Ugh. I don’t know how to start this blog post.
I don’t know how to start anything, actually, at the moment. I have to be prompted to get a drink of water. I have to be bribed into doing work for the Master’s course I am genuinely excited to be on. I have to break down tasks like “get ready for bed” into their smallest parts if I’m gonna have any hope of starting them – steps like: 1. Remove blanket from lap. 2. Stand up. 3. Pick up medication from sofa. 4. Put medication in mouth. 5. Swallow with water. 6. Walk upstairs. 7. Pull down trousers. 8. Pee… and so on.
Sometimes, when I get stuck on a seemingly trivial task, I laugh. I say, “I’m a postgraduate student,” like the juxtaposition is funny. But I’m getting more stuck more often on more trivial things, and it’s getting harder to laugh.
I’d heard of autistic burnout in passing. I knew it happened, and I knew vaguely what it was. Everything is so difficult for autistic people, all the time, and atop all those difficulties we have to place a carefully-constructed neurotypical mask, and naturally, we get exhausted. And we get so exhausted that we burn out, like anyone would, and we struggle more, and we need to recover. It’s sometimes called “autistic regression”, especially in kids, because one of the effects of being chronically exhausted and autistic is losing the ability to do things that you used to be able to do – including sensory processing. People suffering from autistic burnout will often experience heightened sensory sensitivity, as well as a decreased ability to process spoken or written information. I knew all this.
But I didn’t know – really know – how it would feel for me.
One of the reasons I find the terms “high-functioning autistic” and “low-functioning autistic” so infuriating is that I function… selectively. This week, for example, I did the reading I was set for one of my uni modules, made it to my seminar on time and didn’t have a meltdown, but I also had to buy a packet of new underwear from Tesco because I haven’t done any laundry (or even asked anyone else to do it for me) in weeks. I went to the GP and gave an honest report of my recent symptoms, but then had to nap for five hours and have a hearty cry. I sort of shift all of my “functioning” to the places I need it the most, often to the detriment of self-care. (And I don’t mean what Meg-John and Justin have brilliantly termed “neoliberal bubblebath self-care”, the kind where you pamper yourself a bit and eat chocolate. I mean, like, eating meals and showering and shifting positions on the sofa when my hip starts sliding out.)
Unfortunately, it turns out that my functioning is finite. And, sort of like a health bar in a mobile game, it doesn’t recharge as quickly as I need it to. But, unlike a health bar in a mobile game, I can’t watch an ad or make an in-app purchase to refill it instantly. I’ve been bridging the gap between my ability to function and the things that have been required of me with a lot of things – caffeine, nicotine, sometimes adrenaline – but the gap is widening, and I’m falling into it.
The reality is this: I’m suffering with autistic burnout. Right now, in real life, no matter how hard I ignore it. I’m constantly exhausted. 90% of sensory inputs make me want to scream. In the evenings, I literally cannot read. (I’m a sex blogger and a fucking English student, so this is a problem.) I’m irritable and confused most of the time. Like a lot of people with autistic burnout, I’m teetering on the edge of suicidal ideation – not making plans, but often catching myself thinking, “God, I can’t believe I have to be alive tomorrow,” or even, “If that car hits me right now, it’ll all be over.” I’m safe, because my support network is wonderful and I have responsibilities that would make me dying right now really inconsiderate, but I want to be honest about how much this sucks. It sucks so much.
The frustrating thing about autistic burnout is that it doesn’t feel like depression. There are similarities – low mood, low energy, hours of extra sleep that doesn’t leave me feeling rested – but the crucial difference is that depression takes away my motivation to do things. Autistic burnout takes away my ability to do things, but leaves my motivation intact, so I spend hours feeling desperate to get things done but literally unable to do them. And because, from the outside, I look “high-functioning” – talkative! A postgrad! Surrounded by friends! Not visibly stimming! – it feels slightly ridiculous when I can’t figure out how to remove my shoes, or nearly wet myself because I forgot to “ask my body” whether I needed to pee. I have run my metaphorical health bar into the ground, but from the outside, I still look like the model of a “high-functioning” autistic person. This makes it harder to get help, but it’s true for a lot of autistic people, especially the AFAB ones who’ve been under a little extra pressure to mask their autism. Y’know, like me.
I know, in theory, what helps. Less time masking, more time resting. Taking off any unnecessary pressures and allowing myself to recover at my own pace. An enriched “sensory diet” – that is, more sensory inputs that make my autism feel good – and acceptance from those around me. All the advice is there, online, just begging me to take a break.
The problem is that I literally can’t take a break. I can’t defer from my Master’s without sacrificing all of the week-by-week structure it gives me, which is crucial to me actually getting out of bed and eating breakfast sometimes. I can’t take a break from the people around me, because some of them need my support and some of them are the ones making sure I eat, sleep, pee and take my meds. I can’t take a break from worrying about money, because I have rent and tuition fees to pay. I can’t even take a break from blogging, because it’s my outlet, my community and one of the only things that makes me feel useful at the moment.
There are a few things I can do. I’m trying to stim more, which for me involves a lot of knitting, chewing, singing and jiggling. I’m also trying to avoid unnecessary sensory hell, which means I’ve eaten variations on the same dinner for the past seven days and have temporarily given up on underwired bras.
The scariest thing I can do is ask for help – but when I do, I get it in spades. On any given day, multiple people ask me whether I’ve eaten. Strangers and friends on the internet tell me I’m a worthwhile (and cute) person. My Daddy cooks for me, and when they’re not around, my boyfriend offers to order me takeaway despite being in another county. The actual, practical help that I get is incredible, and life-saving, and cannot be overstated – but the encouragement and support I get is invaluable, too. It helps me feel “allowed” to ask for practical help with things, and it helps me feel like I can get through this.
Go and shower the autistic people in your life with love. Love helps.