A Life Apart

Today is Twitter Shutdown day, to raise awareness for autism. I'm not convinced that shutting down Twitter or Facebook will contribute in any meaningful way to the quality of life of people with autism. Personally, I would like to take advantage of the day to increase understanding, and to raise funds.
Here is an edited version of an article I wrote five years ago:

May 2001 was a big month for Nikki and me. We'd been close friends since our first kids were born a few weeks apart, and we gave birth to our second babies within days of each other.

We met for coffees, took the toddlers to the park while the babies slept in their prams, and grumbled about all the challenges of managing two young children. But over the coming months, as my daughter began sleeping through the night and my life started to get easier, Nikki's world began to fall apart.

Something wasn't right with her new son.

"Jamie's not holding things in two hands," she told me one day, when both the babies were about 10 months old. "I'm worried."

Though I didn't tell her, I was worried too. Jamie didn't seem to be communicating or interacting the way that other children were. His developmental lag became more and more noticeable, and by the time he was one, several specialists had suggested that he was profoundly deaf.

It was a distressing possibility. Strangely, however, when he was formally assessed by the Deafness Centre, the report came back clear. His hearing was perfect.

"Great!" all of our friends exclaimed. "What a relief!"

But Nikki wasn't relieved, and I knew why. If Jamie wasn't deaf, then something else had to be wrong.

It took another year - a year of tremendous anxiety and innumerable assessments - before Nikki and her husband Andrew found out exactly what that 'something' was.

Jamie has autism.

Autism is one of the autistic spectrum disorders, which includes Asperger's syndrome, and is a lifelong disability. People with autism process information differently to 'normal' people, and, as a consequence, have severe difficulties communicating and relating to other people, and to the world around them.
The incidence of autistic spectrum disorders is rising, up to around 65 per 10,000 of the population, and though there is thought to be a genetic component, it is impossible to predict.

Children with autism are often initially assumed to be deaf, because they cannot make sense of speech sounds and facial expressions. They are also unusual in their social interactions, relating to other people in the same manner as they would relate to an object. One mother I spoke to described her child running straight over people who were lying on the beach, instead of walking around them as other kids would do.

In addition to being greatly impaired in speech and comprehension, most people with autism also have a moderate to severe intellectual disability, and have unusual, often intense, responses to sensory stimuli such as taste and touch.

Jamie's diagnosis of autism was shattering news for Nikki and Andrew.

"It was like someone had whacked me over the head with a shovel," says Andrew, a gentle, softly-spoken man. "I drove back to work in absolute tears. This is not supposed to happen to us. This is not our perfect life."

It has been a difficult road. Two years on, Jamie, like my own daughter, is about to turn four. But while my daughter is choosing her own clothes, drawing pictures of her family, and talking incessantly about preschool, Jamie is locked inside his own world.

Jamie has no speech, and very limited non-verbal communication. He has never held a texta, never dressed himself, never taken himself to the toilet. He is a strong boy whose high levels of energy and frustration make every outing, every activity, a huge challenge. He is almost constantly on the move, running, grabbing things, and banging his head against walls. He rarely sleeps through the night, which has left Nikki and Andrew permanently sleep deprived for almost four years.

Children with autism typically perform unusual, repetitive, and even dangerous behaviours, and Jamie is no exception. His obsession is with spinning wheels, and he has made things spin that were previously considered aerodynanically impossible.

Still, despite the immeasurable difficulties, Jamie is a gorgeous little boy who is adored by his parents and extended family. As Andrew says, "He's an absolutely beautiful, happy kid with a big smile and a big laugh. And the look on his face when he sees you... it's beautiful."

Nikki has a wide social circle, but having a child with autism is extremely isolating. Just co-ordinating her son's program of early intervention, including mornings at a special school and afternoons with various therapists, is all-encompassing. Outings as a family are near impossible, as Jamie is extremely dificult to control when he's out of home. And as for quality time as a coule, well, when I raise that question Nikki just snorts, so I assume there's not a lot of it.

The greatest concern for Nikki and Andrew, however, is their son's future. They wonder how far he will develop, and whether he will ever learn to communicate through speech. Most worrying of all, they wonder where he will live when they can no longer look after him at home.

"The worst thing for me," says Nikki, "is that I can't just live in today. I am always projecting into the future, hypothesising about what's ahead."

For anyone, having a baby means taking a plunge into the great unknown. However, having a child with a disability launches the parent on a very different path, with a lifetime of challenges and responsibilities the rest of us can try to appreciate, but will never fully understand.

Nikki and I got pregnant at the same time; my child turned out to be 'normal', and Nikki's child turned out to have autims.

It is clear to me that Nikki, Andrew and every other parent in our community with a disabled child deserve our wholehearted support - emotionally, practically, and, when necessary, financially.

Because if it weren't for some stroke of luck, this story could have been about my child. Or yours.

To donate to Jamie's brilliant school, Giant Steps, click here.