The End of the World – #Autistic December 3/31

The End of the World – #Autistic December 3/31

A child sat on a lawn holding a piece of a broken stick in each hand and crying

“It’s not the end of the world,” my mum used to say as I cried inconsolably over something that most people would regard as trivial. Perhaps someone else took the particular cookie I’d fixed my eyes on, or the books I’d carefully lined up had been dusted and moved.

The thing is, when you’re autistic and you’ve got an idea in your head about the way things will be, anything which disrupts that expectation does feel calamitous. The certainty we were relying on has fallen in ruins. It literally is as if the world shattered under our feet.

When people try to console us by “putting things into perspective” it can actually make it much worse because they are demonstrating a lack of empathy: they’re projecting their perspective onto us, and it doesn’t match our experience.

For many autistics, having a predictable environment is very important. We need our routines so we can feel at ease, and when we go outside our usual bounds we like to know what to expect in advance: to be prepared. When I go to new places I research beforehand so I know the layout and how it looks.

I’ve learned to manage my expectations up to a point but I don’t always succeed, and when something doesn’t turn out the way I thought it would the blow can be crushing. The feeling is so intense that I can’t see past it and be objective. It might as well be the end of the world.

Being Disabled – #Autistic December 1/31

Being Disabled – #Autistic December 1/31

A close-up of a UK disability Blue Badge showing the white on blue disabled symbol on its lower left corner

I never imagined when I used to see or hear about disabled people that one day it would include me. I don’t think anybody does: unless you are disabled yourself it’s always something that affects other people. Less fortunate people.

Be honest: that’s how you think of us, isn’t it? You feel glad–lucky–that you’re not disabled. Because that would be awful. Am I right?

That right there: that’s stigma. You feel sorry for us, pity us, hope you never become one of us. You see us as damaged people. You can’t believe it’d ever affect you, that you could ever become disabled yourself.

I know, because I used to feel that way. Disabled people were some other group, over there, not like me. There was a difference, a gulf that could never be crossed: that could never be me.

I had no instant of revelation, no light-bulb moment. The idea that I was disabled myself took time to sink in. I spoke the words long before I accepted the truth and believed them; I denied it to myself. I worked full-time, had my own home: how could I reconcile that with being disabled?

What I felt was internalised ableism: I had become accustomed to equating disability with failure. Really accepting that I was disabled meant confronting my own prejudice, admitting it existed, and then unlearning it.

That journey has been a hard one. It’s more than uncomfortable to admit that you don’t live up to your own moral standards, but faced with a choice between denial and change I realised I had to change if I was ever going to accept myself for who and what I am.

I am disabled: that means there are things I can’t do and situations I can’t handle. It doesn’t mean that I ought to be able to do those things, and it doesn’t mean I’m a failed human being: I’m not. And I accept that.

This is the first post in Autistic December, a daily series about the impact on my life of being autistic.