Episode 44: Sensory Shutdowns and Meltdowns: Navigating Neurodivergent Experiences
Mar 07, 2024
Show Notes
Sensory meltdowns and shutdowns can be deeply misunderstood and unsettling experiences, whether you've faced them personally or seen a loved one struggle.
For many Autistic individuals, dealing with overwhelming sensory stimuli is a recurring battle. The space between feeling in control and experiencing a complete sensory meltdown or shutdown can be alarmingly narrow, with profound impacts on personal well-being and relationships.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, share their insights and experiences with Autistic sensory meltdowns and shutdowns, including strategies and signs discussed through a clinical and personal lens.
Top 3 reasons to listen to the entire episode:
- Gain an understanding of what sensory meltdowns and shutdowns actually feel like, which Dr. Neff and Patrick describe through their vulnerable firsthand accounts, helping to break down the barriers of misunderstanding and stigma.
- Learn about practical coping mechanisms that can be employed during sensory meltdowns, such as intense physical activity, hot showers, and other grounding techniques, to help regain a sense of balance and control.
- Discover how to manage and anticipate shutdown triggers, through discussions on sensory self-care, proactive avoidance of overwhelming environments, and the utilization of sensory soothing tools, contributing to a more harmonious interaction with the world.
As you reflect on these discussions, try to recognize the bravery and resilience that comes with managing neurodivergent challenges. Be kind to yourself or your neurodivergent loved ones; embrace the coping strategies that work, and continue to learn and adapt.
Resources:
- Check out Dr. Neff’s new book, Self-Care for Autistic People. Learn more about the book: neurodivergentinsights.com/self-care-for-autistic-people
- To take advantage of the pre-order special: newsletter.neurodivergentinsights.com/self-care (available throughout the month of March 2024)
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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: So, Patrick, today, we're talking about sensory shutdown and meltdown. And first of all, you texted me last week. You were like, "We should do an episode on this."
And my first thought was like, "Oh my gosh, have we not done an episode on shutdown and meltdown yet?"
But I'm curious what prompted you? Like, was it after a shutdown that you were like, "Let's do a podcast on this."
PATRICK CASALE: You know that's how our lives work, is like we have these ideas, right? Because we've listed out a ton of topics when we first had the idea to launch this podcast. And then when we meet or the day that we're going to meet we text each other and we're like, "Hey, you want to talk about this?" And it could be completely different than what we were going to talk about.
And I think that's what makes this so fun. It's like the ability to just diverge and create.
But yeah, I think I was thinking about it, because we hadn't done it. We get a lot of DMs to our Instagram that ask, specifically, for an episode on this topic, strategies, tips, how it shows up, etc.
But I, typically, have a lot of shutdown moments in my life. So, it just was really kind of front and center.
MEGAN NEFF: Yeah. Well, and we were in the holiday season. And I think holiday season is a huge sensory shutdown meltdown territory. Yeah, absolutely.
Should we define shutdown and meltdown first? Okay, so yeah, people are probably a little bit more familiar with sensory meltdown. It's more talked about. And I like to link this to nervous system states, I find that helpful. When we're in that sensory meltdown, we're often in more of that fight/flight energy. And so it's pretty visible to the people around us. And so it's kind of like our brain is melting from all the sensory overload.
And then, like, I know, for me, like, I actually just had a sensory meltdown, which is, I haven't had one in yours, Patrick. But I had one last week.
PATRICK CASALE: What was going on?
MEGAN NEFF: Well, we got a new puppy, so I haven't been sleeping well. And then I forgot how overstimulating puppies are. And he has this really loud, high-pitched bark. We have another, have a niece who's three. And he doesn't bark very much.
And so I hadn't slept well. The puppy was being overstimulated. I was trying to, like, manage the puppy, but then upload something to WordPress, which is a platform I do not understand. And I use Squarespace for my website, but it's a partnership.
And I was really frustrated at myself that the person I'm collaborating with had done a walkthrough with me to show me how to upload this stuff, but it was like a month ago, and like nothing was working.
And you've seen my desktop. I was like trying to find the file and I couldn't even find the file. I was trying to upload. So, it was like this series of fatigue sensory overwhelm. I was having a really bad health day. And it was just like too much.
So, the way I describe it, like, I feel like I want to lash out, which is, again, very not normal for me. And at times, it's looked like lashing out at myself.
In adolescence, I think, I was having a lot of meltdowns, and that's what led to a lot of my self-harm. So, there's this, like, very kind of aggressive needing to lash out. And I see that as like needing to get the energy out is what it feels like.
So, I'm so not proud of this. But I'm going to say this because a lot of autistic people have a lot of shame around their meltdown. So, I'm going to be really transparent here.
In that moment, my husband was in the room. And I was like, "This was a terrible idea. I think we should give this puppy back."
I knew when I said it there's no way we're, like, rehoming this puppy. Like, that would crush the kids. Like, that doesn't feel ethical to me. And like, I knew it wasn't true. But I said it.
And I think what I was saying in that moment is like it's too much. And then I did. I was like, "It's too much, it's too much." And I started to cry.
And I went upstairs and I put the dogs in their crate, and they napped, and I napped. And then I was tired for the rest of the day. But it was better.
Yeah. So, like, I feel the cortisol when I'm in a meltdown. And I'm someone who, typically, has a lot of control over myself. And so these moments when it feels like I have less control are really disarming, they're really scary.
Yeah, so that would be a sensory meltdown. I realized I diverged from, like, explanation to personal experience.
Before I explain shutdown, do you want to add anything about meltdowns or your experience of them?
PATRICK CASALE: Yeah, one I wanted to say, like, one, thanks for naming that. I know that's an inside look into what was happening. And I know that was a lot.
It sounds like to me, like when you hit that moment, right? And this is just my own experience with any sort of sensory meltdown, when you said, "I want to give this dog back." Or whatever, you were just at your [INDISCERNIBLE 00:07:16]. You were just like, so overwhelmed, and so frustrated, and so worn down, and that was the old way to express those emotions that you were experiencing.
And then once you once you say it out loud, you're just kind of like, "Yeah, obviously, we're not going to do that. And I'm still really overwhelmed."
And I find for me, the best answer all the time is that quiet dark like, "I need to sleep, I need to lay down, I just need to be in a state where I can just, like, melt into the bed and not have to have any responsibilities."
And I will be honest, as I'm watching my two dogs circle each other for a treat, one of them is eating. One of them has created that sensation for me so many times because he's tiny. He has that like high pitch bark. He barks at everything. He is a lot.
And I have lived with my dad for about two months down in Florida, two years ago. I had brought both dogs. And my dad's house is not 100 square feet, two beds, one bathroom. It was hot, it's humid, it's Florida. Everything that could happen that led to like these sensory meltdowns was happening where our Shih Tzu's fur, it was getting like these sticky sapling things in his fur outside in my dad's yard. And I was having to, like, pull them out. And they were so many of them. And he was in pain.
And then I'm in my dad's house and the dog is barking at everything, whether it's the window, some noise, something that moved. And my dad is getting frustrated. And I'm like, "Okay, how do I handle this?"
And then I was like, scared to leave my dad's house, because I didn't want my dog to just be barking and my dad to have to deal with it. So, it was becoming a situation where I was literally having these sensory meltdowns on almost multiple times a day.
And it felt like I was at my wit's end. It felt like I'd really, like you've said, my cortisol is ramping up. I also consider myself someone who's pretty in control of how I experience my emotions a lot of the time or how I, at least, put them into the world. And I was just getting very short, very frustrated. Like, no longer could function, right? Even the littlest of tasks become the biggest of tasks and they become almost impossible, because my executive functioning is just out the window. It's just not existing. I'm like, "I can't even think straight right now."
And it becomes a situation where, like, I feel so shameful, and so defeated, and so overwhelmed, and I want to cry, I never cry. So, it probably would be helpful in those moments. And I just feel lost, like I don't know what to do.
And they do pass but in those moments they're really painful. And I can feel [CROSSTALK 00:10:01]-
MEGAN NEFF: Feel terrible.
PATRICK CASALE: …embarrassing.
MEGAN NEFF: Yeah, they're so painful. And they're so embarrassing. Like the other day, I felt like a child tantruming. And like, I'm a 39-year-old woman or human. I don't, like, think of myself as a woman. That's another story. A 39-year-old like human who like, yeah, it's so embarrassing.
And I hear that a lot from people, that that's one of the hardest things about a meltdown is afterwards, like, embarrassment and the shame.
And also, like, they can do a lot of relational damage, right? Like, I was talking about my dog, and I was able to circle back to my spouse, and be like, "I didn't actually mean that. I knew I didn't mean it, here's what was happening."
But like, there's scenarios where, you know, maybe that comment, "I want to get rid of this puppy." Maybe for some people it's, "I want to divorce." Or, "I want to…" Like, if it's coming out at another person, I think, in meltdowns we can say some really harmful things out of that. It's too much energy. And I think that gets really complicated.
And, again, we're acting very incongruent from our values in meltdowns for a lot of time. And so, naturally, we're going to experience a lot of shame in the aftermath of that.
PATRICK CASALE: And one thing you just mentioned that I think is important is when you said, "I'm a 39-year-old person, but I feel like a child."
But in those moments, there's a lot of inner child wounding happening. And there's a lot of inner child stuff going on where I think we can all think back to when we were kids, when we weren't attuned to, when we weren't tended to, when we weren't co-regulated with, when we weren't supported, when we [INDISCERNIBLE 00:11:51] unseen, whenever, and you act out, feel like I have to get my point across, I have to be able to express myself.
And as adults, we learn to keep that contained. Like, we regulate ourselves. We don't let those emotions come out in a way. And it's almost like this volcano, right? Like, it's like bubbling, bubbling, bubbling, also, a rupture. And then all of a sudden, can't think straight, can't see straight, may say things I may regret, like you said, and have significant damage in relationships, can come across in ways that you don't intend to.
And then you immediately go into that shame spiral of like, "What did I just do? What did I just say? How did I just react? That was so embarrassing of me. I didn't have control over myself." Like we all…
I mean, you know, we center so much on this podcast on autistic experience and autistic folks. We want to have control over ourselves and we like control. And when we are out of control, it feels like we are out of regulation. And like you said, congruency [INDISCERNIBLE 00:12:52].
MEGAN NEFF: So, okay, I like don't even want to go there, because I don't have an answer. But I want to name it as a tension. And this is not where I saw this podcast going. But okay, here's the tension I feel of this idea of like, we don't have control in a meltdown.
And that's actually been really helpful, also, in my parenting of understanding like, if one of my children has a meltdown, like, they're not trying to be hurtful, this is not something that they have a lot of control over.
And again, I'm not sure is it that we have no control, is it we don't have much control? Like, I don't know, categorically.
PATRICK CASALE: True.
MEGAN NEFF: There's this idea of, like, accountability. So, let's say we do have a meltdown. And we say something painful. And we also understand we had less control over what we were saying or doing. Or if we do something painful, like what does it look like to repair relationally after that? How much accountability should we be having for those moments? Like, these are things…
And then this is, again, something that when it's talked about, it's talked about with a lot of like harshness, and quietness, and shame. But like, you know, there's a lot of parents out there, specifically, who are wondering what do I do when my adolescent has a meltdown and they become aggressive, like toward a sibling or toward me? Like, this is really hard territory we're talking about.
PATRICK CASALE: Yeah, yeah, yeah. Very, very, very hard. From that perspective, like, what do I do if my loved one is becoming aggressive in public? What do I do? You know, and let's say, if I'm thinking about my nieces and nephews who are young black kids and so, what if that happens in public? There's so many safety risks there like jail.
Then, again, once… and I'll circle back to your mention of control, like is it no control? Is limited control? Are we just in a state where it's hard to access that ability to rein it in? I don't know.
But I know that there are often ruptures that need to be repaired. And when you mentioned accountability, that's huge, right? Like, if I was having a meltdown and I'm with my wife, I will often fall into that shame aspect. "I shouldn't have acted like that. I shouldn't have reacted like that." And it takes time for me to regulate, and ground, and sooth.
And I oftentimes will say to her, "Hey, this is what was happening. And I'm really sorry I reacted like that."
And she'll always say, "I know."
And I'm like, "Well, I guess thank you for understanding. But [INDISCERNIBLE 00:15:41] I still wanted me to take accountability over that."
So, it's just come up a lot with these experiences happening, having to really sit with, "Do I feel like I shouldn't be accountable to what just happened?" Sometimes it's external, right? Where it's like, "I'm not bringing this onto myself."
And that's where parenting piece, I can't speak to that, obviously. But like, I imagine that would be so unbelievably challenging and really difficult to figure out, what do I do in a situation if my adolescent is reacting in this way? How do I protect them? How do I protect myself? How do I protect their siblings, friends, etc.? It's really complicated.
MEGAN NEFF: Yeah, yeah, yeah. This is one of those areas that, like, I can think myself not sober really easily.
And, like, the go-to advice, right, is to do things that reduce the meltdown from happening in the first place, right? And just develop a sensory lens, which I talk about all the time, especially, for parents, it's like, okay, think through the sensory context of that, is there anything that could have been done differently?
It's interesting for me, I'm thinking back to that… Like it kind of it felt like that since I was a parent of young children. And for me, it's really tied to sleep deprivation plus like a sensory overwhelming environment. Like, the combination of that, that's like, I would say, pretty much the only times I have meltdowns. Otherwise, I have shutdowns. And I have so many shutdowns. So, it's like my default, which we will talk about.
But if I could go back, so there's this idea of like behavior chaining in therapy, where it's like, okay, after whether it's an emotional meltdown, or like a sensory meltdown, you go back, and you like, because in the moment it feels like things go from zero to 100. But actually, they're going a little bit slower. So, you dissect it second by second, at what point was there an exit ramp?
So, for me, if I go back to this last weekend, when I had a puppy that was yipping next to me, and I was trying to do something complex, technology, and with executive functioning, like at some point, if I could have accessed my narrator it would have been like, "Okay, you're not going to get this thing uploaded. I know you really want to because you want to get something off your to-do list today. Let's pivot or like let's ask your spouse to take the dog and you can go focus."
But like, looking back, I can see, like, okay, there was an exit ramp there that I didn't take. And I know it would have been harder for me to take, because I was not in a great space.
But that sort of reflection for me has been really helpful to like, dissect the experience, and to identify what were the exit ramps I could have taken. Because in doing that, it means I'm more likely next time to see the exit ramp, to be like, "Oh, this is not working. I need to take this exit ramp."
PATRICK CASALE: Yeah, yeah, absolutely. I like that strategy. Because those exit ramps kind of reframe the control piece that we've just talked about. Like, do I have control if there are exit ramps available that we can become more aware of, then there is more of a likelihood that you have control to make that decision to step away, to remove yourself, to ask for support et cetera? So, I think that's a really great exercise.
MEGAN NEFF: Ooh, and now let's overlay it with attachment theory. I just had this thought. Okay, so let's say you're partnered. And let's say you're with a partner who has more anxious attachment. Conflict can be like just the emotions of that. That can be really sensory overwhelming. So, I could imagine there's a point in conflict where the autistic person needs an exit ramp if they're not going to have a sensory meltdown.
And I would say a sensory meltdown in middle of conflict is a really bad idea. Like, you're going to say painful, hurtful things that you will later feel terrible about and that you probably don't mean.
But the anxiously attached partner might have a really hard time letting the autistic person take that exit ramp. And so, like, again, having like a pregame… I don't know why I'm doing weird metaphors today, a pregame like plan of when I hit my limit, I need to take space away. And that, like, I need a word I can say that you know that I'm coming back, but I have to take a step away. Because I think, yeah, that's one dynamic I could see getting really tricky.
PATRICK CASALE: Yeah, absolutely. Thanks. That's a great point. So, having that code word, or phrase, or just having a conversation that's like a blueprint of, if this is what's happening, here is an internal glimpse into my reality.
I always find that can be useful to say like, this is what's happening. It has nothing to do with you. And it's a way so I can circle back, so we can have a conversation that doesn't, you know, rupture, that doesn't need to be repaired.
Easier said than done. But sort of a thing that can be done. I'm thinking of a specific sensory meltdown experience and we just did an episode on reflecting on the new year. Last year, right after throat surgery in New Orleans, first retreat of the year, January. So, two months after throat surgery, definitely not ready to be working in that capacity by any means.
I just remember being in the kitchen with 25 other people, no one's doing anything wrong. Everyone's talking, socializing, et cetera. My executive functioning really starts to diminish, my sensory system really starts to struggle, everything becomes amplified.
So, someone opening a refrigerator, the lights become brighter, noises become louder, all of a sudden I'm like, "Holy shit, what is happening?"
And all of a sudden I had to literally remove myself, go outside, scream at the top of my lungs, in the midst of fucking New Orleans. People were probably like, "What the hell?" Well, it was New Orleans, so that probably was not uncommon, release it.
So, I felt so embarrassed because I'm like, "I'm an adult, human being, like, hosting this event." And I just had to do that to regulate myself to be able to be a part of this event. It was very challenging, unless you don't want to diverge too much. But these things can really take over and they can be really destructive. And they can be really damaging internally. The shame spiral is really, really hard when that comes over you.
MEGAN NEFF: So hard, so hard. Yeah, absolutely. Oh my gosh, first of all, being in the kitchen with 25 people. Like, I could never. So, yeah, that would be so hard to be like I am like in charge of all of these people, making sure they have a good experience, and then I've got to go like, release this energy through like, okay, human yell. Like, oh, my gosh, Patrick, that sounds so painful.
PATRICK CASALE: Yeah, that was not fun. So, that was a good moment to reflect on. But again, like you said, exit ramps, being able to remove myself, and knowing that I needed to remove myself. And not just enduring, and not just sitting there and being like you're going to white knuckle, you're going power through this, because that's not how that works. And-
MEGAN NEFF: It's not. It needs to be released. I love your word, release. It needs to be burned off. There's tons of cortisol going through your body, you've got to release it.
And that's another, like, plan ahead thing, having what are healthy or helpful ways I can release this? So, again, like I talked about in adolescence, for me, it looked like self-harm. And for a lot of autistic people it looks like self harm. And that makes sense to me.
So, having, especially, if that's something that you're struggling with, a listener, like kind of having a toolkit ready to go of alternative ways of releasing, punching bags, or yelling.
I don't know. Yeah, what are some other, like, vigorous walks, although, that's hard, because sometimes depending on where you're walking is also a sensory overwhelming place, but like physical movement, like intense physical movement. Besides yelling, what are other ways that you found to release the meltdown energy?
PATRICK CASALE: So, if I got a soccer ball into my backyard and start kicking the soccer ball as hard as I could against the fence, if I did jumping jacks in my living room, or like something that really got my heart rate up pretty quickly, that helps a lot, as well, because you're kind of getting some of that cortisol out, you're getting some of that adrenaline out, the endorphins start going, where it starts to kind of like regulate your system a bit.
This is an unpopular opinion with some people, I don't know why but I love rage rooms. Like, I love them so much. There's one that just opened near me. I go like once a month and I break shit. And it is unbelievably cathartic.
So, I think hot showers, those can be helpful for me. So, if I like stepped into like a scalding hot shower, put my hands against the wall, and like push against the wall, that can really help ground.
If my dogs are not acting… are not cause of said meltdown, you know spending time with them, taking them on a walk, and just like you said, walking kind of like with pace, and intensity can be really helpful, too.
MEGAN NEFF: Yeah, yeah. I love those. I love those. Yeah, hot showers for me too. That's kind of my go-to is like a really hot shower. Back when my body would let me, like, intense like weightlifting workout sessions with like, loud music in my ears, yeah, intensity, right? Like, getting the body to match. Like, if the intensity matches what we're feeling, I think that can help release, yeah.
It's interesting, I thought we'd end up talking about shutdowns walks. I know where both of us have a default toward shutdowns. But I do think meltdowns, there's like a specific shame around it. There's a danger to it. So, it actually makes sense that we've ended up lingering more on meltdowns.
PATRICK CASALE: Yeah, for sure. One place I find myself with emotional bounds is like someone trying to explain how to do something and I can't figure out [CROSSTALK 00:26:20]-
MEGAN NEFF: Oh my gosh.
PATRICK CASALE: And I'm like, they're explaining it as if it's like the easiest thing in the world. They show you the diagram, they show you like a live demonstration. They ask you to repeat it or you try to repeat it, you can't internally just beat the shit out of yourself. And immediately shutdown and meltdown emotionally.
MEGAN NEFF: I'm so glad you said that, because that is the other place I'll get meltdowns. And it is interesting, I'll be more likely to meltdown than shutdown. And it's kind of like a cognitive overload if someone's explaining something to me and it feels like it should be simple, but it is not simple to me. And I'm not tracking and it's frustrating.
And I think there's something about, like, you're not getting me, you're not getting my frustration that then like ramps it up.
But yeah, that's another place where I will have more… I wouldn't say a full meltdown, but I'll get, like, in my stress in a way that is unique to me when I'm trying to follow directions and they're not making sense, which is like pretty common for me, actually.
PATRICK CASALE: Pretty common for me too. My spatial awareness or intelligence and ability to follow a diagram, ability to put something together is non-existent. And I get so unbelievably upset.
And I think what you just named is exactly it, especially, if someone else is involved. It's like, you're not seeing how hard this is for me. And by no fault of their own most of the time it's just like, "You don't see it. You're not understanding how challenging this is. And that it's creating the shame dynamic or component, then it is then creating a meltdown." So, don't ever ask me to go to Ikea. I will meltdown and I [CROSSTALK 00:28:03]-
MEGAN NEFF: I literally was just thinking that. I was like, "You probably don't like Ikea furniture."
PATRICK CASALE: Heck, no. Oh, God, yeah. Okay, let's go to, so-
MEGAN NEFF: Okay, shutdowns. So, if meltdowns are like that cortisol fight/flight, shutdowns are one where in that kind of dorsal shutdown, not necessarily a fawn/freeze state, but like that freeze mode of the nervous system.
The first time I heard this was Finn Grattons book, they talk about faux regulation. And this idea, this is part of what is so kind of disorienting about a shutdown is that to other people you might look really calm. But your cortisol is still through the roof, your stress response is still very active, you still have to release that energy. But you can look calm to the outside observer.
And there's been a few, like, interesting studies out there. But one suggests that autistic people are not necessarily more likely to shut down than to meltdown but more likely than like allistic people to respond to stress that way.
And so where people around them might have no idea they're stressed, but actually they're in a stress state in their nervous system.
For people who mask a lot, they tend to be more prone to shutdowns, because again, if you think about masking, it's about, like, internalizing, taking in, hiding. And so they tend to cope with more shutdowns, which again, is one of the reasons their autism often goes undetected because they're navigating the world through like a disassociated fog.
Yeah, so and when I'm in shutdown I feel dissociated, I feel like I'm in a dream, things feel slower. Yeah, what about you?
PATRICK CASALE: Yeah, the exact same. I think I feel that way if I had to conservatively guess like 80% of the time in my existence. So, I'd feel like you're… and you're kind of like holding it all together if you're masking and like for the outside world, right?
So, whatever situation you may be in, it may be an unbelievable amount of energy and effort going on behind the scenes, which is then, again, why people are so depleted and exhausted in social situations and professional situations, etc., in high sensory environments. So, that's kind of what it is for me too.
And I feel like my default coping mechanism is escapism, which is, typically, immersing myself in like, the same TV shows over and over again. I know I like the same movies that I've watched over and over and over again, where I can basically be vacant, and not have to be attuned to the world around me. And that's kind of the only way I've found to recharge through this is like that type of experience.
MEGAN NEFF: You're saying that's what helps you come out of a shutdown is repetitive?
PATRICK CASALE: Yeah.
MEGAN NEFF: Yeah, yeah. I like the imagery of kind of melting out of a shutdown. Oh, that's weird, because there's meltdowns, that maybe doesn't work. But it's like a slow, right? So, if in a meltdown you need to, like, kind of aggressively release energy, you almost need to like warm up a shutdown with a slow… Yeah, I want to use the word melt [CROSSTALK 00:31:33]-
PATRICK CASALE: It's like a coffee percolation. You know, it's like, just slowly brewing or come back to, I think, instead of releasing all of that as much as you can or as intensely as you can.
MEGAN NEFF: Yeah, exactly. It's more, like, gentle. It's really important to be gentle with the process, yeah.
PATRICK CASALE: Yeah, yeah. And, again, if we're going to circle back to attachment stuff, [INDISCERNIBLE 00:31:58] driving me fucking crazy.
I think, in any sort of attuned healthy attachment, secure attachment place, if you have a partner involved, and you're in that place where you are doing what you need to do to kind of come back from that shutdown, that acknowledgement without having to have that response or that responsibility.
And what I mean by that is, if my wife walks into the house, windows are shut, and it's dark, which it often is. And she's like, "Oh, you're watching Lord of the Rings." Or, "You're watching Game of Thrones. I'm not going to talk to you until you talk to me." That has been really helpful for me, because then it feels like I don't have to exist anywhere except in this state here. And I don't have to take on anything else, because I don't think I'll [INDISCERNIBLE 00:32:48] or able to take on anything else right now.
MEGAN NEFF: I love that. I like her so much. She knows you so well. And I'm not going to put any sensory demands on you or like unexpected social demands. Yeah, yeah.
PATRICK CASALE: It's really helped. Oh, let's talk about all the sensory stuff that can lead to a shutdown, intense smells, the auditory, not the auditory, what's the word?
MEGAN NEFF: Olfactory?
PATRICK CASALE: Olfactory sense. Like, that, for me, is the most challenging of all the senses aside from tactile-only temperature.
So, if she's cooking, she'll take the air fryer, if she's using the air fryer outside on the porch instead of cooking in the house, because that smell will literally make me shut down to the point where I'm not able to be present anymore, because all I can focus on is how uncomfortable I am with that smell. And it's really challenging to get away from.
And I'll smell it on everything. I'll smell it on like my coat, I'll smell it on my sweatshirt, on the back of the door. I'll smell it like on my blanket, in my bed, and I'm like, "I cannot exist right now."
MEGAN NEFF: That's so interesting. I haven't thought about, like, mapping senses to shutdown or meltdown. But that'd be an interesting thought experiment. Like, for me smells are terrible and I'll get headaches, and I'll feel nauseated. I'll probably kind of get more anxious. For me that those won't be a shutdown trigger.
For me bodies, like just being in a room with… So, like, when you said you were in a kitchen with 25 people, I would be shutdown from the start. Like, if I'm in a room of more than, I would say four people, then my body's in shutdown mode.
And sounds. Sounds will shut me down so fast. Sounds and bodies would be my two, like, huge shutdown triggers.
PATRICK CASALE: Bodies are hard for me. It's a weird phrase to say.
MEGAN NEFF: Bodies are hard.
PATRICK CASALE: Bodies are hard, because of the work that I do, especially, these events. So, like, I'd have to now mentally, and I agree with you 100% on a shutdown mode 90% of the time in those I am like, because I'm doing four to five a year, I'm like having to anticipate sensory shutdown, knowing that when I host the next event, which is in two weeks here in Asheville, there's 27 people coming. 27 people are going to be in one room, in one space a lot. [INDISCERNIBLE 00:35:21].
MEGAN NEFF: That sounds like so gross to me. Like, I'm like [CROSSTALK 00:35:26]-
PATRICK CASALE: The face you made was… You made the face of like. Yeah, anyway-
MEGAN NEFF: Disgust?
PATRICK CASALE: Yeah, disgust-
MEGAN NEFF: That it would disgust, yeah.
PATRICK CASALE: …that's the word [CROSSTALK 00:35:43]-
MEGAN NEFF: I think that's what I felt, disgust.
PATRICK CASALE: Yeah. You were like… But yeah, so having to mentally prepare and anticipate to be in that environment, to absorb that energy knowing that I'm going to have to disassociate for the majority of the time.
And we just did an episode on substances, and alcohol, and gambling. That's where, I'm not proud to say it, but that is where I will often reach for alcohol is because I'm going to know that I'm going to be immersed in a state where my body, it can't be present, it cannot exist in that room. So, it's really hard.
MEGAN NEFF: That's also when I would drink the most was because shutdowns, they're uncomfortable. And alcohol has a way of numbing, but then it's like, it's a more pleasant numbing. And so that was absolutely an alcohol trigger for me was like, I'm not in my body.
And it is going back to control, right? Like, if I'm not in my body because I'm tipsy, because I'm choosing alcohol versus because I'm shutdown and this is out of my, yeah, that was probably one of the biggest alcohol triggers for me was shutdowns.
PATRICK CASALE: For sure. I agree. And I think it comes down to like, if you're constantly in that shutdown space, right? Or you're not in your body and you're dissociated, and you're really struggling to be, it's really hard to be still, it's hard to be like, even I'm sitting on the couch watching something, and I'm in that mode, and I'm like so uncomfortable within myself, then it's so hard to just exist.
MEGAN NEFF: Yeah. Well, similar to meltdowns, I'm curious what you do, like the more helpful things you do to get out of a shutdown. Like, for me, I've noticed, this is really interesting, Patrick, I have never been able to, I cannot talk about dissociation without dissociating. Like, just the topic of it will actually… so I've actually been much more shutdown since we've switched the topic. So, I noticed a few minutes ago, I started gently like swaying back and forth and now I'm swiveling in my chair.
And that's one thing talking about that, like, kind of slow warm up, I'll start kind of gentle rocking or swaying as a way to kind of, it helps me from getting like too deep in the shutdown, I think. That's one of the things I do to help regulate.
Hot showers. Hot showers are just… they work for everything.
PATRICK CASALE: [CROSSTALK 00:38:07]-
MEGAN NEFF: Except pots. That kind of sucks about pots is then hot showers can… actually other things. But yeah, hot showers. That's been a big one.
I will do walks more when I'm shutdown because the grounding of the movement. And so that's, actually, when I'm more likely to walk, when I'm trying to, like, move through a shutdown.
Music. That's when I'll do stim. I'll put on like a stim song. I have this beanbag chairs called like the zero gravity. It's a ridiculously expensive beanbag chair, but it's amazing. It like, supposedly, like mimics zero gravity. So, I'll lay in it. I'll put a weighted blanket on me and I'll put my stim song on.
So, pressure weight repetition. Yeah, repetition. That's what you said too. But those are the things I'll go to after a shutdown.
PATRICK CASALE: And I think a big differentiation here, right? Comparatively to meltdowns is the intensity. It is like you're not looking for the intensity, you're not looking to get the intensity out. It's about soothing. It's about sensory soothing. It's about like slow and gentle, like, introduction.
And I agree with walking. And it's just kind of like getting back into your body. Like, just noticing the weight on your feet, just noticing the way that your feet feel against the ground. Like, just noticing the temperature that it is outside.
I'm petting my dog with my left arm, by the way, so like that is also one of those things where like so just, you know, petting your animal or hugging your animal. So, that helps me, hot showers. Yeah, that's my go-to for almost everything regardless what mood I'm in.
I'd say also just, yeah, repetition. I have like a weighted sloth stuffed animal thing that my friend Terry got me so I'll use that. I needed [CROSSTALK 00:40:12]-
MEGAN NEFF: Is it a warmy?
PATRICK CASALE: I don't know. I don't think it is. [CROSSTALK 00:40:16]-
MEGAN NEFF: I just got a warmy. So, it's like a weighted stuffy, but you can also put it in the microwave?
PATRICK CASALE: I don't know, but it's not.
MEGAN NEFF: Okay, so I just found these. These I think would be great. Yeah, especially, for meltdown recovery, or a maze, or yeah, stuffed like just weight. But I love that you have a stuffed sloth, that's perfect.
PATRICK CASALE: Didn't want to buy it. I sent it to her, and was like, "I want to buy this, and as a therapist, I should. But I'm an adult man. Like, I don't want this stuffed animal sloth." All of a sudden it shows up in my house a week later. And I'm like, "Did you finally-
MEGAN NEFF: So sweet.
PATRICK CASALE: …buy this for me." And she was like, "Yeah, you need it, and you should have it." So, inner child re-parenting is so helpful for some of this stuff.
But yeah, I think these are good strategies. These are all the ones that I do. I can't think of anything that I'm doing differently.
I do think just vocalizing it sometimes if you can, too. If you have a partner at home, or a friend, or a roommate, or whoever just making it known like this is the space that I'm in can be helpful. Because again, having that person reciprocate with, "I'm just not going to talk to you for an hour. And I just like not expect of you for an hour." Can be really freeing and helpful to you. So…
MEGAN NEFF: Oh, for sure. For sure. Yeah, the other thing I'm thinking of is, for me, I know, like, loops are… that you can put them in your ear, they're pretty discreet, and they take sound down by like 15 decimals.
Whenever I'm going into a group context, I typically wear loops, and I know that my threshold is a lot, like I have a much larger capacity before I shut down. And so that's been one accommodation that's been helpful for me, is like using sensory blockers.
And that's why I'm really intrigued with your idea of like smell as a trigger for shutdown. Like, I don't know if there's any science to that, but I'd be so intrigued about it. And an exercise of mapping your sensory triggers to, like, if one is more likely to flip different states. And so if you know you're, like, going to go into a noisy environment or a bright environment, thinking through like what accommodations ahead of time will expand your capacity.
PATRICK CASALE: And this is where, like, good tactile sensory and fidget toys come into play, too. And I know so many people have similar responses. Like, "I'm an adult, I'm not going to bring a fidget toy out in public."
I challenge you to think differently about that. Like, if you can put a rock in your pocket, or something with a different texture, or edge that you can just touch or something small that can just be playing with can really be helpful, too.
And I have those things all over the place, like constantly going from one to the other place, like texture, and temperature, and other things. So…
MEGAN NEFF: It's just occurred to me, like, how much sensory regulation you and I have both been using throughout this whole conversation that's not going to be visible to most people.
Like, I have a weighted blanket on my lap. I have a swivel chair. I have a, like, puffy thing with a lot of texture that my feet are on and I keep like grabbing on to it for texture. I have a puppet. You have a dog next to you that you're petting. You've had fidgets. Like, there's so many sensory things that we've been doing this whole hour. It's just interesting to realize that, think on that.
PATRICK CASALE: It's been kind of strange to reflect on that saying like, now I understand the things that I need for accommodation versus three, four-ish years of not knowing or not having good awareness, and not doing these things, and how much more challenging [INDISCERNIBLE 00:44:00].
One thing I'll say with everything we're talking about, because a lot of you have DMed me about this, because you know, I travel a lot, how do you navigate this while traveling? And it's very, very challenging.
And I just want to be transparent. And that's where I would bring the weighted blanket with you in your backpack, or your bag, or [INDISCERNIBLE 00:44:17], or the weighed stuffed animal, or the fidget toys, because if you want to talk about sensory hell, the airport and the airplane is kind of the epitome because it's, you know, the odors, the sounds, the smells, the bodies. Like, it's a lot.
So, I actually witnessed my dad have a major meltdown in the middle of the Madrid airport, because he didn't know he was autistic at the time until I told him. Like, I told you about the story.
But he lost his wallet on the plane. And it was Brighton as we got to Spain. And literally meltdown in the airport. Like, hitting himself in the head and calling himself stupid. And all the things.
I had to, like, help him soothe, and ground, and regulate. And those environments can feel really overwhelming for people, because when we talk about control, talk about a complete lack of control when stuff like that happens to you unexpectedly in environments that are in the public, so really, really hard to experience.
MEGAN NEFF: Absolutely.
PATRICK CASALE: Why did I just diverge there? I don't know. All I know is-
MEGAN NEFF: Me too. I mean, sensory, shutdowns, meltdowns. Like, it's all fair game.
PATRICK CASALE: Yeah. So, you know, that was my little, like, [PH 00:45:39] insurance way to be like, "Hey, here are things you can do to support your sensory system. This is why these things keep happening to you in these types of environments." Like, think of more education we can provide to you, and the more resources we can provide, the better.
MEGAN NEFF: Totally, I kind of feel like a broken record at this point, because I feel like I talk about sensory regulation all the time. But in this, so Self-care for Autistic People is Releasing in March, which it will be shortly around this time that is released.
PATRICK CASALE: Yeah, we could [INDISCERNIBLE 00:46:00].
MEGAN NEFF: Yeah. So, the structure of the book is like 100 tips, self-care tips. But with the editor and the publisher, I was like, "Okay, but we need, like a more robust chapter on sensory self-care, because this is the bedrock of self-care for autistic people. And this is often what gets missed."
So, the first chapter is all on sensory self-care. And honestly, I was so limited in my words. I wish I could have said so much more. But the important part, I'm not trying to plug the book. Because it feels like it, sounds I am.
What I'm trying to say is in my brain process I was like, "We have to start talking… like any conversation on self-care has to start with the sensory." Because if we start talking about these other, like, higher level things, and we're trying to put that on top of a dysregulated sensory system, like it's not going to stick, it's not going to do anything.
PATRICK CASALE: Yeah, it's like throwing gasoline on fire. So, and plug your book. I mean, hell this is [CROSSTALK 00:47:14]-
MEGAN NEFF: I haven't thought about that stuff, Patrick? [CROSSTALK 00:47:17]-
PATRICK CASALE: I know, I know, I know. You worked really hard on it. That one's going to help a lot of people. So, that book will be on the links of this episode, because it's going to come out around that time. Make sure you get it.
But I agree, it's the foundation. And if you don't have the foundation taken care of or at least attended to, and have the awareness around it, it becomes so much more challenging, because then it becomes a situation where either you, your therapist, your friends, your colleagues, your doctor, whoever is like, "Have you tried this? Have you tried this? Have you tried this?" And you're like, "I'm so dysregulated that I can't try any of that."
So, I'm really glad you named that and hope it may lead to a part two of the book that you're creating.
MEGAN NEFF: That's actually in the works.
PATRICK CASALE: I know you too well.
MEGAN NEFF: You do, you do. Yeah. No, sensory self-care, yeah, I think that is just such an important part of wellness for us and for ADHDers, too. You know, like, I know we often focus on the autistic but ADHDers often have a lot of sensory stuff going on as well.
PATRICK CASALE: Totally.
MEGAN NEFF: Yeah. Feel like we're in the wrap-up zone.
PATRICK CASALE: Yeah, I think so. I think we're in sync today. It's weird when I haven't seen you in weeks. But I think this episode was great. And I'm glad we had it. Because I think we could have [INDISCERNIBLE 00:48:45] honestly, like, such an important topic, sensory systems, in general, and all the ways that thing show up. So, yeah, I think we're done. I think my voice is going out, too, which I'm noticing. So, I think we're really done.
And to everyone listening, new episodes are out every Friday on all major platforms and YouTube. Buy Megan's book. It's going to help you quite a bit. And what is it called? Self-Care for Autistics by Dr. Megan Anna.
MEGAN NEFF: Self-Care for Autistic People.
PATRICK CASALE: Perfect. And we will link that when it's available, because you've worked really hard on it and it deserves to be celebrated. All right, everyone. Megan's going to feel awkward now.
MEGAN NEFF: I am.
PATRICK CASALE: [CROSSTALK 00:49:27] grossed out expression of me being [CROSSTALK 00:29:30] human beings.
MEGAN NEFF: I am going to say this though, because like, it is a promo, but like it's so relevant for this and it can help people.
For my people in my newsletter, but I'll extend it for my podcast, I'm doing a special promotion where if you preorder the book, you'll get a free Neurodivergent Insights workbook and I have a workbook on sensory regulation. So, if you're like resonating with this and if you want to go buy Self-Care for Autistic People, you do that so that you get the sensory regulation book for free or any other workbook.
So, basically, you'll get a coupon code to download that for free if you preorder Self-Care. And I can put details on that promotion in the notes.
PATRICK CASALE: Sounds good. All right everyone. We will talk to you in some way in the next week. So, thanks for listening. I hope this was helpful. And 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 audio books are sold, available on March 19th, enjoy.
SPEAKER 1: Whether you mask or not, it's important to learn how to take care of yourself in ways that actually reward and nourish your brain instead of using self-care ideas that are created from a neurotypical lens. That's why the tips, ideas, and information in Self-Care for Autistic People are tailored, specifically, to address sensory, emotional, relational, and professional challenges, so you can feel more aligned with who you are and build a grounded and expansive life.
Self-Care for Autistic People includes information on how to work with your sensory and nervous systems, find practices to help you self-advocate, and discover ways to limit burnout. Starting a self-care practice may seem overwhelming. So, take your time and focus on the chapters that resonate with you. You can also start by implementing a few practices at a time.
MEGAN NEFF: And now here's another excerpt from the audiobook edition of Self-Care for Autistic People that touches on one of my favorite subjects, sensory detox.
SPEAKER 1: When I worked in hospitals and universities, I would invariably return home each night, shrouded in palpable fatigue, and plagued by a persistent low-grade fever. It was a puzzling malaise that seemed to persist without a discernible cause. My revelation came when I realized I was experiencing sensory overload to such a degree that my body was interpreting it as a physical illness.
My autistic child and I now refer to these as sensory sick moments, when we feel the wear and tear of a high sensory day.
Once the onset of sensory sickness begins to creep in, I know it's time to initiate my sensory detox routine, a series of calming and restorative activities designed to rebalance my sensory system. This might involve taking a hot shower to cleanse and refresh, changing into my most comfortable clothes, or sinking into a beanbag chair cloaked in a weighted blanket while indulging in the rhythm of my favorite stim song. I might also turn to my trusty TENS unit for relief.
TENS unit's short for transcutaneous electrical nerve stimulation units are these handy devices that provide many electrical zaps or pulses. While they are predominantly used for pain, they also work to provide repetitive sensory input.
When I engage in these rituals, I can feel the harsh sensory residue of the day gradually dissolve. Your sensory detox will be as unique as your sensory profile. While I find solace and stillness in weighted comfort, you might prefer an energetic walker music.
Explore and identify what suits you then curate your sensory detox ritual, a haven for those intense high sensory days when sensory sickness looms.
