One of the difficulties as an autist is that there are often no words that describe my sensory or emotional experiences. It’s a bit like trying to describe the taste of cucumber to someone who has never eaten it.
So, today I am going to describe how it feels when something that should happen, doesn’t. That feeling which is often called wrongness, that can increase anxiety and panic. The thing is, the anxiety and panic are a consequence, they’re not the actual feeling. And wrongness doesn’t really translate as a feeling for a NT.
The closest I can come is the feeling when a close relative dies. Someone who has been part of your life every day for years, who inhabits the same house, whose existence is twined with yours. And suddenly they are not there, they will never be there, and the world feels broken, out of kilter. Your brain keeps trying to think of a way to make it right, to bring that person back where they belong, and the knowledge that it can’t actually done tips you into grief and panic.
That’s how I feel when something unplanned happens, when something goes wrong, something changes, when people start arguing… all sorts of things can trigger it. I want to shout at it to stop, to go back the way it should be, to resume the safe, expected path. The loss of an expected event, the change from normal behaviour to anger, these are bereavements and they send my brain spinning as it batters against what is, trying to turn it into what should be.
I’ve learned to lock down the panic, to resist the need to run away, to keep my hands in my lap and not cover my ears or hit my head. I struggle to follow conversations and ask people to repeat things again and again. Exhaustion is only a step away.
Eventually, minutes or hours or days later, it stops.
And I keep putting one foot in front of the other, walking across a landscape that is mined with episodes like this. I don’t know I am going to tread on one until it explodes underneath me. I don’t want to feel like this, but the world gives me no choice.