Tuesday 2 April 2013

It's World Autism Awareness Day. So what are we supposed to be doing?

Today you will hear a lot about autism. The word will be underlined, emphasised, hashtagged. People will talk about what it means and how it presents. The blogging community will be busy. Stories will be exchanged. Calls for action will echo around the world and the web.

But as I sit here at the start of this day to think about how I can contribute, I find myself rather trying to define awareness and wondering what is expected of me in that regard. I am wondering how aware I really am of something that I first learned about only three years ago when my daughter was diagnosed.

What is awareness? Is it to know that something exists? Or is it to understand what that something is? Clearly, there's a big difference. I'm aware of particle physics but if you asked me to explain its application in every day life, or to build the next Large Hadron Collider, I'd have to admit to significant gaps in my understanding that prevent me from doing either of those things.

The definition of autism according to the UK's National Autistic Society is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that it affects people in difference ways.

I am still learning how autism affects my daughter. Today, this year, I think I am better aware than I was on this day last year. On this day last year, I knew a bit more than I did the previous year. I hope that on this day next year I'll have a better understanding still.

My daughter knows what autism is because she lives with it every day. Every day she teaches me a bit more about it. As a result I can now anticipate some of her needs and support her. Other things still catch me by surprise. My ability to be aware fluctuates with my energy levels. Being aware of autism also means being aware of my own resources to deal with it. There are days when I struggle. There are days when guilt and worry dominate. There are also days when pride and delight in my wonderful, differently-wired child persuade me that life is good after all.

To be honest, I'm not sure whether I'll ever really be completely aware of what autism means. I can't get inside my daughter's life, no matter how hard I try. I can only be aware of what the outside looks like.

But here's the thing: it's not just about awareness. Awareness is just something we say to get you started. It's also about understanding and sometimes that means using your imagination. So I keep trying to imagine what the inside experience of autism is. Even though it's the hardest thing I'll ever have to do, and a lot more daunting than particle physics. Building a Large Hadron Collider from scratch would be easier.

And along the way I find that there's a third phase after awareness and understanding. There's acceptance. I have accepted autism. I have accepted my daughter's differences. It's a process I have to work on every day. Today is just another day, but no less important for that.

So here's to awareness and understanding and acceptance. And to love, which makes it all possible. Happy day, Gracie darling. Thank you for your patience and your understanding of my lack of understanding. I love you.

Piatkus are giving away five copies of my book, Grace Under Pressure: Going the distance as an Asperger's Mum, to celebrate World Autism Awareness Day. To enter the competition, click here


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  2. Ah, Sophie, you say what I'm thinking so often. :-)
    You know what I found out today? How hard my Gracie finds it to balance. It explained suddenly why she hasn't been able to learn to ride a bicycle. She went for her first riding lesson - because she loves the idea of horses and the look of them and stories about them and My Little Pony...

    But I saw her knees tremble as she stood on the mounting block and climbed onto the pony and tried to sit up straight and central in the saddle. How hard it was for her to move her leg forward to have the girth and stirrups adjusted. How much it frightened her to move off, even at a walk. I had never realised before how that particular sense is differently developed for her.

    Suddenly it explained why she screams in terror on a sledge or skis, and I felt so ashamed of myself for not understanding before. She's 8 years old and I have only just today grasped this about her.

    Autism awareness. Yes, I'm getting more aware every day, while my own Gracie waits for me to catch up with her. Bless her.

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