Fun things to do if you're autistic...
Before my autism diagnosis, I had heard the word “burnout” quite a lot. Always in a work context. Someone who had worked too hard, and needed to stop, had burnt themselves out.
Autistic “burnouts”, along with “shutdowns” and “meltdowns”, however, were all news to me. Well, they were new terms at least.
I’ve experienced all three to varying degrees for as long as I can remember. Sometimes visibly… Mostly not.
A lot of what I write is about how I manage my anxiety or energy levels. In a way, I do all of that to avoid the aforementioned burnouts, shutdowns, and meltdowns. So I don’t have to get to the point where my brain and my body force me to stop. Also to be happier and to live a more fulfilling life, etc… one step at a time, eh?
But I’ve not written about this specifically. So here you are. This is what Lauren shutdowns, meltdowns, and burnouts look like. And how I am trying to break the cycle.
Shutting down
It had been a fairly normal day. Exercise, work, meetings, work. Work had been stressful — I can’t recall why. I remember I needed to turn the lights down and do a lot of rocking around to balance out some sensory issues.
In the evening I was with my partner, lying on the sofa. He asked me a question — I can’t recall what. In that moment, for whatever reason, I had not been able to answer. I started to cry. Then I stopped. And stared. And stared. And stared. Hardly blinking. Totally unable to communicate. Very, very still.
He was as wonderful as usual. He held on to me, stroked my hair, and checked that was all still ok to do — I could just about nod or shake my head at that point.
After about twenty minutes, I managed to remember deep breathing. A few minutes of breathing exercises later, I felt like maybe I could speak again.I counted to ten in a barely audible whisper a couple of times. Something familiar, where I didn’t have to improvise.
After that, I could manage a very quiet conversation. Enough to explain to the poor, unwaveringly kind man on my sofa what on earth had just happened.
During a shutdown, it’s like time sort of stops. Everything feels a bit fuzzy and tense and weird. Like I’m trapped. Like my brain has just pressed pause on everything without warning me first. It must need it, else it wouldn’t do it. But it can be hard to work out exactly what caused it.
Melting down
A few days ago, I was cutting up blackout fabric to use on my windows. There was paper and packaging and fabric laid out on the floor.
I hadn’t “properly” cleaned my flat for about ten days, which was bugging me because I usually do that once a week. I had been in a few stressful meetings earlier in the day, and a lot of stressful meetings the day before. I had forgotten to eat my afternoon snack, so was unknowingly quite hungry. I had visited a new dentist that morning, which was very overwhelming. And I knew that I still had a few medical appointments, stressful meetings, and social events coming up in the week.
I took a brief break from cutting the fabric, stood up, and looked at the room. Simultaneously, the thoughts of (a) the fact that I needed to clean my flat and (b) exerting the effort to clean my flat, entered my mind. I immediately burst into tears and collapsed into a heap on the floor. Furious and distraught and in sensory overload all at once.
As it was happening, I knew it was silly. But I couldn’t stop. And I couldn’t fix it. I could feel every tiny sensory input, which made me feel angry, which made me cry more.
Meltdowns for me come with total overwhelm, sensory hell, anger, physical agitation, and helpless despair. In stressful weeks, this will happen at shorter and shorter intervals, until I change something.
Burning out
After a series of meltdowns and/or shutdowns, if I don’t change something, this is the very familiar land in which I invariably end up.
Often an early sign is that I feel physically ill. Sort of like mild flu. Growing up, this used to happen all the time. I was often off sick with some non-specific illness, which I am now sure was burnout. Being around lots of people at school — all day every day — must have been a constant sensory and social nightmare. No wonder my brain made me stop.
Nowadays this is most often caused by repeated work stress, too much socialising, life changes, new places, or travelling.
As well as the physical illness, there is a lot of tiredness. Sleeping more, but not feeling rested. Exercise becomes harder or just plain impossible. I’ll feel very stuck a lot of the time, not knowing what to do, and run into lots of meltdowns amidst the confusion. Speaking to people gets even more draining.
I feel generally “more autistic” during a burnout. Very minor changes feel even harder than usual, I will misunderstand what people mean more often, I will clarify what I mean more often, I will need to run through schedules more frequently and in more detail, my sensory issues will be through the roof, and I’ll often feel sick or agitated but with no idea why
.Many times, pre-diagnosis, this happened to the point where I had to stop working. For anywhere between one day and three months. Since my diagnosis, I have become much better at spotting the signs. And I adapt all sorts of things so that I don’t get to this point so frequently.
Breaking the cycle
All these things are still a regular part of my life. But far less so than they were pre-diagnosis.
What has helped:
Learning what costs me energy, and accounting for that e.g. by allowing more downtime or booking fewer social events back to back
Stopping myself before my brain or my body forces the issue… I am lucky to have a very understanding manager at work. If I’ve had a lot of stressful meetings, for example, we both understand that me logging off a bit early and getting time to rest afterwards is much better than forcing through
When these things do happen — as they always will to some degree — I am now much kinder to myself. When I have had a meltdown or can feel myself approaching burnout, I can bury myself in my special interests, take away some expectations that I would otherwise place on myself, or spend an evening doing nothing but drinking hot chocolate and listening to my favourite D&D podcast. Generally, take care of myself a bit, rather than beating myself up for not being able to do something that I “should” (says who?!)
It’s all still a work in progress. I definitely don’t remember all of those points all of the time… but even remembering them some of the time is a pretty huge step forward in my book :)
Lauren x