Disclaimer: This is a deeply personal blog coming from someone who is really struggling right now with being autistic. It is not a wide statement saying autism should be removed from anyone. It is my own journey and struggle based on my own autistic experience. I do not speak on behalf of the autism community, just for myself, today.
I’ve always said I’d never change who I am, I’d never ‘remove autism’ from myself if I could. And yet, today sat here typing this, if someone offered me a pill and said it would cure autism, would I take it? Yeah, I would.
I advocate that autism does define me and it is a part of who I am, and that’s true. But there is also in my own mind a clear distinction between autism driven behaviours that are outside of my control, and my own self.
My non-autistic self is not perfect. I get tired and grumpy and short fused after a tough day at work or a sleepness night. Normal human hiccups that people brush over and get passed.
My autistic self is certainly not perfect. I go non-verbal, hit meltdown, hurt myself, amplify situations that others would not, and generally struggle day to day. Not normal behaviour, not things people are willing to brush over and get passed.
But I live with both. I am both. They affect each other and intertwine within me. Parts I can try to do better in (be less grumpy, have more patience), and parts outside of my control that I can never do better in (react better to change, don’t hit overload).
I am judged for both. Because I am both. It would be unfair to ask someone to purely judge me on my non-autistic self because they are affected by both.
But that begs the question of how it is psychologically bearable to be judged for behaviour I literally can not control. I can go over and over a reaction to change. I know a normal response. I could pick it apart and learn from it. With a rational post change mind, I can think, ‘I will do better next time’. But next time will come, and the change will hit and my mind will fall off a cliff again. Because I cannot do better, I have no better. I have one out of control reaction to change – panic and distress.
Is it other people’s place to support me through that? What if they are also annoyed at the change? What if they want my support in that moment? But my mind is not my own? I am not Rosie in that change triggered state, I am a slave to autism. A reaction has hit, and I can not bring it back until I see it through.
Is it fair to ask for patience every time? How do I do better? How do I learn from a situation and fix it next time when I don’t have control of it?
I want to learn and grow and be the best human I can possibly be. I want to be loving, and supportive and never make anyone’s life harder. I am 30 and I have a long way in my non-autistic self to go. To learn to be patient, to think of other perspectives and grow. I am 30 and autistic, I will never be able to change certain behaviours.
I work hard to put coping mechanisms into place, to rationalise autism, plan for it, prepare for it, mitigate its affect, especially on other people. But I can not remove it from me. If I could I honestly think at this point in my life I would.
What will I lose in my life because of autism? What will it take from me? At a certain point most people lose patience with autistic behaviour. They want it to stop, want the autistic person to control it more, want an easier life. I want an easier life. I want it to stop. I want a consistent and stable life instead of the rollercoaster I get with autism.
I can not stop being autistic. I can not remove the autism. I just sometimes really wish I could. I wish I didn’t live a life dictated by autism. I wish I never had to hear the word ‘autism’ ever again.
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