I wasn’t planning on writing anything today. But, as I haven’t been able to avoid the topic of autism anywhere on Twitter or online, I thought I’d add my views on this.
Awareness of conditions and how they affect people is never a bad thing, I suppose. But those of us living with autism certainly don’t need to be made aware – it affects everything we do.
Sometimes all I want is to be able to pretend I’m ‘normal’ – whatever that is!
So the focus on the condition – and the condition is everywhere at the moment – is spectacularly unhelpful.
And most of the awareness raising seems to be about either children or young adults with the condition. Or the problems with delays to diagnosis.
But children and young adults with autism become older adults with autism. And there isn’t that much out there about us; those of us who have managed to live, undetected, amongst the rest of the world for years. Those of us who had already built a life pre-diagnosis; already found some ways to cope.
For me, getting my diagnosis was both a relief and a curse.
A relief because I no longer have to pretend that the – very real – differences I have don’t exist.
A curse because people now tend to see the condition, rather than the person. They put me into a box labelled ‘autistic’ and can’t seem to hear me screaming to get out.
An awareness day isn’t going to help with that.
And I’m one of the lucky ones in terms of the support I can get. Many adults on the spectrum don’t have that. But even with that support, it’s sometimes difficult to cope.
I can cope with being autistic.
I can cope with what that brings: the sensory difficulties, anxiety and social challenges.
I can’t cope with being put into a box; with the assumption that because I’m autistic my views don’t matter; that other people know what’s best for me.
So, as it’s World Autism Awareness Day, here’s what I’d personally like people to know about me as a person with autism:
I am a real and unique person, with my own thoughts, opinions and feelings. Autism is a part of me; it is not who I am. I have a mind of my own. Sometimes I can be a pain in the arse. Sometimes I can be surprisingly kind. I have my own quirks and difficulties, the same as you do. No person with autism is the same as another – so don’t assume that, because something is right for someone else, it will be right for me. And – most importantly – please remember that I am a human being. Just like you. No better, no worse. Different in some ways. Similar in others.
I wish more people understood the ‘person’ bit in ‘person with autism’. Maybe that’s something for next year’s awareness-raising day…