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.
