF: Like, if high context communication or like, in telling a story needing to share a lot of context, if that feels like an ADHD thing, or, again, maybe [CROSSTALK 00:35:20]-
MEGAN NEFF: …autism, that doesn't feel like maybe it's too-
DONNA HENDERSON: No, to me that feels like if you don't intuitively have the context of what your listener already knows and actually needs to know or wants to know, you're at risk of giving too many details or too few details, right? And that happens sometimes too.
MEGAN NEFF: All the time. Like, I do this, I hear this all the time. I either I'm sharing not enough or too much. Like magical Goldilocks of just enough information.
DONNA HENDERSON: And to me as a non-autistic ADHDer, that's very intuitive. Like, how much detail to give someone in any given moment, and I'm not saying I, you know, get it right 100% of the time, obviously, but for the most part, it's pretty intuitive and easy for me to know that. And I've never had like a complaint about that.
MEGAN NEFF: That's fascinating. I did think that was kind of an ADHD thing to, like, share long-winded, verbose stories that diverged all over the place. But that's really interesting to hear you say that.
DONNA HENDERSON: Yeah, I think ADHDers, you know, sometimes we maybe talk a lot, or can be interrupting, or maybe go a little bit off-topic, but to have a pattern of providing too much what we would call irrelevant detail because that's really what you're talking about. I don't personally see that as an ADHD thing. It's not for me, it's not something I've noticed in my clients.
PATRICK CASALE: Sometimes I wonder if that being an autistic trait, if it's also because you're trying so hard to read the other person's body language and facial expressions of how are they reacting to said information. And if I'm not getting the reaction that I think I should be getting, then I'm offering more and more and more information. And then I get lost in that explanation. And then I'm like, "Did that even make sense?" And the person is like, "No, I didn't track that at all." My wife will look at me and be like, "Why are you telling me all of this?" I'm like, "I was trying to figure out where the reaction was to what I was saying, and then, ultimately, I get lost in that."
DONNA HENDERSON: And would it like feel natural for you or not to just like, what I would do in that moment is say, I can't read your reaction or I'm not sure if you want to hear more about this. Like, I would check in with the person verbally.
PATRICK CASALE: No, I don't think that comes to mind immediately for me, when I'm in a conversation like that. I think it's just like, I get this anxious process that comes over me where I'm like, "Oh, my God, I don't know where to go from here. And now I feel trapped in this conversation."
DONNA HENDERSON: And I wonder if that's, you know, partially just non-autistic conversations not being intuitive for you, and partially just having had bad experiences with conversations in the past, then they bring out that anxiety. And, like, so I don't happen to have either of those differences. And so for me, if I'm in a conversation, and I feel like wait, we're having a disconnect, the most natural thing is to be like, "Hey, I think we might be having a disconnect. What's going on? Like, what do you want? Do you want me to talk more or less? What's happening?"
PATRICK CASALE: Save me a lot of time connecting.
MEGAN NEFF: And I do that too, Donna. And I think I've trained myself, like I have developed a hypervigilance, and I think this is part of autistic ADHD masking, a hypervigilance to other people. So, for me, like, gaining psychological safety in conversation is knowing what's happening. So, I'll do a lot of like, "Okay, what's happening here?" The only therapists that I've actually worked well with was someone who was willing to do interpersonal work with me because I don't feel psychologically safe in a conversation unless I can check in with the other person and get an honest answer about what they're experiencing in that moment.
DONNA HENDERSON: Yeah, that makes a lot of sense to me. And I think I've heard similar, you know, experiences from quite a lot of autistic people, late diagnosed autistic people, in particular, yeah, yeah.
MEGAN NEFF: Yeah. Okay, small talk. Like, I've heard you talk about bread crumbs. You pick them up, like do you like small talk? Do you tolerate small talk? Like, I know you're good at it.
DONNA HENDERSON: Yeah. So, I have to tell you this story. Sorry, I'm going to take a drink of water first. Sorry about that. So, I have a colleague who is autistic. And his name is Eric. And we've worked together for over a decade. And we work very well together. And I walked into his office one morning, I was in a big hurry. And I said, "Hey, the client you're seeing today…" And then I caught myself and said, "I'm sorry, that was so rude of me, how was your weekend?" And he laughed, and he was like, "Seriously, I do not need you to ask me about my weekend. I do that for you guys, meaning all of us non-autistic colleagues. And I'm good if we never ever do that again."
And to be clear, like, I think Eric and I like really like each other and work very, very well together. But he's like, "There's no need to get into any of those social niceties." So, that was probably two, maybe three years ago. I cannot tell you how hard it is for me to like, engage my prefrontal lobe and stop my natural way of interacting when I see him and not say, "Hey, what's new? How's your daughter? What's going on? You're taking a vacation this summer?" It's so hard.
MEGAN NEFF: But you're putting on a break to not do that. Like, for me and I think for Patrick, it's like forcing myself. It's like, I have to hit the gas to get myself to ask those damn questions that I really don't like. But for you, it's like putting on a break, it's holding something back.
DONNA HENDERSON: That's exactly right. And I feel like it gives me this tiny little window into what it must be like to be autistic and to have to be, like, very aware in the moment of this is what my urge is to do in this situation. But this is what I must do if I want this situation to be comfortable for the other person. It's hard. And I only have one person I do that with.
MEGAN NEFF: That's such a great example of the double empathy problem of like this two-way street of like, it's just a different cultural reference of how we're communicating. I had never thought about small talk that way as like, hard to hold it back. I have a lot more empathy all of a sudden for people.
DONNA HENDERSON: Well, but most of us don't hold it back, right? I mean, it's just sort of unnatural. Like, if I see one of my neighbors, I'm like, I will cross the street in order to just make small talk for five or 10 minutes because for me, that's very… Patrick's laughing.
PATRICK CASALE: [CROSSTALK 00:42:17] right now with my neighbor trying to do that to me the other day and me pretending not to hear them, and like getting in my car, and like backing out the driveway looking at them in the eye like…
MEGAN NEFF: I literally cross the road. Like, if I see someone I'm I going to cross, I will cross the road, but I'll do it soon enough, so it doesn't look like I'm doing it to avoid them. But I will cross the road even to avoid eye contact.
MEGAN NEFF: Like, just to avoid, like, any sensory experience of interacting with another human body.
DONNA HENDERSON: All right, so I know you're supposed to be asking me questions. But may I ask you guys a question about this?
MEGAN NEFF: Yeah, absolutely.
DONNA HENDERSON: So, with my son, and he wouldn't mind me saying this, you know, as a non-autistic person, one of the ways I feel connected with other people is by connecting verbally, by talking. And it's not always deep and important. A lot of times it's, "So, what you're doing tonight? How was your day?" And kind of stuff, which is like the absolute last thing in the world he ever wants to do.
And so the only way I've ever figured out of really connecting with him is to sort of go entirely to where he is. He loves military history, so like to go to a battlefield with him, to go to a battle reenactment with him, which is like my idea of hell. But I do it because like, that's… but I don't know, like how to bridge the gap so it's not, you know, one way or the other way, but that we can build some connection. You know what I mean?
MEGAN NEFF: Absolutely, absolutely. First of all, I love that as a parent you're doing that. You're entering into their, I call it special interests, like our ecosystems, that you're entering into his ecosystem. Because you're right, like Patrick and I have talked about this a lot of, if you want to get access to the inner world of an autistic person, like entering through special interests. And I think a lot of parents who are trying to figure out how to connect with their autistic kids, I think that's often what they're doing.
MEGAN NEFF: But yeah, it'd be nice for you not to have to go to like a historical event to connect with your son. And so, yeah, I think talking about it, like, and I don't know if there's a way of like talking about it without doing it. But that's often how, even if it's just to warm up the conversation, right? Because the questions are like, "What are you doing tonight?" Like, to me, that would be a sensory demand. But if the conversation has been warmed up through a special interest and then if we're able to then link to other things that, yeah, I think about it as a warm-up.
And again, from a nervous system lens of like, if it's just a question that's invoking a deep response, that's a demand, my nervous system isn't warmed up for social interaction. But if it's been kind of melted and warmed through talking about something of interest, and then diverging to something that might feel more connecting for both of you, that's one approach I take. I don't know, Patrick, do you have thoughts on that?
PATRICK CASALE: Yeah, I think that for people in my life, where I don't necessarily have safety, or I can be my true self around them, then that small talk, that demand, I'm going to shoot it down pretty quickly. And that's probably where I would really appreciate, you know, moving into the conversation through even a subset of the special interests or just something in general, that felt much more interest-focused.
But for people who I have regular contact with, like, several of my best friends, my wife, etc., like, there's definitely small talk that goes on just because the relationship feels safe. And I also understand that that's what they need in a lot of ways in order to have some sort of reciprocity in the relationship. So, I'm not like freely giving it out, I'm not going out of my way to have it. But I'm certainly much more amenable to that.
If my mom wants to call me right now. And like, say, "Hey, how was your weekend? How was your birthday?" I'd be like, "It was fine. It was fine." But it's just a very different relationship for me. So, I do think it matters for me, specifically, on the relationship, on the context of the relationship too, and the safety that has already been established in terms of just communication.
And I think it's complicated. Like, there are definitely times where my wife is asking me questions. And I'm like, "I don't want to have like the small talk conversation with you right now". And I will be able to name that. Megan's been able to name that with me before when I said, "Hey, Megan, how was your day?" And she's like, "Stop asking me that." So, I think it's about being able to also ask for what you need in that moment. Like, hey, stop asking me that because that's not helpful here. This isn't where you have to interact that way, that's really helpful for me."
DONNA HENDERSON: Right, right. And for me as a non-autistic person, it's also, I'm working on not thinking of there being a right way and a wrong way to interact. And it's really hard for me, it's really hard, yeah.
MEGAN NEFF: It's hard to not think there's a right and a wrong way.
DONNA HENDERSON: Yeah, I think my way is the right way.
MEGAN NEFF: No, and don't we all as humans, too.
DONNA HENDERSON: Sure, sure, yeah.
MEGAN NEFF: Yeah. I'm like looking at the clock and now I'm feeling pressure of like, we should have some profound ending, I should have some profound question. Like, what is your favorite part about being an ADHDer? Or what is the hardest part? I don't know [CROSSTALK 00:47:56]-
DONNA HENDERSON: I want to bring something, yeah-
MEGAN NEFF: Yeah, go ahead.
DONNA HENDERSON: No, there's no pressure because we're just going to do our awkward goodbye in a minute and it'll be excellent. But I want to bring up one thing that I wonder about is a difference, and obviously, everybody's an individual, but working memory, I think about. I've met so many autistic people who don't have ADHD, who have absolutely phenomenal working memory. Like, phenomenal working memory.
DONNA HENDERSON: And I as an ADHDer have, like, absolutely terrible, terrible working memory. And for those of your listeners who aren't super familiar, I tell kids, it's the blackboard in your brain where you can write something down while you're working on it. And I write in disappearing ink on my blackboard.
DONNA HENDERSON: And, you know, one thing I've noticed, just with family members who have great working memories, they think a lot about the past and the future. And I am almost incapable of thinking about the past and the future. I just am very much in the moment and that leads to my difficulty with planning. And it's good and bad, right? They are so much better than I am at planning because they can hold the future in their brains. And, you know, think of different scenarios and choose the best scenario, which is very hard for me to do, but they also obsess a lot about the past and the future, which I don't tend to do. So, it's just something I've thought about as a difference.
MEGAN NEFF: And that like, and I don't love this. I think, in general, we're going to find ways of moving away from ableist language but time blindness is how, like, that's often referred about of just the here and the now. And I love how you both see like what it gives you, but also what it takes from you, right? There is less of that obsessive. I think I've noticed that, too.
I hadn't connected the obsessive tendency toward, you're right, that lack of lack of time blindness, but like that ability to perceive the future and the past definitely leaves us vulnerable. Somehow I managed to have both. I both struggle with time perception and my working memory is terrible. But I also do think a lot about the future and the past.
DONNA HENDERSON: Well, maybe my theory is wrong, then.
MEGAN NEFF: Well, I mean, maybe it's part of being an autistic ADHDer, maybe there's, yeah.
MEGAN NEFF: Do you do both Patrick?
PATRICK CASALE: I obsess about the past and the future constantly. And I'm a really good planner. I mean, I'm planning entire events, and retreats, or things that feel very natural to me. I really struggle moment to moment working memory where I will forget what I'm doing during the day all the time. I'll forget like, why I went down to the kitchen for something. I will forget like the three things that are in my mind that if I don't write them down immediately or respond to immediately they'll be gone. But everything else is constantly obsessing, and thinking about, and analyzing, and processing all the different alternative outcomes, so quite exhausting.
MEGAN NEFF: Yeah, that's my experience too, what you just described.
DONNA HENDERSON: As a non-autistic ADHDer, like, everything you just, I can't relate to that, that constantly, like planning, and obsessing, and running scenarios that you're… I'm like, "Oh, God, make it stop." Like, I just don't do that, which it's a blessing and a curse, right?
PATRICK CASALE: For sure. And, you know, I've said it very often that I wish I could just turn it all off. Like, I wish I could just stop it. And yeah, definitely, it's exhausting.
DONNA HENDERSON: It sounds exhausting.
PATRICK CASALE: And on that really negative note, this has been fun.
DONNA HENDERSON: I'll give you a quick positive, I don't want to end on a negative. Do I have time to do a quick positive-
PATRICK CASALE: Yeah, sure, absolutely.
DONNA HENDERSON: …so we don't end up… So, I tried stimulant medication a little bit over the past year, which I haven't really done in the past. And it really worked well for me in that it took away the urge to constantly move. I was able to sit still. I was able to get so much work done. But then I inevitably ended up with like a headache or my neck would be stiff, or my back would hurt. And I finally realized and I changed my internal narrative, my body is helping me out by wanting to move all the time. That's what my body needs. And I just need to lean into that and not try to fight who I am and my wiring.
PATRICK CASALE: I love that.
MEGAN NEFF: I love that. I love thinking through like, yeah, the ways your body and these things we call symptoms are actually working for you, and helping you out, and telling you what you need, yeah.
PATRICK CASALE: Absolutely, yeah. Well, this has been a lot of fun and I wish that… I'm surprised like the hour went like that. And it was really, really great to have this conversation. I feel like we could have continuations of this for sure and go down so many different, like, areas and different perspectives. So, thank you so much for coming on and just sharing some of your story, too.
DONNA HENDERSON: Well, thank you so much for having me. I agree, it went quickly and it was a lot of fun.
PATRICK CASALE: Megan, you any got anything before I awkwardly sign us off?
MEGAN NEFF: This is the part I get really awkward at. I'm so glad you came on Donna. Like, this has been, like, so fun to have this kind of hybrid clinical personal conversation. And thank you for your vulnerability. I know it is different to bring our lived experience to the conversation, especially, as clinical psychologists. We're kind of taught not to do that. So, thank you for being willing to do that.
PATRICK CASALE: Totally. So, for everyone listening to the Divergent Conversations Podcast, new episodes are out every single Friday on all major platforms and YouTube. You can like, download, subscribe, and share.
And Donna just made me realize while I was saying that we didn't give you any opportunity to share where they can find more of your work too. So, please feel free to-
PATRICK CASALE: …share that as well. We'll put it in the show notes.
DONNA HENDERSON: That would never have occurred to me actually. I'm the worst with that. My website is drdonnahenderson.com. And the website for the books is isthisautism.com.
PATRICK CASALE: Perfect. All of that will be in the show notes so everyone has easy access as well. And now I don't know what else to say, so goodbye.

Friday Oct 13, 2023

Autism and narcissism can sometimes get lumped together in conversations, but despite there being some seemingly overlapping traits, it is important to not generalize all people with narcissistic traits as individuals with a narcissistic personality disorder.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk about the stereotypes, misconceptions, and misunderstandings surrounding autism and narcissism, as well as the traits that are often perceived to go with them.
Top 3 reasons to listen to the entire episode:
Understand how social media, a more polarized society with low tolerance for disagreements, and privilege have impacted and shaped the use of the terms Autistic and narcissistic.
Identify some of the ways and reasons that Autistic individuals may face challenges in perceiving the world from someone else's perspective, leading to misunderstandings in relationships and conflict in the workplace.
Learn how communication styles, the ways autistic individuals find connection, and alexithymia can lead to mislabeling autistic people as unempathetic or narcissistic.
Both diagnoses are complex and multifaceted, so join us in unraveling some of the complexities of narcissism and autism.
*DISCLAIMER: Due to the limited time available in a podcast episode, we were only able to scratch the surface of the many nuances and conversations surrounding these complex diagnoses. We also want to emphasize that there are a lot of people with narcissistic personality disorder who are doing the work to get insight into it, so we don’t have the intention of putting down anyone who has received this diagnosis.
This is only a glimpse into the topic, so we encourage your questions and comments and will try to address them when we are able to do so or in a future podcast episode. You can reach out to divergentconversations@gmail.com.
DR. MEGAN NEFF: So, Patrick, earlier this week, you sent me a screenshot of a bunch of DMs asking that we do an episode on narcissism versus autism. And when I saw those DMs, I had a mixed reaction, both like, "Yes, I know we need to go there. And B, like, I don't want to go there."
But I know we need to because this has also been the biggest request I've gotten for a Venn diagram, which I haven't actually created. And I'll unpack that later. So, people are really interested in this topic of what is narcissistic personality disorder? What is autism? So, that's what we're going to talk about today.
PATRICK CASALE: Yep. And I could actually experience your experience through your responses via text message window when you sent them.
DR. MEGAN NEFF: Oh, what was that like for you?
PATRICK CASALE: It just felt like I was attuned to how you were feeling. And I also just kind of was thinking about how often it gets mentioned in the same sentence, especially, on social media. And I know that just you've been using the term narcissism, narcissistic personality, etc. Right now is, like, a pretty hot topic.
DR. MEGAN NEFF: I think that's why it feels like a really hard conversation to know how to enter because there's so much misinformation on so many things. And I want to, like, provide so many disclosures, or caveats, or footnotes because everything we're talking about like co-occurring personality disorder and autism, narcissism, theory of mind, and all the things we'll get into, like, everyone of those deserves a really hefty footnote.
PATRICK CASALE: Yes, and I know that we're also doing this as kind of like an introduction to the topic. So, we're going to use that as a blanket overarching statement right now, is that this is a 30-minute conversation, this is a hot topic, this is going to potentially create some controversy. We know this, and we want to do this as intentionally as we can, and we will also come back and do more episodes surrounding same topic. Is that fair to say?
DR. MEGAN NEFF: That is so fair to say, thank you for saying that. Yeah, yeah. First, let's spin out like a little bit on narcissism. I'm curious, your thoughts. I think this is a tricky diagnosis. Okay, first, though, one thing I'm seeing is an increase of people quickly calling other people narcissists. And narcissistic abuse is a very real thing. And I've worked with several people who have been on the other end of that and it is terrible.
And I am also seeing this cultural tendency where people are kind of knee-jerk reaction, "Oh, that's a narcissist." Or, "That's narcissistic abuse." Where I think that is, you know, we talked about misinformation a while back, I think around narcissism and how quickly people are calling other people in their lives narcissist, I would say that's an area where I'm seeing a lot of misinformation. First of all, let me just check in, do you agree with that assessment? Do you disagree?
PATRICK CASALE: Yeah, I agree 100%. And this comment might get some slack, too. But slack, that's a whole word, slack. I don't know. People may not be happy with this comment as well. But I think that this is like social media driven in a lot of ways as well because it's, again, we talked about like, TikTok diagnoses, how you and I are both on board with self-diagnosis, we both believe that it is a valid tool. And I also think that there are a lot of content creators right now who are, specifically, talking about narcissistic abuse, narcissists, in general. And you're right, narcissistic abuse is a completely valid experience. And it's a very traumatic one for the person who's on the other side of it. However… not everyone who exhibits one tendency, or trait, or characteristic is then therefore a narcissist.
DR. MEGAN NEFF: Right, right.
PATRICK CASALE: And, I think that's the murky stuff, right?
DR. MEGAN NEFF: Yes, absolutely. And I mean, you know, Pew Research has looked at this. This was before the pandemic and before everything that's happened socioeconomically in the last, you know, four or five years, they showed that we're living in the most polarized state in the US ideologically than ever before. I cannot imagine what the numbers are now.
What happens when we are in a polarized culture is as humans, we just tend to become more reactionary. And I think part of what I see happening on a cultural level is we are losing our tolerance to disagree with people, we're losing our tolerance to be uncomfortable by someone else's view. Like, if we're in disagreement, then you are X to me. And there's this tendency then to project onto the person we disagree with, like, character traits, and or diagnoses like narcissism, or the other… I think the two personality disorders that are kind of, I would say, misused in this way are borderline personality disorder and narcissism.
PATRICK CASALE: I agree 100%. And I know we could go down that road and do an entire, like, hour-long episode about the projection from a clinical standpoint as well. And I know we want to keep it-
DR. MEGAN NEFF: [CROSSTALK 00:06:15] the same topic.
PATRICK CASALE: This is a tread lightly conversation, I just think that somebody-
DR. MEGAN NEFF: It is, it is.
DR. MEGAN NEFF: Yeah, are you nervously sweating right now like me?
PATRICK CASALE: I can, like, withstand commentary for the most part. So, without it really [CROSSTALK 00:06:36]-
DR. MEGAN NEFF: Interesting. For me, it's like, I guess the commentary, but for me, it's also about the saying something, you know, I am more ADHD in my language use than autistic, so often I'd say things like, that's not what I meant. And then it's the anxiety of living with that comment being out there out of context and wishing I would have said it differently, yeah.
But I think you're kind of writing this in. Okay. So, narcissism and autism. This question comes up a lot of either people who have perhaps been diagnosed with narcissistic personality disorder, but they think they're autistic, or I think a lot of the comments you get, and also comments I get are from partners of, like, potentially autistic… often what I see, I'm curious what you see, it's often heteronormative partnerships and where it's the woman reaching out about her husband. Is that what you also have mostly?
PATRICK CASALE: That is what I see for the most part. And those are the DMs that we get, "Please help me help my husband. Please help me better understand him. Please explain the differences between the two because I think that my husband's autistic, but he's very narcissistic." Or something to that degree. And I've heard that the two go hand in hand, is what I also hear.
DR. MEGAN NEFF: Yeah, yeah. So, I actually have a draft of a Venn diagram. I didn't publish it because I didn't have the psychological strength. Well, actually, it's not just about that, I think to make a Venn diagram, I'd have to go revert to a lot of the unfortunate stereotypes about autism. And so I have complex feelings around that because I'd be comparing like theory of mind to narcissistic, like, kind of, I can't remember the clinical term off the top of my head, but that tendency to, it's all about me tendency in narcissism, to kind of live in your own world. So, that's the other reason I haven't made a Venn diagram is it falls back on these very stereotypical pathological ways of talking about autism to compare the traits. And I think that's why I've steered clear of the conversation.
However, like, these autistic things are stereotypes for a reason. And to me, that's, I think, where the conversation gets anxiety-inducing and gets complicated, of there are autistic people out there who struggle with theory of mind, and just to define theory of mind. It's that tendency of like, seeing the world through someone else's lens. It's been reconceptualized by Milton and the double empathy problem of autistic people tend to do better with theory of mind with other autistic people, allistic people do better with it with other allistic people.
But I think even…. I don't know how to say this, Patrick, I don't know how to say this. I really like the double empathy conceptualization. That's my experience of theory of mind. It's interesting, I've definitely seen and worked with autistic people where that classic definition of theory of mind is a struggle of like perceiving the world as someone else's do. I think that is more associated with alexithymia than autism.
So, when someone is autistic and has severe alexithymia, they tend to be very external-oriented thinkers versus internal-oriented thinkers. Meaning, rather than think about like their internal experience, they're often thinking about external factors.
Someone who doesn't think a lot about their own internal experience, probably isn't going to think a whole lot about someone else's internal experience. Okay, I'm going to stop there for a second because I feel like that was a bit.
PATRICK CASALE: No, I think that's a great conceptualization. And I think you're right. So, if you're not thinking of your own internal experience, it's really hard to place yourself into the position of someone else and to think about their own internal experience, right?
And if we're thinking about alexithymia, we've done an episode on it, and that episode, obviously, doesn't do the topic justice because, it's, again, just an hour, but the reality of like, if I'm struggling on my day-to-day with my own internal experience, and really being able to connect to it, does that then therefore make me narcissistic? And the answer is, no, absolutely no. Like, NO!
DR. MEGAN NEFF: But it can feel that way to the partner, the partner, particularly. So, there's this really unfortunate term called Cassandra Syndrome. It's very pathological, it's essentially the experience, and again, typically, heteronormative partnership they're talking about here, where a woman, I think, originally, it's like a woman goes to therapy, and she thinks there's so much wrong with her. And what gets unpacked because partly, her partner's telling her like you're too emotionally needy, and all these things, and then we get to unpack that a lot of these women were married to undiagnosed autistic men. So, again, it's a really pathologizing way of thinking about it.
But also, like, there are a lot of people whose experience is one of significant confusion when they're married to an undiagnosed autistic person. And I would say, someone who's undiagnosed and not curious, right? Like, if you're autistic, and you're curious, you're curious about your experience, you're curious about your partner's experience, that's a whole different story.
Typically, the people who are contacting me, probably the people contacting you, their partner is not curious. Again, that external-oriented thinking is probably really high. But there's also a lot of defensiveness around even considering something like autism. And so there's not space. I mean, we've talked about the metaphor of constriction versus openness. There's no openness in the dyad to talk about what's happening.
So, I do see it in those experiences, where for the partner who's… and sometimes if, you know, like the partner is autistic as well. ike it's an autistic/autistic partnership, but this is still happening, it's like the only way to exist with that person is to live in their subjectivity. And what I mean by that is to live within the like, framework, and Lthe rules, and the world of the partner who is not as curious and struggles to have insight into their internal experience. And that can be a really hard way to have a relationship. It's also very similar to narcissism, the only world that exists tends to be within the narcissist's subjectivity.
And again, someone with NPD, can get treatment and like, I don't want to say that this is like, and a person with narcissism who has good insight could also work on this. But classically speaking, is to exist in the other person's subjectivity. The reasons are totally different. But the experience could be felt very similarly for the partner. Could that make sense?
PATRICK CASALE: It makes perfect sense. And I think that's an important part. That's probably one of the most important things to hone in on, right? How is what exactly what you just said, the experience can be similar, but the intention or the reason is different, right? Like, so that's something to really think about, is the experiences can look almost like mirroring one another if you're coming at it from a certain perspective, but the reality is there's foundationally different reasons for what's happening in the experience. And I think that's really important. And I think that gets overlooked, probably, the most often.
DR. MEGAN NEFF: Yeah, absolutely, absolutely. Yeah, yeah.
PATRICK CASALE: So, let's talk about other things then because you said, "I have the Venn diagram, created it, but publishing it would take too much psychological energy and labor." Most likely because of the responses I imagine in the comments and you would have to be very available to it.
DR. MEGAN NEFF: Yeah. Well, those Venn diagrams go viral, and I don't want to be promoting stereotypes about autism, so I don't know how to make it. And, yeah, I don't know how to make it in a way that, like, I guess I could do a star and an asterisks next to each trait. But I really think the reasons they look similar is the case of autism with severe alexithymia. So, that's a hard thing to nuance in a graphic. Maybe someday I'll figure out how to do that. Because the other one that comes up is a lack of empathy, right? Like, that's one of the reasons someone seems narcissistic.
So, again, lack of empathy, there's been brain studies on this. They looked at brain scans, there's a kind of a, I won't get into the design of the study, but essentially, they did brain scans. And then when they controlled for alexithymia, so controlled for means when they separated the autistic people with alexithymia from the autistic people without alexithymia, they did find that autistic people with alexithymia had lower activity in the empathy regions when a loved one was experiencing pain. For autistic people without alexithymia, it was the same as allistic people. So, it's alexithymia, not autism that can impact empathy regions in the brain.
So, where was I going? Empathy. The other reason besides alexithymia an autistic partner might not be as empathetic as an allisic partner might want is because of communication, right? Like, I'm not a mind reader, I rely on explicit communication. If my partner's upset with something but hasn't told me why? I mean, I'm pretty good at picking up patterns and cues. And I'll usually ask, but I'm trained to do that. So, it also can be a communication difference of, especially, if one partner is really indirect in their communication, but they're expecting their autistic partner to be able to pick up on indirect communication, that could show up as my partner has no empathy, when really, that's a communication issue.
PATRICK CASALE: And I imagine that right there is probably the crux of so much of what we're talking about, is these miscommunication styles in so many ways because in partnerships, in general, whether it's allistic/autistic, autistic/autistic, the communication that's being missed and not explicitly being asked for, or communicated, or being able to say, this is what I need to be able to communicate in terms of our relationship or process, what you're saying. I mean, if you're not a trained clinician, these are skills that people often do not have, or possess, or are able to articulate.
DR. MEGAN NEFF: Yeah, yeah, exactly. So, another communication one that can look like narcissism is how we connect. So, for example, a lot of autistic people, we connect by sharing stories. So, Patrick, if you were like, this stressful thing happened to me, blah, blah, blah. I might be like, "Oh, my gosh, one time this thing happened to me." And like, that's a natural way for us to connect.
For someone outside of our culture, it looks like, "Oh, Megan Anna just made it about her." Versus what I'm really communicating is like, oh, I can understand that. I think I can understand the emotion you're experiencing because I had something similar.
Now, what I've learned to do is the dance back. This is where like, Patrick, if you were sharing something, I maybe share a story about a similar experience, what I've learned to do is an explicitly bring it back to you, be like, "You know, so I kind of felt like this when that happened to me, do you feel something similar?" Because I've learned adding that explicit, kind of, dance back is communicating. I'm sharing this because but I'm wanting to center your experience. I'm not trying to center it.
But that's kind of a sophisticated thing to learn. I think I learned that through masking, through training. There's a lot of autistic people where they don't do that dance back. So, the people in their lives think whenever I share anything, they just end up making it about them.
PATRICK CASALE: Right? And in reality, what you're trying to convey is like, I have experienced something similar and I do, in fact, have empathy for you. And this is my way of sharing that I can connect with your experience.
And I think, again, so you just mentioned it again, but the training, and the intentionality, and the curiosity here are, you know, we're very privileged to be a percentage of human beings who not only have higher education, but are trained clinicians, and are trained in behavior, and are trained in tracking, and attunement, and inferring.
And I think that for a lot of people listening to this episode who are not trained, right, clinicians, it's so easy to miss the mark and then to take it really personally. Whether it be via communication, or, you know, if you feel like your partner, or your friend, or your family member's always centering their experiences, or they don't have empathy for your problem, or your struggle, that's going to feel pretty crappy regardless of the reason. And it's really easy to put language to it nowadays and say, "Well, it's because they don't have empathy. They don't care. They're narcissistic. They don't care about my experience at all." And that perfectly well could not be the case.
DR. MEGAN NEFF: Right, right. And it also might be the case.
PATRICK CASALE: Right [CROSSTALK 00:21:11] this conversation is so complicated because I think you could say that for almost everything we kind of denote, right?
DR. MEGAN NEFF: Yeah, yeah. I mean, like, not all autistic people are awesome humans, just in the sense that, like, not all humans are awesome humans. Maybe there is an autistic person who does, again, because they're external oriented thinkers and all these things, they do, like, struggle to think about… worries in partners a lot because I think a lot of our request comes from partners, their partner's experience. And maybe like, we haven't even talked about characters and values. Like, maybe they are lower on the empathy scale for other reasons or the compassion scale, or maybe they're narcissistic, right? Like these things can co-occur. That's another misinformation thing I'm seeing a lot is where people are saying you can't be both autistic and have a personality disorder. I think someone put that on an infographic. And that's just not true.
Before you diagnose personality disorder, you have to rule out what are considered the neurodevelopmental conditions or any other reason that would, like, better explain the symptoms you're seeing. So, in the case of someone who's autistic, if they are having symptoms beyond what autism and I would say, beyond what traumatized autism could explain, then you might also diagnose the personality disorder.
And if we conceptualize personality disorders as kind of broadly speaking, a vulnerable neurology paired with an invalidating environment, of course, we're going to be more likely to develop personality disorders. And that's also well documented that we do have higher rates of personality disorder. And I don't think that's all misdiagnosis. I think it's because we have a very vulnerable neurology and we're miss attuned to for much of our life. And so it makes sense that we develop these at higher rates. So, an autistic person could also have narcissistic personality disorder.
PATRICK CASALE: One, I love the way you just framed that vulnerable neurology-invalidating environment. So, you said, I'm getting my words right.
DR. MEGAN NEFF: Yep, yep.
PATRICK CASALE: That's so well said, to conceptualize and to think about it that way. And also this conversation is clear as mud for most people listening, right? Because it's like, this could be true, this could be true, this could not be true. And that's really what we are trying to kind of articulate to our listeners is like, this is a really complicated conversation and the labels that get thrown around are really damaging. And it can be really, really painful for people when they are used because someone has been hurt or because it feels like this is what society says about this person if they exemplify A, B, C, D characteristics.
DR. MEGAN NEFF: Yeah, yeah, absolutely. Is it okay if I shift context a little bit because there's another context I've gotten this question, which is work.
DR. MEGAN NEFF: So, this was the first time that I thought, "Oh, maybe I should make a Venn diagram." It was someone contacting me that was saying, "Can you please make a Venn diagram?" Because, like, I think they were maybe fired from their job and being accused of being narcissistic when really what was happening was autistic communication, right?
And again, like things like hierarchy, that if I'm coming into a meeting, I actually had this experience, I had this experience in my internship with my supervisor. I think he didn't know what to do with me because I didn't perceive the hierarchy in the way I think he thought I should. And he in a review called me like overconfident or something. That sort of, like if I have a good idea in a meeting, even if I'm not high in the hierarchy, I'm going to share it because it's a good idea. And a lot of autistic people are like that.
But that could look like subverting hierarchy, and the narcissistic, and other, like communication traits can look like that in the workplace. And then that can lead to workplace discrimination. So, that's another context that this can show up. And we're understanding, like, no, that's autistic communication, that's not narcissism, would actually be really helpful.
PATRICK CASALE: That is really helpful. And I imagine a lot of you who are listening have experienced a workplace where maybe that has been a situation, or you found yourself in a relationship where that was the perception of you because of how you communicate, get your ideas across.
I know, I probably have done that a million times in, like, meetings where it was just all fluff and stupid bullshit. And I probably was just like, "Hey, what about this idea? Like, what about this thing? Can we just implement this?" I know, I've actually said that out loud. Like, "Can we just be done with this meeting and like, implement this thing?"
Because we're sitting there for two hours going around in circles about nothing. And that wasn't really much more about energy preservation at that time. And if you want me to be here nine to 10 hours a day, I need to be able to work and function to the best of my abilities. And so I know I've certainly communicated in ways where I'm like, this is just what I'm experiencing in the moment.
DR. MEGAN NEFF: Yeah. And look at you, right? Like, you're a tall white man, who if you're like coming in with that energy, I could be like, "Oh, my gosh, Patrick's such a like, so full of himself." Right? Like, that's an easy narrative to adopt if you don't know you and understand you.
PATRICK CASALE: Absolutely. I've heard that narrative from several of my close friends right now who used to be in my supervision group, where we'd be like, you know, sharing feelings, sharing ideas, and then I'm like, "Can we just get to the point?" [CROSSTALK 00:27:16]-
DR. MEGAN NEFF: Okay, so dismissiveness. This is actually, sorry, I totally cut you off.
PATRICK CASALE: No, it's okay. Dismissiveness, sorry, I just cut you off.
DR. MEGAN NEFF: Okay, I'm dismissing you. No, but just like, I don't value emotions in the same way a lot of allistic people do. And so I do know I'm more prone to dismiss them because they seem illogical to me. Like, now that I understand the science in emotions, I actually care about them a little bit more. And someone in a relationship with a narcissist who's not in treatment doesn't have insight into the experience of, sorry, I shouldn't say with a narcissist. We use a lot with identity language, but I think, for that, I think with narcissistic personality disorder, I feel like it's a more empathetic way of communicating.
Okay, rabbit trail. There's going to be a lot of invalidation and dismissal in a relationship like that. And I think, again, especially, for an autistic person with alexithymia, as soon as emotions come up, if that's really important for the other person, they could feel deeply dismissed. Like, I know I've dismissed people when I've… especially, because I can get kind of irritated of like, no, just look at this logically. Which I now realize that's really dismissive, that's not effective communication. If you're trying to move toward resolution, you've got to, like, validate the feelings, and then maybe that creates capacity for logic. Whereas I would come at it the flip, I want to start with logic to understand the emotions.
PATRICK CASALE: Right. Yeah, but I think the big takeaway, right? Is like, whether we both have just kind of shared examples is probably how we have dismissed people in our circles professionally, or colleagues, etc., not intentionally, just because it was like we need to cut through, we need to use the logic, we need to get to the point, we need to move on with whatever the case may be, whatever situation we're in.
But we both probably also felt remorse and regret for dismissing that person's idea or thought, or statement. And that I think shows that's where you start to build this sense of self too, of like, okay, I care very deeply about this relationship, that's my fuckup. Like, I will try harder to try to give and take a little bit in terms of communication when we're in these environments.
DR. MEGAN NEFF: I think you might be a better human than me because I don't all… like I mean, yeah, when I care about the person and when it's a genuine like I've missed them, like, I deeply care. So, like, my core family and my clients, like, that's really important. But when I'm in a conversation and I feel like the other person is not being logical, I actually don't like walk away from that conversation and be like, "Oh my gosh, I feel so bad." I'm like, "Damn emotions." Okay, not always.
So, I just want to like humanize, I don't always walk away from those encounters. Sometimes I'm, like, irritated at the other person. I'm like, "Why doesn't your brain work more like mine?" And I'll talk myself through that, right? Like, to not stay that kind of, that sounds really bitter, but I want to be honest about the fact that I have those moments, that is part of my experience.
PATRICK CASALE: Yeah, absolutely. I certainly don't walk away from every one of those situations, like deeply remorseful, or full of, like, resentment towards myself, or self-deprecating because I do think sometimes, and maybe I'm wrong, is when you say like, "Damn it, why doesn't your brain work like mine?" It's like, because of how hard we often have to work to feel seen and validated, or understood. And for me, that's where that like, "Damn it, why doesn't your brain work like mine?" That moment is where that often comes up is when I feel misunderstood. Like, where I feel missed, where I feel unseen, in terms of like, in any capacity, honestly.
DR. MEGAN NEFF: It's this really like, intense moment I experience where I have this feeling and I see this a lot with folks of like, if I could just inject my logic into your brain, you could see it the way I see it, then this whole misunderstanding would be cleared up. So, then I can kind of dig into like, I want you to see it how I see it not because… I'm not in a like power dynamic of like, I need you to see the world through my… but like, I think I'm seeing something. And usually, it's like a relational dynamic, where I'm like, I see what's happening here. Like, your stuff over there is kicking in with my stuff over here. And if we can put it in a conceptual framework, we cannot understand it.
And so I'm trying really hard to inject that understanding into the other person. I'm even realizing the word inject, like, that's very violent sounding, right? But I have those. It's almost like a panic moment of like, you just need to see what I see because then we can move clearly through it.
Like, typically, I have enough regulation skill that I can kind of walk myself through that, but I could see how that panic moment could come across as really dominating. Especially, if someone doesn't have insight into, like, what's happening for them in that moment.
PATRICK CASALE: Yeah, absolutely. I agree 100%. I think this happens. I'm diverging just a little bit. But I think those panic moments for me happen most often when I'm in like a medical provider's office and like, they just dismiss what I'm saying. And I get so like, immediately frustrated, and I feel so invalidated, and dismissed, and I feel unseen. But then I shut down most of the time. I don't often like, I'm just like [CROSSTALK 00:33:12]-
PATRICK CASALE: And it's so much shame-inducing in a way of like, I just can't feel understood here. Like, that's really what happens to me.
DR. MEGAN NEFF: Yeah, I would say that's what happens to me 90% of the time, and then those few times where I have tried to, like, get my perspective, like, accessible into someone else's head, those don't go well. And then I tend to shut down even more deep in that relationship. So, shutting down just kind of often feels like the better option. I just got a wave of sadness, Patrick. We both shut down when we're feeling dismissed. So, to put it in like nervous system framework, we kind of go freeze mode, maybe fawn mode. For autistic people, they go fight mode. That could look really narcissistic.
PATRICK CASALE: Yeah. My brain has a couple of thoughts right now as I'm experiencing this heaviness. One, we should probably do an episode on meltdowns and shutdowns.
DR. MEGAN NEFF: Mm-hmm (affirmative).
PATRICK CASALE: Two, yeah, like polar ends of the spectrum in terms of nervous system reaction, in terms of fight mode versus fawn or freeze mode. And yeah we could certainly look very narcissistic in that way, if that's the reaction in those modes.
DR. MEGAN NEFF: I think what I don't want to say, and this is the balance I'm wanting to walk, I don't want to say that autistic people can't be harmful in our relationships. Of course, we can, we're human. I also don't want to say that autistic people are narcissistic, or that every time you see someone with low empathy, you're like, "Oh, they're autistic."
So, walking that line of there's plenty of indecent or not indecent, that feels…. plenty of like, autistic people out there who are not compassionate partners. There's plenty of allistic people out there who are not compassionate partners. There's a lot more going on in our neurology. Our neurology certainly complicates things. Yeah, it's a delicate balancing act to honor both of these, all of the really negative stereotypes around autism. We're also being honest with like, we're not all high empathy and we're not all high empathy all the time.
PATRICK CASALE: Yeah, I can't add anything to that other than just saying I thinks that's completely true. And I think that's also, maybe some of the heaviness that we're both experiencing right now is just the stereotypes that a lot of autistic people face and experience, coupled with the fact that people are also people. And although we're more prone to discrimination, and struggle, and a lot of complicated scenarios, that doesn't mean every autistic person [INDISCERNIBLE 00:37:23] character traits, like, that's just the reality, it can't be.
DR. MEGAN NEFF: Right, right. And I will say, I mean, to bring it back to intersectionality, like, I think this presentation of autism that often gets talked about, and then the stereotypes get created about is often when the autism is intersecting with a lot of privileged identities, which makes sense to me. I'm not sure I can articulate why that makes sense to me. I have thoughts, but I also feel like that's an important part of the conversation, is it really typically is Cishet white men that this conversation revolves around. Not always, but often. It's you, Patrick.
PATRICK CASALE: Thinking of all the Taylor Swift memes of the problem is me right now.
DR. MEGAN NEFF: Except you don't fall into that stereotype.
PATRICK CASALE: No, but just like you-
DR. MEGAN NEFF: You're curious, you're curious and you-
PATRICK CASALE: And I think that's what we've talked about on almost every episode is like openness and curiosity, right? Like, versus constriction, and just really being curious about an experience. But yeah, I mean, privilege does absolutely shift and shape the lens that we see the world through, too. So…
DR. MEGAN NEFF: And I don't think you have to be as curious about the world, about your experience, about other people's experiences when you have a lot of privilege. You got to walk into a room, and like, it takes privilege to not be thinking about what's happening in that room, like, relationally, in other people's minds. You can't do that if you're not safe. And privilege and safety walk hand in hand.
So, actually, okay, this is just coming to me in a moment, but I'm curious about the connection between, like, privilege, curiosity, and, like curiosity of self and curiosity of other.
PATRICK CASALE: Yeah, I mean, if you can walk into the room, and identify, and look the way that I do, you don't really have to think about how the world is impacting everybody else. Because it's not impacting you in the same way, for the most part.
DR. MEGAN NEFF: Yeah, yeah, that scanner doesn't have to be on for your safety.
PATRICK CASALE: No, we could do a whole episode on that too. Heavy conversations create new ideas, so…
DR. MEGAN NEFF: That feels like a tagline, heavy conversations create new ideas-
PATRICK CASALE: [CROSSTALK 00:40:12]. We're going to start making T-shirts and all sorts of swag for Divergent Conversations.
PATRICK CASALE: So, another idea, that's actually not a bad idea. Okay, my brain is diverging all over the place, which is kind of telling me I don't have much left to give in this conversation. I don't know how you're feeling right now.
DR. MEGAN NEFF: Yeah, no, I think this is a good time to wrap up. I would love to go dig into the research a little bit more. I'd be curious about people's comments on this episode. And then maybe we could do a follow up episode because yeah, the conversation is really complicated. But I think this is a good starter episode on this topic.
PATRICK CASALE: Yeah, I agree. I think we try to walk along as best we can. And I guess, when it comes out, depending on how it's reacted to, but I don't feel like one way or another right now, which is usually a good indication that we did our best.
What I will say to everyone listening, is we want your comments and we want your questions. And you can email us your questions, you can email us topics at divergentconversationspodcast@gmail.com. We aren't really going to check Instagram messages as much just because Megan and I both have too many of those messages coming in in different ways in our lives, and it's just not possible. But if you do have comments, if you do have questions, please send them to us. I mean, we want to address what we can when we feel like we are able to do so. And this is a starter topic. So, we try to use lots of disclaimers, and asterisks, and setting the stage, but that can get missed sometimes, too. So [CROSSTALK 00:42:02]-
DR. MEGAN NEFF: I have one more asterisk before you do [INDISCERNIBLE 00:42:05].
PATRICK CASALE: Absolutely, absolutely.
DR. MEGAN NEFF: There's also a lot of people out there who do have NPD, who, like, you're doing the work to get insight into it. And so I also realize that this conversation when we're like, "Don't compare us to people with NPD." Like, that can be really pathologizing to people who have NPD and that's another reason why I feel so much complexity around this conversation. So, I do want to add that asterisk out there before we close out.
PATRICK CASALE: So, we're going to have all these asterisks and disclaimers in the show notes, as well as all of the information that we just talked about. So, again, just to start our conversation, and we will revisit it in the future. But we get so many questions and DMs about the topic that it felt important to address sooner than later because we want you all to know that we listen to what you have to say and we know that the conversation is out there to be had. So, just want to name that as well.
So, for everyone listening to the Divergent Conversations Podcast, new episodes are out every single Friday on all major platforms and YouTube. You can like, download, subscribe, and share. We will see you next week.

Friday Oct 06, 2023

Pregnancy loss is traumatic and the grief process that follows is complex. And when you are Autistic, the way you express grief and loss might not meet the expectations of society, which can result in feeling ashamed and isolated. 
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, speak with Dr. Kiley Hanish, a neurodivergent occupational therapist specializing in mental health during the perinatal period, about autistic grief and loss while focusing on pregnancy loss.
Both Dr. Neff and Kiley, who are both Autistic, experienced pregnancy loss and they talk about their experiences personally, within the medical system, going through pregnancy again after experiencing loss, having to parent their children after pregnancy loss, then sensory overwhelm that comes with pregnancy and parenting, and the ongoing process of grieving.
Top 3 reasons to listen to the entire episode:
Hear about the profound grief associated not only with losing a child but also with the loss of one's identity when becoming a parent.
Understand some of the many ways that grief can manifest, and learn how to incorporate rituals and practices into the grieving process to honor your loss that is tailored toward the needs of autistic individuals.
Identify the ways that the healthcare system can improve the responses to individuals experiencing pregnancy loss to help create safety and reduce trauma in difficult times.
When experiencing loss, it’s not realistic to just “get over” the grief and move on. There are many complex emotions and often misunderstandings about what is the right way to deal with grief, especially when autism is brought into the equation. If you are experiencing this loss, you’re not alone and your experience is valid regardless of whether other people say you are “doing it right.”
More about Dr. Kiley Hanish:
Dr. Kiley Hanish is a neurodivergent occupational therapist specializing in mental health during the perinatal period, which includes pregnancy, postpartum, and perinatal loss. After suffering the stillbirth and loss of her first child Norbert, Kiley co-created the Emmy-nominated film Return To Zero to break the silence and stigma around pregnancy and infant loss for parents around the world. The film’s success and critical acclaim led to her non-profit organization Return to Zero: HOPE. This organization provides inclusive and compassionate education and support for bereaved families after pregnancy and infant loss. In addition, they provide training and support for health providers in order to foster more confidence when working with these families.
Return to Zero: HOPE Website: https://rtzhope.org
Kiley’s Instagram and Facebook: @rtzhope
Additional Resources Mentioned
Worden’s Four Tasks Of Grieving: https://whatsyourgrief.com/wordens-four-tasks-of-mourning 
DR. MEGAN NEFF: So, Patrick, I don't know if you know this, but October is a busy Awareness Month, especially, for the topics we talk about here on this podcast. It is ADHD Awareness Month, it's OCD Awareness Month, it's Depression Awareness Month, Dyslexia Awareness Month, and it's Pregnancy and Infant Loss Awareness Month, which is what we're going to be diving into today.
So, I do want to just offer kind of a gentle disclaimer, if you are in the process of trying to get pregnant or recently experienced a pregnancy loss, do take care of yourself while listening to this episode because we will be talking about pregnancy loss.
So, first, I just streamlined through the intro. Patrick, anything to add to the intro before I introduce our guest?
PATRICK CASALE: I have nothing to add. I appreciate you laying the groundwork, so that's where [CROSSTALK 00:01:00]-
DR. MEGAN NEFF: …role reversal, there's a role reversal happening here.
PATRICK CASALE: [INDISCERNIBLE 00:01:05]. I told Megan and Kiley before we got started, been up since 3:00 AM. So, I'll be here in existence, but maybe also not…
DR. MEGAN NEFF: Appreciate how you name how you can come into this space however you are. Yes, so we have Kiley on today, who is, do you go by doctor? Because you're a occupational therapist, right?
DR. MEGAN NEFF: How do you introduce yourself?
KILEY HANISH: Well, my students call me Dr. Hanish, but Kiley is perfectly fine.
DR. MEGAN NEFF: Okay. So, Dr. Hanish or Kiley is an occupational therapist, autistic ADHDer, newly diagnosed, you mentioned. And you started a nonprofit around pregnancy loss I think to help families, but also to help educate the medical field around how they can be walking through families and people, walking through that process better. Do I have that right?
KILEY HANISH: Yes, yeah. So, we're supporting families who have experienced different types of losses. And then there's a lot of trauma that can be done, like with health care providers, and especially, in the hospital, and so they don't receive training in their formal education. And so how can we kind of share information to help them be more confident working with bereaved families, and then therefore reducing trauma and other negative mental health outcomes.
DR. MEGAN NEFF: I love that so much. I think I've mentioned it on here a few times, but I used to work as a therapist in an OB-GYN clinic. And this was an area where it was evident there was just so much growth for the medical community in how this process is handled. And yeah, I love your lens of reducing trauma.
So, yeah, I'm backing up bird eye view a little bit, we connected because you emailed me. We were asking folks for like topic ideas and you emailed me with four or five wonderful ideas, but one that caught my eye was autistic grief. And we've heard other followers ask for us to cover autistic grief as well. I think it is a really important and complex topic. So, we're going to be looking at that today, we're going to anchor in the experience of pregnancy loss.
Oh, partly you reached out because you heard me mention that I had had two pregnancy losses on the podcast, which you have a good ear because I think it was a really passing comment. But I also think once you've lived through pregnancy loss, you hear it when people talk about it.
Okay, that was a long-winded intro. To anchor our conversation today, we do have a broad framework we're going to follow. I'm going make it explicit because I think structure can be helpful. We're going to talk through different phases of the pregnancy loss experience. And I think this is really important to think through it in phases in the sense that this is actually something we know helps people walk through the grief process is when they can story tell and narrate their experiences.
So, we'll be talking about the acute phase of coming to know the processing around that, the postpartum experience, and then grieving itself. And when we get to that fourth part, we're going to globalize it to talk more broadly about autistic grief. Does that sound like I have that right Kiley of what we talked earlier?
KILEY HANISH: And I think just so for other people who are listening that have not experienced pregnancy loss or maybe have but other types of loss, like loss, isn't only death, and that you can take what we're talking about and apply it to your own situation because it will be in some way relatable. It just may not be the exact same story. But I think there's a lot of lessons that can be just like, well, lessons learned, and then just like, exploring for yourself. Like, "Well, how did I react? And what, you know, my interactions with…?" I don't know, it's complicated for sure.
DR. MEGAN NEFF: Yeah. So, Kiley, can we go back to starting kind of at the beginning for you of your experience around pregnancy loss, but then also how you got interested in this topic of autistic grief, and then supporting families, and people through this process?
KILEY HANISH: Yeah, so yeah, I'll first start just by sharing, like setting the stage of like, my situation. So, 2005 I was pregnant with my first child. You know, everything was fine, you know, up until when I was 35 weeks pregnant, which is like five weeks before due date. And I started bleeding. And because it's my first child, like, you don't know what's normal, and what's not normal. And so my midwife was like, "Oh, you probably just lost your mucus plug."
And so I didn't think anything about it. I had no awareness of baby movement because no one told me to pay attention to it. And there's this, like, myth that babies slow down when they're, you know, getting bigger because there's less room, which is not true. But you know, there was no talk about paying attention to baby moving or anything. So, I wasn't even aware of baby movement. But thinking back I'm like, "Yeah, I didn't really feel him move."
So, when I went to the doctor the next day, they couldn't find a heartbeat, they did an ultrasound. And at that point, told me that he had passed away. And I went into immediate shock. I was by myself. I didn't know what to do, I didn't know what that meant. And it was just like, I feel like I really left my body.
And so, like, I said to the provider, I said, "Well, what am I supposed to do?" Like, I wanted to understand, like, okay, my baby is there but then what happens, you know? And I know, I've mentioned this to you before, but then, you know, she says, "Well, maybe you could cry." And I was just like, "No, that's not what I'm asking." I'm like, "I'm asking for you to tell me what is going to happen?" Because when you're that pregnant, you have to deliver your baby. Unless there's, like, a threat to your life, they're not going to do a C-section. But I'm like, "How does the baby come out?" Like, I don't know.
KILEY HANISH: So, there was… go ahead.
DR. MEGAN NEFF: Maybe pause there just to, like, that feels really powerful of in that moment you needed to know what to expect to get back into your body, to get back to safety. And that probably really threw the medical provider off of like, where's the emotion? We should process the emotion and then talk about logistics, which I think would be a very allistic way of moving through grief. But for you, I almost wonder if you needed to know what to expect to have enough safety to experience your emotions.
KILEY HANISH: Yeah, I mean, it's like the [INDISCERNIBLE 00:10:06] right? Like, I'm just learning about myself. Like, with the autistic piece, the uncertainty brings so much more fear and anxiety in a situation that's already horrible. And from her, I got nothing. And I'm not going to go into details, but just like her obsessing about other things that were really not important, and then she sent me home. And I was already in labor, actually, which is really odd.
DR. MEGAN NEFF: It is odd.
KILEY HANISH: You know, and then even at the hospital the following day, very little telling me what was going to happen, what to expect, and then, also, like, once your baby is born, there are lots of things… this is going to sound creepy to some people, or strange, or whatever, but like, there's a lot of things you can do to make memories to parent your child that it seems strange to talk about, but it's like your only time with your baby.
DR. MEGAN NEFF: It's really important, yeah. I actually went to a training on this about how important it is to touch your baby, be with your baby, take pictures with your baby. And from an attachment lens, just how important that is. I literally have shivers talking about it and how rarely, parents are given that opportunity unless the medical system really understands how important that is.
KILEY HANISH: Yeah, and so it's just like, what I really needed was a guide. I mean, I needed the doctor, or the nurses, or social someone to be a guide. It's like, you haven't been through this, but here's what's going to happen, and here are things that you can choose to do if you want to do that could be helpful to you. And I didn't get any of that.
And so, like, the trauma in the hospital was so horrible. And then just, also, like, when you're in that state of shock, and I think this is anyone, it's like, then they took my baby out of the room, they put him in a box in front of me, like to take to the morgue. But then also you're just like, I can't even talk. Like, I don't even know what to say. And it's just like trauma upon trauma, was really, really hard for me.
So, I think that, like, there was just too much without any guidance, and I shut down for like six months. I don't remember very much from that six months following. So, that was kind of, I would say the, like, acute phase but it lingered.
DR. MEGAN NEFF: Well, it lingered… I mean, going back to those post-birthing rituals, it lingered partly because you didn't get, I mean, I'm sure it lingered for many reasons, but you didn't get to say goodbye and like I feel so much heaviness hearing you talk through that of it was such an ambiguous grief in the sense that there wasn't a goodbye and there wasn't clarity around what was happening and I think for any human that's incredibly difficult and then through being autistic on top of that, it's just so much.
KILEY HANISH: Yeah. So, do you want to share any of your experiences in terms of like finding out, like, that part?
DR. MEGAN NEFF: Yeah, I do. Yeah because I think there's some similar patterns. I think I also, and this is probably for my own self that I'm saying this. You know, I know that whenever we're comparing grief, that's not like a helpful thought experiment. I think it also, for me, I do want to name that it feels like we're comparing apples and oranges in the sense that from my own experience and walking with a lot of people through this first-trimester miscarriage,e 35-week stillbirth are very different experiences. So, I want to name that.
I did share some of that medical confusion. I've had two complicated first-trimester miscarriages, one in which, like my HCG kept going up, which is the hormone that says you're pregnant. So, there's about a three-week window where it's like, well, actually, maybe you're still pregnant. And I kept getting conflicting messages from nurses when I would call of like, "Well, your HCG is rising, but it's not doubling. Maybe they were twins, and you lost one, and another one's in there." So, there's like a three or four week, I was getting a lot of mixed information. And that was really hard for me of like, "Am I supposed to be grieving right now? Am I still pregnant?" So, just that.
And that's actually more common than I think people realize there can sometimes be this roller coaster, especially, in early pregnancy of maybe I'm losing the pregnancy, maybe I'm not.
And then my second pregnancy was a missed miscarriage, which means that a heartbeat never developed, but the miscarriage didn't organically happen. So, it wasn't identified till nine weeks.
And then, similarly, I didn't know what to ask and I didn't know what to look for. And I was reading a lot of things from like, kind of natural childbirth and midwives, and I love the work of midwives. And at the same time, I think it's very much set on typical pregnancies, a lot of the advice. And as an autistic person, I got really attached to the right way of being pregnant and the right way of walking through a pregnancy loss. And this was my second pregnancy loss and we very much wanted to have another child. So, I was convinced I shouldn't do a DNC because it might cause scarring, which could impact future pregnancies.
That lead to what I think at the end of it, I, essentially, was like in my first trimester hormones for 20 weeks because I started miscarrying at 12 weeks and then miscarried for eight weeks and should have sought medical advice, should have known what to ask for, but I didn't and I'm kind of has medical avoidance. So, I didn't actually get help until I started developing an infection.
So, there was a lot of uncertainty around those times. I wasn't advocating for myself very well and I think, partly, because I was also very shut down. I responded by shutting down, similarly. I was confused by kind of the absence of emotions during that period. So, yeah, that was my experience.
What happened when you went home from the hospital and when you made it through after those six months? You talked about six months of shutdown, what happened after that?
KILEY HANISH: Well, like I felt somewhere a shift inside of me of, like, the wanting to engage in life again. And that was like a month of that maybe, or maybe even less, and then I found out I was pregnant with my daughter which I hadn't had a chance to grieve. And then, like, grief process… whatever, and then pregnancy after loss is just like anxiety-
DR. MEGAN NEFF: So, anxiety. Oh, my gosh!
KILEY HANISH: …on steroids.
KILEY HANISH: It is anxiety on steroids, yeah.
DR. MEGAN NEFF: It's crazy.
KILEY HANISH: And so that was a whole nother thing.
DR. MEGAN NEFF: And did that, again, I'm thinking about potential education, like, when I was in the medical setting, I did a lot of education of like, after pregnancy loss there can be a lot of anxiety, you might find yourself resistant to attach to the baby growing.
DR. MEGAN NEFF: Like, did anyone walk you through that?
KILEY HANISH: Yeah, which is why I created everything I created. I created the guide for the hospital. I mean, all because it's like, when I learned things like, well, people knew this, why didn't they tell me? You know, and it's like I feel like the OBs are dealing with the waist down. They don't want to touch the emotion piece. And if there's a problem, they don't know what to do. Nobody, like, unless you get fortunate to have a therapist who knows about this, really, it's like luck. No, there's nothing, you're just like going blindly into everything. And you feel like you're going crazy, you can't talk about how you're going crazy because other people are going to think you're crazy.
DR. MEGAN NEFF: Well, and especially, when you start showing, and people start coming up to you. I mean, like outside of pregnancy loss, right? Like, I hated being pregnant. When people would come up to me and touch me, and like, be like, "Are you so excited." And then I'm expected to have this positive emotion, right? That was just hard for me, even with my first pregnancy before any pregnancy losses. But throw in there, like, I am so anxious that this baby will survive, and then strangers are coming up and like expecting you to be all teary. Did you have some of that experience?
KILEY HANISH: Yeah. Well, I mean, for me, it was my first, also. So, like, when I was pregnant again, like, "Oh, is this your first?" And then the whole question was like, "Well, do I tell them about, well, I had a baby that died or do I not?" And most of the time, personally, I feel like my business is my business. And I don't need to tell other people my business, you know? But you feel like you're like, kind of, disrespecting your child.
DR. MEGAN NEFF: Absolutely, absolutely.
DR. MEGAN NEFF: And it's that small talk, right? It's small talk that is so painful. Like, there's so many questions we ask pregnant people I've since learned not to ask like, "Are you planning to have more? Is this your first?" Like, things that we think are small talk is not small talk. And that's for non-autistic people, too.
KILEY HANISH: Yeah, yeah.
DR. MEGAN NEFF: Let alone throw in the, like, we hate small talk component.
KILEY HANISH: Yeah. I had a thought, but it went. Oh, no, I know what I was going to say, in the pregnancy after last piece, like, there was like, what you were starting to say is like, denial of the pregnancy, non-attachment, which is called emotional cushioning. So, you're like-
DR. MEGAN NEFF: Oh, I like that term.
KILEY HANISH: I found that word somewhere recently and I'm like, "Oh, I like the term." You know? And so, it's like, oh, there's an explanation of, like, fear of getting attached because maybe the baby will die. And like the thought is, well, if I'm not as attached, and the baby dies, it won't hurt as bad. Which is a joke, but it's your brain trying to protect itself. Yeah, and just like not, like, I didn't buy anything. I didn't want a shower. I just I was like, "No, we're no, we're not doing anything to prepare." Like, so I did nothing.
DR. MEGAN NEFF: So, even setting like setting up a nursery or a lot of the things, you did none of that.
KILEY HANISH: The second time no because I did it the first time.
DR. MEGAN NEFF: Yeah, yeah.
KILEY HANISH: And then I had to take it all down. So, then I was like, "No way."
DR. MEGAN NEFF: Yeah, it's actually really logical.
KILEY HANISH: Yeah. And then I will just throw in here, like, looking at our agenda because agenda is postpartum. So, I will say after you lose a baby, even though your baby's not living, you are still in postpartum. But I was in such shock and like, disorientation. It didn't really matter.
But after my daughter was born, my second pregnancy, I went into, I don't even know what it was, undiagnosed for 10 years, whatever. I just suffered a lot. But it was like this total hypervigilance, anxiety. I mean, so I first diagnosed myself with like postpartum PTSD, like, a few years ago, but now I'm wondering is like how much is it like sensory overload of being a parent? Like, I mean, or both?
DR. MEGAN NEFF: I would argue both-
KILEY HANISH: Yeah, and so-
DR. MEGAN NEFF: [INDISCERNIBLE 00:24:29] on top of each other in really brutal ways.
KILEY HANISH: I feel like… and this has nothing to like, say bad things about my children, but becoming a parent broke me. Like, it turned me crazy, into like, my mental health it just was never the same and I think part of it's like, with things I used to do to self-regulate that I didn't know where self-regulation strategies were no longer possible once I have children. And just the feeling of like being claustrophobic, and constantly on, and all of that, so…
DR. MEGAN NEFF: Yeah, Kylie, first of all, just thank you for saying that. Thank you for saying becoming a parent broke me. I think, again, like we've got to hold space for so many complex emotions. And I think this gets really tricky to talk about as a parent. Of course, we love our children, I'm so thankful for my children, I wouldn't have life any other way. But I feel similarly.
Like, so my children are now 13 and 10. So, I'm through the thick of it, I would say. Those 10 years, especially, those five years, when they were like two neurodivergent children, I didn't know were neurodivergent, no one was sleeping. They're sensory seekers. Like, I was so, first of, all tired and I think partly because of the pregnancies and complications my body felt very broken. I wasn't sleeping, being touched, and sounds all of the time, having a hyperverbal toddler talking all the time. Like, for someone with a sensitive sensory system, that's a lot to absorb. And I think there can be a lot of shame, especially, for mothers around, like, why is it so hard? And I did the hyper-vigilant thing, especially, with my second. Like, it's true.
KILEY HANISH: Yeah, and you're worried they're going to die. Like, constantly, like, are they breathing?
DR. MEGAN NEFF: Yeah, yeah, all that.
KILEY HANISH: So, it's just so complex, all of it.
PATRICK CASALE: I imagine that there's this, like, really confusing simultaneously, like, held grief experience. Obviously, I cannot relate, but where it's not only postpartum, and grief, and grief around loss, but then there's also grief around loss of identity because as a parent your identity has completely shifted and changing. And then, you have to hold space for, I'm grieving the loss of who I was, or what my role was, or how I moved through the world. Now, I'm also grieving this newfound role in my life and I'm kind of, it sounds like there's a lot of shame-inducing experience too, of like, I'm not getting it right? Why do I feel this way? That's so complicated and that's so heavy to have to carry.
DR. MEGAN NEFF: I love that, Patrick, that inclusion of identity, I don't know about your experience, Kiley, but like that was huge for me. I was kind of coming out of academia, I had just finished my first graduate degree, and I thought I was going to love being a stay-at-home mom. I now understand like, how much of my identity comes through my interests and my values.
And my husband will talk about this, it felt like I was like trying to find something to orbit in those years. Like, I remember, I got really into sewing, and I got really into like, kombucha making, and all the DIY stuff, but none of it, like, felt robust enough. And then the shame of like, why am I not content as a stay-at-home parent? Yeah, yeah.
KILEY HANISH: Yes, I agree. And looking at other people, well, number one, like I couldn't leave the house very often because I was like, obsessed with nap schedules. And it just overwhelmed me and all that. But then all the other people were like, "Oh, I'm taking my baby everywhere." And all that.
And then being a bereaved parent on top of that, you can't go into normal spaces with parents and children because you're like, "I have just been through, like, a trauma and you don't understand and so it's way different." Yeah, I mean, I feel like there's a whole nother parenting episode here.
DR. MEGAN NEFF: Yeah, there's a lot.
KILEY HANISH: There's a lot. Yeah, I mean, yeah.
DR. MEGAN NEFF: Yeah. Did you find community like…
KILEY HANISH: No, I didn't. I was very isolated. It was super isolating. It was hard. And I also feel like my interests are not… yeah, I cannot be a stay-at-home mom. Like, I am a disaster. And, I mean, I'm good at all the things and all that, but it's just like, there isn't enough, like, intellectual meaning and purpose.
DR. MEGAN NEFF: Yes, I literally had, like, I feel like my brain is atrophying.
DR. MEGAN NEFF: Yeah, yeah.
KILEY HANISH: And then not being able to connect to other parents, even like as kids go through school. Like, I'm so intense and I'm like wanting to talk about like, things that I care about, and being able to talk to men more than women because men talk about things rather just women it's just small talk.
KILEY HANISH: So, it's interesting.
DR. MEGAN NEFF: Yeah, I think mom culture has been the hardest place for me to integrate. And I didn't understand it for so long, that that brought on a lot of shame. But yeah, I have like a visceral response to mom culture. I actually hosted last year an autistic moms group. And it was the first time that I felt connected in a group with other moms.
KILEY HANISH: Yeah, well, there's this woman [PH 00:30:37] Moinia Taslon who wrote an article, a qualitative study of sensory experiences of autistic mothers, which I recently read, and was like, "Oh, this explains everything." And then with my students, we kind of took that and one other article, and did a survey with autistic mothers to just understand their experiences, and right? Like, they're all diagnosed post-children. And just all the things that are hard for them, that are different than, I mean, parenting in itself is really hard anyways, but you add the autistic piece, and the sensory challenges, and all that. It's fascinating, so…
DR. MEGAN NEFF: I would love to see your research from that.
DR. MEGAN NEFF: Yeah, I think, you know, I've shared this before, maybe it's changed by now. But if you Google like, you know, autism and pregnancy or anything related, yeah, to kind of birthing, you'll find a lot of it like how to avoid having autistic children, but the experience of the person birthing who's autistic, like, we're only now beginning to get curious about that experience. And yeah-
KILEY HANISH: Yeah. And, like-
DR. MEGAN NEFF: Go ahead.
KILEY HANISH: So, I was going to say, like, there's like the pregnancy itself, so the interaction with medical providers, the sensory pieces in the hospital, all that. And then there's the after… It's fascinating.
But I even remember, like with my last child, so I have two living children now, but I went in, and it was like a very quick, like, one hour, I got to the hospital, and he was born. But like, I hired a doula for that one because I wanted to, like, reclaim my birth experience. And she and my husband were talking the whole time. And I was like, "Just shut up." Because like, when I was there, like, I don't know, for me, I mean, labor for everyone's different, but I was very much in a meditative state. And I just like, "Why are you talking…"
And then I heard the nurses like, "Oh, well, we need to do this." And like all these questions, I was like, "I'm in labor. Like, just nobody talk to me right now." And even, like, the doula did not understand pregnancy after loss. And was like telling me at eight months, "Well, you should really talk to your baby. You know, you're having a baby." And I was like, "You have no idea."
So, I mean, that's the other thing is just like, my nonprofit, which I don't think we said the name of is Return to Zero Hope. And my husband made a film about our experience called Return to Zero Hope that like, is a feature film, has mini driver in it.
DR. MEGAN NEFF: Oh, wow.
KILEY HANISH: But then she did an incredible job. So, it's like, emotionally, our story, but with the nonprofit we have all of these free webinars on there, some for health care providers, some for parents, right? Just like educating and empowering people, which I think is so important. And so, that's just my little shout-out there.
DR. MEGAN NEFF: Well, please talk about your resources. I mean, these are the resources and I love this. Like, you built what you would have wanted and needed. Actually, I feel like I see that a lot with autistic people. Like, when we have an experience it's like, okay, how can I build the thing I didn't get? And I love that you've done that. So, yeah, please [CROSSTALK 00:34:11] for like pregnant and birthing people?
KILEY HANISH: I mean, so first of all, I'll just say to, like, normalize this, the film didn't come out until nine years after our loss, a long time. And the first, like women's healing retreat I held, which is the first thing I did was nine years after the loss. So, it was a long time. And so I tell people, like, you know, I think people want to do something. Like, there's sometimes there's that urge. And for me, it took a lot of time until I feel it's a very spiritual journey for me. Like, I heard a voice in the shower that said, "You should do a retreat." I'd never been to a retreat, I never hosted, I didn't know anything.
But it came from this email I received about there was a lack of resources and a lack of connection of other grief parents. And I hadn't had any support. It was like this isolated me and my husband for nine years. We understood, but no one wanted to bring it up to us because they thought that it would bother us. And I mean, well, that's a whole nother thing.
So, with that, I just started doing that. And that's been an evolution and now has evolved. We do in-person retreats, we're doing a provider retreat in 2024, which I'm so excited about because I mean, first of all providers after COVID it's so hard, but also providers working in perinatal health, perinatal mental health it's hard, and there's nowhere for them to go so…
DR. MEGAN NEFF: Yeah, it's one of the highest burnout professions among physicians is OB-GYN, which, like I think makes so much sense. People often think about, like, working in OB-GYN is like, oh, it's all happy. But no, I mean, it can also be traumatizing for providers in a different way. But I love that you're thinking also through [INDISCERNIBLE 00:36:35] plans and community among providers.
KILEY HANISH: Yeah. And then with the pandemic, I think there's been a lot of gifts with being able to do virtual support groups, reaching people who are anywhere in the world, really, because a lot of people even if there was a in-person group before the pandemic, a lot of people don't live in places where they can attend. And so we do a really unique structure.
And I think everything, my partner, Betsy, in the nonprofit, like we have really pulled our life experiences and sort of unknowingly created resources that are neurodivergent affirming, and trauma-sensitive, and resilience-focused. And I think that what we offer is really unique. And so like with our support groups, they're six weeks closed support groups, so it's the same people. So, you can build community, but there's trying to create safety as much as possible. We have a curriculum that we follow, we walk people through things that you don't even know that you need to know about grieving and navigating life after loss. And then the group itself is very structured.
And like, we did this because I would never go to a support… I went once, like, right when the movie was coming out. And I was like, "Maybe I should go and process." And I went to this group, it was in a hospital, which, first, hospitals freaking scare me. Secondly, it was in the cafeteria, so it was like uncomfortable. And it was zero structure. And it was like people just telling their traumatizing stories. And I left. And I was just, like, at a certain point, and I also, like, get tired early in the night, like, because my brains been on all day. And I just got up and left at a certain point. Like, I'm not sitting through this.
But being like in our groups, it's like very structured. Like, we have a topic, we have a psycho-education piece, we have a discussion question, people answer one by one, so there's no like crosstalk. Then there's like weaving it in, and then there's self-reflection, but it's very tightly structured.
DR. MEGAN NEFF: I love that, I love that.
KILEY HANISH: So, like, and I love it, too. I would never do any like… and I tell people even at the retreat, I was like, "I would never go to a retreat, but don't worry, like we got you here." Like, it's all super tightly held and I feel like really holding space is what we are doing. And so there's all sorts of different support groups. You know, we started out with pregnancy and infant loss and now there's early pregnancy loss, recurrent loss and infertility, termination for medical reasons, people of color. We do like an LGBTQ drop-in group, pregnancy after loss, parenting after loss. So, there's like-
DR. MEGAN NEFF: Oh, my goodness, you do so much. And because these are all such different experiences I love how it attuned you all are.
KILEY HANISH: Yeah, well, like, for example, before I would say people who had a TFMR termination for medical reason, that they could just come to the pregnancy and infant loss. So, I was like, "Yeah, of course, you're welcome, you lost your baby."
And some would come. But like, no, they have a very unique experience and that group sells out all the time. And we're the only, like, pregnancy and infant loss organization who sees that as a loss. I think there's a lot of groups out there who feel like it's abortion, and they're not going to be supportive of that. And I'm like, "But these people… you don't understand. Yes, they made a choice, but you know, it's for their health, sometimes, or their baby is going to die, or live a very disabled life." And you don't even know, you cannot get the information that you need. I mean, that's… So, it is a very specific space that needs their own space.
DR. MEGAN NEFF: Absolutely, absolutely, yeah.
KILEY HANISH: Okay, what other things do we… We offer, just the website itself is a wealth of education information. We have downloadable PDFs, that is all free, we have beautiful printed brochures for provider offices. Like, for example, partners grieve too, grandparents, siblings, loss of multiples, like early pregnancy loss, and even wanted, like, all these different things, so there's so many different topics.
And then the webinars I mentioned, so like we have a YouTube channel with different playlists, which is amazing. And then providers, we offer monthly provider consultation groups. One is for, like, more of the hospital medical providers, one is more for mental health providers. And I don't know, I mean, that's kind of the main. We have a pregnancy and infant loss directory, also, I forgot about that. So, like, that has-
DR. MEGAN NEFF: Really helpful.
KILEY HANISH: Local and virtual resources, depending on whether you need, like, counseling therapy, or like a support organization, psychiatry. Like, I'm really tied into Postpartum Support International, which offers like the perinatal mental health certification. So, reproductive psychiatrists.
DR. MEGAN NEFF: Yeah, I like that. You have [CROSSTALK 00:42:44]-
KILEY HANISH: So, like, I send everyone. I'm like, "You need to see a reproductive psychiatrist, regular psychiatrist do not know about, like, they give you the wrong information." And I'd be like, I had someone working for me who became pregnant, and they were on an antidepressant, and the psychiatrist says, "No, get off of it." And I said,
even the OB, and I was like, she was not able to get out of it. I was like, "Oh, no, we need to get you to someone who knows what they're doing."
DR. MEGAN NEFF: Oh, yeah, that's scary.
DR. MEGAN NEFF: Yeah, and I think you've built neurodivergent, like, accessible resources without even realizing that's what you're doing just by being you and by caring. Like, you built this, and like, because right, only in the last year you discovered you're-
KILEY HANISH: Well, I did like a self-diagnosis in December, which was like, nine-ish months ago, and then a formal diagnosis because I wanted to see what was going on with like trauma, like [CROSSTALK 00:43:46]-
KILEY HANISH: …because there was a significant amount of trauma from all of this, stillbirth and stuff like that. But I got a formal diagnosis of, you know, autism, ADHD, plus some other mood disorder stuff, but I knew it all. So, now, I'm like, very much an advocate of self-diagnosis. I was like, "You know what, this didn't really do anything." I mean, it validates me and there's not something else hidden in there, but I was like, "Whatever." I'm like…
DR. MEGAN NEFF: I love that because I think sometimes it can be put on this pedestal like medical diagnosis all of a sudden huge things will change. But I love they're like, "You know."
KILEY HANISH: Well, and then it's like, they're like, "Oh, here's your diagnosis. Okay, good luck." Nothing, nothing. And I was like, if I was that person, obviously, they're not neurodivergent, if I was the person doing the assessment, I would be like, "Hey, here's the whole website I built, here's the all the blog." Blah, blah, blah, blah, you know? Kind of like what you did. That would be something that I would do, but they just like, "Okay, here you go." So, I don't know.
DR. MEGAN NEFF: Which was your experience around pregnancy loss.
KILEY HANISH: And so I also feel like, I cannot take this on right now, but the gap in, like autistic adults, like giving information, and just like, but how many people I talk to now who share, I mean, they share the same, "Oh, my kid has autism." And then I self-disclose. And then they're like, "I think I might, too." And then I'd like, "Here's my Google Drive with a bunch of stuff." Which is totally informal. But I'm like, "There's so much stuff I put together go read it."
DR. MEGAN NEFF: I love that. You're so good at like systematizing and building systems, and I love that.
KILEY HANISH: It's like a superpower that I didn't even know that I had, but it's so, I mean, I think going back to kind of that initial experience of coming to know so many of us who by getting access to information, and that psych-ed piece, I mean, that's something you are so good at is building like, here's the things that are helpful for you to know about your experience, about your body, about what to expect.
DR. MEGAN NEFF: Yeah, yeah. I'm cognizant of time and I think the part on our agenda we maybe didn't hit was around the grieving process. And I know that you mentioned like, I think there were some collective rituals or practices that you felt were helpful or that were distinct as an autistic person. Do you want to share a little bit about the grieving process?
KILEY HANISH: Well, okay, I think actually, for me, up until I started doing the retreats there was not a lot, you know? There was, basically, like, I didn't have any guidance. I mean, I don't know. And at that point, the Internet was, like, not really a thing. It was so long ago.
And so I feel like my connection was very private and I connected, or my son appeared to me as a white butterfly. Like, I feel like the deceased of any kind can send us messages through animals, insects, things like that, or signs, different, you know. There's a great couple of books out there by a medium named Laura Lynn Jackson, The Light Between Us and Signs, and I just love it, just, basically, the veil between this world and the other world is very thin.
And I think I've had a lot of like psychic abilities in terms of like being able to, like, because I'll hear… Everything with Return to Zero has been inspired by other. I'm a very, very left-brain person. So, this is not how I operate. However, it is very much nothing I ever would have thought I would do is like, I was being chosen to do this. And I know that sounds woo woo, but it's just the way it is.
DR. MEGAN NEFF: I actually love it because I'm so similar to you. I'm so science-based, except when it comes to, like, collective energy, spirituality, and like I sometimes say I feel like a lot of autistic people would have been Shamans in a past life, like, in historic times, of like, I've definitely had moments of knowing when something is about to happen, or like, these spiritual experiences. I'm like, this does not fit within my scientific frame, but yes. So, I actually love that. And I know it sounds really woo woo too, so I often don't talk about it. And these are very real experiences I've had and I know a lot of autistic people have.
KILEY HANISH: Yeah, and so I think, you know, I didn't really do a lot. It was through the retreats, through other people who were even more connected to the spirit, I would say, that the importance of bringing in ritual and collective ritual. And I think the biggest things we do are, we like light a candle, like, we have like a group circle, and we have like this, I'll say altar, but it's not just on the floor. And we have candles with every baby's name tied around the candle, and we light it every morning when we sit down, and we [CROSSTALK 00:49:36] candle, they say their baby's name.
So, I like I'd say, "Norbert." And everyone else would say, "Norbert." And just like you don't ever get, if you named your baby, not all people do, but you don't ever get to hear their names spoken. And so it is really powerful. So, like that's something that we do as a group.
We also allow people… we set up like a memorial table that people can bring things or pictures, whatever because that's also something that people don't always put out in their home, or they put it out, but it's in this, like, a more private space.
I don't do a lot and I sometimes feel bad about it, right? But I know that that's just me. You know, I think like, green-
DR. MEGAN NEFF: [CROSSTALK 00:50:29] oh, sorry.
KILEY HANISH: No, like, right, there are societal expectations-
DR. MEGAN NEFF: Yes, yes.
KILEY HANISH: …of grief and also gender expectations.
DR. MEGAN NEFF: Yes, yes. And especially, I think, for autistic women, those conflate because, especially, if we have alexithymia. Like, I definitely experienced that through my grief, specifically, around my pregnancy loss is I'm not doing this right, there's a right way to grieve this and I'm not doing it right.
KILEY HANISH: Yeah, like, I never cry. Like, I mean, occasionally, but it is rare. And so like, after my loss, I didn't cry. My husband was way more emotional than I was. And I was just like, super stoic, and I go to these retreats. And the last retreat, I actually knew I was autistic. And so I said to everyone, I was really excited. I was like, "Hey, just to let you know, I'm autistic and I don't show a lot of emotion. So, it might look like I'm really stoic, but I do have a ton of emotion inside of me, it just doesn't show. And when I'm there, also, it takes a tremendous amount of concentration and energy to hold space."
And like when Patrick talks about his retreats, I'm like, preaching to the choir. Like, I do this. Now I know when I have to go like, take a little sensory cocoon nap in the middle of like, in the afternoon, but the draining, like I am drained at least a week after. Like, I cannot schedule anything and then you're like, at what cost? But it is such a powerful experience. And it is such an honor to be with these women. It's so powerful. You can't even put words to it. And it drains the life out of me. So, it's very interesting, but it-
DR. MEGAN NEFF: Yeah, yeah. Well, and there's some interesting research that, like, we are more impacted by kind of the affect of people around us. We don't always know how to identify it, which actually makes it kind of more of a sensory load, but that we pick up energy tone a lot of us very sensitively. And again, that disconnect of like, maybe looking really flat, but being so deeply impacted by the emotional tone, I would think, especially, in grief spaces that's a complex autistic experience.
KILEY HANISH: Yeah, I mean, I am hyper-empathic and hypersensitive to other people's energy. And that's also, like, I know, auditory is one of my big sensitivity areas, but energy, like literally, someone walks in the room, I can sense what's going on, even if I drive outside, and there's like, we had, like, a hurricane warning here a few weeks ago. And like, I wouldn't be here to put it together. But I went to the grocery store, and everyone was like, and I was like, "What the heck is going on?" Like, just superpowers, but it's hard to say what it is.
DR. MEGAN NEFF: Yeah, yeah, absolutely.
KILEY HANISH: Yeah, okay, more about grieving. Like, I mean, I think that one big one is like not grieving as other people think you should be grieving.
DR. MEGAN NEFF: I think that's a great global. Like, whether it's a death of a loved one, whether it is an identity shift. I think that's a really global, like, autistic experience of the way we grieve, especially, what people observe from the outside doesn't always match kind of the cultural expectations.
KILEY HANISH: Yeah. And then I think there's also the false belief in, like, old grief culture, that like, oh, like, you get over your grief, you move on from your grief. And I feel like for me, and I think this is similar, like people are really great for about three weeks after something bad happens. And then they all continue to go on their life and your life it's like there's a before and an after, your life will never be the same. And you're just, like, standing there in shock, and you're like, "What the heck?" You're like, "My life, I can't go on."
And so, it's this long, long process of integration and processing, and other people, like, "You look better or you seem better?" You know, things like that. And maybe even not to me, I don't know. But I hear this all the time. And you're like, well, this is complicated. And this just doesn't happen over a week or a month, like grieving is a lifetime, and it changes. And like, it's not linear at all. There's no stages. And it's like, back and forth, and up and down. And you and your partner are grieving on different timelines, and different, like phases. And it's messy.
DR. MEGAN NEFF: It's so messy, it's so messy, especially, with yeah, the kind of co-grief, if someone has partnered, and then the timelines don't always, like, sync up. And that can create confusion and kind of disconnect. Yeah, yeah. I love how you were talking about grief of, I'll often talk about like, yeah, learning how to carry the grief well, but I love your language of integration. And that, yeah, this myth that it's like something we get over, and then move on from versus like, it becomes part of us and we live with that in an integrated way. That's like, yeah…
KILEY HANISH: And I think for, like, anyone that dies, so in my case of my stillbirth, like, I still celebrate my son's birthday, he would have been 18 this past July, but people do that, that will be forever. But even with loved ones who die who are not babies, like you're going to remember their birthday. You might remember their death day. Like, those are days to like, whether you do something or not, it is a touch point, I think. But other people around you don't see that necessarily.
DR. MEGAN NEFF: Yeah, yeah. They forget the touchpoints. And yeah, yeah, yeah.
KILEY HANISH: You were going to say something but you probably forgot.
DR. MEGAN NEFF: Well, it's like, it was in response to something you said like two comments ago. So, [CROSSTALK 00:57:44] connect now. I was just going to share I appreciate the wave metaphor of grief. That was, I was 18 when I first had my significant loss. My best friend in high school died of a brain tumor. And learning, like, I remember the first week or two it was just constant. And then I remember the very first time I forgot that David had died I was in a movie theater. And maybe I forgot for five minutes. And then it hit me like a wave. And that idea of, at first, like the wave, that it's like a tidal wave, it's constant. And then there might be some spacing out of the waves, but like, it can catch you off guard. Like, maybe it's been a stretch since there's been a wave, but there'll be some remembrance. And a wave can just kind of be like a sneaker wave and catch you off guard.
But that imagery of waves was really helpful in my initial grief of, like, just understanding that this is a process. It ebbs and it flows, and there's some really heavy grief days and there's, like, lower impact days.
KILEY HANISH: And I think, also, like one thing I experienced myself, but also hear a lot is, you know, you will over time have moments of respite from that intense grief. And hopefully, those moments get more often and longer. But there is this connection… like there is an attachment with you to your loss or your baby through the pain. And so you start feeling guilty if you don't feel the pain or you begin to feel moments of joy. And so teaching people that okay, we don't only have to connect through pain, we can also connect through joy or through other ways. Like, there's lots of ways to connect and so, you can let go of the pain and still remain connected. So, I thought that was like something else that I learned.
DR. MEGAN NEFF: I love that because you're absolutely right, that can lead to complex grief. In the DSM, there's a diagnosis of complex grief, especially, when people kind of get stalled in the grief process. And I think it's part of that, of I don't want to release my pain because this is my attachment to that person. But I love your expansion of it, of there's so many ways that we can continue that attachment beyond pain.
KILEY HANISH: Yeah. And so, like the term or a term or is continuing bonds. You can go out there and Google that. And the idea that, yes, there is a physical relationship that is not there, but there's other relationships that can continue. So, it's interesting.
DR. MEGAN NEFF: I'm going to put a plug, I don't know what you think of this theory. But since you said continuing bonds, I'm going to put a plug out for Wordens for tasks of grieving, and much appreciate that to the stages of grieving. They're, like, active steps that a person takes in the process of grieving and they're nonlinear. So, there's four tasks, and the thought is like, you will be in one of these tasks, like, and you'll go back and forth. And it's a process, but one of them has to do with the continuing bonds. And I'll put a link in there, but that's another great... if someone is experiencing, especially, the loss of a loved one, I think Worden's tasks of grieving can provide a framework, which again, is helpful for autistic people to learn how to integrate that loss and live with it.
KILEY HANISH: Well, I'll look it up.
DR. MEGAN NEFF: Yeah, yeah. I'll send you a link.
KILEY HANISH: I know we're sort of running short of time, I just have one other thing that I didn't really think about before that I think is important. So, right, as autistic people our friend circle can be small, very, very small.
KILEY HANISH: And so I know that, like, we talk about, like in our relationships module, like with your partner, that your partner is also grieving, and you can't be the only support for each other. However, when you're autistic and you don't have a lot of other people to talk to that's really hard. And like, for years, the amount of therapists I tried to find that didn't understand my experience at all, you know, and so being really lonely.
And it wasn't until I met other people who had been through this, that I was like, "Oh my gosh. Like, you get what I've been through." And it's the same as being autistic, but just like being with other people who've been through this type of loss and not having to explain yourself. Like, those are my closest relationships now, but it's lonely.
DR. MEGAN NEFF: Yeah, yeah. I think after this episode record if you start an autistic pregnancy loss group, I think that would fill up really fast.
KILEY HANISH: But the question is, do people know they're autistic?
DR. MEGAN NEFF: Oh, probably not. Like, I definitely didn't when I was going through it. And I would imagine a lot of people even five, 10 years later, would still benefit actually, from-
DR. MEGAN NEFF: Because I do think that we perhaps are more prone to getting stalled in our grief process because of alexithymia, because of interoception, because of lack of community. So, I actually think people who have now since discovered they're autistic, even if this was 10 or 12 years ago, like would still benefit.
KILEY HANISH: Interesting, yeah.
DR. MEGAN NEFF: That's my hypothesis.
KILEY HANISH: I don't know. I think like, if you suspect you're autistic, if you have a autistic child, or you're highly sensitive.
DR. MEGAN NEFF: Because I think if you're highly sensitive person.
KILEY HANISH: Because I'm attached to the highly sensitive person thing about like, five years ago, like that was my language.
DR. MEGAN NEFF: Yeah, like, that's the pathway for a lot of, especially, women, I notice, yeah.
KILEY HANISH: Yeah, so, okay. That's all. I mean, we could keep on talking forever, but there's a lot of things in here.
DR. MEGAN NEFF: There are so many interweaving themes, which is kind of what we do here. We try to create space for how complex these topics are. And I think we definitely did that today. There's a lot of interweaving pieces here between identity, autism, loss, grief, advocating the medical systems. There's a lot here, yeah, yeah.
Thank you so much for the generosity of your time. Like, I know you're wildly busy, but also just the generosity of sharing of yourself, and your experience, and of the community that you've built.
It's interesting, this episode might be listened to less, because people will see the title and be like, "I don't relate to that." But I think the people that listen to this will be so deeply impacted because of what you said, of, there are so few spaces for autistic people to talk about this. And our worlds tend to be small. So, I think the impact of this episode for those who relate to this subject, I think, will be really incredible. So, thank you.
KILEY HANISH: Thank you. Thank you for having me on. Like, I feel like I've been devouring your podcast. I've been like, I haven't done this so deep dive into your website because there's so much but just like I joined your membership just because I want to learn about myself. And it's just so amazing to find language, to feel validated. And that you both are so vulnerable and that it's hard to do that, I think. But like, what is most personal and intimate is really most universal and people identify. And I know that they're grateful. So, thank you.
PATRICK CASALE: Thank you so much for coming on. Okay, well, awkward goodbye time. So, new episodes are out every single Friday on all major platforms and we will see you next week.

Friday Sep 29, 2023

Taking up space and asking for what you need in social settings and relationships can be particularly challenging for Autistic individuals, especially before Autistic diagnosis or discovery.
It is not uncommon for many Autistic people to respond strongly to rejection, and we often work hard to "earn" a place in groups where we are allowed to safely exist by being helpful to others or blending in by dressing or acting in a way that seems "normal" or "acceptable."
Maintaining these actions while constantly paying attention to details can be a painful and exhausting experience.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, discuss the concept of taking up social and emotional space in interactions with others, what it felt like for them to balance efforts to belong with sensory overwhelm while they were still masking before Autism discovery, and the benefits of incorporating new ways of socializing and parallel play that honor their needs as autistic humans.
Top 3 reasons to listen to the entire episode:
Understand the importance of Autistic individuals giving themselves permission to socialize in ways that feel comfortable and authentic to them.
Hear about Patrick and Dr. Neff's struggles with taking up space and fully expressing themselves, as well as the challenges of showing up authentically in crowded environments, social situations, and even in running their own businesses.
Learn about the importance of parallel play, both in social relationships and in connecting with neurodivergent communities, as well as how it provides a unique sense of comfort and understanding, allowing Autistic individuals to be themselves without the pressure to conform to neurotypical norms.
Communicating our needs and creating spaces where we can be understood and accepted is crucial, especially for neurodivergent individuals.
Finding the balance between self-expression and self-preservation can be a lifelong journey, but by honoring your needs and seeking community with individuals who understand and won't put the pressure of neurotypical values around relationships, it's possible to "create space" for yourself.
DR. MEGAN NEFF: So, Patrick, I have had a common life experience that I'm curious if you relate to. I've talked to a lot of, particularly, autistic, also ADHD, but particularly, autistic people who resonate with this idea of taking up less space. I think throughout my whole life until my autism discovery, until I started unmasking, I was pretty conscientious about how to take up less space in rooms. And I'm curious, especially, given you do have some different identities than me, if that is something you relate to?
PATRICK CASALE: Yeah, I relate to it 100%. And my mind immediately almost wants to diverge. And I don't want to diverge just yet, but I want to pin it of like, let's also mention taking up less space can also be a trauma response, too. So, like, if you have experienced childhood trauma then there are probably going to be instances where you are also going to take up less space. But anyway, we'll diverge into that if we get there. I just had that immediate thought.
But yes, the answer is yes. I think it's been a very common experience for me. I think it's still in experience for me, even in this space where I have a following, where I have a presence, where I really tend to shrink back a lot of the time. 
And I also think like social situations, especially, crowded environments, being in school, all of these memories come back where I'm like a wallflower, more or less, and where I feel like, I can't be myself, I can't show up 100%, I can't take up more space, I can't get involved in conversations. And it's been really challenging.
I think, more so recently, I've been able to really embrace who I am and just kind of have acceptance around my personality and just how I show up. But that's only really been the last like, two-ish years of 37 years of life.
DR. MEGAN NEFF: Well, and that kind of correlates with later in life self-discovery around our divergence. So, that makes sense. Same for me. Like, it was in unmasking and understanding myself that I was like, "Oh, I can take up space." And, "Oh, I'm having…" Okay, I'm having a diverging thought.
I often thought about taking up less space, partly, as a like, autistic trauma response. But I'm also now thinking about it as a protective mechanism from RSD, which I know we're going to talk about later this month. I've got pretty nasty rejection sensitivity dysphoria. And whenever I would take up space in a meeting or a conversation, that would give me so much more to ruminate over, which then would be future suffering and pain as I would ruminate over that. So, partly, I think it was a protective mechanism for my RSD.
PATRICK CASALE: That makes a lot of sense because if you're experiencing RSD, rejection sensitivity dysphoria, you are really hypercritical of yourself and every action that you take, and every interaction, how you show up, how people are going to judge you, how people are going to respond. And imagine you shrink back in those situations to avoid the potential fallout/pain/traumatic experience. And like, really, you know, you're really cognizant of that too.
But in those moments, right, when you're really cognizant of that, what is that doing for the person's experience? Like in the room? Like, how are you experiencing, like, for yourself in whatever meeting or situation you're referencing? Like, when you're so vigilant about how you show up, like, what's your experience like in those moments?
DR. MEGAN NEFF: My experience?
PATRICK CASALE: Mm-hmm (affirmative).
DR. MEGAN NEFF: I mean, that's where it's like scripted… I mean, it's a very disconnected, dissociated experience because the scripting, the, like, we've talked about this on past episodes where I'll go very analytical.
And I have like two analytical modes, one that's pretty actually organically embedded. Like, when we're in middle of, kind of, a live conversation, and I'm bringing in analytical thinking that feels more embodied. But there's a different kind of analytical, like, thinking through what am I going to say? Rehearsing it in my mind, and then saying it like, that's a much more dissociated experience.
PATRICK CASALE: And that dissociated experience is the one that is then therefore going to lead to probably an increased in depressive mood as well and this disconnection from self. And I think that those are the times that take a lot of mental energy and cause a lot of mental anguish as well.
DR. MEGAN NEFF: Yeah, yeah, absolutely-
PATRICK CASALE: Sorry, go ahead.
DR. MEGAN NEFF: No, go ahead.
PATRICK CASALE: When you were thinking about, like, this topic, taking up less space, you know? Protecting yourself, thinking back to like, you know, adolescence Megan Anna, at that point in time, what's that looking like? Like, in terms of how do I protect myself? How do I notice this is kind of showing up in the world?
DR. MEGAN NEFF: I think it's interesting because even as I was talking about this, I was like, "Oh, there's some instances where this doesn't feel fully true." Like, in, not so much adolescence, but college. Like, I was a really colorful dresser, if you know anthropology, which was like, very big, and like the 2000s. Like, I loved kind of colorful, vibrant, hippie clothing. So, in some ways, it's interesting, I actually wasn't, like, that's an activity that actually takes up space or brings attention to yourself.
But it was not theoretical, theatrical. It was kind of a theatrical. I think in high school it looked like was being really helpful. So, this was kind of tied to my fundamentalism, but things like, you know, at lunchtime finding the kids who are eating alone and eating with them versus trying to take up space or even just trying to integrate into, like, the cafeteria lunch.
So, in that instance, it looks like figuring out how it could be helpful and that was my plugging for social situations because then I felt… so actually this is the metaphor I use more, is earning my currency. Like, how do I say this? I want to like pay for the space I take up. So, I was always thinking through currency.
So, in high school and in spaces my currency for the space I took up was by being helpful. And this gets kind of complicated but in kind of heteronormative spaces with cis men, my currency became flirting. So, I actually became, like, kind of skilled at banter and flirtation, especially, if I could tell that that was going to get me currency. So, it was more about figuring out what is the currency so that I deserve the space I occupy. I realize how weird and messed up that sounds.
PATRICK CASALE: I'm thinking about a couple of things, one of which is like, the school cafeterias were seriously some of the most like, overwhelming sensory experiences I've ever had in my life, and probably where I felt the most uncomfortable in a lot of parts of my life too, where you walk in, and it's so loud, and there are people everywhere, and I don't know where to sit, and I don't know who to sit with, and I don't want to, like, stand out, and I don't want to be bullied. But I want to have a group of people who feel like, at least I can eat around. So, that is first and foremost comes to mind.
Then the currency example is interesting. It's almost like my mind almost immediately when you said like, I would be helpful, almost goes to like this people-pleasing mentality that a lot of us have of like, if I'm able to be a yes person or really be adaptable, and constantly helpful for people, I will take up less space, I'll be less noticeable, I'll be less of a target in a way. And it'll ensure that I create some sense of safety for myself. And then I also feel useful. Like, that's helpful too for us, right? Like, I think most people want to feel needed or useful in some capacity.
But the interesting one is definitely the insight into the acknowledgement around the flirtation and banter to be like, if I do this, I can at least be comfortable like in this setting or situation. Because I think when we talk about like taking up space, a lot of people are probably thinking about like, personality, how you show up, how you, like, are kind of front and center or not. And I think it's so much more than that. It is like, how do I adapt to my surroundings so that I can feel comfortable in them or at least comfortable enough to get through the next experience, or hour, or transition, or whatever it is.
DR. MEGAN NEFF: I like that shift to think about, like, kind of how do we get comfortable in a space? And yeah, for me, the only way I could get comfortable in a space was, yeah, if I had earned the space I occupied. And so this space is where I think about being really uncomfortable was where I was useless. Like, I didn't have something concrete to point to of like, this is why I deserve to be here. I'm realizing I'm using laughter. I wonder if that's a defense, that's interesting.
Yeah, I mean, it is a really sad way to move through the world. It's a hard way to move through the world.
PATRICK CASALE: I like that you're analyzing yourself on air.
DR. MEGAN NEFF: It's what we do, right?
PATRICK CASALE: Megan and I just had some tough conversations previously. And I think our energy is experiencing that shift. But it's interesting because I also think that when we allow ourselves to jump into that we become more vulnerable in terms of like, what are we experiencing if we're processing it in the moment? So, it's interesting.
But yeah, it's a sad way to move through the world, it's a painful way to move through the world. The word that always comes to mind for me is exhausting. Like, it's exhausting. I use the word torturous a lot, I don't know why. But I think that it describes my experiences in what we're talking about.
I'm losing my voice. I want to talk about outfits. You've mentioned this several times on episodes about how, like, you went from colorful, when I use your language, like hippie-ish clothing to like, lots of black, right? And like, lots of gray.
And my experience has actually shifted completely, where I think up until maybe a year to two years ago if you looked at my closet everything was black, gray, or blue. And my wife was just like, "Are you ever going to wear a color? Like, how do you feel about a pattern? Like, what do you think about brightness." And I'm like, "Oh, that makes me feel so uncomfortable." Because for me, that does feel like you are taking up more space. If I'm out socializing and I'm wearing like a bright pink shirt, then people are going to… their eyes are going to be on me more than if I'm just wearing a black T-shirt. And I think that's always been a part of my, like a precautionary measure not safety-wise, necessarily, but socially comforting because I don't want to attract attention in any sense of the world.
DR. MEGAN NEFF: So, okay, first of all, I think there's a lot of factors in that. But one association I'm having right now is I wonder how much gender norms plays into that? For me, by dressing really feminine and having clothes that like are easily complimented, in some ways it did make me stand out more. Like, people knew I was like the kind of hippie dresser. But in other ways being really feminine, like I wore a lot of dresses, a lot of skirts, makes me less intimidating in spaces. I wear a lot of black, I wear a lot of more masculine clothing. Like, there's a, I think a sort of empowerment that I own now that I wasn't able to own back then.
So, I almost wonder if shifting toward more, like, coded masculine clothes for me is a way of stepping into my space. Whereas for you, again, thinking through kind of gender norms and heteronormative spaces, taking on color, taking on vibrancy is a way for a man to take up more space? So, I don't know if I'm onto anything there or not. But that was my thoughts.
PATRICK CASALE: I think you're definitely onto something because I think that by selecting like, the psychology behind clothing choices is really important to think about. And like I think that when I'm more intentional because one, now I also am way more intentional about like finding sensory soothing clothing, like things that I feel comfortable. And that's got to be first and foremost.
And number two, like I think being really intentional about trying to move into an acceptance space of like, almost for me, it's almost like if I wear clothing that is brighter, that is more colorful, that I feel uncomfortable in sometimes putting on, it almost allows me to be more okay with who I am personally, like personality-wise. It's accepting myself and like trying to force myself through the like, constant like no, be in the background, no, don't take up space, no, don't be seen, don't draw attention. All of the things that go through my head or did go through my head for quite some time.
I mean, hell I had… I don't know if this is relatable at all, but for so many years of my life, I didn't smile with my teeth ever. Like, if I smiled, it would be like this, you know? And you know, meeting my wife, that's been very helpful, having a really loving partnership has been really helpful. But like, I for so long, didn't smile with my teeth. I didn't want to draw attention to myself again. And I think it's just so many ways that we are so often analyzing everything, and it's so self-conscious, and the RSD that kicks in, and everything else that creates a situation where I'm like, I just want to be a blank slate. Like, I just want to be a vacant canvas. Like, I don't want to have anyone paying attention to me.
DR. MEGAN NEFF: And this is something that I hadn't thought about until, you know, I've worked with a couple hundred clients by now, that until I started working with clients, so I'm sure I'm 5'2, 5'3, you are tall, that I've started thinking about this through the lens of height too. When someone is tall, eyes naturally go to the tallest person in the room. So, there's often, like, a person who's tall has to do a little bit more to mute themselves and take up less space. So, it's been a kind of a new lens to explore this through a height lens as well.
PATRICK CASALE: That's a good point. I've never thought about it, actually, to be honest with you, because yeah, I'm probably the tallest of my friends, for the most part. I don't even think I'm that tall. Like, I'm 6'2, but certainly taller than my [CROSSTALK 00:16:33]-
DR. MEGAN NEFF: …taller than me, that's tall.
PATRICK CASALE: So, it is that, yeah, you're right. Like, there is a situation where if you are out socially or out in general, in public, like your eyes do gravitate towards the tallest person in the room, or probably the shortest person in the room, in some ways.
So, I think there are so many ways, like, growing up, especially, for me, I didn't have a large friend group, I really struggled socially, I did play soccer, that was very helpful. But otherwise, I was alone a lot of the time. And I think that for me, even the concept of, like, talking more, speaking out more, standing up more, showing up more, those concepts felt so unfamiliar and so uncomfortable. And those are concepts that are a struggle when you have online businesses to run and people to show up in front of.
DR. MEGAN NEFF: Yeah, there's a lot of showing up in both the work we do, yeah, yeah. I'm diverging a little bit. We're both losing our voices.
Okay, so one thing you said earlier, okay, I'm tying together two things you said, one thing you said earlier was about when I was describing that this is a sad way to move through the world, you said it's exhausting. And then you talked about being alone a lot in childhood. So, I get a lot of questions around, like, social skills training and parents who aren't also autistic often worry about their kids of like, that they should be socializing more. I think what people don't realize is we're okay. I mean, that's a huge blanket statement, a lot of us are okay. Like, we need overall baseline, a lot of us need less socializing than allistic or neurotypical people to be okay.
And I wonder how much of that is the kind of socializing a lot of us are doing is really exhausting. So, that might be different, like, if all of my social exchanges were like this, Patrick, with another autistic ADHDer, where I wasn't masking, and I wasn't thinking about the currency I bring, maybe I'd feel different about socializing. But I just don't get the appeal when socializing doesn't really give me anything, but it costs me a lot.
PATRICK CASALE: Yeah, absolutely. I agree 100%. And I think that we're constantly kind of doing this, well, I don't want to use blanket statements either. I think a lot of us do this, like cost-benefit analysis a lot of the time when it comes to socializing. And, you know, you and I have talked at length about the cost, and the taxation, and the ability to recharge and soothe. But I do think there's this internal like, process where I'm like, is this worth the cost for me? Because this is going to do A, B, and C to me in the long run, or the rest of my week is just going to be completely shot.
Like, I do think that it makes being alone a lot more comfortable because you don't have to perform, you don't have to mask, you don't have to worry about how you're showing up if you're drawing attention to yourself.
You know, very often if I'm in friend groups, or social groups, where I don't know everybody I'm very aware of like everything I'm doing. And we've talked about this when we're talking about unmasking. And I just like, the toll that that takes to think about like, when do I nod my head like this? When do I, like, loosen up my shoulders? Where are my hands right now when I'm like sitting down? And all of the things. Like, do I make eye contact? If someone just laughs, do I laugh? I just think that that moment-by-moment, internal dialogue, like play by play is so, so exhausting.
DR. MEGAN NEFF: Yeah. And I think that's what people looking from the outside miss, is they just, you know, there's this cultural idea that socializing is good. And true, I mean, we know this from psychology, belonging and connectedness is like one of the most protective factors for, you know, mental health and just well-being. But this blanket assumption, socializing is good therefore, you know, my kid needs to socialize more or I need to socialize more, right? But like, I've done a lot of that, like, I should go be social, we need to start talking about the quality of the socializing not the quantity.
PATRICK CASALE: That is so important. That's spot on, like quality over quantity for socializing because I think we do have that. I have the internal narrative too. Like, if I haven't socialized for a couple of days, I start to get kind of antsy. I'm like, "Oh, I think I should probably text a friend, I should probably reach out." But then I'm like, "But what is the quality of the connection going to be like? Is this actually going to be fulfilling and connected, where I feel like this is recharging and refilling? Or is this going to drain me even more?"
I'll give you a great example, actually. Well, last week, and probably still now I was in massive, massive burnout mode. And I was very depressed. And I felt very isolated. My wife was at a conference in Minneapolis for the week. It was raining here every damn day. I had just gotten very bad news about some health stuff. And I was in this mood where I turned everything off. I laid in my bed for eight hours in the dark watching Game of Thrones. And I said, "I need to connect with someone. Like, I really do need connection right now. And I know I need it. But I need it to be a specific type of connection. I need to spend time with one of my friends where there will be absolutely no expectation for me to conversate."
And I text one of my friends, Jennifer, who is my clinical director at my group practice here in town. She's also autistic. And I said, "Jennifer, I want to get dinner with someone but I want to get dinner with someone who isn't going to ask me questions, who is going to be okay with sitting in silence, and is going to be okay with just being in each other's space. Is that something you would be interested in." And she's like, absofuckinglutely. I will meet you at six, we don't have to talk at all."
And like, for me that was so meaningful. Even though like I was in such a bad mood, I was so low on energy, I needed that. And that's the type of quality over quantity for me, that's really important.
DR. MEGAN NEFF: Well, okay, I was about to say I love so much about that story. I also, like, hate so much about that story. First of all, just like all of the factors that led into that day, but I do love how A, you have developed the ability to check in with yourself and know what you need. And a lot of us struggle to even have that skill to know what we need. And we just know it when we're all of a sudden in a situation that doesn't feel good. So, A, I love that.
And B, that you could, like, ask a friend exactly for like, this is what I'm looking for, yes or no. And it's interesting, we can do that more easily with other autistic people, right? Like, whereas I imagine that could have been interpreted more offensively by a non-autistic person.
PATRICK CASALE: Yeah, that's very true. And I probably wouldn't have sent that text to most people. I just knew, you know, that's how this will be received. And that's what I needed. Like, I needed that to be received without any sense of, like, judgment, or someone taking it personally, or any of the things that we so often have to worry about when we're having neurotypical conversations.
And it's almost like the joke about like, when you're rewriting your email a million times to make it sound more neurotypical, that's exactly what that text was for me. It was like, let's just get rid of all the fluff, all the bullshit, this is what I need. And that, for me, is the epitome of learning how to take up more space in a lot of ways because taking up space means asking for what you need and being okay with knowing that your needs matter as well. And I think that takes so much time and so much work to get to a place where you can do so without shame or embarrassment.
DR. MEGAN NEFF: And this is what should be taught to autistic teens in social skills groups, right? Not like this is how you make eye contact, this is how you make small talk. And actually, I always say, if someone wants to learn those skills, that's fine. And I do it from a cross-cultural lens of like, in the same way that it can be helpful to learn other cultural norms when they're going into another culture, that's going to help make things more seamless. That's actually a fine skill set to learn, if it's framed as a cross-cultural engagement, not as this is the right way to socialize.
DR. MEGAN NEFF: And on top of that we should be adding in and this as an autistic person is how things you can do to find meaningful connections with others. You can connect over interests, you can learn what you need, and learn how to self-advocate, and ask you know, friends for it, you can connect with other autistic people. Like, that would be a really robust, I'm using quotes, social skills group because it would actually help us learn how to connect with other humans in a way that feels good.
PATRICK CASALE: Yeah, because how much of our lives are we seeking that out and feeling like we cannot attain it? And there's just something wrong with us. And that's been my experience most of my life of like, what is wrong with me? Why can't I connect? Why can't I socialize? Why can't I feel comfortable? And it's amazing to be able to unmask, number one. Number two, to be able to identify what you're feeling and experiencing, and then ask for what you need to help soothe it.
And that's not possible for everybody. And I know that. And I know that Megan and I have the privilege, and we have the education, and the training, and we're mental health professionals, too. So, there's that combination, but it's taken me so long to get to that point where that would even be something that I would send out as a message to someone.
And she came to Ireland with me during my first retreat. And I told her the same thing then, I said, "Jen, if you're going to come with me for almost two weeks, and we're going to travel together, and I'm going to host a retreat, at the end of it I'm not going to want to talk to you. Like, I'm just being very honest. Like, I'll travel around with you, we can go see things, but like, if I need to be engaging, or if I need to be, you know, communicative, I just don't think I'm going to be able to do that." And she was like, "Yeah, that's fine. I'm going to feel the same way." And I was like, "What a major sigh of relief, like, to have some relationships like that in my life."
And I know that, that feels very fortunate to me too. I don't take that for granted whatsoever. But it's been a game changer, you know? Because it did pull me out of that mood quite a bit last week.
DR. MEGAN NEFF: Yeah, I mean, that's huge to have someone in shared space. I mean, it's interesting, I was just writing about the idea of parallel play. I read a… there's a lot of books out there for autistic partnerships. And a lot of them say they're neurodiversity affirming, and then you read them, and it's like, really not. And this was one of those books, where it was cautioning people from parallel play. And I was like, "What?" When I was reading it I was like, "I love parallel play."
And parallel plays when we are essentially doing something in the same embodied space as someone else. And like reading in the same room, or eating dinner in the same space, but not talking.
And I think parallel play is so meaningful for a lot of autistic people. I see why if you're an autistic/allistic relationship, that can't be all there is. But this idea of, like, cautioning people against the dangers of parallel play, I'm like, "Wait, no, that's like such a powerful way for a lot of us to connect." My daughter and I do a lot of that. And it's interesting, I noticed all of the mom's scripts, right? Of like, "Ask your daughter when you pick her up how her day was? Like, in the car, you're supposed to have quality conversation."
I've learned that both her and I prefer to listen to music and just be in the car. And that doesn't mean I'm a bad mom, if I'm not taking advantage of those spaces to have quality conversation. But there's a lot of mom scripts I've had to work through even as an autistic person.
PATRICK CASALE: I'm so glad you mentioned that because, one, parallel play is so, so useful and so important. And I will add and piggyback to Megan's comment of like, an autistic/allistic relationship it cannot be all there is because that's not going to work for both people all the time.
But the scripts, right? Like, the scripts that we have, and these internal, like, narratives and dialogues that we have deeply rooted are things that we really have to work through. And for you, it sounds like being able to work through that with your kiddos, for me working through that with my friend groups, like the people I want in my life, I have to work through the scripts of like, this is how you be a good friend, this is how you show up, this is how you respond to things, this is when you respond to things like… and then more so just giving permission to say like, this is how I am going to show up, and this is going to be how I socialize, and this is going to be what I need from the situation.
And I think being able to do that comfortably feels unbelievably liberating. And I also acknowledge that I'm in the position to be able to do that a lot more than a lot of other people can. And I think if you can't do that safely, or you just don't have people you can do that with then it feels like when we went back to saying this feels like a torturous, lonely, painful existence. And I think that's why, hopefully, there are some like online spaces you can maybe do that with and connect with people or meetup groups, potentially, just for autistic, or ADHDers, or neurodivergent folks in general. But really trying to, you know, find those spaces for yourself wherever you're listening to and living because it's crucial. I think we really need to be able to have spaces where we can take up space and ask for what we need as well.
DR. MEGAN NEFF: I think this is partly why I like so many people when they enter autistic culture connect with autistic culture for the first time. There's some great quotes out there about it, like, feeling like home for the first time because partly, we can communicate more directly, often. Like, there's a shared communication around… And we just intuitively, often, like understand each other's limits. And there's a freedom that comes within autistic-to-autistic communication that personally I've experienced is really powerful. That's part of why I really only work with autistic people, primarily. I cap at five people a day for the most part because my kind of verbal fluency goes way down if I've done more than five hours of peopling, but sometimes something happens and someone will want to schedule like a kind of urgent appointment. And I'll be, like, full disclosure, like, "You know, I'm willing to do that, that'll make you my sixth person of the day so I might not be as coherent. If you're okay with that we can schedule."
PATRICK CASALE: I love that because from a mental health professional to client perspective that's just modeling such wonderful boundary setting and also permission to ask for what you need and permission to be transparent about what you're experiencing. And I think that's so affirmative.
DR. MEGAN NEFF: And it's a disclaimer of like, if you're going to pay for my time, you know, I'll be there, I'll be listening. But like, my sentences are going to be kind of clunky.
PATRICK CASALE: Right, you're not getting like first client of the day, 100% present version of me. But sometimes that's all we need, right? Is like to be in a space with someone who gets it and I don't have to explain myself too. And I think that is valuable in itself.
DR. MEGAN NEFF: Yeah, yeah, absolutely. I mean, there's so much freedom that comes when we can simply say something like, "Hey, my sentences are not going to be as fluid." And the other person gets it.
DR. MEGAN NEFF: Yeah. I can feel the wrap up energy. Am I reading that right?
PATRICK CASALE: Yeah, you are. I know you have a hard and fast appointment in a couple of minutes. And I'm also feeling like my energy is now gone. So, this is a great example on air of like being attuned, and being in friendship, and connection with someone who gets it and you don't have to explain yourself to. So, I think that we can find these spaces, they can exist. And I want to keep that in mind for everyone to who might feel like that's not a possibility. My voice is almost gone, so I'm going to wrap it up, if you don't mind.
DR. MEGAN NEFF: Go ahead.
PATRICK CASALE: I think this was a good conversation, by the way. I liked that we didn't know where we were going with it. And I like where it ended. So, I just want to name that too.
And to everyone listening to the Divergent Conversations, new episodes are out on every single Friday on all major platforms and YouTube. Like, download, subscribe, and share. We'll see you next week.

Friday Sep 22, 2023

Statistically, 70% of Autistic individuals identify as non-heterosexual, and genderqueer people are 3 to 6 times more likely to be diagnosed as Autistic than cisgender adults.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, talk with Rebecca Minor, MSW, LICSW, a gender expansive therapist and advocate in the neuroqueer space, about genderqueer identity and neuroqueer identity—what they are, how they intersect, and how they are perceived versus present in society, relationships, and the mental health community.
Top 3 reasons to listen to the entire episode:
Understand what is genderqueer identity and neuroqueer identity, as well as delve into the misconceptions surrounding them.
See how neurodivergence and queerness overlap for both Autism and ADHD, including what studies have been done around this.
Understand the importance of self-disclosure in therapy, particularly for marginalized communities with intersectional identities, and how it can build connection and community, as well as offer emotional relief for clients.
There is still a lot to learn and unpack about queerness and neurodivergence, but research suggests a strong connection between neurodivergence and gender identity. We hope to shed light, give valuable insights, and broaden your understanding of these diverse identities.
More about Rebecca:
Rebecca Minor, MSW, LICSW is a neuroqueer femme, clinician, consultant, and educator specializing in the intersection of trauma, gender, and sexuality. As a Gender Specialist, Rebecca partners with trans and gender nonconforming youth through their journey of becoming, and is a guide to their parents in affirming it. Rebecca is part-time faculty at Boston University School of Social work and always works through a lens that is neurodiversity-affirming, trauma-informed, and resilience-oriented. In addition to her clinical work, Rebecca has provided cultural humility training and consultation to organizations, schools, and businesses for the past decade. You can follow her on Instagram, hire her for parent coaching, or check out her blog, and free guides and course for parents and caregivers!
Rebecca’s Website: www.genderspecialist.com 
Work with Rebecca: https://www.genderspecialist.com/coaching  
Rebecca’s Instagram: http://instagram.com/gender.specialist  
Rebecca’s Facebook: https://www.facebook.com/RebeccaMinorLICSW 
Neurodivergent Insights Masterclass Series: Exploring Neuroqueer Identities by Dr. Megan Anna Neff and Rebecca Minor: https://learn.neurodivergentinsights.com/exploring-neuroqueer-identities/
Neurodivergent Insights Infographic: https://neurodivergentinsights.com/autism-infographics/trans-autism
MEGAN NEFF: So, over the last two weeks we have been…
PATRICK CASALE: Did you forget your settings [INDISCERNIBLE 00:00:12] because-
MEGAN NEFF: [CROSSTALK 00:00:13] no, it takes me a second, Patrick. I don't have my process in this video. We should keep that in.
Okay, so, over the last few weeks, we've been exploring autistic identity and neurodivergent identity. And I can't think of a better guest to have on today than Rebecca Minor, who is neuro queer and does a lot in the neuro queer space. And so, we're going to dive a little bit deeper into talking about the intersection of queerness and neurodivergence, broadening it to autistic and ADHD identities.
Okay, Rebecca, I'm going to try to introduce you. I know I'm not going to do it justice. But here we go. So, we met on Instagram, which is a weird thing to say. I don't meet people on Instagram anymore. We met before-
MEGAN NEFF: Yeah, I'm too, [CROSSTALK 00:01:04] and I get so overwhelmed. So, I'm so glad I met you like when I had a small following and when I actually spent time in the app because I've loved… How did we meet? I don't even know how we met. But I love that we did. And we've developed what I would say is a really wonderful friendship. And we've presented together on your neuro queerness. You are a gender-expansive therapist, but if I'm tracking right, you're kind of doing less clinical work, more speaking, more advocacy, lots of trainings. So, gender expansiveness in teens, this is your jam. Do I have that right?
REBECCA MINOR: You do, yeah, yeah. I'm still seeing too many clients for how much I'm doing the other things. But yes, I am.
MEGAN NEFF: Right? I am not surprised by that.
REBECCA MINOR: So, welcome.
MEGAN NEFF: What would you like to add about, like just giving our listeners some context for who you are.
REBECCA MINOR: So, I am a social worker by training. Some people care about that. I have been in private practice for about five years with a variety of settings, different experiences prior to that. And I work primarily with queer and trans youth and their journey of becoming. And most recently, I'm spending a bulk of my time working with parents and caregivers to really support them in being able to better support young people.
MEGAN NEFF: I love that. I've been so encouraged by how many parents are really showing up and they're doing their work to show up for their kids. And I love that you're coming alongside parents in that journey because it's a lot to unlearn, and then relearn, and just to address like, the fear that comes with parenting a queer kid.
REBECCA MINOR: You nailed that, yeah. And that's so often what it is, right? It's just like, because of a lack of information there's a lot of fear, and concern, and feeling like they should have all the answers. And so, then, there's a shutdown, right? And it's like not because they don't care, not because they don't want to support their kid, but they're stuck. And so, that shift can happen really quickly, which is also like an incredibly meaningful piece of the work that feels so different than sometimes longer-term clinical work or trauma-focused work that I've done, which goes on and on. This is much more like, "We can take care of this."
MEGAN NEFF: I like that kind of work. It's funny, I work long term as a therapist, but it can be really nice to then have those cases where it's like, "Oh, we can actually address this in five sessions and get you on your way."
REBECCA MINOR: Mm-hmm (affirmative.)
MEGAN NEFF: Which is very, like, I feel like a heretical thing to say when you come from the psychodynamic tradition, but I actually really like having a balance of the two, yeah.
MEGAN NEFF: So, I think how we met is kind of interesting because it goes back to this identity thing. So, I was working in the like, autism, ADHD space, primarily. You were working in the gender-expansive space primarily. I started seeing like, oh my gosh, there's so much overlap with queerness, and specifically, gender queerness among neurodivergent people. So, I started learning about queerness. You on the other hand, do you want to share what you were discovering in your practice?
REBECCA MINOR: Yeah, and I was going to say, I think I do remember how we met, which is mostly that I was like, "Hello, am I autistic?" Which is probably how you meet a lot of people. But I started noticing I was like, wait a minute, if I really sit down and think about it started with one client, right? Who came in and had seen something online and was like, "I think I might be autistic." And I was like, "That's markedly different, like what you're describing is markedly different than what my training had been."
And like in high school, I had volunteered in what? At that point, we were calling the special needs classroom and worked with autistic folks. And you know, the tropes that I had understood about that were so different than the clients I was working with. But once I started peeling back some of the layers and reading more of the current research, I was like, "Oh, oh, are all of my clients neurodivergent and I missed it?" Like, and so, it really set off this thing for me where I got hyper fixated and was researching like crazy, and taking all the self-measures, and trying to figure out not only what was going on for all of my clients, but also what was going on for me.
And so, I think that's when we started talking because I was like, this is just a fascinating clinical thing that I'm seeing. And also, I'm not clearly fitting into one of these categories, and I love your Venn diagrams for that reason because I'm like, you know, I've got a little bit of various things and the visuals made so much sense to my brain.
MEGAN NEFF: Yeah, yeah.
MEGAN NEFF: I love that. Yeah, we were having parallel process. And then, for me, in my process, I was unpacking queer identities, which for me came after the autism discovery, which you were further along in that journey. So, it was a really cool friendship where both clinically, but personally, we were kind of exploring, like, the other specialty which we had been led to by our home base… Okay, I have a visual of what I'm trying to say, but I'm not putting into words well. But yeah, I think that's, yeah, that we were able to kind of both explore each other's specialty in conversation.
REBECCA MINOR: Yeah. And that's when we were like, "Wait, why aren't people talking about this more?" And then I think that's when we got the idea for starting that, like, ask our followers questions about that intersection.
MEGAN NEFF: Yeah, yeah, yeah. And I think that'd be a helpful thing to get into, but we like to anchor in lived experience here. So, can you share a little bit more about your own neural queerness and your journey around that, or whatever you want to share around that?
REBECCA MINOR: Sure. So, I think one of, kind of, the place that I've comfortably settled is in using neuro queer as a label identity-wise. I'd gotten comfortable with the concept of queerness and that felt good to me, then I became aware of how inextricably linked I think my queerness is to my neurodivergence. And so, it just felt like it made so much sense and it's easier to say. That's one thing.
But I did go through a long process, and I'm still navigating the, like, "What exactly is going on here?" In terms of my own brain. I have a trauma history and a history of anxiety. And so, those things can confuse some of the, you know, they can present in some similar ways. And so, it's been a journey of kind of parsing out like, what's potentially autism? What's potentially ADHD? What's potentially trauma or anxiety? Or this or that? Or, you know, being burned out? Or just the combination of like being alive during a pandemic.
So, yeah, it's been interesting. At times, it's been pretty difficult and emotional. And you've been so lovely and gentle with me, which I appreciate, when I have weird questions, or I'm like, "Does this mean this?" And you're like, "Well, not always." But yeah, so I feel kind of like, I definitely meet criteria for ADHD, that feels solid. And I think-
MEGAN NEFF: Thank you too.
REBECCA MINOR: And I was going to say anyone in my life would also concur. And then I have like a sprinkling of other things that one might consider to be like-
MEGAN NEFF: I call it the neurodivergent potpourri bag.
REBECCA MINOR: Yes, yes. That's me. Got some family history in there. So, yeah, it's been interesting, and I think professionally, it's always a weird thing to navigate that like, personal/professional line of how much do I share? How much do I not share? Is it okay for me to talk about these different things if I don't feel like I can use the hashtag actually autistic because I don't have a diagnosis? Do I need formal diagnosis? And the thoughts go on, you know? So, that's kind of where I am. I'm happy to talk about it, it's a fine thing to say.
MEGAN NEFF: And yes, I think I know that about you from having seen you in public spaces. And that's something I like about your presentation style is how openly you talk about this.
I'm kind of diverging from where I initially thought we might go. And I do want to get back to talking about gender queerness. But I think this will wrap into it. Part of what you're talking about is being in process of your own identity as a clinician, but also, as a public clinician, I didn't mention this, but you also have a platform on Instagram, and you create content as well. I heard on a blog post a couple years ago, that's probably been the one that gets the most feedback from clinicians, and it's about being an identity-based practitioner, when our practice is based on our identity in the sense of, I am an autistic therapist, therefore, autistic clients come to me.
In our training, we're taught so much about like, blank slate, don't disclose. I'm just curious, both Patrick and Rebecca, your thoughts around exploring our identity while you're seeing clients. And then, also, while doing it publicly not just privately because there's a lot there.
PATRICK CASALE: See, we're doing a good job today. We're reading each other's facial expressions and all those things. I love that you just asked that question. I just want to also apologize for my voice today to everyone listening, it's struggling. I actually just had this conversation in our team meeting with our staff about using identity-based language, and especially, if they feel safe enough to do so because we are a practice that specializes in supporting the neurodivergent and queer communities in Western North Carolina.
I know we've talked about this, Megan, at length, but I do think it's nuanced. We always say that. I feel like that's going to just become incorporated into our fucking conversations on this podcast is the word nuance. But it is nuanced, and it is complex, and I think it's also advocacy at its truest form for our clients who are so desperately trying to find a landing spot, a place where they can feel safe and comfortable, a place where they don't have to, you know, explain everything over again, maybe their circumstances are different, but they don't have to say or explain everything in a clinical interview like they typically would. And I just think it's so powerful, and so much more humanizing when we use identity-based language, when we are able to show up in those spaces.
And I also think it's also really complicated, especially, for those of us who have audiences who have followings, as we're also unpacking our own identities, as we're also unpacking our own neurodivergent journeys. Like, for those of us who were diagnosed in adulthood, sometimes you get it wrong. And sometimes you're also unpacking your own internalized ableism that's existed throughout most of your life. And I think then you walk it back, and you learn, and you try, and you try again, and you continuously show up even when you get it wrong. And I think that's the most important piece here, for those of us who are showing up in public spaces.
But again, I just cannot say enough how much I think that speaking out openly, and disclosing, and using identity-based language is just so important in terms of advocacy across the board for people who just don't feel safe enough to be able to do the same things that we can do.
MEGAN NEFF: It certainly makes the countertransference more hot, is what I've noticed. Like, when your client is working through things that you're also working through.
REBECCA MINOR: That's true.
MEGAN NEFF: And Rebecca, I think you've experienced some of that or am I projecting?
REBECCA MINOR: No, no, that's totally fine. I've definitely experienced that because, in real-time, it was like I was working with clients who were like, "Wait, is this, you know, what's been going on all these years?" And it explains all these things. And like, there's the relief, and the like aha of that. But there's also the grief and the pain that comes with that, and holding that for clients in session, but also, navigating that myself, it's a lot.
And then, I also think about the parent audience, which I also have because I work with young people, right? So, like my teenage clients will be the first to tell you about my various neurodivergent tendencies because they have no problem with this or calling me out on them.
But with parents, then it raises those questions of like, "Will they doubt my competency? Like, what does that mean?" And it was the same thing for me as coming out as queer of like, "Will parents then think I'm like luring their children into this lifestyle?" Which is not a thing, but like, is a concern. And so, yeah, it's the potpourri.
MEGAN NEFF: It's going to be in the name of our episode, potpourri.
PATRICK CASALE: It's definitely going to be in the description somewhere, probably on the website, too. I think the grief relief process is something we talk about a lot. And I've experienced, you know, pretty often, especially, when I was formally diagnosed at 35. I'm 37 now, it's been a year and a half journey. But I think you're right, the countertransference is really intensified, and simultaneously, the relief for the client has gone up exponentially. So, I think both of those things, as my therapist thing is always like, "Both can be true." Those are both true. And like, the ability for the client to…
I also am someone who speaks openly about a former gambling addiction. When I've talked about that with clients, you see the immediate relief of like, "Oh, shit, someone gets it. Like, I'm not alone in this." And that has always been my driving force for disclosure. It's never been about like, what does it do for me? I always want to throw that asterisk in there for any clinicians who want to be like, "That's ethically not sound. Like, we don't disclose."
But when we are talking about people who are represented within marginalized communities with intersectional identities, then I think its disclosure is that much more important of a therapeutic intervention and I think that when you start to realize like, that's what it's about, it's not about what it does for my sense of self. It's more about like, what does it do for the person who feels like there is no glimmer of hope? Or that things will never change or be different?
REBECCA MINOR: Yes, yeah. And that's where that question of like, who is it for? It needs to be the guiding principle. One other thing you said earlier that I just didn't want to leave out was, oh, there goes brain processing, it was about getting it wrong. I was terrified of getting it wrong. And I still am, right? Like, there's still a part of me that's like, "Well, I don't know. Like, according to the data." And, you know, but in periods when I've been more burned out and gone back, and retaken some of the assessments, I'm like, "Oh, those numbers look a little different." But still, yeah, it's a thing.
MEGAN NEFF: We're going to talk about RSD soon. And I think getting it wrong, well, first of all getting it wrong because like, we are all very justice-oriented. So, I think, especially, when we get it wrong for our communities and for the most marginalized communities, like I know all of us feel that deeply. And then, also, the, like, aspect of RSD.
And I just read, like, social justice RSD. I hadn't heard that term before, but also, like a strong reaction to injustice. But because we've all had private conversations around this I know how much we care about not getting it wrong. And you can't be in public space and not step in it. Like, and it's good, right? It means we're… well, it's not good, but it's a sign that we are learning.
PATRICK CASALE: And there's a lot of unpacking to do even now and continuously. And I think that is important no matter what. But I think it's so important when you do have public space that you take up because people are following you, people are listening to you, people are sharing your stuff. So, I think there is even, it feels like almost this pressure to get it right. And that, for me is a struggle sometimes because then I get into like perfectionism mode. And I'm like, "I have to get it right. I can't post this because this could get picked apart in 100 different ways."
So, then I have to step back and think like, okay, what is the purpose of what I'm creating and posting because if it's informative, if it's supposed to be supportive, encouraging, etc, then I want to put it out there regardless of the fact that someone may say, "Next time you do this you should probably use this for vernacular, or this word, or this verbiage.'
And that's okay because then it's like, "Okay, I get that and I will do that the next time." But I don't want that to take away from the message either that can often be missed if we are unwilling to put ourselves out there. And that's why we all have platforms because we're willing to put ourselves out there and talk about stuff that a lot of people shy away from.
REBECCA MINOR: Absolutely, yeah, and I think the more self-disclosure I've done online, in appropriate and boundaried ways, for the therapists listening, has, like you said, right? Has shocked me in its traction, right? It's the stuff where I'm like, "Oh, this is what the people want." That gets like nothing. But when I'm like, "Look, I'm messy just like you." People are like, "Awesome." And it's like shared all over the place, right?
Or recently, in terms of unpacking identity and Megan Anna, you and I have talked about this as the reality of moving through the world as a queer person who holds a lot of privilege because I'm married to a cis man and how navigating that has been tricky and interesting. And so, I was so afraid of sharing about that and losing some of my queer followers who would be like, "You're another one of those, like next." And I forgot, or, you know, wasn't prioritizing the thousands of people who have reached out, and liked, and commented when I've shared like, "Hey, this is actually what my life looks like."
And just in the last month I have like, built this small but growing community of women who are in straight passing relationships and navigating their queerness. And it's just been really fascinating to see. But I think I absolutely get stuck in that feedback loop of like, I was doing it yesterday with a post where I was like, writing about protected time. And then I was like, all I could hear was people being like, "Oh, nice that you have protected time, what a privilege?" You know, and then I archived the post because I was like, "Urrgh." So, yeah, it's…
MEGAN NEFF: Yeah, I love that. I've definitely been there, done that. First of all, I just want to say, I love how you have, like, talked so openly about the complexity around queer identity. And how, yeah, like our marriage setup or partnership setup doesn't make an identity. And that was actually really empowering for me.
I also remember, we talked the weekend before you made the post of like, kind of, revealing that you were married to a cis man. And I remember the anxiety of that. And I totally understood that. But I love how you have come into that space. That's actually partly what gave me permission because it was that question of like, okay, I am queer, our family is very queer as like, but I'm also like, not in a queer partnership. So, what do I do with that?
And so, the work you've done around identity, I think, is so helpful because identity is so much bigger than the structure of our partnerships.
REBECCA MINOR: Absolutely. Yeah, thank you.
MEGAN NEFF: Should we shift to talk about identity and kind of gender queer identity and neuro queer identity? I know that we've done a lot of work at that intersection. And I wonder if it'd be helpful to do some of, like, a bird's eye view of some of the things that we discovered when we were asking our audience and what we've presented on, the speaker time to shift.
REBECCA MINOR: Sounds good to me.
MEGAN NEFF: Rebecca, do you want to do the bird eye view? Like…
REBECCA MINOR: Oh, I feel like you're better at that?
MEGAN NEFF: …intersection. What did you say?
REBECCA MINOR: I said, "Oh, I feel like you're better at that."
MEGAN NEFF: Okay, I will try and then, you will [CROSSTALK 00:23:30].
MEGAN NEFF: Yeah, so, okay. So, I mean, we know that there's a huge overlap of queerness and neurodivergence, both for autism and ADHD. It's a little bit more pronounced in autism than ADHD. So, first of all, talking about sexual queerness. There's one study, and as a disclaimer, it was a smaller study, but the study found that 70% of autistic people identified as non-heterosexual. And the language non-heterosexual they use that because it also included people who were asexual and [INDISCERNIBLE 00:24:12]. But essentially, 70% identified as some form of queer. That's huge.
The research also found it's more common among people assigned female at birth. So, cis autistic men. So, people like you, Patrick, are more likely to identify as heteronormative and heterosexual than everyone else. So, this gets, I think