I have been reading and thinking a number of different things about disability across the internet this week, and in smallness of the world in which we live. In a week in which news spread about a sweet faced ten year old boy in Texas who was set alight by his supposed friends, and in which I read dozens of differing opinions about the right or not of Down Syndrome people to even exist, let alone live fulfilling, autonomous lives, I was glad to end on this story about an American mum living in Germany, and her little boy, recently diagnosed with autism. It is a photo essay, prefaced in this article with the quote

“What a wonderful gift he is to me, his family and this world.”

As the mother of a little boy who is autistic, I see too many negative portrayals of autism, and I understand that this comes from the medical model of disability on the one hand, and in the case of autism, a deep misunderstanding and gap in the knowledge of what it means to be an autistic person. Though most people understand that autism operates on a spectrum, they may not understand exactly what that means, and they probably most certainly fail to grasp that there is no one definition of an autistic person because they are not made entirely of their disability, they are made firstly of themselves, and so they are as different from each other as every one else in the world is unique from everyone else.

Bondi 1

When I make the always deeply disturbing mistake of reading the comments section on anything remotely connected to autistic children, I come away with the phrase ‘those kids’, as a negative collective, from whom other children must be protected (as though all autistic children are violent. They’re not, and often when they are, it is in response to unbearable sensory sensitivities that manifest like physical pain).

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There is no “those kids”, autistic children may share some common characteristics, in a similar way that some neurotypical children like to push and shove and others like to sit quietly, but their autism is individual to them. Boodi, for instance, has no issue with changes in routine, does not display obsessive behaviour, and is extremely affectionate and happy. He is no stereotype, because the stereotype is a construct of limited knowledge. The little autistic girl who lives next door to you is doubtless quite different to my child.

Bondi 2

One day at the park with Boodi about a year ago, he got to the top of the slide and a smaller boy was sitting there with his mother. Before I could stop him, Boodi gave the boy a gentle shove, not even enough to push him down the slide. His mother turned to him and sternly told him, “Hey! No pushing!” and when I explained with the words, “Sorry, he’s autistic,” she wrinkled up her face and answered in a petulant voice, “Oh. Is he?”, and I realised the hugeness of the gap between the words that I spoke and the words that she heard. In my two words, informed both in Boodi’s particular autism and in some autistic traits in general, I was telling her that he didn’t have the social skills to know what turn-taking was yet, and that he also saw her son as just an object sitting in the way of his own desire to go down the slide. I was saying that he wasn’t exhibiting malice in any form, but apologising anyway.

I can’t say what the other mother heard, I can only assume that it was not the meaning that I have described above. perhaps it was the oft repeated opinion that “those kids” get away with everything because of the label of their diagnosis. Perhaps it was that I was making excuses for my “bullying” child. I only know that although she didn’t say anything else, she wasn’t making any allowances, despite the lack of harm done.

Boodi 3

Although I cringe from the term “special” when describing my child or any of the other autistic children that I have met in the last 18 months, I would prefer to see any autistic child, all autistic children described as a gift, as the mother in the photo essay above does. I don’t mean a gift by way of compassion and empathy and lessons that autistic children might supposedly impart to their families and carers by way of making us try harder, I mean simply in their own, neurodivergent selves, they are a gift, full of the potential that we all are, especially when we are young.

My child is not a burden, or a tragedy. He is a gift. He sings and draws, and loves us and he learns so much every day. He lights up the world with his smile. He will have a fulfilling life, despite the fact that the world around him disadvantages him by being built for other people and excluding him in so may ways. He just needs you to understand that he perfect as he is, and that he is just himself, just a beautiful little Boodi-Dot kid, growing and changing every day in every way, as four year olds do.

Bondi and bunny

Linking up with Kylie Purcell for #IBOT