Read this great post from Lady Ananas about how the autie must bend and contort to fit the mold of “normal” every day. Reading it certainly clarified this daily struggle for me.
Less than a fortnight ago, I wrote about being “rigid”.
I explained about my need for schedules, plans, and organisational strategies. My need to prepare, and my alarm and anxiety in the face of uncertainty and ambiguity.
It’s there in my pre-assessment mapping to the DSM-V guidelines, under my response to Criterion B2, exemplified by:
“Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal/non-verbal behavious (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns[…])”
But as always, things are never that simple.
I mean, yes, of course, I need to organise and structure my life in the face of chaos.
Yes, of course, I struggle with change.
Yes, of course, I find “decision fatigue” harder to deal with than your average neurotypical person, because I am overwhelmed when faced with choice.
But the fact is, by the time I come to make decisions of a personal nature, I’ve already had to make thousands and thousands of micro-decisions simply to negotiate life in a non-autistic world.
By the time I come to realise I’m going to have to employ a few time-management tools and get a little help with planning, prioritising, and bending my schedule to a shape that I can work with, I’m already bent out of shape myself.
I’m always bent out of shape.
This is the nature of being disabled. And it’s not my disability – my autism – that bends me out of shape. Autistic is my natural shape.
No. It’s this world that forces me to flex, bend, fold, and contort myself.
I have to flex, bend, fold, and contort my brain, my personality, my personhood, my humanity – my very being – to suit the world in which I find myself.
We talk of “reasonable adjustments” – those supports, changes and accommodations made to improve access and enable disabled people to live, study, and work in an abled environment.
And these help. They certainly do for me.
What we rarely talk about is how many adjustments disabled people have to make every single day, to make themselves acceptable to their abled family, friends, fellow students, teachers, colleagues and employers.
We’re continually making adjustments. Maybe even continuously so…
We talk of autistic people – women and girls in particular, but I think the same can be said of anyone who has an atypical autistic profile – as “social chameleons“.
I think it goes further. We’re social contortionists.
It isn’t simply that we wear a mask or assume a role. It isn’t simply that we continually swap and switch between many masks or roles.
We’re constantly bending ourselves out of our natural autistic shape. Flexing, bending, folding, contorting, and re-configuring ourselves the better to occupy a space that doesn’t accommodate our natural form.
We have to do it consciously.
And at times, it’s painful.
And by the time we’ve done all this, on top of everything else that our brains process every minute of every day, it’s no wonder we want to retreat to structure, control, routine, rigidity.
We simply haven’t any energy left to contend with any further bending of our reality.
As so often, in describing our thinking and our behaviour as “rigid”, autism is viewed through a neurotypical lens. We are compared to those around us, and found lacking.
We are not the default, and so, consideration is not given to all that we are contending with internally, simply in order to operate pseudo-successfully in the world in which we find ourselves.
I’m tired of being a contortionist.
I’m tired of being bent out of shape.
And I long for a world in which I can always feel free to assume my natural form.