Episode 47: Autistic Burnout (Part 2): A Deep Dive Into The Diversity of Burnout
Mar 28, 2024
Show Notes
Burnout can make even the simplest tasks feel insurmountable, as well as look and mean very different things when you approach it from the lens of neurodiversity, where the meanings, causes, and coping mechanisms become very nuanced.
In this episode, Patrick Casale and Dr. Megan Ann Neff, two AuDHD mental health professionals, explore the landscape of burnout, seasonal depression, and the importance of strategic withdrawal, offering solace and understanding to those who tread these difficult terrains.
Top 3 reasons to listen to the entire episode:
- Identify how what we call burnout might be related to co-occurring health conditions, such as alexithymia, chronic fatigue syndrome, seasonal depression, etc., and possibly require different approaches.
- Shed light on internalized ableism and grief, and how recognizing and honoring your limitations can be both a struggle and a profound form of self-care.
- Learn strategies for addressing burnout that are tailored to neurodivergent individuals, as well as how to communicate your needs to the people around you to protect your energy without causing worry.
Remember that acknowledging and respecting your brain's unique wiring isn't a sign of weakness — it's a brave act of self-compassion. Reflect on how you can implement these lessons into your life, honor your natural rhythms, and create your own Ulysses pacts with yourself and trusted people to safeguard your future self. Let's continue this conversation and support each other in our collective journeys towards mental harmony.
Resources:
- Check out the article “A conceptual model of risk and protective factors for autistic burnout” by Jane Mantzalas, Amanda Richdale, and Cheryl Dissanayake here: https://www.researchgate.net/publication/359924348_A_conceptual_model_of_risk_and_protective_factors_for_autistic_burnout
- Citation: Mantzalas, J., Richdale, A. L., & Dissanayake, C. (2022). A conceptual model of risk and protective factors for autistic burnout. Autism research : official journal of the International Society for Autism Research, 15(6), 976–987. https://doi.org/10.1002/aur.2722
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Transcript
PATRICK CASALE: Hey, everyone. You are listening to the Divergent Conversations podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale.
MEGAN NEFF: And I'm Dr. Neff.
PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health, and there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening.
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MEGAN NEFF: Okay, Patrick. So, we've been like trying to figure out what to record today. And we settled on burnout part two. So, let's do that.
PATRICK CASALE: I think it's fitting, because I'm just, like, reading your energy. And I think we're both in burnout. But I get the sense that you are in a heavier state of it right now than I am.
MEGAN NEFF: Yeah, I agree.
PATRICK CASALE: [CROSSTALK 00:02:02]-
MEGAN NEFF: It's like contagious, I know, I know. Is it like a contagious fatigue, because I know that energy can be infectious?
PATRICK CASALE: I am just happy to be here today with you, because I am mentally preparing for my world tour of five months of traveling. So, whenever we can get episodes in, I'm happy about it.
Weirdly, I'm like not in burnout at the moment, but I'm mentally preparing to be in burnout, which is a very strange thought process.
MEGAN NEFF: That is really interesting, mentally preparing to be in burnout.
PATRICK CASALE: Yeah.
MEGAN NEFF: I wonder if… Lately, I've been, like, playing around with comparisons between chronic pain theory or like just how we work with chronic pain, and then sensory overload, but also burnout. So, like, we know when we are anticipating pain it increases the pain experience. And I've been curious if something's true about that, with both sensory overload and burnout.
Like, it is interesting. I wonder if anticipating burnout is helpful. If it like psychologically prepares you or if it like sets you up in a way that intensifies it?
PATRICK CASALE: It's a good question. I've never actually mentally prepared for it before. I've also never known I was autistic before until the last couple of years.
So, I think all of this newfound information and insight is helpful in my processing, because like, right now I feel okay. Like, it's January. It's gross outside in Western North Carolina. It's freezing. It's pouring rain. I have no desire to do anything. But that doesn't feel like burnout to me. That just feels like malaise.
But I think I've been in this recharge period, because I've known that this very, like, heavy four months is upon me starting this week. And there's been a lot of anxiety around that. But I'm also mentally preparing for like, we talked about this a little bit last week when we were talking about meltdowns and shutdowns, holding space for a lot of people, attending to a lot of people, being around a lot of people, the travel, the airport. There's no way I'd come out of that unscathed and like feeling recharged or refreshed by the time we hit June 3rd when this is all over.
MEGAN NEFF: Yeah, as if this will be your last year doing this. Oh, that sounds totally unpleasant.
PATRICK CASALE: So, you mentioned you had some new thoughts on burnout since we did that episode several months ago. And I'm curious about those. And I think this is perfect timing, because this episode probably won't air till like March-ish. We're recording as of late January 8th, 9th. I don't even know what the day is.
And, you know, new year's resolutions, and new year's our society kind of like thrust upon us like this capitalistic hustle culture, grind culture, productivity, do all the things, reinvent yourself, new year, new me bullshit. And like, I think this is such a recipe for burnout.
And if you're already coming into the new year of feeling burnt out, that just feels like it just adds this enormous amount of pressure where it's like, I already feel this way. How in the hell am I supposed to dig myself out of this hole at this point in time?
MEGAN NEFF: I relate to the dig myself out of this hole. I think that's what I'm feeling. Like, like my health stuff has spiraled. And I know that there'll be some big, like, lifestyle changes that could help. But it's like I am so tired all day. That it's like, I can't live… Yeah, dig myself out of the hole. It's like to do the things I know would help me, it's hard to have the energy units to do those things. I'm trying. I'm working at it. But yeah, it's hard, for sure. I-
PATRICK CASALE: [CROSSTALK 00:06:10]. I'm sorry, go ahead.
MEGAN NEFF: I was just saying, I have a slightly, like, it reminds me of our holiday episode. I have a slightly different experience in the new year. Like, I don't like New Year resolutions. But I do like New Year intention setting.
I just did a deep dive into habits. And one thing that was interesting to learn is we are best at forming new habits when hope is high. And hope tends to be higher with, like, fresh starts. So, if it's like a Monday, or a morning, or a new month, or a new year.
So, if you think about, like, especially, this year, because the new year was a Monday, in a new month, in a new year, like, hope is high.
So, I do try to take advantage of that. Yeah, I think resolutions feel like demands so that, like, I skip that. But I do like the freshness of kind of clearing intentions, or clarifying intentions and trying to lean into those.
So, I am doing that. But yeah, in a low-demand way, because the fatigue is pretty intense right now.
PATRICK CASALE: Yeah, I can tell and sense that for sure. And I think that I don't. I don't dislike the idea of fresh starts, New Year's, like, when hope is high, I like that mentality. I think I hate the societal, like, expectations and pressures of, like, what holidays bring upon us.
And I am very much the person where it's like society says we should feel this way, well, I'm going to do the exact fucking opposite.
MEGAN NEFF: Absolutely.
PATRICK CASALE: I also struggle so much with the winter months. Like, my seasonal depression goes way up. My lethargy goes way up. I think that I use the first nine months of the year or the last nine months of the year to like, really get into a flow state, and do a lot, and produce a lot. So, I always end up like, it feels like you're like getting to the end of the marathon. Like, you see the finish line. And you're just like basically dragging yourself across at the end.
And that's kind of where I end up every year. And I found I can either, like, beat myself up for that, change my habits, or I can just accept the fact that nine months of the year I'm going to feel really energized. And as we approach the colder months, I'm going to start to slow down quite a bit and go into almost like a dormant hibernation stage, so that I can, you know, do the things that I've been doing on an annual basis.
MEGAN NEFF: So, my spouse just literally joked about that last week. He's like, "You're like a bear. Like, you go into hibernation."
Because, I mean, and I do feel bad. Like, he feels it. And I don't know how I forget this, maybe it's like selective memory. But every January is so hard for me.
And so I live in Oregon. The winters are really long and gray. And my chronic fatigue just gets so intense. Like, I typically, outside the winter months will have like, maybe a three-hour block in the day where I'm not totally fatigued. But in January, it's just like it's just a wall of fatigue that's constant. And it's so painful.
PATRICK CASALE: It is really painful. And it's so heavy. It almost feels like minute by minute existence becomes more challenging. And you become more aware of time and how slowly it feels like it's moving.
And there are so many days in January and in like February too, here in the mountains, like where I don't want to get out of bed, I don't want to do anything at all.
And I have this internal dialogue of like, "You're being lazy, you're not being productive." Versus like, "I don't care. Like, I just don't want to do anything." And I'm going to more likely succumb to that.
So, when we add in autistic burnout on top of just seasonal stuff, and weather, and temperature, and getting dark out at three, four o'clock. Like, it's really challenging.
MEGAN NEFF: Oh, absolutely, absolutely. Yeah. Yeah, Luke is trying to convince me to go to California for a week, next month, to get sun, because I know, like, I don't know what kind of planet it is that just like thrives in sun but like, I become such a different person when I have said.
Yeah, it's a rough month. And I realized by the time, like, this is released, it'll be March, and the days will be getting longer, which is great.
But yeah. Okay, so you asked about, like, what are some of the new things in burnout that… Yeah, so I just revised my burnout workbook, which was, like, one of the first I ever did. And there's some newer research that's come out that I was looking at. I was like, "There's some really interesting stuff in here."
But one of the revisions that I'm making to how I'm talking about burnout, and this is partly because of the conversation we had with Mel, and then I'm collaborating with an autistic functional medicine provider on some resources who's really helping me understand, like, chronic fatigue syndrome, and like all the health things is I'm realizing that a lot of the things that we call burnout might actually be co-occurring health conditions.
PATRICK CASALE: Sure.
MEGAN NEFF: Or like this January, like I'm so tired, it is so painful. Is that burnout? Or is that, like, chronic fatigue flare secondary to, you know, sunshine?
And I realize this drives some artistic people crazy. I'm like, yeah, if burnout's a helpful concept, let's call it burn… I mean, okay, let me nuance that. If there's a co-occurring health condition that should be supported and treated. But like I'm not necessarily feel like I have to tease out, like, is this seasonal fatigue? Is this burnout.
Like, it feels similar to burnout and that like, losing motivation for my interests. And just like that collapse, like burnout feels like collapse that feels similar to me to burnout. So, like phenomenologically, it feels similar to burnout. I don't know if the cause is exactly the same, but yeah.
PATRICK CASALE: I kind of like that you just said that, because that's what I was thinking about as you were talking, as someone with co-occurring health conditions, as so many of us have.
At this point, it's kind of like, I feel like crap. Like, however, I label it, or define it, or if I figure out the causation, does it really matter?
And like you said, yes, if there's a co-occurring medical condition or mental health condition, sure, treat it. And like, start there. But ultimately, I feel like shit, like, mentally and physically. Does it really matter the reasoning behind it? Because… but my brain says it does matter so much in some ways, because we are so wired to, like, figure out the causation. And the causation and the analysis behind said causation can really create, like, overwhelming anxiety and overwhelm, as well.
MEGAN NEFF: Yeah. I mean, I think it's a powerful way to feel in control. And like when our bodies collapse on us, I mean, like that's a very, like, powerful sense of being in lack of control. So, I think when we can like pinpoint, like for me it's like, "Oh, I had something that had gluten in it, no wonder I feel like shit today."
Like, that's helpful, because then it's like, it gives me a sense of control back of, okay, so if I choose not to do that then I won't feel like shit, like, the next day. Some of that might be kind of mythical. Some of it is true. Like for me, gluten definitely is a huge trigger.
Oh, my gosh, thoughts flew away. Yeah, okay, the thought flew away, but there's another thought. I think this is why, like, Mel's all the things, is like there rarely is one thing, right? It is all the things. And then all the things are… So, if we go back to that burnout equation that Rainmaker put out it's like cumulative life stressors exceed our ability to cope.
PATRICK CASALE: Yeah.
MEGAN NEFF: All of the things are the cumulative life stressors. The lack of sunshine is a cumulative life stressor for me right now. The factor we got a new puppy in January, which is just dumb, that's a cumulative stressor. Like, and so the health things are part of the cumulative stress that becomes part of the burnout equation.
PATRICK CASALE: Absolutely. Because if you add these things up, right? And I always have this, I don't know why. I always have this, like, thermometer image or like, you know, in fundraisers where they're like, "We're trying to hit this level." And then each thing crosses off the next threshold. But that's the way I look at it is compounding stressors.
So, if we have weather, seasonal stuff, new puppies that you can't sleep, or there's just a lot of extra stimulation, chronic health conditions, things that, you know, absorbing energy from the stress of the world, having to go to work. Like, all of the things that come into play.
And if we are so stretched, and we are so… I'm going to choose my words carefully. I don't want to say limited in our abilities, but really-
MEGAN NEFF: I feel limited.
PATRICK CASALE: Yeah, limited in our abilities. So, each thing creates this additional notch, each thing creates this additional level of pressure, and overwhelm, and stress, and dread. And then of course, your ability to combat depression, anxiety, fatigue, etc. just diminishes greatly because your reserves and your resources are just gone.
MEGAN NEFF: Yeah, yeah, absolutely, absolutely. Okay, so this does remind me of the article that I think was like a 2022 or 23 release. Of course, I can't remember the authors off the top of my head, but we'll link it in the notes. But it was looking at the risk factors and protective factors of burnout. And I loved…
And I think at this point it was kind of hypothetical, I think, it was a theoretical paper that they're now going to be doing some study on, but I really loved the breakdown of that way.
So, one of the risk factors was, like, co-occurring health conditions, co-occurring mental health conditions. But other things that we've talked about like alexithymia and interoception. I mean, it makes so much sense when I saw that, that alexithymia was on there, or like lack of self-awareness. But I wouldn't have necessarily thought of that, like, on my own. And I was like, "Oh, that's really interesting."
But it makes sense, right? If we struggle with self-awareness, especially, body awareness, we're not as tuned in to our cues of when we're burning out or when we're fatiguing. And so that was one of the things that I thought was interesting was just that connection of self-awareness to burnout, which self-awareness and masking are also related. Like, self-awareness just keeps showing up as, like a pretty key factor for our wellness, I think, as autistic people.
PATRICK CASALE: Yeah, it makes a lot of sense, because if you're not able to identify certain emotions or sensations, and they continue to build up, and you continue to push yourself past that ability to manage them, it's going to lead to this feeling of burnout or this experience where it's just like, wave the white flag, right? Like, I can't do this right now.
And yeah, I think this topic feels really heavy, because I think so often we're just like, "We need a solution. We need to figure out why. How can we get out of this house?" Like you said, "How can I dig myself out from this hole?" And then you compare that or contrast that with this feeling of like, there isn't a way out. Like, there's no way out of this. Do you ever feel that way?
MEGAN NEFF: I do. And it actually took me a while to tease this out, I think, for a long time, because my long COVID exposure and my autism discovery happened within the same six months. I think I was misattributing a lot of my long COVID to autism. Like, my autism diagnosis was after actually overshadowing my long COVID.
So, for me, that I'm never going to dig out is mostly related to the long COVID stuff and to the chronic. So, yeah, chronic health.
And yeah, that's a pretty terrible feeling of like, what am I? I'm 39. And my body feels like it's like 85. But, yeah.
I do have some hope. Like, if I didn't have any hope I wouldn't be trying to make readjustments this year. So, I'm at a point, I did some kind of deep meditation around this. I think this is my year. I think if I don't reverse the cycle I'm in this year then the next decade will be really rough for me. I think if I'm able to reverse some patterns, and get into a healthier cycle, then I do have some hope. Yeah.
PATRICK CASALE: Yeah, that's a really powerful thing to name and to recognize. It kind of makes me think of the Tarot reading that I did the other day, because it's what it was all about, was like, figuring out ways to set buffer time or boundaries around my time when I say yes to protect my energy. And the person doing the reading was like, "If you don't change this, this is going to destroy you in the next couple of years. Like, you have to change this."
And the final card that they pulled was like this communal community storytelling, sharing wisdom card. And it's like, "Oh, my God, Megan and I are trying to create this community, but neither of us have the time or the energy to create this community."
And it just made me realize, like, how important protecting time and energy is. And how poorly a job I do that so often where like, I thought to myself, I'm going to do this solo trip when I get done with all this travel, and hosting, and retreats, and all the stuff that I'm doing. I'll take myself somewhere that I really want to go, and I'll just drop in, and I'll get really, like, connected and disconnected. And it'll be wonderful. And I so need it.
And instead I booked a trip to Romania with my dad, where like I have to attend, and host, and plan, and do all of the things that are essentially destroying me.
So, my goal for this year, even though we talked about intentions in a previous episode, is to be almost ironclad with the things that I am now going to say yes and no to, because, like you just said, if I don't make some changes, the next 10 years are going to be really hard for me, too.
MEGAN NEFF: And that's a hard thing to hold in mind, like when the urgency and immediacy of the moment, right? Especially, as ADHDers. Like, our future self feels so non-existent. So, to hold that future self in mind when present self is making decisions, like I'm going to say yes or no to this. That's really hard.
I've been practicing kind of a meditative, like, the what I do. It's kind of like stream-of-consciousness meditative practice I do before sleep. And I'm distinctly playing out, like, these two lives of what the next 10 years could look like for me.
And I have to do some sort of exercise like that to keep my future self front and center. Otherwise, present self-urgency, immediacy, novelty is always going to win. And that's frankly part of what's kind of destroying me.
Yeah, we haven't really talked about that, about how like ADHD fuels burnout. Like, ADHD fuels autistic burnout, because novelty, urgency. Like, why did you say yes to Romania? Was that like a people-pleasing thing? Like, was that a novelty thing? Was it combo?
PATRICK CASALE: I just explored this in depth with my therapist, Leslie. I think that it was some people pleasing. But I also think there's an inner child part of me that's, like, excited that my dad wants to do something and wants to travel. And I'm like, "Oh, my God, that's so exciting."
And I don't have any buyer's remorse about it. But in hindsight, I should have stuck to my plan, which was like, go somewhere solo, drop off the grid, you have just got done with five months of attending, and attuning, and hosting, and you're going to need it. And of course, that's not what I did.
So, that was very, like, immediately and glaringly obvious for me. And that does come into play with the ADHD side, where it's like, there is novelty there. It's like, oh, there's all these castles. This looks really cool. This would be a cool experience. Like, let me get to planning this entire trip. And then before you know it, it's booked. And I'm like, "Fuck. Like, that's not what I wanted or needed."
MEGAN NEFF: Well, I mean, I think part of what's complicated is like it was value consistent. Like, it was a value-consistent decision to do a trip with your dad. It's also value consistent to say no and take rest.
And I think, I mean, we've talked about clashing values on here before, like, that is one place where it can be really hard to say no, of like, well this… but it's consistent with my…
Okay, there's this other thing I learned about when I was diving in the Hobbit literature, which is this idea of like Ulysses pact. So, you know, like, it's in the Odyssey, I should know this. I always mess up where things come from, but where he wanted to hear the sirens, like the sound of the sirens, but he didn't want to get lured in to be destroyed. So, he had his, like, sail people tie him up on the mass of the boat. And then put cotton in their ears. And like said, like, "Get your swords out and fight me if I try to like, you know, get undone so I can go, you know, swim with the sirens."
So, when he was, like, in his mind, in his sane mind, he made a pact with himself for his future self. And I love that idea of like, when you're in a grounded space, how do you make Ulysses pacts with your future to protect your future self?
But yeah, I think you and I both need some Ulysses pact for like, how to say no to things this next year.
PATRICK CASALE: I agree. I'm happy to try to hold each other accountable with that, because it's so hard. And we talked about it on a previous episode where you were talking about, like, bigger and bigger opportunities coming your way, right? Like, as you continue to develop this really great reputation in the community, you're going get more opportunities, and it's hard to say no to those things, like we talked about.
I almost feel like thinking about like present self versus future self ADHD subparts versus autistic parts, I always go to this image of tug of war. And it's almost like this image of like, the ADHD side pulling that rope so hard when something new, and exciting, and stimulating comes up when I'm bored, or when I'm depressed, or when I'm feeling like stagnant or, like I just am stuck.
And that side tends to win out so often. And now it's getting more interesting because I'm so much more aware of that, trying to do that zoom of with like, if you say yes, what does that lead to? If you say yes, what does that mean for you in the next six months?
But it's so hard, because it's so easy for that part of the brain to just be like, "No, this is exciting. Like, this feels good now." And we want to feel good now. We don't want to maintain for six months and feel okay, we want to feel good. And I think that is the difference is like, my system is so much more willing to feel good momentarily, or in the short term, and overlooking the long term effects, because the long term effect is like, what's the alternative to just feel okay? To just get by? To just maintain? And my system's like, "No, I don't want that at all."
MEGAN NEFF: Yeah, yeah. Absolutely, absolutely. And partly, because, yeah, it gives that like, momentary reprieve, like that bolt of urgency, and dopamine, and energy that comes with that, like gives a momentary reprieve from the fatigue and the burnout.
It's good to feel motivated. And Luke is good at reminding me of this, too. He's like, "You get excited, but that goes away. And then you have to do the thing."
PATRICK CASALE: That's true.
MEGAN NEFF: Yeah, okay, we should start a thing where from now on, if we say yes to anything for 2024, we text each other, and we are like, "This is what I said yes to. I think it's going to take this amount of hours. This is why I said yes." And where we like-
PATRICK CASALE: Deal.
MEGAN NEFF: Deal? Okay, let's do it.
PATRICK CASALE: Deal. I mean, we're on air, this is going to be our [CROSSTALK 00:29:27]-
MEGAN NEFF: We're committing to it.
PATRICK CASALE: That's accountability at its finest, you know?
MEGAN NEFF: Yes, accountability, you know? Or no accountability. So, actually, I just said yes to something yesterday. And I've been like going back and forth for the last three weeks on this.
And it was very meta, because Luke and I were talking about this last night. My publisher who's publishing Self-Care for Autistic People is interested in doing a second book on autistic burnout. And the first timeline they gave me was a really fast timeline. And I was like, "I can't do that."
And then they came back with a second timeline that is still more speedy than I would like. But I'm, like, sitting here debating like, 'Okay, I think writing this book on burnout is going to drive me into burnout." So, it's very meta, like, but I did say yes. And so I'll say no to everything else now.
PATRICK CASALE: I've heard that before. So, how do we stick to this? Because we're here talking about this from a very meta perspective, and from a like, zoom out lens, trying to offer this, like, perspective to people who are listening yet we continue to fall into this trap of like, "Hey, this is exciting."
And this goes back to so many of our recent conversations where we've been like, I just got a tattoo and it's like, coming apart all over me, this comes back to this part where we've talked about romanticizing the fantasy of what life could be like. And I think that that still wins out so much, because when we talk about momentary day-by-day existence, moment-by-moment existence, and how painful it can be, and how hard it can be, and how exhausting it can be, and how lonely it can be, it's so easy to default to saying yes to the things that can try to shake that up, even if it's just a momentary blip on the radar.
MEGAN NEFF: I love that you connected this to fantasy, because absolutely, that is part of the yes. And this is where I come back to like how important grief work is like I think until we grieve our limits, like I am okay saying I have limits. Well, part of me is okay saying that. I certainly don't live or commit to things as if I have limits. So, I obviously haven't fully grieved my limits, because if I had I think I'd have an easier time saying no.
But you're absolutely right, the fantasy that kicks in, the fantasy of not being limited, the fantasy of my future self can do this. That is often there behind the yes.
PATRICK CASALE: Sorry, I've listened to you and yeah, the grief work is so important. My dog was barking, so I was just trying to [INDISCERNIBLE 00:32:33].
So, I saw a post today, I can't remember who posted it on Instagram about how we check our own internalized ableism. And one of the bullet points was like, if you can't come to terms with the fact that you do have limitations and continue to push past those limitations, whether it be in society, whether it be socially, whether it be productivity-wise, and I was like, "Mm-hmm (affirmative)." So, that could have-
MEGAN NEFF: Yeah.
PATRICK CASALE: …what comes up for me when we're both talking about this.
MEGAN NEFF: Yeah, those are the two things… Oh, gosh, that's so interesting. I actually think that was my, like, original burnout book. Hopefully, it's in the revision too of like I talk about… I mean, there's like the surface-level things to helping with burnout. But then there's what I call deep psychological work.
And the two that I highlight are internalized ableism and grieving, because until you address your internalized ableism, you're still going to be like, pushing yourself to reach those neurotypical standards. And then the same thing with until you grieve, and like, create space to move through the grief of whatever your limits are. There's going to be some resistance.
So, yeah, when it comes to burnout, yes, there is like, sensory soothing and rest. But there's also like, deep psychological shit that we have to do. Like, yeah, you and I have been talking about this for like a year and a half of like, and we laugh, right? Like, what an interesting psychological defense, we laugh about our over-commitment. But obviously, we're still doing it.
PATRICK CASALE: I think despite doing a lot of deep dives in my own therapy about all of this, and this identity, and this just lens that I see the world through now, and experience, and there's still a lot of grief work to be done. And despite feeling that grief very heavily, yeah, continue to push past these feelings of limitations and capacity.
And there's still a part of me that doesn't want to admit, like, that I have these limitations, that I have to honor them. And I mean, I don't think I've ever really said that publicly before, besides maybe to you without recording or other people that are close to me.
But I think that still exists very intensely, where I'm like, I don't want to feel limited. And despite knowing that I am, and I pay for it, though, by exceeding those limitations, and ultimately, destroying my physical, and mental health in the meantime.
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: Yeah. You know, what also has added to this is this throat issue that I have, and vocal limitations, and capacity being like, compounded. So, there's this, like, internal dialogue of why me that happens sometimes, which leads to anger, and frustration, and grief.
MEGAN NEFF: Yeah, yeah, yeah.
PATRICK CASALE: Yeah.
MEGAN NEFF: I think I have a parallel experience with the combo of long COVID and autism, especially, because like, I know where my early exposure came from, and I have like, a lot of feelings about that. And so the why me narrative and the, like, if I would have changed this one thing what would my life look like narrative?
PATRICK CASALE: Right.
MEGAN NEFF: There's a lot of ruminating loops that I try to avoid because they tend to not be very helpful.
PATRICK CASALE: Yeah.
MEGAN NEFF: Oh, I just took a monotropism quiz. Someone in my community shared it, which I thought was so cool. Like, apparently there's a screener for monotropism. And I took it. And some of the questions on there was, essentially, about rumination. And I never thought about that, that like ruminating is related to like having a monotropic brain that kind of, you know, focuses intensely on a few things.
And I hadn't made that connection before. And I was like, "Oh, yeah, that makes sense." That if you're really monotropic, you're going to be more prone to rumination, which negative rumination increases stress, isn't great for burnout.
PATRICK CASALE: This episode is a glimmer of hope and that's what we're trying to bring to the table [INDISCERNIBLE 00:37:29].
MEGAN NEFF: Okay, no, I did have… Okay, let me share one concept. I don't know, I feel like it's like a shiny concept in my brain. Maybe it won't feel like this. This was one of the things and the newest research I wanted to share was on strategic withdrawal. First of all, I just love that concept or that term strategic withdrawal.
So, you and I both know, like, we're in the mental health field, when a client or patient is showing a lot of withdrawal, that's typically a red flag for a lot of mental health things, right? So depression, people withdraw, because lack of pleasure, self-worth issues, just no more motivation to connect. And it tends to deepen the depression. PTSD, people withdraw, because they're avoiding trauma triggers. OCD, people withdraw from a lot of aspects of their life, again, avoiding OCD triggers. Anxiety, withdrawal is bad. And that's how we're trained to see it as mental health therapists.
What this article was suggesting is a lot of autistic people will use withdrawal, strategically, especially, as they're going into burnout, as a way to manage energy, as a way to manage social input. And that we shouldn't just be thinking of withdrawal as maladaptive, but there actually can be adaptive use of strategic withdrawal.
And I thought that was really cool. I liked how they conceptualized it. And that, to me, is another place where I think we need to increase awareness among mental health therapists of like, if you've got a client you're working with who's in burnout, and also depressed, and you're worried about their withdrawal, to realize like that might not be maladaptive, that actually could be a really important part of their recovery.
PATRICK CASALE: I agree 100%. And I use that strategic withdrawal a lot. And I've kind of reframed it, because I do think we have such a negative association as if like that's not something you should be doing. But I do that in simple ways where, like, for social demand purposes, right? I'll put my phone in a different room an entire day so I don't have to respond to things, I don't have to be social, I don't have to be connected.
I will, like, strategically cocoon or hibernate for a couple of days after events because I need to like, I think it's so useful to reframe it in that perspective of like, I'm doing this because this is what my system needs. Like, I'm not doing this for any sort of negative maladaptive coping strategies, just like this is actually going to help me in a couple of days, or a couple of weeks, or whatever the case may be, or even day-by-day. So, I think it's a great strategy.
MEGAN NEFF: I think it's great. And I think it's great language, because I think, if you start doing that people around our life who don't understand burnout or don't understand autism can understand, they get worried about us.
Like, oh, my gosh, I had a neighbor once who, like, loosely knew my parents, and after the birth of my second kid, and I was not sleeping, like, and I was recovering from a complex birth, and a C-section, like reached out to my parents who lived in the same town was like, "I think Megan Anna is having postpartum depression."
And I was a like, A, so tired, B, like definitely strategically withdrawn. But there's so many stories I've heard where autistic people or ADHDers will strategically withdraw, not have the language for it necessarily. And then people in their life will, like, get worried, and think they're supporting them by either in like calling for people to check in on them, or like, it just makes people around us anxious when we start withdrawing.
PATRICK CASALE: Yeah, yeah. Which probably, therefore, in turn, like leads to almost demand avoidance in a lot of ways from our perspectives if you have any of those traits. Like, I know if that was to happen to me, and my mom just started calling me, my stepmom, I'm not going to answer your phone. Like, that's just going to make me not want to answer the phone even more.
But yeah, I mean, people around us get worried if they don't truly understand, like, this is what this person is doing for this reason. Because, typically, in society when we see people withdrawing, we assume intense depression, suicidality. Some maybe some intense substance use going on and shame around it.
We don't think about like, this person's withdrawing because they've reached their limitations and they need to recharge, they need to get back to a place where they can ground again, and feel regulated, and feel like they can go back out into the world and kind of participate in it.
MEGAN NEFF: So, yeah, that's perhaps a good script. I think scripts can be helpful in burnout. Just because it's hard to form words, as well as like, I feel like the last, like, 10 episodes of our recording I'm a testament of that, if I were to form words. But like having a script of-
PATRICK CASALE: [CROSSTALK 00:42:31].
MEGAN NEFF: …like, thanks for checking in, I'm not suicidal. I'm doing some strategic withdrawal to replenish. Because I do think that that's the one that gets really dicey is when people are worried that the person is suicidal. And if you're not, to be able to have a script of saying, you know, thanks for checking in, here's what's happening.
PATRICK CASALE: [INDISCERNBLE 00:43:03] because then people start asking the question of like, "So, I'm worried about this person. Does anyone know how to do a wellness check? Do you call the police?"
MEGAN NEFF: And can you imagine the stress of navigating a wellness check well and burnout? And that does happen, right?
PATRICK CASALE: Yeah.
MEGAN NEFF: Like, that absolutely happens.
PATRICK CASALE: And that can be unbelievably dangerous, not just for BIPOC folks, but BIPOC autistic folks who maybe they're shutting down, maybe they're in autistic burnout, and someone's knocking at the door, and all of a sudden, like, you've got to come, and present, and answer questions, and be responsive, and, yeah.
MEGAN NEFF: Yeah, absolutely. And you're not going to be able to mask as well or at all. And I think, in those moments, if we're anxious, unmasked, stimming, if someone doesn't understand autism, like I could see how someone might be concerned around, like, psychosis or like this… I don't know.
But it could easily get misinterpreted to where it's like, oh, and this person needs X, Y, Z, when it's like that person needs strategic withdrawal.
PATRICK CASALE: Right.
MEGAN NEFF: And I do just, now, like, my checklist is going off in my head. Like, burnout can lead to suicidality. So, there are times that people do need that support. So, I just want to be clear, I'm talking about the times where someone's in burnout. They're not suicidal, they just need to be left alone.
PATRICK CASALE: Yeah, absolutely. Important distinction. But yeah, that's why this stuff is so nuanced, right? Because immediately, it's like, oh, I need to make sure I now say this to like, ensure that we understand that people can become suicidal, yeah. So, like-
MEGAN NEFF: This, oh go ahead. So, this is an idea-
PATRICK CASALE: No, I don't know [CROSSTALK 00:44:59]-
MEGAN NEFF: Well, this is an idea that I'm playing with, and I'd love to, like, pull more autistic people. So, we do know that burnout is a kind of pipeline… not necessarily pipeline, but like one pathway to suicidality. Something I'm curious about, I've definitely experienced this and I know others who have is not suicidality, but like a fantasy for non-existence, which is really like a fantasy for all demands to stop.
And I feel like if that is what's happening, that's my hypothesis that there's a different kind of non-existent fantasy that's different than suicidality that happens for a lot of autistic people in burnout. And if that's true, I feel like it'd be really helpful to have language for that, of like, yeah, my non-existence demand cease to exist fantasy is here. Because that is different than being suicidal.
PATRICK CASALE: Absolutely, I don't know. I'm so happy you named that. I feel that way all the time. Like, I've told my therapist that. I tell my friends that. I'm like, "I just don't want to exist." It's not about not wanting to be here or to commit suicide, I don't want to have to deal with any of the demands that come with A, B, C, D, E, F, G. Like, I just don't want to exist in that world.
I have this fantasy often of like, disappearing into the woods, and like into a cabin, or into a something where I don't have access to technology, I don't have access to communication, I don't have access to anything, and I don't have to be responsible, or responsive, or any of those things. And that definitely is a fantasy I have very, very often.
MEGAN NEFF: Yep, I have less of them now that my children are older. But definitely, when they were young, and the house was always overstimulated. I mean, I've shared this before. Like, I had fantasies of just like getting in the car and like moving to another country, and changing my identity. And obviously, not actually wanting to, but like, again, allowing ourselves to have these fantasies that are not value-consistent, but are telling us something important, right? Like, that fantasy was not consistent with my values. I would never have done it. But it was telling me something about the level of fatigue and overwhelm I was living in.
PATRICK CASALE: For sure, absolutely. Yeah, I would love if we can develop some language around that stuff so that people could share that more openly. Because I cannot imagine a world where you and I are the only two people who have had fantasies like this because life gets so overwhelming and so overstimulating that it feels like there is no answer or solution, disappearing from it all, yet booking the trip to Romania with your dad.
MEGAN NEFF: Maybe that's part of the same yes. Maybe it's like… and this comes more from psychoanalytic literature, but they'll talk about, like, the manic defense is a defense against depression. And we're not in that language. It's not specific to bipolar, just to clarify. But I wonder if our yesses is like a manic defense to our desires for non-existence and our fatigue.
PATRICK CASALE: It makes sense that it would be, because if we feel the fatigue, and that desire to kind of just mute everything out, basically, all the pretty often, it seems like it would be a defense against that saying, like, no, that's not what you're wired for as a human being. Like, you're wired for connection, and community, and all the things that come along with our genetics. And it's like, well, my neurodevelopment says, "No, I need this." Yet society is not necessarily created for people with our neuro types.
MEGAN NEFF: This is a depressing episode, Patrick. I feel [INDISCERNIBLE 00:49:15].
PATRICK CASALE: I actually think that depressing episodes are the most popular episodes, because they're real and they're raw. That's where we get, like, most of our response. We're not trying to depress all of you who are listening. It's just, I think this is reality. And we're just processing through it. So, we appreciate you listening to our takes on this.
I do like the very intentional, like, systematic withdrawal, though. Is that the term you used? I'm sorry if I [CROSSTALK 00:49:51]-
MEGAN NEFF: Strategic-
PATRICK CASALE: Strategic [CROSSTALK 00:49:53]-
MEGAN NEFF: Strategic withdrawal.
PATRICK CASALE: Strategic withdrawal. I think that's a strategy for sure. I also think having the insight into the yes versus no thing, like having the ability to have a check and balance system with a colleague, or a friend, or someone in your family, or a partner like.
Like Megan and I just agreed to check our impulses in terms of saying yes to things this year. So, if that is something you want more of or want support with, thinking about who can you have that conversation with, where you can just send a text, or you can just send a message where it's like, there's no other expectation or context surrounding that. I think that can be very helpful too, especially, for those of you who are ADHDers or ADHD autistic as well. Like, that push/pull is certainly very real.
So, it's hard to both coexist in the present and future tense in terms of how can I protect my energy and support myself? And I think that there are some strategies and they're certainly not as simplistic as just like, go take a hot bath and like, use a weighted blanket.
MEGAN NEFF: But those are great strategies.
PATRICK CASALE: Those are great strategies. And, you know [CROSSTALK 00:51:09]-
MEGAN NEFF: I do you love my weighted blanket.
PATRICK CASALE: Weighted blankets, weighted stuffed animals, all the things we've talked about before in burnout and are in both of Megan's workbooks. So, I think that there are things out there. And it's not like there's just no solution, but I think it's important to also discuss the side of things where it's like, this is pretty damn hard.
And I think when we talk about the things that are pretty damn hard, it allows people who are listening, and following, and subscribing to feel related. So, I don't know, I think about that way too. But heavy episode, I guess.
It'd be interesting to compare and contrast, like, episodes that we record in December in January, and [CROSSTALK 00:52:00]-
MEGAN NEFF: Oh, my gosh.
PATRICK CASALE: Versus like episodes in like June, July, August. I'm very interested to see what that looks like.
MEGAN NEFF: Wait, that would be really interesting. I kind of want to go back and do that. This last summer for me was like, messed up though, because I had a resurgence of COVID. So, last summer doesn't count for me. But, okay-
PATRICK CASALE: Clean slate of the year.
MEGAN NEFF: Yeah, let's pay attention to that this summer. I bet it's so different.
PATRICK CASALE: [CROSSTALK 00:52:32]-
MEGAN NEFF: Oh, it'd be interesting. What if we start talking about ADHD more? It'd be interesting.
PATRICK CASALE: I bet we probably would. If we start shifting our language to be like entrepreneurialship, ADHD, all the…
MEGAN NEFF: Let's start a new thing. Oh, my gosh, yeah, yeah.
PATRICK CASALE: Yeah. Okay, okay. Well, that would be an interesting experiment. So, are we done?
MEGAN NEFF: I think we're done, yeah. Well, okay, this last thought. I feel like that's part of our podcast is we're like these lab rats. And we just, like, do… I don't know if we do experiments on ourselves, but we treat it all like an experiment. Which is why, like, I'm not as comfortable with the expert podcasts. Like-
PATRICK CASALE: Yeah.
MEGAN NEFF: I want to be a lab rat and just reflect on that.
PATRICK CASALE: It works for us. And there are plenty of podcasts out there that have different themes-
MEGAN NEFF: That do awesome.
PATRICK CASALE: …for different minds, so, yeah, absolutely. Maybe one day we'll have the energy and we'll link a bunch of those too in our show notes, but today's not the day.
MEGAN NEFF: Okay, well…
PATRICK CASALE: All right.
MEGAN NEFF: I think we're done. I think we're there.
PATRICK CASALE: All right, everyone. Thanks for listening to the Divergent Conversations Podcast. New episodes are out on Fridays on all major platforms. Like, download, subscribe, and share. Goodbye.
MEGAN NEFF: As you may know from listening to our podcast, I've been working on a book, Self-Care for Autistic People. And I'm excited to announce it's out this month, both in physical form and as an audiobook.
As a celebration of its release, I'd like to share some excerpts from the audiobook edition with you our podcast listeners.
The book is designed as a book you can pick up for brief, easy, five-minute reads, with over 100 different entries that introduce you to practices for incorporating self-care. You can find the audiobook wherever audiobooks are sold available on March 19th.
Some studies have shown that autistic people are more prone toward using emotional avoidance as a coping response. And so, of course, I had to include an entry on the topic of emotional avoidance and how to move toward acceptance. Enjoy.
SPEAKER 1: I used to refer to my emotions as those pesky little things. I consider myself an emotion minimizer, which I used to chalk up to being a highly analytical and logically-oriented person. And while this is certainly a part of it, I have realized a negative or shadow side to my relationship with emotions.
In addition to being an emotion minimizer, I am also prone to emotional avoidance. And has taken an active effort to unlearn my ways.
Emotional avoidance is a common coping mechanism among many autistic people. When you suppress or avoid feelings due to fear or discomfort, you're unfortunately vulnerable to substance abuse, addiction, self-harm, and emotional numbing.
Additionally, emotional avoidance, heightened stress, anxiety, and disconnection from yourself and others, potentially, contributing to chronic pain or other physical complaints. Moreover, it impairs your problem-solving abilities and hampers effective resolution of underlying issues.
For autistic people, the inclination toward emotional avoidance is understandable. Many of us develop this in response to the too-muchness of the world, the overwhelming sensory experiences, and challenges we face in processing and expressing emotions. While emotional avoidance may provide temporary relief, it can have long-term detrimental effects on your mental health.
When you embrace emotional acceptance, you cultivate positive coping mechanisms to acknowledge and engage with your emotions. It means granting permission for emotions to run their natural course. Positive coping skills include any methods where you are actively processing and working through your emotions.
Here are some examples of positive coping. Journaling. Writing down your thoughts and feelings can be a powerful tool for emotional exploration and processing. Through journaling, you can gain insights into your emotions, identify patterns or triggers, and find clarity in your experiences.
Mindfulness. Mindfulness practices involve bringing your attention to the present moment with curiosity and non-judgment. Observing your thoughts and feelings without attaching to them or getting carried away can help you develop a more balanced and gentle relationship with your emotional experiences.
Therapy. Therapy allows you to work with a trained professional who can support you in exploring and processing your emotions. Therapists can help you develop coping strategies and gain insight into your emotions.
Emotional expression. Engaging in creative outlets such as art or music allows you to express and explore your emotions cathartically. Creating art or playing music can provide a sense of release and offer communication when words are difficult to find.
Emotional acceptance requires self-awareness and compassion. It involves recognizing that all emotions including discomfort provide valuable insights. By accepting and approaching your emotions with curiosity and kindness you cultivate resilience and self-awareness to navigate life's challenges.
