My son shines in the dark

Kathy Lette, The Australian, 2 Apr 2013

Author Kathy Lette with son Julius Robertson. Picture: Dave Poole

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.

New research, published in the Archives of Paediatrics and Adolescent Medicine last week, suggests that more than half of all teenagers with an autism spectrum disorder are bullied at school, compared with an estimated 11 per cent of children in the general population. It also reveals that the problem is largely ignored.

This certainly chimes with my experiences. My son Julius (Jules) was diagnosed with autism aged three. Autism is a life-long neurological disorder, chiefly characterised by an inability to communicate effectively, plus inappropriate or obsessive behaviour. 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, left out, frightened, out of synch, all day, every day -- that is the reality of life for someone on the autistic spectrum.

What many people don't know, however, is that the condition also is 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 pediatrician made his diagnosis in a sooty Victorian-era hospital that day, an ache of love squeezed up from my bone marrow and coagulated around my heart. I felt an overwhelming lioness-type love. It was my job to stop him from tumbling through a hole in the world, like Alice.

My first reaction was denial. I bankrupted myself ricocheting around the country seeing every available expert, all swishing in and out of doors in their white coats. I tried everything, from karma maintenance to cranial massage. My son had so many tests, he must have thought he was being drafted into the elite moon mission astronaut program. I hate to think how many doctors' children I've now put through university.

The next over-powering emotion was guilt. Fathers, while equally loving and supportive, are better at compartmentalising. But a mother's guilt gland throbs. Was it something I ate while pregnant? Soft cheese or sushi? Was it that one glass of wine I drank in the final trimester? Was it something I should have drunk, like pureed beetroot? If only I'd feng-shuied my aura in yogalates classes like Gwyneth Paltrow.

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.

All 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 -- at pound stg. 245 ($355) an hour. "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 reach his potential.

Doctors, nurses, teachers, therapists, social workers, and educational psychologists all agreed that this was the case, 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.

When my son was five, I had him "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 that promises much but delivers little. 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 psychologists. The technical term for this process is "being passed from pillar to post". I know families who have lost all their savings appealing in the courts against a council's decision not to fund a child's placement to a special school.

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. It seems to me that putting a child with special needs into a mainstream school is as pointless as giving a fish a bath. 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 school becomes little more than a master class in low self-esteem. Overworked teachers treated my son as though he was a feral creature recently netted in the Amazon and still adjusting to captivity. And pupils taunted and teased him.

Most children at school strive to master maths and grammar. Kids with special needs strive to make themselves invisible. Although, by age eight, Jules had an encyclopaedic knowledge of tennis, the Beatles, Buddy Holly and Shakespeare, including being able to quote most of Hamlet, 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. We always planned to leave the house by 7.15am -- and like clock work, we were usually out the door by 8.35am. My son hated school so much, he often just wouldn't get out of the car. Would it be excusable to call the fire brigade to cut my son out of the vehicle, I wondered, slumped on the curb with my head in my hands, Jules welded to the seat within.

"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 fretted over sugar content in cereal, how to make broccoli interesting and why their offspring wouldn't eat anything that hadn't danced in an ad on television. The parent of a special needs child has to be their legal advocate, fighting his or her educational corner; full-time scientist -- challenging doctors and questioning medications; executive officer -- making difficult decisions on their behalf; and also, full-time bodyguard against bullies.

High school didn't improve things. My son called his school "Guantanamo Bay". It would take me an hour to haul him out of bed, and only then with a mixture of cajoling, begging, pleading and blackmailing. By screaming till the paint peeled off the walls, I could usually half stuff him into his uniform, but not before he'd trashed his room in the process.

My "brilliant" mothering skills became strikingly apparent when I would then run back to my room and sob into my pillow. Eventually I would summon up the strength to drag him, as he cursed and cussed, to his school gates, before dashing to work, all distraught and dishevelled and panda-eyed from mascara leakage.

The daily ordeal left me more depleted than Our Lady of Put Upon and Exhausted -- the Patron Saint of mothers of children with special needs.

But Jules's 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. I was so over-protective that my friends and family would often joke that they couldn't believe I'd ever let my son out -- out of my womb, that is.

Even now, whenever my darling boy walks out the door, you'd think he was emigrating.

The fuss, the worry, 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?

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, love and compassion into my life. And also wonder. Jules is Wikipedia with a pulse. People on the autistic spectrum have a lateral, literal logic which is vivid, hilarious, honest and original. My son is one of the most interesting people I have ever met.

Since he was little, he's kept me on my mental toes by asking me the most tangential questions. The latest: "The American constitution says you must pursue happiness. But how do you know when you've caught it?" And "Why is there no other word for synonym?"

With my son's blessing -- Jules is now 22 -- 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 -- Mark Haddon's famous book on a teenage boy with Asperger's -- but told from the mother's point of view.

While based on my own 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 and bullying.

We now know, with diagnostic hindsight, that Mozart, Einstein, Van Gogh, Warhol, even Jane Austen's Mr Darcy, were on the autistic spectrum.

It's time to stamp out the bigotry that excludes people with disabilities from mainstream life.

It's World Autism Awareness Day today, so 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.

Julius tells me that my novel is a "celebration of idiosyncrasies, eccentricities and being different". And he's right.

Because how tedious it would be if we really were all the same -- a case of the bland leading the bland.

Kathy Lette's book The Boy Who Fell to Earth is published in paperback on April 11. Lette is an ambassador for Britain's National Autistic Society.

from http://www.theaustralian.com.au/news/features/my-son-shines-in-the-dark/...