TERMINUS INDUSTRIES X CONFESSIONS OF THE CAFFEINATED:
~ ~ ~
Johannes: Greetings, all. Switching the focus today, and rightly so, from Transformers (as awesome as they are), to transformation (ongoing)...in my own weird, convoluted sort of way!
Leanna: Yes! So glad we’re doing this! I think I can safely say that every time we’ve collaborated on pieces like this, we both benefit. Opening the conversation, and keeping it open, around mental health (and emotional health) is so important. We are reminded of “where we’ve been”, “what we’ve already overcome”, and how different and similar we are. And, equally important, sharing conversations like these allows for others to connect and open up as well.
J: Exactly. I absolutely wish I’d had access to things like this when I was younger and struggling to make sense of what I was experiencing. Even now, being on the creator side of things, I still look for others’ experiences to help guide mine.
L: There’s something very healing about being able to take our experiential learning, and share it in a way that others can benefit from. It gives meaning to the struggle in a way, I think. And it can really bring home the lessons we’ve learned. That idea of “teaching” someone else, and being taught by how they receive it.
J: Yeah. Especially when it comes to mental and emotional health. Those aren’t topics that you can just read up on and magically be healed or made whole or...whatever...they’re more organic and layered. Shades of gray and all that. There are creators out there who make absolutely relatable content, but I want to be able to give my own take on things, my own experiences. With that in mind, I think the real learning happens when you connect to someone else’s similar experience or similar reaction to stimuli...and realize you aren’t alone – realize what you went through wasn’t some one-off thing...
L: And on that note, what’s the topic for today?
J: I thought we could talk about Autistic Burnout. Both in the more medical sense, and in the general experience a lot of us have.
L: Got it. This one’s definitely in your wheelhouse, buddy!
J: Yeah, I’m definitely familiar with the feeling.
L: Feeling is a great word choice here. Autistic Burnout, in my limited understanding of the experience, is both the overwhelm of too much feeling and the vacuum of enforced lack of feeling. A complete split from the sensory world that we live and move in.
J: To put it plainly, too much sensitivity leads to insensitivity. So, yeah. Too much feeling leads to no ability to feel. Back during my senior year of high school, I was overwhelmed to that point. Looking back, I’m still amazed at the fact that I managed to keep my grades up.
L: I’m so proud of you, as you know. But, I think it’s only fair to point out here that your high school experience, while recent and therefore familiar to you, is really only the tip of the iceberg here. You’ve sort of balanced on the precipice of burnout in recent years, but definitely fell all the way countless times in your younger years. Which, in hindsight, makes a lot of sense given how many demands you were placing on yourself.
J: I guess I’m a bit hesitant when sharing, but a lot of that comes from having to emotionally cordon myself off, thanks to frequent bullying in earlier years.
L: I get it. I do. And maybe that’s part of why I’m here to help steer the conversation...control that ebb and flow. Someone, somewhere, may just read this and need it. Someone, somewhere, may be where you were then...or parenting a child who is experiencing the same. Bullying is never ok. I don’t want to ever suggest that your having been bullied, as relentlessly and ruthlessly as you were, was supposed to happen or a ‘learning experience’. It wasn’t. It was disgusting and vicious and vile, and completely not ok. Not OK! But it happened. And you made it through. And you developed coping strategies that can help others. It’s a testament to who you are as a person, that you can take the worst of others and create something to help someone.
J: Part of my hope for the future in regards to that, is that nobody should have to go through it. It’s not just “kids being kids.” That harassment, that cruelty, it just ruins those it touches. There’s no possible excuse.
L: Agreed. And we could go down the rabbit hole here for days, discussing this. But let’s try to stay on track. The bullying contributed to your overwhelm, for sure. But it also prevented you from seeking assistance when you needed it.
J: It definitely did. I learned quickly to mask my discomfort and my pain,and did my best not to draw attention. While I desperately wanted the adults in my life to see that I needed help, I didn’t dare ask for it or expose myself. Listen, the reality is, elementary and middle school kids are just rabid animals, looking for weakness to exploit.
L: Ha! They really are! Or, at least, many of them are. I wish I’d been better equipped at the time to really push you past that and toward better self-advocacy.
J: I mean, c’mon. You can own the mom-guilt if you want to, but I’m not putting it on you! A 6 year old, a 10 year old, even a 12 year old shouldn’t have to advocate for themself, if the school staff is doing the job right. The people reading this probably can’t see how much I’m shaking my head with disappointment in those staff members and administrators right now. Let’s just all be really glad that I had a few really great teachers during my public school days.
L: Well, then. I’ll try not to borrow trouble! Ha! And yes, you had a handful of really wonderful, insightful and impassioned teachers. Thank goodness for them!
J: So, yeah. Bullying sucks. But bullying alone wasn’t the cause of my burnouts. Autistic Burnout really is far more complex than just “I can’t handle this one thing.” Autistic Burnout is effectively when one’s plate is ‘too full,’ but with a particular emphasis on sensory overload on the daily. It’s a lack of responsiveness, a lack of interaction, irritability...just this total wreck that you see coming, but by the time you take full notice of it, it’s already upon you. And unless you truly give yourself time to recover, it can go on for a ridiculously long time, and get exponentially worse.
L: And for those of us on the other side...the parents and caregivers and friends/acquaintances/romantic partners/co-workers...etc... What we see can be very different from what you are experiencing. We can see it manifest as a meltdown (sort of a tantrum, but unconstrained by the limits that tantrums have), or complete communication breakdown, or even as a physical shutdown. With you, I’ve seen all that and more. Fetal position, rocking back and forth. Repeatedly punching yourself or banging your head into the wall with seemingly no pain. Burying yourself under the heaviest blanket you can find for hours at time until your system literally burned through it and you came back out, sweating and pale and shaky. Or, more recently, communication breakdown to where you neither hear nor respond.
J: And it’s not something that can be magically solved with some statement like “It’s okay, you’ll get through it” or “It’s just one of those moments, it’ll pass.” That definitely ups the irritability.
L: Understood. I know it took me time (and several mom-fails) to accept that I needed to allow you to “go through it” rather than interfere. I just wanted to be able to fix the problem, you know?
J: Well, and that sort of brings home my point. The burnout isn’t the problem. It doesn’t need to be fixed. If anything, it is the solution to the problem of total overwhelm. It’s a functional dysfunction that the autistic brain protects itself with. It’s basically a very messy looking reset button that fries the whole system, wipes out all the data, and reboots.
L: Oh! That’s a great way to put it. That...makes sense, actually. I think from the outside looking in, Autistic Burnout looks...well, broken. When in fact, it’s probably more of a power-saving measure . . . that inherent instinct to turn off receptors and connections in order to divert energy to one manageable task at a time.
J: Absolutely, though there are times where you don’t even want to do that one task...just instead curl up into a ball... It can be hard at times but pretending like nothing went wrong is even harder.
L: But is it a want? That curling up and closing off and...well, sometimes, falling off the cliff of function in every area? Or is it more in line with a breakdown that just happens?
J: The latter. There are points where you just can’t contribute anymore. Where your ability to react to anything just disappears. It’s both total overwhelm and complete void.
L: Can you share with us a bit about how it has changed for you over the years? I could talk about what I’ve seen, but that’s not really a fair or total depiction.
J: So, just to be clear, most of my early years are a fog, so I can’t really speak to how I felt in those moments.
L: Totally fair. Ok, so from the observer’s point of view, what I saw was both mental and physical system failure. It wasn’t so much unresponsiveness and full-on fight-or-flight, usually fight. Your whole body would become tense and locked. You’d usually get sick to your stomach and develop a fever. Attempts to console you (which I mistakenly thought you needed) were met with physical resistance: biting, punching, squeezing parts of me hard enough to bruise, etc... And it usually took a few days for you to recalibrate.
J: I do vaguely recall some of that but picking out the context is hard. I do remember feeling that way, though. Sorry, mami.
L: Right. So, let me just go off on a quick tangent here and reiterate that this is not something to feel guilty about. You were, and I quickly came to understand, communicating in the only way you could at the time. You needed to get the message across that you were in such complete distress, and the best way to do that was to cause me physical pain until I was exhibiting similar distress. I liken it to that image we have of The Doctor’s regeneration...so much pressure that the body is just splayed, fire shooting out of every limb. Burnout was...literal burning...energy displacement...
J: It can be. Honestly, that’s a good analogy for how it sort of feels.
L: Uncontainable.
J: Yeah. Even though it presents differently, now, that sort of sums it up. So much stimuli having been collected that the container is bursting. The container being the whole of me ...mind AND body. It’s this psychological explosion, very often with physical...shrapnel.
L: So circling back...can you remember more clearly how it manifested, say, in your middle school years?
J: I was an absolute mess. Self-care went out the window, communication nonexistent, just this total collapse. For instance, I’d go to take a shower, and it’d be this relief...but at the same time? I got so lost in that, almost...sensory deprivation, that when you banged on the door an hour later to yell at me to stop wasting water, I’d come out not having actually showered. I’d get in there and no longer have any concept of what I was supposed to be doing...or how to do it...or even any sense of urgency that something was supposed to be done.
L: Oh. Ugh! Yes! Brief moment of silence for all the hot water wasted.
J: It wasn’t intentional. It was basically a white-noise machine of warmth in which my consciousness just ceased existence until I finally heard you knocking.
L: So, safe to say you were in sort of a hibernation mode?
J: Pretty much, yeah.
L: Well, but hibernation is associated with rest when we think of animals that hibernate over the winter. Is this in any way restful? It doesn’t seem like it is when I’m watching it unfold.
J: Fair point. Semantics, I suppose. It’s not restful, but it is a resting state. Brain in sleep mode.
L: Got it. So, physically, any sense of what’s going on around you? I know that sensory overwhelm is a regular trigger for Autistic Burnout. But when you are “in” it, are you aware of increased or decreased sensitivity? Or are you in a void where nothing reaches you?
J: Kind of both, depending on the severity. I can definitely tell that my responsiveness to things has dulled quite a bit, but beyond that...
L: I’d actually like to dig a bit deeper here. For example, when you’ve been experiencing burnout and are non-responsive...are you still hearing me? Is there a stop-gap on the way to responding? Or are you truly unaware?
J: Sometimes there’s a bit of a delay, almost. Like, I actively have to force myself to respond, interact. I still hear it, but I think the best way to describe it is like it’s almost echoing in, just hollow. Difficult to process.
L: Ah, process. Great word choice, there! Processing is an area that you have such trouble with, isn’t it? I imagine that your overwhelm is most often brought on by your almost hyper-vigilance and an inability to process the vast amount of stimuli and data you receive.
J: Yeah, and that’s another thing worth mentioning. If I’m seeming out of it or unreactive, it’s usually because I’m already processing a bunch of other things, the sort of input that a lot of people are able to tune out, but I’m not.
L: I get that. No, really, I get that. Which you already know, because we’ve conversed frequently about my own suspected neuro-divergence and hyper-vigilance and sensory-sensitivities...etc.. Ha! But back to you. Do you feel a mood shift during those times?
J: I guess it’s almost like a bout of depression mixed with, well, classic anxiety. It’s hard to describe, but just this sort of souring that tends to spoil a lot of the things I’d normally be interested in.
L: Right, so I think we’re jumping ahead to present with that last comment. You’ve talked about this with me before. And I think you’ve brought it up in therapy as well. That sense of ambivalent remove from those things and experiences that, deep down, you know you actually would enjoy or find fulfilling, but seem gray and lifeless. Do you think that’s true Autistic Burnout, or is that depression?
J: Well, that kind of shifts into another subject. Medically, Autistic Burnout’s characterized by that irritability and unresponsiveness. The bouts of depression in turn sort of result from that but are fairly common. Thus far, I don’t think anyone’s been able to pinpoint why exactly they happen.
L: Ok. Definitely something to continue digging into. But for right now, can we jump back to how you experience Autistic Burnout now, as a young adult. As in, what are you feeling physically before, during and after?
J: Well leading up to it, it’s that increase in anxiety and tension, which kind of mixes rather viciously with the stimuli in a less than pleasant cycle, until I kind of just ...bottom out. That sort of tension, that feeling of isolation when you’re nervous, kind of just lingers as a shell, and it just...I guess it sort of gets hard to move around in that shell, if you understand what I’m getting at.
L: Do you feel more tired before/during/after, or just more...sensitive physically/mentally/emotionally?
J: I feel sort of physically and mentally tired in the ‘immediate’ after the fact, but that exhaustion mostly occurs during the burnout. And as for emotionally...I feel much weaker. I think that also partly contributed to my resolution at the start of the year – to stop taking every negative thing thrown at me. I tend to, as I said before, emotionally partition myself, so that definitely contributes to the overwhelm, too.
L: What do you wish the neurotypical community understood about Autistic Burnout? Or, maybe, expanding beyond that, what do you wish the people you interact with understood about it? So, family/friends/acquaintances/etc...
J: It’s not something to just push past or out of. We need time to recover, to pull ourselves back together in a way. We don’t process the world in a way where we can just willingly tune things out if they’re too much.
L: So is it safe to say the accommodations you’d ask for would be: time, safe space, and...judgement-free “moving on”...sort of...no questions asked, let’s just get back to regularly scheduled programming now that you’re back with us? Or do you want to be asked about what caused it, what could be done to prevent it, and what you might need moving forward?
J: Err...both, but neither? Definitely yes to time and safe space. And, in a purely self-conscious way, yes to “let’s just all move on”. But, it would be great to find ways to reduce burnout frequency and sort of shift some of those triggers out of the way. So in that sense, yeah, I want assistance. Also, I know there are times where I just want to move forward, no questions asked, and I know there are others who’ve felt the same way. Kind of just an instinctive avoidance.
L: Question for you...are you embarrassed or ashamed of these burnout experiences?
J: Honestly, yeah, a bit. I can’t pinpoint exactly why, but I’d say just that feeling of...vulnerability, I guess?
L: Understood. Completely. No one...NO ONE...likes to feel vulnerable. I imagine that in some of your ‘episodes’ it’s probably felt frightening that you can’t stop what is happening or push pause until you are safe at home. I’m so glad we’ve always been able to have these open conversations (even non-verbally when you were young!) because it allows for a constant growing and evolving: of expectations, of safeguards, of strategies for coping...
J: Yeah. If I can emphasize one point, it’s that autistics NEED to have another person in their corner to help them navigate the world of neurotypical expectations. There’s definitely a difficulty over how much one might want to share, though.
L: So what about your peers...your true peers...other similarly-gifted, similarly-abled young autistic persons? What advice might you have for them in terms of coping with Autistic Burnout? Any strategies that you have found helpful in either staving it off or recovering more quickly?
J: First and foremost, focus on the immediate, not the long-term. Yes, there are things you can worry about but your personal wellbeing is a thousand times more important. Sign off social media and put your phone on ‘do not disturb’. PLEASE. If you have to outright say to your friends and acquaintances you’re going on a bit of a hiatus ...do it! If they don’t like it, then they’re not truly your friends. I’m lucky to have acquaintances who I’ve remained in touch with, who allow me the opportunity to take up where I left off. Additionally, try and always have things at your disposal that are comforting. For example, I have a weighted blanket to curl up under when it gets to be too much. Things like earplugs or headphones, soothing scents (lavender for me) and items with soft, smooth textures can help. Basically, anything that helps you create a sensory deprivation chamber of sorts, where the environment is entirely controllable by you.
L: Those are some good suggestions! What about in terms of those around you? Autistic Burnout doesn’t happen in a vacuum, nor does it respect the demands of work, social life, school, etc ... Any advice on how to ‘deal’ when you can’t just close the door behind you?
J: You know, I think about that a lot. I think most autistics probably do. While I wouldn’t call it a fear, it’s definitely something my mind keeps trying to solve. Remember before, when we were talking about how vulnerable it makes me? So, yeah, trying to find ways to create a safety net is definitely important. One suggestion I’ve come across is to carry a card that describes what sensory overwhelm is: sort of a “here’s what’s triggering me, please help me lessen it”, so that one doesn’t have to add to the plate with verbal communication.
L: That’s a good idea. And obviously, when it comes to school and workplaces, you really do need to be willing to advocate for yourself and ask for accommodations that take burnout into consideration. Just brainstorming here, but: an empty room with additional sound-proofing, a chair or couch, headphones, overhead lights turned off, music turned off...that sort of thing...
J: Right. Obviously it’s going to be so subjective, because every autistic is an individual and experiences individual, and therefore unique, sensory sensitivities. What triggers me and what helps me, may be the opposite of someone else. Additionally, these things can change over time. There was a point where I was more sensory-seeking.
L: Oh, I remember! Just to jump in quick with ‘what worked then’ and totally doesn’t now. You used to need a lot of deep pressure. We called them steamroller hugs. Did that ground you somehow, or did it cancel out everything else?
J: In a way, kind of. Nowadays, though, they don’t tune it out as much. I can’t help but focus in on every little bit of incoming data.
L: I think it’s probably time to wrap things up here.
J: Probably!
L: So any last tips to share, for either the neurotypical community in terms of better understanding or ways to assist, or for the neurodivergent community that may be looking for new ideas to try?
J: Well for neurotypicals, be patient with us! I tend to treat things in an almost scientific manner, so don’t immediately make an assumption unless you know the person well. Misreading the circumstances can be just as bad as ignoring them altogether. Likewise, for neurodivergent folks, find outlets for yourself . . . locations or routines just to let yourself recover. You don’t need to constantly expose yourself to the world. I realize there may be a little bias in that, perhaps due to my own attitude towards social interaction, but if something severely bothers you, avoid it!
L: So much THIS! Your world can be as large or as small as you need it to be. There’s so much expectation placed on us all to be social creatures, defining our lives by how large and layered our relationship circles are. But those very relationships introduce so much mental and emotional labor into our lives. It’s important to recognize that you may not be managing that well and be willing to minimize when necessary.
J: Oh yeah. It’s quality over quantity.
L: Sure is! And in terms of quantity, we’ve reached our word limit and then some! Thanks so much for this conversation.
J: Glad to, and honestly this gave me a chance to evaluate my own takes on things like this! Thanks for chatting...and to those of you reading, thanks for sticking with us. Stay tuned for more collaborative pieces regarding mental and emotional health, and neurodivergence!
No comments:
Post a Comment
Thanks for stopping by my little corner of the cafe! If you have feedback, questions or suggestions send them my way and I will catch up with you over coffee!