Written by Glenn Weller
At the beginning of 2022, when I was due to return to work after a short break for Christmas, I found myself overwhelmed by thoughts of how I was going to get through the next 12 months, let alone the next 10 years.
My wife and I had developed a plan, you see, on how we could retire at 60, at which point we would be able to access my superannuation and sail off into the life-after-work sunset.
But 60 suddenly seemed unattainable, and a sense of foreboding that had become increasingly present throughout the past two decades was rearing its head, yet again.
The key to my recognising that something indeed was stirring was my obsession with time and the cliché of how there is never enough of it.
It wasn’t just that it seemed to be in short supply – though that was the problem. I had become (and am still) fixated on breaking it up into manageable pieces, running through in my head how long each task would take and where it fit in relation to each of the other tasks I had to perform. I don’t mean I was setting a schedule for my work day in order to achieve each of my competing responsibilities. What I was doing was working out in minute detail when I would finish breakfast, and when that would mean I would brush my teeth, and when that would mean I would be at my desk, and when I would write, and when I would make a cup of tea, and when I would be back at my desk again…
To further complicate my efforts to gain some semblance of control over time, the emails wouldn’t stop, and the phone would ring, and then it would ring again, and, perhaps, if I was reaching the pointy end of needing to get the magazine out the door to the printer to make sure it reached members on time, but, was waiting on yet another late ad to arrive to complete the layout puzzle, I would have to pick up the phone and commence what I knew would be a series of calls to chase it down.
It was when bin day began taking on truly unreasonable importance, however, that I could no longer ignore that something was truly amiss. The previously simple task of taking the bins out was pulling at the edges of my mind the way one might draw back a rubber band and let it snap.
I worried that I would forget to empty the smaller bins from the bedroom, bathroom and office into the bigger bin in the kitchen. Or that I would forget to collect the frozen waste – the gnawed at bones, empty tuna tins, and discarded chicken and steak packets – from the freezer. Then there were the big puzzlers: Was it garden waste or recycling bin week? What time should I run around and gather up all of the rubbish and put the bins on the curb? And was it going to rain today or not? I didn’t want to put the bins out too early because I knew the grass would end up with the beginnings of that dead yellow square if they sat for too long beneath the baking hot Brisbane sun. And I didn’t want to get wet walking out into a storm either – that I truly couldn’t cope with.
In October, I received my official diagnosis of autism, having undergone a lengthy assessment process at Mater Hospital’s Intellectual Disability and Autism Service. In the meantime, I had reduced my working week from five to three days in an effort to alleviate the ever-increasing feeling that I was about to burst, but unfortunately noticed no discernible difference. No one knew, of course, what I was going through – not my colleagues, not my friends, not my extended family. Only my wife, who was subject to my constant moods and meltdowns, noticed my stresses.
From a very young age I had learnt that it was better to remain quiet and nod and smile when people were talking. I learned to observe others closely, to copy their body language and facial expressions, and to use something like a script whenever I engaged in social rather than functional conversations.
The irony is that despite these behaviours – masking as I have come to know them – allowing me to fit in in many situations, they are also some of the main reasons I now feel utterly depleted. I am, as it was explained to me at the time of my diagnosis, in a state of extreme Autistic burnout.
The way I have come to think of it is like this: Imagine you step on a piece of wood in your bare feet and pick up a splinter. Then you leave it there. It’s a mild inconvenience at first, you walk on it and sometimes it hurts, but for the most part you can ignore it completely. As the pain gets worse you might find yourself wincing and if someone sees you and asks you if you’re alright, you of course nod and smile and say that you are, that you’re golden. In time though, your foot becomes increasingly tender, the area swells, and before you know it you’re laid up with a full-blown infection.
Now I’m not saying Autism is an infection – of course not.
But leave anything unrecognised and unaccommodated for more than 50 years, as is the case for me, and you’re going to end up facing some serious problems.
That’s where I find myself: confronting the reality of who I really am while in a state of extreme physical and mental fatigue caused by living life as if I’m non-autistic.
At the beginning of 2023, 12 months after I first realised I was more than just life weary, I resigned from my job, having understood that I needed to focus more on my specific needs and less on the expectations of those around me.
The idea that we can all join in life’s conga line is an appealing one – if simply for the sense of fun and connection it can foster. It’s one I’ve flirted with in a never-ending cycle of push-pull for as long as I can remember. I realise now though, (or perhaps it’s more accurate to say that I finally remember) that we’re not all cut out for the conga. Recognising that and accepting it, I hope will be what saves me – and will be what allows me to finally find some measure of comfort.
Glenn is a recently diagnosed Autistic man who has lived each of his previous 52 years not knowing he was Autistic. Follow his journey on his new blog, The Unmasked Autistic.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.