Selfie, taken at Oxford train station while texting Rhi, drinking flat white coffee and squinting at the camera in bright warm sunlight. By the time the train arrived ten minutes later a sudden cold wind had brought on numb fingers.
Occasionally I read autistic blogs and the writing feels remote. Slowly I’m identifying a difficulty in matching words to experience. Meltdowns have been one such area of disconnect, but today, as I prepared to make an overnight journey, words and experience coalesced to bring a new understanding.
A brief essay on words (skip if you just want to read about the meltdown)
I mean words – what are they and where do they come from? I’ve previously described how writing feels like plucking words from the sky. I sense them rather than understand them in a precise manner. Sometimes I get the ‘right word’ but often I don’t, and I have to keep fishing in the clouds. Words are tricksy like that.
Blog posts often appear as shapes, but today I began with a strong impression of words flapping pleasingly this way and that, like washing on a line just above my head. And I wished I could press my face into a crisp bundle of newly washed and dried words, then lay them out in a straight line for the reader. Ta-daa! SO much brain work would be saved by such means.
But words are both like objects to me and frustratingly abstract. It’s a paradox which can frankly hold recognition in abeyance. How do you match experience to words when they are nothing like experience? Since diagnosis a year and two months ago, I’ve had to take it on trust that meltdowns are part of my experience too.
So what do I experience?
In childhood ‘tantrums’ – were memorable. I gained infamy for my meltdowns, and earned the nick name ‘the earthquake’. But throwing myself around didn’t stand out so much when I was small – fast forward to my late teens and no-one outside my family would have recognised the former earthquake me as me.
Fast forward again to 2017. You’re so calm! people tend to say to me.
As I gradually learn more about myself I see that I do, of course, experience meltdown as a sudden crashing in of functional capacity.
It’s just that I learned to do it quietly – off camera. I never knew just why it should be so hard to get ready to get dressed sometimes, or simply pack for a short stay away from home? The reasons have eluded me until today. Texting my autistic friends revealed to me something I had never known before. My sensory issues are REAL and relatively common for autistics. Alterations in sensory perception can make the texture of almost any fabric an irritant. I can go through an entire wardrobe and find almost nothing my skin can tolerate once in a state of sensory deregulation.
And now that I have made this connection I see that while having a shower can be one of my favourite things, the after effects can be devastating in terms of sensory regulation, depending on air pressure and the temperature in the room. Changes in tolerance can be rapid allowing little time to catch up and react. Often such changes will be entirely unpredictable but at least a pattern is emerging.
I challenge anyone to try getting dressed when showering sets the entire surface of your skin crawling, and the soles of your feet morph from neutral to achy with a side order of grit between your toes. There are no socks on this planet that are right under such conditions. Even the trainers you’ve been wearing for months so that they follow the exact contours of your feet feel lumpy, off balance and just plain WRONG. Go on. Get dressed then. No?
Add little extra pressure – like having to get dressed and catch a train when a minor heatwave just dissolved into a classic British all the weathers in one day – with alternating sunshine and showers. That’ll be the reason you’re a raw nerve by the way, but you’ll find it hard to explain even to yourself how stressful adjusting to contrasting weather conditions can be. No matter! The train won’t wait…
And you can’t casually fling overnight stuff into a bag and go. Hell no! You’ll need a suitcase of options (wot but you’re only going for one night! a helpful relative might say to spur you on.) You’ll feel close to defeat. Oh, and you’re still not dressed. But come on, think about today’s and tomorrow’s clothes while the ache in your bones and the ants on your skin gnaw at your dwindling ability to focus. Your brain registers that you can’t possibly know what to wear tomorrow as this could surely happen all over again.
Okay – can you pull it all together? Want to scream yet?
I’ve been here so many times before – not being able to dress myself (what!?) when sensory circumstances conspire – is a thing I’ve lived with for a lifetime. But at last I begin to discern a pattern – this happens in certain weathers and/or when I have to plan for being away from base camp.
I now see that such crisis’ are the direct result of unreasonable pressures. It’s genuinely impossible to get dressed and pack clothing to accommodate an autistic sensory system while experiencing acute sensory deregulation!
A body which can’t automatically access self-regulation relies on its owner to drive on manual. This forms part of the extra work many autistics must carry out all day every day – many of us without realising it. Daily we micro-manage our bodies with our careful routines and intricate strategies. Time away from base camp requires planning and portable equipment. Acute sensory deregulation and the promise of variable conditions create a perfect storm and blocks functional capacity.
Who knew that this was so? Certainly no-one ever told me. I’ve had to work it out with a little help from my friends.
The relief is incredible! Having autistic friends means I can swap notes and indulge in the kind of sisterly conversation that can stop a potential meltdown in its tracks.
Tomorrow we all meet up in ‘real time’. Yes indeed – we were all getting ready for a train ride to Birmingham to provide feedback on an art space from an autistic perspective.
It’s taken me so long to write this post that at the time of publishing the meeting is done and dusted and we’ve gone our separate ways. But we’re all bound for the same destination. Decompression central here we come!