Saturday 9 April 2016

Journey to Understanding Autism

I'm Ann.
I'm autistic. So is our son. Autism is not 'incompetence'. It is a brain difference from birth. Each one of us unique and with something to share.
I didn't use words to communicate for the first ten years of my life. I could only repeat phrases I heard. It made no sense. I thought only in pictures. I understood everything said, but in picture form...and had no way to relate it to body language, face expression, eye contact, social stuff generally. The social 'context' was missing. People didn't notice I was autistic. They thought I was just 'rude'.
For the next ten years, I couldn't speak for more than a small bit of each day. They didn't notice that I was autistic, I was just 'rude', you see. Or 'quiet'. Inside, trapped in a body that wanted to speak, but could not.
I'm still partly non-verbal, when stressed. When it happens, often people don't realise, and think I'm just rude.
I have major sensory processing difficulties. When I can't access an event, often people think I'm just rude.
I cannot recognise faces. When I walk past a person, they often think I'm just rude.
That's the awful, draining thing about autism. The instant assumption that I spend my life being rude.
The loneliness and anxiety that results.
I can speak a lot sometimes, now.  But now, I'm sometimes told that this means I'm not fit to speak about autism...because I can speak. Irony.

When I ask that people give us a chance to huge cost to ourselves...rather than speaking for us...I am told by a few that this is rude too. How dare I. How insulting to say that I and my friends and family and autistic colleagues would like to share our authentic experiences. Not as a sole voice. As one authentic voice with much to share. And with others to listen to, too.

 Surely I know that 'their child' cannot ever communicate and that I am Nothing Like Their Child. And that theirs, as non-autistic people, is the proper voice for their child. I am insulting them. It is all about their feelings. How DARE I. HOW RUDE. After all, I am only one person so what could I know, eh. With capital letters, sometimes with swear words. Sometimes as a small angry mob, cheering each other on, to humiliate and silence me.

And, my voice is silenced. In fear.

They have not understood autism, at all.
Their child will not benefit from what they would have learned from me and all the other autistic courageous speakers and Typers.
Their child's world is not better for this.
It is impoverished.
So many autistic adults commit suicide, to get away from the hate. Or die early from the stress and loneliness.  We know this from the new research.

This is the future they create for their own children.

I work with wonderful autistic friends of all kinds and ability ranges. I am a professional, speaking at national and international conferences. Alongside non autistic friends. They learn from me and the others. That's the idea.

Nothing about us, without us.

And all autistic children communicate. Find out how, and what it means, from the autistic adults.

Meantime, glad of friends who stand up to those who yell in our faces when we try to be heard.

It's a journey, learning about autism. If you believe an autistic adult is being RUDE, you have only just begun that travel. Sit back, and listen, and learn.