Strange Daze

The number of children diagnosed with some form of autism has tripled in five years. And still no one knows what causes it. "Often, if she was getting out of control, I would take her and sit in the car with her with a transistor radio, because she loved music. And I'd do my homework with the radio on, with Jen in the back seat, rocking. That provided a bit of respite for Mum."
John Doyle, one of the country's funniest men, has always kept his private life to himself, though he speaks openly about his autistic sister these days. This week, as the patron of the autism association Aspect, he opened two much-needed classrooms at Alstonville in northern NSW.
Where there's an autistic child in the family, says Doyle, whose parents have cared for Jennifer for 50 years, teaching her to eat, then walk and, later, to read and write, "it's like the blinds come down on your house and your life".
His words may explain a curious incident at an inner-city high school recently. It began with The Curious Incident of the Dog in the Night-time. Mark Haddon's novel about a teenage boy with Asperger's syndrome, the highest-functioning on the spectrum of autism disorders, was to serve as a discussion point for the theme of "overcoming adversity", and Jill Sampson's* rowdy year 7 English class was uncharacteristicall y still. "We sat in a circle and if they wanted to they could talk about their own experiences, " she recalls. One girl gingerly broke the ice. "My brother is
autistic," she said. Then another student came forward with a similar confession. Then another. And another. And after these four, "it sort of led to 'one of my friends has a sibling with autism' . . ."
Was there something in our cereal? Is this an epidemic? The number of children diagnosed with autism spectrum disorders (ASDs) in NSW public schools has tripled in five years, from about 1500 in 2002 to more than 4500 in 2007, according to Brian Smyth King, the Department of Education's director of disability programs.
In March, a three-year study by the Australian Advisory Board on Autism Spectrum Disorders, the country's biggest survey to date, was released with the finding that one in 160 children between six and 12 has an ASD. The national figure could be as high as 125,000.
Such findings are no revelation to people who work in the area. Adrian Ford, the CEO of Aspect, says: "People are able to recognise it. In the '90s and the first five years in this decade, there has been a rise in diagnosis rate here and internationally, but there seems to be a plateauing of that number at about 1 in 160. It seems to suggest that we are reaching a stage where we are beginning to identify all the children who have ASD."
The term autism covers neuro-biological disorders of varying degrees. According to Aspect, these are: the most severe form of classic autism (20 per cent); Asperger's syndrome or high-functioning autism (50 per cent); and atypical autism or pervasive developmental disorders (30 per cent), where there are fragments of various symptoms outlined in the Diagnostic and Statistical Manual of Mental Disorders IV, used by doctors and psychologists around the world to make their assessments.
There may be lack of eye contact or clumsiness. They may have strange obsessions or be locked to a routine. They can be hypersensitive to heat or sound. (Temple Grandin, the brilliant American cow whisperer, whose book Thinking in Pictures is her personal account of autism, likens this overstimulation to "being in a loudspeaker at a rock concert".) In short, it is often very unpleasant. One of the most common characteristics - and one that causes the most pain - is the difficulty in reading social cues.
"My family says Tom always says what everyone else is thinking," says Lynne Whitaker of the gaffes made by her 12-year-old Asperger's son. "He thinks everyone is his friend. He thinks the boy riding a bike down our street is his friend. And he'll yell out, 'How you going, mate? Nice day, isn't it?' "At the doctors the other day, he leaned against the wall and said to a woman, 'Long time no see. How you been doing?' Adults think it's funny, but the other 12-year-olds think, 'You're a bit weird'. Or he'll practise and practise and say, 'Hi. I'm Tom. And I'm 12,' about four times. He doesn't know what to say."
Alex Deen-Cowell, 20, is a brilliant Japanese scholar, stifled socially by Asperger's syndrome since his teens. "It's more that it's lonely for him," his mother, Tracy, says. "Fitting into the world is very hard and the world isn't very accommodating. But he's probably the nicest person I know and the best person I know. He's just a lovely human being. He doesn't have malicious thoughts. I'm quite vengeful about people we've encountered along the way, but he's not. And he has cause to, for sure."
A full diagnosis is "like completing a 100-piece jigsaw puzzle", says Tony Attwood, the Brisbane psychologist whose books on Asperger's syndrome have become international bestsellers. "You need 80 or more pieces to complete the picture."
After the diagnosis comes the hunt for a cure. And there isn't one. As Attwood says, "It's like going to the doctor and the doctor saying, 'You've got a broken arm,' and you say, 'Well, how do I fix it?' and the doctor says, 'Oh well, see you in three weeks.' "
There has been progress with the use of intensive occupational and speech therapy. In cases of severe autism, for example, Attwood says: "When I started in the area 30 years ago, only 50 per cent acquired speech. Today, only 15 per cent don't acquire speech."
The search for a cure is a worldwide effort. In December, a landmark Combating Autism Act was passed by the US Senate, with President George W.
Bush earmarking funds of nearly $US1?billion ($1.2 billion) over the next five years for research, screening, early detection and early intervention. (The rate of autism in the US is similar to Australia, occurring in 1 out of 166 children, according to the Centres for Disease Control.) MMR vaccines have been discounted by scientists as a possible trigger, but there is still a long way to go in determining the causes. In the past year, researchers in Israel have found that new fathers over 40 are nearly six times more likely to produce children with ASDs than fathers younger than 30; a team of Danish and US scientists published a report in The Lancet medical journal linking neurological disorders including autism to exposure to 200 industrial pollutants such as lead, methylmercury and arsenic; US economists have attributed the growth of autism in states with high rainfall to greater use of television.
Attwood says support is inadequate. "The funding organisations, and government and research levels, have not yet understood the nature of the problem, its severity and impact," he says. "Parents have to fight to get a certain number of hours a day to support their child. It's hard enough having an autistic kid but you shouldn't have to fight the system to try and get the child resources."
Support groups for parents of children with ASDs, children of parents with ASDs and partners of people with ASDs have sprung up across the city. Aspect operates six schools for children up to 16 as well as 37 satellite classes, including Alstonville, while other schools such as Giant Steps, in Drummoyne, are part of the Independent Schools Association.
Demand is outstripping supply. Tom Whitaker lives in Richmond and travels three hours a day to and from his school. Elsewhere, the Woodbury School in Baulkham Hills, which costs families nearly $40,000 a year in fees and contributions, had to turn away 30 applicants this year.
It is accepted that the most successful approach is multilayered, either through interventions such as Applied Behaviour Analysis, or a mixture of speech and other choices. The guidelines for best practice released by the Department of Health last year recommended a minimum of 20 hours of intervention a week over two or more years.
Early intervention is the one point on which experts agree, though it is too late for Jennifer Doyle, diagnosed at 10, who at 50 has "a very measured and quiet and carefully routined existence" with her parents. She didn't speak until she was 3 1/2 and, her brother says, "her first utterance was a complete sentence. And she hasn't stopped talking. Generally in the third person. She can be very loud. We're all blessed with booming voices."
[SMH]