Earlier this week I posted a piece about my son Julius’ autistic journey from being badly bullied at school to winning a main part in BBC’s medical drama Holby City. The piece has already had well over a million hits on my facebook page. I think the reason it struck a chord with people is because for once, here is a positive story about autism.
Parenting a child on the autism spectrum is as easy as skewering custard to a mid-air boomerang. I sometimes feel I didn’t give birth to my son but found him under a space ship and am raising him as my own. There is no Owner’s Manual. It’s like trying to put together a giant jigsaw puzzle without the benefit of the coloured photo on the box lid.
Jules was diagnosed with autism aged three. Battling bureaucracy to get educational help, facing up to school bullies, placating irate teachers, (putting an autistic child into mainstream school is as pointless as giving a fish a bath) apologising to judgmental parents, trying to explain to your cherished child why he’s different, yet instilling in him a sense of self worth – is it any wonder that the parents of a child with autism could qualify for a PH.D in angst.
Hey, if nail biting adventure is what we parents had been looking for, we would have tried jumping over the Grand Canyon on a motor bike or diving with sharks, right?
When the doctor made his diagnosis my darling son suddenly become a plant in a gloomy room and I knew that it was my job to pull him into the light. For days after that dark diagnosis, a San Andreas of fault lines ran through my psyche, coupled with an overwhelmingly protective lioness-type love, my claws curled inside me, waiting, watchful. One thing was clear, I had to stop my son from tumbling through a hole in the world, like Alice.
A mother’s first overwhelming emotion is denial. I bankrupted myself seeing every medical expert on the planet. I hate to think how many doctors’ children I’ve now put through University. My son had so many tests he must have thought he was being drafted into the elite moon mission astronaut programme. (When visiting a private doctor, be sure to note carefully where you leave your car, because you will probably have to sell it to pay off their astronomical bills.)
Then came guilt – the gift that just keeps on giving. Oh how I tortured myself. Was it something I ate whilst pregnant? Soft cheese? Sushi? Was it the glass of wine I shouldn’t have drunk in the final trimester? Was it something I should have drunk – like pureed beetroot? Was it something I didn’t eat? Organic tofu, perhaps? Or maybe I ate too much? I hadn’t just been eating for two, I had been eating for Pavarotti and his extended family… If only I’d feng shui-ed my aura in yogalates classes chanting to whale music like Gwyneth Paltrow and Organic Co.
Anger took over next, mostly towards the farcically solemn, flat-shoed educational psychologists with their expressionless expressions. The way to recognise an expert is by the clipboard. A parent needs United Nations headphones to decode what these clipboard-wielders are saying. For example, “Your son has global delays” – translates as “You might as well put yourself up for adoption immediately because your child will never be normal.”
….Twenty two years later I now know that there is no such thing as normal and abnormal. Just ordinary and extraordinary. And that people on the autistic spectrum have a literal, lateral, tangential logic which is truly unique and charmingly disarming. My son lost his language aged thirteen months and then didn’t talk again till pre-school. But when he did start talking what he had to say was so interesting. “If onions make you cry, are there vegetables which make you happy?” he asked, aged four. “What is the speed of dark?” he wanted to know aged five. Every day he asks me questions I can’t answer. His lack of filter also means that socially, I sweat more than Paris Hilton doing a sudoko!
With my son’s permission, I’ve written a novel based on my roller-coaster ride raising a child with autism. I hope the book is pithy but also witty – as no parent would survive this journey without strapping a comedic shock absorber to the brain.
What I’ve learnt from coming out in public about Jules’ autism is that trying to cope on your own, is as effective as standing up to Voldemort with a butter knife. In other words, it’s always better to shine a light into a dark corner. And embracing his condition has been the best thing Jules has ever done, as it’s led to a wonderful acting career. And thank you to the BBC and Holby City for thinking outside the neurotypical box. Let’s hope it inspires other employers to follow suit.
Meanwhile, autistic kids often end up with a self esteem lower than Kim Kardashian’s bikini line so it’s important that we never stop telling our children how truly special they are.
My son often tells me that he feels he’s drowning in his own brain waves. I wrote “The Boy Who Fell To Earth” as a kind of literary life raft. If you’ve enjoyed the pieces I’ve posted about Jules, I hope my little novel might also give some emotional sustenance and comedic succour.
Best wishes, Kathy