One grey, rainy London day my 11-year-old son arrived home from school with his shirt torn and hair matted. There was a sign sticky-taped to his back. It read: "Kick me, I'm a retard."
I ripped it off in fury as a tidal wave of frustration and pity surged through me. "The other kids called me a moron," he whispered, his wide blue eyes filling with tears. "What does that mean? Am I a moron, Mum?"
Trying to protect a child with special needs from being bullied is like trying to stop ice melting in the desert. There were calls to the school, meetings, promises of closer scrutiny in the playground. But basically, when it comes to defeating bullying - particularly when your child is an obvious target - a parent might as well be standing up to Voldemort with a butter knife.
Research by the National Autistic Society reveals that 63% of children and young people with autism report bullying at school – 82% for those with Asperger's syndrome,
compared with an estimated 11% of children in the general population. It also reveals that the problem is largely ignored.
This certainly chimes with my experiences. My son Julius was diagnosed with autism aged three. Autism is chiefly characterised by an inability to communicate effectively, plus chronic anxiety and obsessive behaviour. Not getting a joke, not knowing what to say then saying the wrong thing, being told off but not understanding why, feeling confused, left out, frightened, out of synch, all day, every day - that is the reality of life for someone on the autistic spectrum.
But the condition is also often linked to a very high IQ. My son walked and talked early. In fact, family and friends thought him 'advanced'. So you can imagine my shock when, at about 14 months, Jules just lost his language skills. His brain was like a computer that had crashed.
When the paediatrician made his diagnosis, my first reaction was denial. I bankrupted myself seeing experts – I hate to think how many doctors' children I've now put through university. The next overpowering emotion was guilt. Was it that one glass of wine I drank in the final trimester? Should I have consumed more puréed organic beetroot - or maybe less?
After intense speech therapy, Jules started talking again when he was four. For years, experts had been telling me that he had 'global delay', yet I found him to be bubbling with the most intriguing questions. "If onions make you cry, are there vegetables that make you happy?" "Is a harp just a nude piano?" "What is the speed of dark?" "Is a vacuum cleaner a broom with a stomach?" was a typical daily onslaught.
The doctors with their stethoscopic minds couldn't really diagnose my son. But by the age of five the word 'Asperger's' was being bandied about. "Asperger's is a form of autism, but at the high-functioning end of the spectrum," it was explained to me. "People with Asperger's are often of above-average intelligence. They have fewer problems with speech, but still have difficulties understanding and processing social situations." I burst with optimism: it felt like getting an airline upgrade or a prison reprieve. But my euphoria was short-lived. Every expert agreed on one point: only in a small classroom with specialist teaching, protected from bullying, could Jules ever reach his potential - but getting the necessary help proved a postcode lottery. The waiting lists for special needs schools are so long there are Stone Age families at the front of the queue.
Aged five I had my son statemented, which means that he had a statement of special needs from the education department, promising to "fulfil his educational requirements". I soon learned to decode this spiel too: an educational statement is really just an adroit piece of jargonised sophistry which promises much but delivers little. The system is designed with bureaucratic speed bumps to slow down a parent's progress.
My son was eventually 'mainstreamed' in a local state infants school, with the support of a very kind, although untrained, helper for a few hours a day. It was woefully inadequate. Being told off for laziness or chastised for disruptive behaviour, put on detention for failing to understand homework and constantly belittled by peers, means that for many children with special needs, school becomes little more than a masterclass in low self-esteem. Overworked teachers treated my son as though he were a feral creature recently netted in the Amazon and still adjusting to captivity. And pupils taunted and teased him.
Although by age eight Jules had an encyclopaedic knowledge of tennis, the Beatles, Buddy Holly and Shakespeare, the only subject at which he excelled in school was 'phoning in sick'. Bullying made school unbearable. Most mornings I had to drag him, shrieking and punching, out of his pyjamas and into school. Often, he just wouldn't get out of the car. Would it be excusable to call the fire brigade to cut him out of the vehicle, I wondered, slumped on the curb with my head in my hands, Jules welded to the seat beside me.
"Only fish should be in schools. It's a prison for children. How can you make me sit in that torture chamber all day?" I can remember the mixture of bafflement and betrayal contorting his 10-year-old face into a mask of dismay as he struggled to rationalise our daily battles. The one person he trusted was forcing him into a place where he was ridiculed for being different and beaten up so badly that on one occasion he needed stitches in his head. The incident was brushed under the carpet as "accidental".
How I envied the normal worries of other mothers who fret over sugar content in cereal or how to make broccoli interesting. The parent of a special needs child must be their legal advocate, scientific advisor (challenging doctors and questioning medications), executive officer (making difficult decisions on their behalf) and also, full-time bodyguard.
High school didn't improve things. Jules called his school 'Guantanamo Bay'. But his anxiety was understandable. Venturing out of the house when you have special needs can feel as hazardous as Scott leaving his Arctic base camp. It's no wonder that the hardest thing for parents like me is to stop mollycoddling. All through his teens, I would never let my son leave home without a list of instructions longer than War And Peace and enough supplies in his backpack to set up a comfortable wilderness homestead.
When I read about the horrific fates that have befallen other young men with Asperger's - the tragic death of Steven Simpson, who had his genitals set on fire at his 18th birthday; or the autistic boy known as ZH who, in 2008, was falsely imprisoned and shackled by the police for jumping into a swimming pool fully clothed - my paranoia seems justified. After my son was mugged at knife-point aged 14, I read this comment from a police officer in the paper: "People with special needs are routinely targeted. I'm afraid it's the price of disability."
If this is the price of being born 'differently abled' then the price is way too high. The only way to eradicate bullying is to encourage society to be more accepting. I no longer think of people as 'normal' or 'abnormal' but 'ordinary' and 'extraordinary'.
And I adore my extraordinary son. Despite all the angst and exhaustion, he has brought such joy, humour, wonder, love and compassion into my life. Jules is now 25. With his blessing, I have written a novel called The Boy Who Fell To Earth to help destigmatise autism. The book is about a single mother's rollercoaster ride of raising a child with Asperger's. It's basically The Curious Incident of the Dog in the Night Time - but told from the mother's point of view. While based on my own experiences, the novel is also a tribute to all the plucky, inspirational parents I've met who've shared with me their battles against bureaucracy and bullying.
During Anti-Bullying Week, it's timely to realise that with encouragement, love and support, these unique individuals can fulfil their potential and contribute to society in the most fascinating ways. We now know, with diagnostic hindsight, that Mozart, Einstein, Van Gogh, Warhol, even Jane Austen's Mr. Darcy, were on the autistic spectrum. Jules often tells me that he feels as though he's drowning in his own brain waves. I hope this novel, in its own small way, will act as a literary life raft. And that my son's [[https://www.youtube.com/watch?v=c_25evT6A68
animated story]] will help other bullied children feel strong.
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