Autism: A few words to the parents, teachers and carers that I infuriated

Autism: A few words to the parents, teachers and carers that I infuriated

Receiving an adult autism and ADHD diagnosis has made me do a lot of reflection, so to all of those who tore their hair out whilst trying to help bring me up, here are some things I would like you to know:

I am not unwilling to reach my full potential, I have grown up in a world that does not support me in reaching my full potential, a world that is set up for people whose brains are wired differently.

I am not lazy, I am putting so much effort into being ‘normal’ that I often have very little energy left for what you expect of me.

All those times I disappeared, went off to the end of a field or up a tree in the woods, I wasn’t trying to cause a scene, get attention. I was overwhelmed, trying to rest and relax myself, be somewhere away from all the lights and noises, in the hope I might able to be around people again.

When I wouldn’t answer questions in class, wouldn’t respond when asked why I was upset, the times I didn’t even respond to my name, I was not trying to ignore you, I have selective mutism and sometimes am unable to speak. I can promise you that every time it has annoyed you, it will have played on my mind over and over. I did not understand why this happened and I hated myself for it. It still happens and even with the knowledge I am not alone it still gets to me.

The times you came in to my room in the morning to find my bed empty, I was not hiding under the bed as a joke or a prank, I went there when I could not sleep to try and feel calmer.

When I swung on my chair or fidgeted constantly, I wasn’t trying to be disruptive, I was trying to quieten my head to be able to listen and understand better.

When I was forced into counselling I didn’t understand why, it felt like a punishment. I felt I was always being punished for something. Whether I was actually in trouble or not, the constant frustration was punishment enough without extras being handed out.

I feel like since being diagnosed I have gone through a period of mourning for all the years where I didn’t understand why I am the way I am. I do not blame the adults around me for not noticing, not knowing the signs to look for, I realise the research was not available at the time; and I know my parents were very loving and trying their hardest. But it is still so often missed, so often stigmatised, and this is needs to change. With an earlier diagnosis I may have been better able to learn to survive in a neurotypical centred world, I may have learnt coping strategies for so many of these struggles I had as a child, which I still live with daily. I know I have skills that others don’t, I know that when I manage to hone those skills I can thrive. But I have never been able to keep up the battle for long, I always crash at some point. I am beginning to learn how to keep the balance between doing what I think is expected of me, doing the things I want to do and resting. Resting is the thing I find hardest.

April is autism acceptance month, it used to be autism awareness month. I saw someone recently refer to it as autism pride month, which made me smile. We need to change the way the world thinks about autism. Despite the difficulties I live with every day, I am proud to be autistic. True acceptance is when the whole world sees us with pride and not just something they have to accept.

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