I want to talk about my relationship with the functionality of Autism. This is not based on research. This is not based on how I compare myself to other autistic people, and how we fit on some imaginary scale of usefulness. This is just about me.
I don’t like the term High Functioning. Perhaps it’s partly an instinctive reaction. It sounds snooty. It sounds arrogant. It sounds aloof and cold. And these are all things that I’ve been assumed to be, because I don’t project my emotions the way neurotypicals do.
I don’t like the term because it suggests that I’m on a separate plain to the Low Functioning Autistic. I don’t like it because it belittles how much effort I put in to functioning. It makes it ok to brush my needs off as already dealt with by me.
I don’t like the term because I hear these words used to describe autistic people, and they confuse me.
How do people know? How do you know if a silent person in front of you is high or low functioning?
Talking isn’t an indicator, it doesn’t lay the brain bare for all to see.
Interacting isn’t either. When my brain is at its most active, my interactions shut down, I become silent and withdrawn. My brain is feeding all the space that my senses and projections might otherwise fill.
There’s another dichotomy. When people look at me and see me at my most “High Functioning”, they are not seeing me at all.
When they describe the woman going about her business, calmly chatting to strangers, smiling appropriately, behaving like everyone else, they are not seeing what is there.
That person is an affectation. She is my oily surface, beneath which I’m frantically swimming.
I can only hold my breath and stay under for so long, and when I come up I will be breathless, I will be exhausted.
Is she high functioning? She looks it. She acts it. You can’t see her thought processes and her anxiety.
Or then there’s woman number two. Me at home. In my loose fitting cotton clothing, making paper flower after paper flower after paper flower because the texture and the angles please me. Stopping occasionally to stim. Twitching my nose. Talking in bursts of frantic conversation about abstract thoughts, and then falling back into silence. Pausing to write an article because a thought has occurred to me and I need to catch it before it flutters away into the heaving mass of everything else.
Is she more autistic? She’s effortless. She’s stressless. She’s content in a way that the first woman will never be.
The first is stressed and will need recovery time. The second is content and relaxed and actually being productive. She can respond better to change because there are few external demands. She has processing to spare.
Then there’s the third, the shutdown woman, who cannot talk, who rocks, who cannot think. Who feels like her brain has escaped her.
But the third has only ever come along after too long being the first. The third is a consequence. She is a product of enforced processing.
For me it is simple. The second woman is true. She is genuine and real and she functions on some levels and not on others.
She’s likely to forget to drink anything. She’ll not be making a phone call anytime soon.
The idea that you can quantify my difficulties or my strengths by analysing my behaviours is unhelpful.
By creating woman one, through enforcing behavioural changes, I have not created a High Functioning Autistic. I have made a poor replica of a neurotypical.
If you’re neurotypical then you may make the mistakes that I make when I apply motives to your actions, you’ll make assumptions from your own motivations, from your own experience. And although we do have shared experience, we have lots that isn’t. My motivations are not yours.
It’s not about what I can do, it’s about the price.
My autism is static.
My autism is unchanging.
My autism is my way of processing my experiences.
My autism does not disappear when I’m still, it does not appear when I am alone and my brain is screaming. It is constant.
Autism is a spectrum. You are on it or you are not. It’s an absolute. It will not go away.
What changes is the way you compensate for your difficulties. The better I compensate the easier it is to function in this world built for alien thought-processes, but that doesn’t make them less present.
More importantly it doesn’t detract from the cost of employing them.
If I spend one day as woman number two, then tomorrow is mine to do with as I please.
If I spend one day as woman number one, then tomorrow is eaten by some version of woman number three. Sometimes she’s just exhaustion, sometimes she’s completely lost.
It’s my time. I have a finite number of days.
It’s my life that is being consumed by woman number one. She is not me, but look how well she makes small talk! She’ll even study for it. Find out what you like to watch and watch it, just so there’s common ground to retreat to. Just so she can echo normality.
She will waste her life preparing for pretending to live, when she could be spending it living.
Is that who the world wants me to be?