My boy does not fit easily onto the spectrum that most people imagine. He speaks and so is labelled ‘high-functioning’ by most – though that is not accurate. He was diagnosed early, at just two – way before the average child with Asperger’s. He needs full-time one-to-one support at nursery and will at school. He struggles every day with severe rigidity of thought and sensory processing issues. His motor delays are significant. Stimming is like breathing to him and the times when he is still, not seeking sensory input, are rare. It is likely that he will need help and support, in one form or another, for his whole life.
And yet, sometimes, he seems to explain complex ideas as if he were an Oxford Don. Sometimes, his perception is astonishing.
My son is sobbing.
A few moments ago, I asked him a question. It was simple enough – the kind of question that parents ask their children every day – “What did you have for lunch?” “Where are your shoes?” “What would you like for tea?” I could ask him how a toilet flushes, or how popcorn pops, or what happens to cake mixture when you put it in the oven and he would tell me, over and over, energetically and enthusiastically. But when I ask him what he wants for tea, the tears come.
At first, I do not realise that it is the question that has disturbed him so much. I assume something else must be wrong and so I interrogate him further – “What is wrong?” “Why are you crying?” “Please tell me, bubba, please?”
But he cannot. My questions only make it worse, and so I hold him, until he is calm.
Several minutes later, when he is finally eating some spaghetti hoops (a guess but a favourite that is usually a winner), he speaks again, sorrow lingering in his voice –
“Sometimes, mummy, the words get stuck on the sticky tape in my head and I cannot make them come out.”
My stomach flips – like going over a bump in the road too quickly.
My son just explained his communication issues with absolute, perfect clarity. But he could not tell me that he wanted spaghetti hoops for tea.
The irony is remarkable – exquisite. There is an aching beauty in that moment, to hear him give voice to his struggle so flawlessly, to know he owns and understands it, and the tender age of four.
Every so often, his perception takes my breath away.
There are dozens of reports about my son that say he becomes agitated if other children get too close. But I like his explanation better:
“I am not like other children. I am powered by invisible spikes. They can hurt people sometimes, if they get too close. I cannot help it, when they hurt.”
For some, the sticky tape is stronger. For some the spikes dig deeper, stretch further.
But my boy has taught me to never assume that absence of speech equals absence of understanding, never assume that pain is aggression, that difference is deficiency.
My son is already learning that he is different.
And I am still learning, every day.