Friday, 17 November 2017

A New Diagnosis

This is an attempt to process my feelings. This is about how there is no one autistic type. This is about the Autistic Unicorn. We all know that unicorns are a myth, and yet we persist in pretending they exist. The same is true of the autistic type. There is no one autistic type. There is a multitude of characteristics and co-morbids which come together in unique combinations to make every autistic person unique. So in society there is the Autistic Unicorn. There is the myth of autism, and there is the reality.

For a few years we’ve been a family with one autism diagnosis; George’s. Then I got my own to go with his. This week we achieved our third; Oscar’s. (Please remember, these are not their real names.)
Oscar is my first-born, and I’ve always felt that he was unique in some way; unique outside of the umbrella of everyone’s intrinsic uniqueness. He was a baby who never put anything in his mouth, a baby who didn’t babble, a baby who would actively fight to keep himself awake by scratching and striking at his own face. But he matured into a child where so many of those things that made him unique were kept under cover. He has always been very discreet in his difference. Quiet. Polite. No trouble at all.
George’s autism is obvious. When he can’t make a choice in a shop he ends up lying on the floor having a meltdown. He attends a special ASD unit in school because no one else can teach him. If he’s subject to attention he will hide under chairs. He will shout or scream when he becomes too frustrated. One can point at him and say, yes, there is an autistic child. He isn’t like every other autistic child, but you can still place him under that umbrella.
Oscar keeps his head down. He generally does what is asked of him. He complies. He dresses himself in the morning. He can make a choice as to what he wants for breakfast. He acts as the diplomat between his brothers. He can go up to workers in the supermarket and ask where something is. He can hand over money in a shop. He can function.
My conviction for a long time has been that he is autistic, and my fear was that I was the only one who could see this. I was the one who had observed him intimately from birth, who could add up the clues, and who could understand the difficulties that he hid. After all, that was my own mode of autism. Head down, don’t make trouble, continue being bewildered and let down by the world.
We waited a long, long time for his autism assessment, but finally it came. I went in armed. Child health record, school reports, speech therapy reports (as a young child he had, at times of stress, a severe stutter.) I spent the whole interview explaining myself. I know it doesn’t seem obvious, but… We went through what he was like as a baby and small child compared with what he is like now. Sensory issues. Communication issues. Development issues. My concern was that his autism was so hidden that he would suffer in school. My concern was that it was so hidden that he would be turned away.
Meanwhile he was undergoing tests in another room, tests I had done during my own assessment; a puzzle to put together, a book to read and describe, a story to tell with inanimate objects. He was intensely anxious about this situation. Perhaps that helped, in a way, because his autism became more obvious. Stimming, becoming non-verbal, becoming very discomforted by the attention.
In the end we all came together for the decision. They have streamlined things so instead of waiting for weeks a group of people do the assessment and then make a decision on the day. And they had decided he was clearly autistic. Not just that he was autistic, but that it was obvious that he was autistic. It shone through. They went through their findings and he ticked every box. The relief was overwhelming. Finally everyone else had seen what I saw. We are still processing this wonderful news. Now he can get help in school. Now he can understand why he’s different.
When someone asks why there’s an autism epidemic nowadays, here is your answer. Here are the people who spend every day passing as neurotypical. The people who manage just well enough in school and society and the world of work, but who, under the surface, are suffering depression and anxiety and that terrible sense of not being good enough, not fitting in, just not being right. When we recognise these people the statistics for the presence of autistic people go up. But we have always been here. We have been misdiagnosed or ignored or shunned or misunderstood. But we have been here. It’s just that now our voice is louder.

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