Since being diagnosed with autism in my mid-30s, I’ve been re-thinking a lot of things.
I’ve spent a lifetime of trying to appear to be the same as everyone else. I’ve been watching. I’ve been studying. Every book, article, overheard conversation, brings me that little bit closer to passing for normal.
I’ve spent a long time thinking about who I ought to be.
And I thought you were all doing it too. Maybe not everyone. Maybe a few of you were in on the secret, but I assumed, as we all do, that the way I see the world is the way everyone does.
Now I know that when I don’t understand you, it’s not that I’ve missed out the rules of the game, it’s that you’re playing Monopoly whilst I’m playing Rugby Union.
It’s not that I’m coming at it from the wrong angle, it’s that I don’t have the… Whatever-it-is to understand you. I don’t get it. I can’t.
And that’s ok.
That’s what I’m coming to terms with. It’s ok. It’s ok that I don’t want to make small talk, and it’s ok that you do. There will be times when I will. I hope there will be times when you won’t.
I’ve been working on analogies. I like analogies. They’re pictures that you can lay over life to try to make sense of it.
Since finding out who I am, I have been struck by several things:-
When you try to describe what being Autistic is, everyone says, “Well I do that too.”
People say this because it’s hard to describe being autistic. Often you end up clutching a collection of behaviours, such as social exhaustion, hating the phone, wiggling your feet.
And other people say, “I don’t like using phones either, and I wiggle my feet, and I’m shattered after a night out, maybe I’m a bit spectrumy!”
You look at them and something inside dies a little, because you’ve not communicated what you wanted to, and you really don’t want to have to tell them about the time when you were walking down the corridor, and suddenly there was too much noise from all the people, and your head started spinning, and the lights were wrong, and the space was wrong and everything started shutting down on you, because that behaviour makes you vulnerable.
So you smile (because that’s what people do), and you try to stop the conversation, because now you’re upset at yourself, and you can’t maintain eye contact well when you’re upset.
(I say eye-contact! I mean it’s hard to even look at people’s noses, or anywhere near their faces, when it gets too much)
It’s ok. It’s ok that I cocked up because I focused on the behaviours and not the causes. It’s hard. It’s complicated.
How do you explain to someone what it’s like to not have something that you don’t even know exists?
It’s like trying to describe silence to someone who has always lived their life beneath a roaring waterfall. They won’t hear the water. They’ll take it for granted. They’ll say, “This is silence.”
How do I describe a lack of social processing to someone who doesn’t know they do it?
How do I describe how much active processing I put in to everyday tasks, which they can happily do on automatic without noticing?
Did you know that when asked a complicated question, most people will look away from the questioners face, because it frees up processing power? Processing that they don’t even know happens. They will be studying expression in great detail, without knowing it. It’s like having a computer that just provides the answers.
My computer tells me what it sees. It gives me a literal view of the face and its changes. I can use these to compare to what I have learned. I can use my stored knowledge to try to work out what you are thinking, what I should do, what it is you need from me.
But my computer doesn’t give me the answers. Mine gives me problems to solve.
When you’ve spent a lifetime pretending to be normal, you shouldn’t be surprised that people think you’re not autistic.
People have told me how normal I am. How they don’t see any part of me that is different. I think I should assume this is a compliment. I’m sure it’s meant as one.
To me it’s a mirror showing just how much effort I have put in to being someone socially acceptable. Each aspect of me that is deemed “presentable” is an effort. It’s a sort of me. It’s a kind of me.
But it ought not to be.
Oh dear lord the self doubt. I never thought I could accuse myself of not being who I deep-down know I am, in so many inventive and insidious ways.
Post-diagnosis has been a roller-coaster of elation and depression and acceptance and reluctance and “I get to be me forever?!” (Said sometimes joyously and sometimes in pain).
I am autistic.
I am an autistic woman.
I am an autistic mother, person, wife, daughter and so on and on and on.
I’ve taken against using Asperger’s to describe myself, even though it’s accurate, I think for some reason it feels euphemistic.
I don’t like euphemisms.
I don’t want a sanitised, socially acceptable me anymore. I want to be the me that I am. The me that I have always been.
Because I am socially acceptable. I might be a bit peculiar if I let it all hang out, I might seem a bit less self-assured and a bit more terrified, but that’s ok, isn’t it? Other people get to break those rules? I may not be good at breaking rules, but maybe I can add new ones, a few sub-clauses here and there.
It’s what I’m striving for. Being a bit more me. Now is the time.
So today I didn’t hide my hand in my pocket when I needed to stim. It’s the little things.
Tomorrow I will contemplate world domination.