You ask me “Does your eldest child have autism?”
“Yes.” I reply.
“I’m so sorry.”
My stomach lurches. No. Please. Don’t say you are sorry. I know you mean well. I was once like you. But don’t apologise for the gift that is my boy – for any part of him. I know that the pain and suffering of children is the world’s greatest sorrow, but it is not autism that causes him pain.
I used to think a child with any disability must be a tragedy. I used to think that the parents of such children must long for them to be whole. But your idea of wholeness is skewed by what you are, by what you know. Birds cannot breathe underwater. Fish cannot fly in the sky. We do not spend our time lamenting the lack of ability in either. Nor do we assume that the fishes long to fly, or that birds feel incomplete, soaring through the air.
Fish flounder and writhe on the shore not because they are fish – but for the absence of water.
I know you want to express something – you are compelled to respond, to show you care. I know that it is a subject that makes those without experience awkward and uncomfortable. You fear to offend and an apology is simple, closed. It risks no further chance of misstep. I am not offended but please – let me explain.
My boy cannot run, jump and climb like other boys. He cannot dress himself or drink from a cup. Simple tasks we take for granted require great effort.
But he can list the wonders of the solar system, in perfect order. Planets and moons and stars roll off his tongue. They must all be perfect. Io and Ganymede and Calisto and Europa. His perception of them is governed by rules that are as absolute as the rules of the universe that make them spin. His rules must be flawless, predictable – like gravity. And they are just as beautiful, in their perfection.
My boy finds it hard to communicate. He has vocabulary – but the mysteries of interaction and communication must be learned, slowly, painfully. They will never come naturally. Sometimes he cannot tell me what he needs and his frustration and despair tumble out of control.
But he loves music. He relates to the sounds of instruments more than lyrics and voices. He mimics the drums and the bass guitar and will tell me which instrument is which, his whole body tense with joy as he imitates them. Listening, singing, dancing –they are not enough. He longs to be the music.
My boy cannot cope with disorder. The pressures of unpredictability take an awful toll. When there are changes, he is lost to me, in anger, terror, or blankness. I do not know which is hardest to watch. But I know it is my privilege to hold him, to protect him, to wait – until he comes back.
He is acutely honest. He is sensitive. He is loving. When I ask him how much I love him, the answer is always “Do you love me as much as the whole world mummy?” and I must always reply, “Even more than that, gorgeous boy.”
He adores word games and strange vocabulary and the absurd. Deliberately muddling words will make him laugh until he shakes. He loves to make his baby sister giggle. I have known no purer joy than watching the delight, mirrored in their faces.
He is perfect.
So, if you must feel sorry, feel sorry for those who do not see what I see. Feel sorry that the world is set up for fish, when he is bird. Feel sorry for those that will shun him, or fail to understand him, or even mock him – for strengths and weaknesses that seem so different to their own.
It is their loss, their tragedy. For their perception that he is less, that he needs an apology, is based standards that are not real. They are an illusion that seems real because the rest of us make it so by our actions, our attitudes.
You do not know what to say. And so you say sorry. You say, I don’t know how you do it. You say, you must be so strong. But my child is not a burden. He is the light of my life. And he would be yours too, if he were your child. Strength flows like water, for those we love. Yours. Mine. My spirit and resilience are no greater than yours.
So if you feel an apology about to escape your lips, stay silent. Or ask, instead, what is he like? What does he love? What makes him smile? What makes him laugh until he shakes?
Because I cannot, and will not, be sorry for any inch of him.