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The Changing World of Autism – a generational story

Bill started bouncing and flapping. The Helper told Bill to calm down. Muma said, “Its ok”. Then she looked at Bill and said, “I like that you are feeling happy this morning”. Bill flapped harder and said, “Bill going to the pub. Bill going to the pub”!

Across the road from my school there is a large red brick building on a large plot of land. It is a home for grown-ups with disability, but we never really see anyone outside, except for one man.

Most mornings, at the same time Muma and I arrive at school, a man from the home walks past us. He always has a helper with him. And he always gets excited when he sees Muma and wants to shake her hand. I always hide behind Muma because I don’t want him to shake my hand.

This has been the same routine most school days for five years.

Every morning, when he puts out his hand for Muma to shake, he says the same thing, “Going to the pub”. He never says any thing else, except once, sometime last year, he said “Hello”.

Yesterday, when the man said he is going to the pub, Muma smiled and said to have a good day, as she usually does. Except she did something different too, and so did the man. Muma asked the man his name.

The man grabbed her hand and started bouncing up and down. He let go and then started flapping his arms like a seagull, while bouncing around us in a circle. The helper said to him, “Stop! Calm down!” She sounded annoyed and told the man to stay still.

Muma said, “Its Okay”. Then, smiling at the man, she said, “I like that you are happy that I asked your name. I’m sorry I have not asked before now”. The man flapped and bounced even more. He kept saying, “no name, no name”.  He seemed really excited.

The Helper said his name was “Bill”. She said Bill doesn’t know how to say his name. Muma looked at Bill and offered to shake his hand again. When he took her hand, she said, “I like the name Bill. Everyday now, if you want, I will call you by your name”. Bill bounced and flapped some more.

The Helper told us that Bill was 62 years old. She said Bill has Autism and that when he was three years old he went to live at a place for kids with disabilities, and has lived in different “institutions” since then. She said Bill had never gone to school.

We saw Bill again this morning. He started flapping and waving before he even reached us. The Helper kept saying to Bill, “Stop! Calm down!”.

Muma said to the Helper, “Its Okay”. Then she looked at Bill and said, “I like that you are feeling happy this morning”. Bill put out his hand for Muma to shake. Then he said, “Bill going to the pub”.

The Helper looked really surprised. She said, “I didn’t know Bill could say his name. I don’t think anyone has heard him say his name”.  I thought to myself, “no-one ever hears me say my name either, but that doesnt mean I don’t my name”.

Muma said to the Helper, “Maybe no-one has ever asked him”? Then she looked at Bill and said, “you have a great day Bill. We will see you tomorrow”.

I think Muma is right. I think when Bill got excited yesterday and kept saying, “no name”, he wasn’t saying that he didn’t have a name, or that he didn’t know his name, but that no-one ever asks him his name. I think he was excited because Muma had asked. I bounce and flap when I get excited too, but Muma doesn’t tell me to stop or told to calm down.

I was born only 10 years ago. It makes me sad to think that if I had been born when Bill was, I might have had to spend my whole life living with strangers in different places and never have the opportunity to feel safe, go to school, learn and become the best person I can. I feel grateful that I wasnt born when Bill was born.

I think maybe that Bill’s life, and my life, is what the difference is between “Autism Awareness” and “Autism Acceptance”.

Autism Awareness is noticing and knowing that Autism and Autistic people exist, but still believing that communicating differently, and sensory and thinking differences are things that needs to be stopped or fixed, or seeing us as someone who needs to be sent away, hidden, ignored.  Just like Bill has been his whole life.

Autism Acceptance is the “doing” after awareness. To accept Autism is to use your awareness to then learn about how to include Autistic people as the capable and equal people we are, just the way we, and to do those things.

Bill was born, and has spent most of his life, in a time of Autism Awareness. I have been born, and lived, during a time of the world moving towards Autism Acceptance.

I hope when I am Bill’s age, children born Autistic will be born into a world where bouncing and flapping is thought an equally okay way to say, “I’m happy”,  as saying it in words is. Where entire populations know (and “believe”, because knowing is different from feeling it to be true in your heart) that communicating through ipads or sign language or writing, is as equal as talking with your mouth. Where every school and every work place have spaces for spinning and bouncing and taking time out, just the same as they have toilets.

Mostly I hope when I am Bill’s age,  instead of Autistic children being taught the impossible – that they must do, and be like children who are not Autistic, that children who are not Autistic are instead taught how to communicate differently, different ways of thinking and doing, and how to understand, accommodate and play with Autistic children.