The daily commute to school can be a boring one. In our car this week, for the forty minutes ride Charlie has banned songs. He says he doesn’t like music with words anyway. I think this is because the words are too fast for him to catch their meaning, like a crowd of people rushing past him. Even if it is a slow sad song, which he says are bad because they are G minor. According to Charlie, G minor encompasses all that is wrong with the world. Logically anything that pleases him is G major. It is one autistic trait that I love, one that makes me roar with laughter. Some kids might say the number nine smells like hot dogs and others say Wednesday feels spiky. So after turning off the classical music (instrumental is acceptable) we often travel in silence until like today when an ambulance goes past, sirens sounding. Charlie turns his head to me sharply and asks in mock horror, “Oh no, who’s hurt?” I tell him its probably the butler villain from The Aristocats that we watched last night. “What happened to him?” he asks eyes widening. “Well I think he probably tripped up and his head fell into a bucket”. This is acceptable and he screams with laughter. “Do the siren, do the siren!” he shouts. Trying hard not to giggle whilst holding the wheel I proceed to do my best impression of an ambulance in full flight. I glance over at Charlie who is beaming, shivering with pleasure at the sound before screaming for the joy of it, the verbal equivalent of a lamb kicking it’s heels into the spring air.
It’s funny how some sounds make him close his eyes and smile, nodding his head in a yes. Some sounds he finds so delicious it’s as if they turn him inside out and he squirms and squeals in delight. When I enjoy the sound of a bow stroking a cello or the sound of seagulls playing in the mist of crashing waves, I smile or sigh but Charlie is physically moved and his excitement crackles like electricity underneath the surface of his skin.
And then there are the sounds that do the opposite for him. Particular songs, crying babies and anything too loud sees him clasping his hands over his ears, shutting his eyes closed tight, humming over the noise to block it out. My sensory list for his likes and dislikes is a long one, not just auditory but also includes touch, taste, smell, visual and his vestibular sense of where his body is in the space around him. Even if I manage to lock it down things are subject to change. One sound will suddenly get changed from the like to the dislike list and vice versa. Each individual, especially each autistic individual is somewhere on that sensory scale, each one has different likes and dislikes. We may be made of the same stuff but we are certainly all wired up differently. Which brings my thinking back to cancer.
As I have finished my role of ambulance and glance out the window at the fields of sheep flying by, I think to myself that you might be able to say that there is a 60% chance that an autistic kid would like the sound of a piano and a 40% chance that he wouldn’t. That’s just the way that particular body is made. And I guess so it is with cancer. A 40% chance you’ll survive to live five years after treatment and a 60% chance you won’t. Just like a lottery. And no matter what you might do to try to help tip the balance in your favour, perhaps that’s just how that particular body is made and trying to make sense of it is like trying to bottle starlight or find where the universe begins and ends. It would be totally G major if we could.