If onions make you cry, are there vegetables that make you happy? Is a harp just a nude piano? Is a vacuum cleaner a broom with a stomach? Is ‘mauve’ simply pink trying to be purple? The American constitution says you must pursue happiness. But how do you know when you’ve caught it? Do dogs do it ‘people-style’?… And why is there no other word for synonym?
Welcome to the literal, lateral mind of the child with aspergers syndrome. My new novel, “The Boy Who Fell To Earth” is about a single mother, Lucy, raising a boy on the autism spectrum. She often feels that she didn’t give birth to him at all, but found him under a spaceship and raised him as her own. The book could have been called “My Family and other Aliens.”
Even though my book is a fictional tale, it’s rooted in reality as my own son was diagnosed with aspergers, aged three. He is now 21. I am speaking about this for the first time with his blessing. Julius hopes that the novel will help de-stigmatise the condition and, in his words, “make people more understanding and less judgemental.” I, too, hope that the novel will be seen as a celebration of eccentricity, idiosyncrasies and difference.
Before Julius was born, all I knew about autism is that it’s a life long neurological disorder which affects how a person relates to other people, chiefly characterised by an inability to communicate effectively, plus inappropriate or obsessive behaviour. I now know that it means not getting a joke, not knowing what to say, then saying the wrong things, being told off but not understanding why, doing your best but still getting it wrong, feeling confused, frightened, out of synch, all day, every day.
I know that people will treat you as though you’re a rare, feral creature recently netted in the Amazon and still adjusting to captivity, and that venturing out of the house can feel as hazardous as Scott leaving his Antarctic base camp. Is it any wonder I became overprotective? All through Jules’ teens , every time he walked out of the door, you’d think he was emigrating. The fuss, the long hugs and heartfelt goodbyes. But how will you ever know if your child can cope in the outside world, if you never let him out into it?
The biggest worry for the average mother is that her offspring won’t eat anything which hasn’t danced on television. I have seen mothers tearing their hair out over sugar content and how to make broccoli interesting. But mothering a child with aspergers is like trying to put together a huge jigsaw puzzle without the benefit of having a coloured picture on the box. There is no Owners Manual. Social workers tell my protagonist, Lucy that being the mother of such a child, will be a challenge, but an exciting one… This is as accurate as the captain of the Titanic telling his passengers that they were in for a diverting dip in the briny.
As well as giving insight into my own and Julius’ experiences, the book is also a tribute to all the plucky, inspirational parents I’ve met who’ve shared with me their battles against bureaucracy, whilst bankrupting themselves trying to get the right medical advice. (I hate to think how many doctors’ children I have now put through University.) The mother of a special needs child has to be his legal advocate – fighting his educational corner ; full time scientist – challenging doctors and questioning medications; executive officer – making difficult decisions on his behalf and also, full time body guard against the taunts and bullying of other children.
Raising a child with special needs is also socially isolating. If only there were a Self-Help book for social lepers. As Lucy discovers, the playground sandbox invariably becomes a quicksand box, as other parents, fearing some Aids-like contagion, abandon you to a numbing silence. Unusual behavior is criticized by shop owners as bad parenting, with a crisp reprimand that you’ve obviously raised a “spoilt brat.”
You also learn that embarrassment is a luxury not afforded to you. People with aspersers, or “Asparagus Syndrome” as Jules calls it, have no filter and tend to say what they are thinking. Like the time my son asked his intimidating headmaster what he wrote on his drivers license for hair colour, seeing as he was completely bald? Or inquired of a surly, tattooed biker if he’d ever noticed that his chin looked like upside down testicles? Such candour has friends and family sweating more than Paris Hilton doing a sudoko.
There can also be dangers to this tangential, literal thinking. I was taking my daughter Georgie to drama class one Saturday and asked her to remind her big brother, then aged about 13, to lock the door before he went out to play, as burglars might steal my jewelry. When we came home to find the door ajar, my son later explained, perplexed, ‘Well, why would men want jewelry?’ When I talks about the good scissors, ‘has anyone seen my good scissors?’ he thinks there are bad ones, with evil, murderous tendencies. …When Georgie says ‘you’ll have to fight me for the last cup cake’, he squares up.
But one thing is certain. Sending your special needs child to a normal school is as pointless as giving a fish a bath. The system is designed with bureaucratic speed bumps to slow down a parent’s progress. I filled in forests of forms and saw squadrons of ‘experts’, all of whom look down their noses for a living. The technical term for this process is ‘being passed from pillar to post’.
Most kids strive to learn math and grammar. Aspergeric children strive to make themselves invisible. But the waiting lists for special schools have queues so long there are stone age families at the front, which means endless lobbying and pleading with the local council to meet the obligations of your child’s educational needs. For years I trekked here, there and everywhere, in the endless search for the right school for my son. He sat for so many tests and had so many psychological and medical assessments, he must have thought he was being drafted into the elite astronaut programme. It was only when we sent him, aged 16, to a private special needs college in America, that we saw him thrive.
In the scramble for funds, kids with less obvious disabilities like aspergers or autism, often lose out. They may not be in a wheelchair or wielding a white stick, but they still need and deserve help and the promise of a life not wasted away in a bedsit, living on benefits. After all, creativity is associated with a variety of cognitive disorders. H.G. Wells was so eccentric he had only one school friend. Albert Einstein took a job in a patent office because he was too disruptive to work in a university. Isaac Newton was able to work without a break for three days but couldn’t hold a conversation. It’s believed that Mozart, Van Gough, Newton, Orwell, Warhol, Charles de Gaulle, Thomas Jefferson, Enoch Powell, even Jane Austen’s Mr Darcy, and many famous composers and other artists were on the autism spectrum.
People with aspergers may not contribute in conventional terms but that doesn’t make them less valuable and it’s up to us to help them flourish. My own vivid, original son is Wikipedia with a pulse. He knows more about Shakespeare, Buddy Holly, movie stars and tennis players than their own mothers. His memory for dates is so accurate I don’t need to keep a diary.
Another close friend who has a son with aspergers, worries when he goes quiet in his room, that he’s accidentally hacking into a Pentagon computer whilst looking for the existence of UFOs and that he’ll be extradited to the U.S. to serve a 60-year jail sentence for cyber terrorism – although this same computer whiz can’t get the right change from the corner store.
Yes, my life with Julius is challenging, but it’s also hilarious, humbling, and enriching. My kind, clever, quirky boy has now grown into a handsome young man who is the most interesting and courageous person I have ever met. With understanding, empathy and early educational intervention, these kids can fulfill their potential. Jules now volunteers for Oxfam and is working towards becoming a tennis coach and the world’s most colourful sports commentator. In those dark days, after his diagnosis I never imagined him being able to give me literary criticism on a book I had written for him.
People with Aspergers often feel they’re drowning in their own brain waves. I hope this novel, in it’s own small way, acts as a literary life raft.
Copyright Kathy Lette 2012.