Autism and the relentless need for control

During the past week, I realised something about myself that isn’t easy to admit. Or maybe it’s more accurate to say that I’ve known about it for a while but tried to ignore it. Or, even better than that, is that I’m only now at a time and a place in my life where I can articulate it as an issue.

The issue is control, and how I prefer an abundance of it: over my environment, over time itself, and, to a certain extent, over my relationships.

‘Control’ isn’t just a dirty word – it’s downright filthy

The ol’ Merriam-Webster states control, controlled, or controlling as:

a. to exercise restraining or directing influence over: REGULATE
b. to have power over: RULE
c. to reduce the incidence or severity of, especially to innocuous levels

I’ll take option ‘c’ please! The first two definitions don’t sound like character traits belonging to anyone I’d like to associate with.

The control I’m talking about doesn’t see me ruling my household with an iron fist, or telling my wife who she can and can’t see, both of which would be beyond disturbing and grounds for my immediate dismissal from our marriage.

Instead, my brand of control manifests itself in my desperate need for specific environmental conditions, a certain level of predictability, and a dash of inflexibility over the way I believe some things should be handled.

An absence of jealousy (or tin fist), however, doesn’t mean that my particular versions of control are harmless. Or that they don’t frustrate, or, you know, piss some people off.

But it is what it is, and what it is is my response to overwhelming sensory sensitivities (like that pesky mealy tomato!). I know this for certain now because I did a test.

The Adolescent/Adult Sensory Profile

My Occupational Therapist had me complete The Adolescent/Adult Sensory Profile as part of a range of assessment to determine whether aspects of sensory processing might be contributing to performance challenges in my daily life.

The AASP measures responses to sensory events, including taste and smell, movement, activity level, and visual, touch, and auditory processing. It isn’t only used for Autistic people, but for those who have ADHD and OCD as well.

Here are my ‘high-level’ results from the test:

And here they are in diagram form for the more visual among you:

I went through the results with my OT the day before writing this post, and what they essentially mean is that I don’t ‘sensory seek’ more than most people (although I do like many different types of food, and I prefer it full of flavour and spice), have quite ‘low registration’ (for example, playing backyard footy as a kid I broke my arm but kept on playing, kept jumping fences to get the ball when it went over, because I didn’t notice I was even in pain until much later), and, as I have already indicated above, have a strong need to ‘control’ my environment (the combination of scoring higher than most people in the ‘sensory sensitivity’ area and much higher than most in the ‘sensation avoiding’ area, confirms this). 

I can best explain what this all looks and feels like on a daily basis for me by saying that, if asked, nine times out of ten I would choose to live in a hermetically-sealed bubble. Something like the people who lived in ‘Biosphere 2’. Only I wouldn’t be with anyone else. And I wouldn’t want to die at the end of it.

Control is completely exhausting

The need for everything to be a certain way all the time isn’t something you can turn on and off whenever you want to. The compulsion to make sure that the kitchen benches are clean, and that everything on my desk is in its correct place, and that the carpet is fluff free, and that the yard is preened, and the towels and sheets are fluffy and crisp, does mean we have a clean house. But it also means that I am ‘on’ every waking hour of every day, and, unfortunately for my wife, that she has to bear witness.

All of the examples above relate only to my physical environment. But there is also my pathological need to know, or plan – preferably days in advance – precisely when things are going to happen, and with whom, and at what location.

It’s about managing my days so that I can structure everything around my downtime at home, and, more recently, on allowing enough space for me to write and work on this blog site.

So I limit the time I spend in social situations – I space them out, make sure there aren’t too many in any given week. It’s the same with medical appointments, or any other appointments for that matter, because, to me, they also constitute social interaction – they’re human contact, at the end of the day.

For me, control manages my anxiety. It makes me feel safe. It wraps me in a kind of protective coating.

Control also brings with it the concept of ‘correctness’: drive safely, consider others, don’t push in line, don’t leave dirty dishes in the sink, don’t play loud music late at night

You do unfortunately end up sounding like a sort of a hall monitor. And still, no matter what you do, you can’t totally control anything – especially other people’s actions. They will do what they will do, randomly, inexplicable. Which is why I’ve always battled the idea of control, and always will.

Unmasking as it relates to control

As I continue to explore what unmasking looks like, I increasingly understand the connection between it, my need for control, and living my life in a way that’s authentic, and, most importantly, on terms I can cope with.

Years ago, when I was working in middle-management at the Medical Board of Queensland, I was, amongst other duties, responsible for approving applications made by international health professionals for registration to practice.

How I ended up in a job so at odds with everything else I had previously done is a story for another time. But the stress levels of the role – which entailed managing a team of registration officers, handling endless enquiries from colleagues, medical recruitment agencies, and the doctors themselves, plus taking any contentious applications to a Registration Advisory Committee meeting, which was held in the evening every fortnight – took its toll.

The place was a sausage factory, where the applications never ended and whenever I thought I had actually answered the last email or phone call, or signed off on the final application in my generally overflowing wire basket, I would pop to the kitchen to make a cuppa, only to return to yet another file, sitting there on my desk, mocking me.

Eventually, the place broke me. I recall telling a team member who was making enquiries about whether she should tick column ‘a’ or column ‘b’ (it was probably something trivial, though perhaps not quite that inconsequential) on a doctor’s application, when I stopped her and told her that if I didn’t get up and leave right this instant, I was going to pick up my PC’s monitor and throw it out the window.

What followed during an almost three-month-long sabbatical that I now know was an early iteration of Autistic burnout, was an obsession with leaves (yes, I said leaves) and my inability to rid them from my garden.

There was a tree, you see. A large eucalypt in my neighbour’s yard from which fluttered an endless supply of leaves to my meticulously designed allotment of pebbles and stepping stones interspersed with plots of herbs and vegetables.

That the pebbles were drowning in leaves, ruining the aesthetics and scrambling my mind, was unbearable. So much did I obsess over those leaves that I ended up debating with my wife the virtues (or otherwise) of sneaking into my neighbour’s yard to poison the tree and be done with it.

It was, ultimately, only my Autistic mind’s sense of right over wrong (and my wife’s perspective on this matter) that stopped me. And as the weeks and months passed by and my distance from the Medical Board grew, so my obsession with the leaves dissipated.

Control equals shame

For as long as I can remember I have felt deep shame over my need to control so many aspects of my life. So much so that it’s only really now that I’m able to admit it to you, and, even, to yours truly.

It’s the sensation of being held captive by one’s feelings about matters the majority of society would consider trivial that is so damning. Try explaining to most rational-minded, non-Autistic person that leaves – leaves! – are destroying you and that you feel helpless to their hold and torment.

Even at the time, I knew, on some level, that it was all objectively quite ridiculous. And yet my mind was, quite physically it seemed, being bent into something not unlike a pretzel.

This is how it feels on a daily basis, to a similar or slightly lesser extent, in relation to a range of sensations – and so the shame is with me every day.

Fortunately, finally knowing that the issue stems from being Autistic means that I am now better placed than ever before to address it.

I am working with my OT, and with a psychologist, to develop fully-fledged strategies (as opposed to my own half-baked ones) to help me manage my sensory issues and the need for control that comes with them.

Establishing ways to cope with distress and meltdowns, better communicating the boundaries I need to implement and why, creating realistic routines that I can stick to, investing in sensory tools like compression clothing and weighted blankets, and, even recognising control as an issue, as I’m doing very openly here with you on these pages, will all go a long way towards making my overall life more tolerable.

It’s going to be a long road, and it has taken me a long time to find it. But at least I’m finally, definitively, on it.

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