There are few things I find more soothing and energising than creating a problem to tangle my brain in. Sometimes when I feel utterly sapped of energy, and completely exhausted, I will spot an issue that needs solving and slowly wrap my mind around it.
The change can be instantaneous, or it can be a slow build that starts under a duvet with a fragment of an idea. Slowly as the hours pass, it may draw me through the house, pausing only for the necessities – dressing only if the task will require it, drinking only if my head aches from dehydration, eating only if I need the energy.
I never really figured myself drawn to routines. I leave things to the last minute, can’t stick to exercise schedules, don’t plan meals, and often use the shuffle function on my CD player. If people were to identify key adjectives about me, ‘disorganised’ might well be in their top ten. So while I didn’t see myself in that part of the diagnostic criteria, that “inflexible adherence to routines,” it was there all the time, hidden in the adrenaline-fueled drive towards trying to be someone that was not me.
With a late autism diagnosis, I am learning to better identify my sensory landscape, and to understand how social interactions work (or don’t). After over 40 years of ‘masking’ – trying to behave appropriately in a broadly neurotypical world – I have also become aware of how much energy this costs me. This piece is a snapshot of a single day, recording my awareness of masking and my building sensory overload. I also trace the bliss of experiencing flow states and altered perception, in my hobbies and in nature, which I shift into for balance and relief.
Extract from “Wintering” by Katherine May(about beginning a daily sea-swimming practice in the winter)
Encountering the extremes of cold drew us both into that most clichéd space, the Moment, forcibly pulling our minds away from ruminating on the past or future, or tilling over an endless to-do list. We had to tend to our bodies right here, right now, ever watchful that the cold would not encroach too far.
I spent a lot of time fighting other people’s battles.
Spoken word performance is something you’ll often hear described as an outlet. The open mic night that I consider “home”, Leicester’s Find the Right Words, prides itself on being a space for marginalised voices to speak truths and experiences, and it’s far from alone in that respect. This art form is one that the vulnerable, the recovering, and the revolutionary flock to, one that serves at a platform so many have needed. The perfect avenue for an autistic adult to express their socio-political truth, right?
Right. But folks, it took me a while to get there.
I used to be so sure I was lazy. What else could explain my love of staying at home doing nothing? Other people always seemed to be doing stuff. Socialising, working, exercising, travelling, making things, exploring places, shopping, enjoying themselves. Doing instagrammable stuff even before Instagram was even a thing.
I’ve always been an anxious person, long before my diagnosis. While I was always comfortable around my family, venturing beyond opened up a strange and closed-down version of myself that often unsettled people around me. I was prone to anxiety attacks, meltdowns and shutting down, which I felt worked for the time when I was confined to only socialising in school years. When the real world came into the picture, things got a lot more complicated.
I officially got diagnosed in July but I’ve been on this more upfront journey since around January/February when I got burnout. I found Agony Autie and her videos on stim dancing and it was like, “Oh my gosh, I think I do this! Hello? I have questions! This looks like me right here!” I was, “All of my weird movements have been me trying to keep myself alive. Wow, I didn’t even know!”
In 2019 I carried out a study to explore how late-diagnosed autistic women (like me) managed their health and wellbeing. You can read the summary of my findings here. This is the last of four blog posts describing the themes I identified when analysing the interviews. You can find the first one here, the second one here, and the third one here.