My son is not a problem.
He is not a health and safety risk, a difficulty to manage or an obstacle to overcome. He is not a disability. He is not a neurodevelopmental condition. He is a little boy who fears and loves, who laughs and cries.
His behaviour is not challenging. To label it as such hides his worth, conceals his charm, his kindness, his vulnerability. When he rants and wails, when he lashes out at the world, he is the one who must overcome a challenge. He must adapt to things he cannot control. The world creates problems for him, not the other way around, though we try so hard lessen the burden for him. The language that is used to describe his struggle, it is inherently unfair.
He is not a drain on resources, a budget void to be filled, a form to be filled out. He is not a statistic.
He is exceptional.
A tuft of hair, flecked with gold, stands up at the back of his head. Try as we might, we can never get it to lie flat. It always stands to attention, is always a little out of place. The way he speaks is different to other children. Sometimes, it is precise, factual, full of repetitions, patterns and expressions that make him sound older. When there is something important to say, he stammers. You must pause – be oh-so-patient – for his reply. His ideas are unconventional and full of wonder. It takes time for him to process what he wants to say into words, but it is worth the wait.
At other times, he becomes a jumble of nonsense – made up words, learned phrases, noises and verbal ticks. My son does not run around or play fight. He seldom talks to other children, seems always lost in his own world, always quiet, cautious.
When he is excited, he trots on his toes, flapping his hands high up near his head. If he is anxious, he tugs at his ears and bites his lip. The slightest unexpected thing can cause him pain. His bottom lip trembles and he strokes my arm to feel safe. Huge blue eyes, heavily lashed, look up at me and seek my comfort.
To others, he may appear rude. The expected responses of conversation are not his natural reflex. He seems to ignore, will not say hello, may not respond to your call or answer your question. If you are not in his world, it is hard, sometimes impossible, to penetrate it. But when you can – oh when you can – it is a privilege and an honour to see the world through his eyes.
There is no cruelty in his heart. He is never aggressive, never malicious or spiteful. If he seems so, it is only because he is consumed with frustration. If I mention I am cold, he struggles to bring me a blanket, tripping over his own feet–
“Mummy, if you are cold, a blanket will make you warmer.”
If I say I feel ill, he hovers near me, anxious for me to be well.
“Mummy, I will look after you and you will feel better. Are you better now mummy?”
When asked at nursery if he has a best friend, he replied that his best friend is his little sister.
He likes to explain his dreams –
“I was on a very tall hill and I fell down. But I was ok because it was a dream. Dreams aren’t like real life. They are in your head.”
He loves nonsense. The wonders of the universe make him trot and stammer. Sometimes, he dances along to the songs in Sesame Street.
Every day, we are concerned for his happiness, concerned for his health, concerned for his care and education – like all parents. But he is NOT a concern. He is not a challenge. He is innocent. He is a human being. As much as I want society to see autism, to accept autism – to do that, you have to see to see it, and then see beyond it.
I need the world to see past a problem.
I need the world to see my little boy.
For more posts about autism acceptance, you may like to read: