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A world apart

One child in 100 is diagnosed with autism in New Zealand. However, despite new insights into this mysterious condition, our schools and social services are unable to cope.

Claude Wylie was 23 months old when his parents were told that he has autism. His mother, Rosamund Hill, noticed at 18 months that he wasn't speaking much, that he wasn't the chatterbox his sister Annabel had been - but perhaps that's a classic boy/girl difference, she thought, and nothing to worry about. There were some words - Mum, Dad, shoes, duck - rarely said but definitely heard. Yet, even those few words soon started to go. During the six months after the diagnosis, there were no words at all.

Other things started to fit the picture. There was the hand-flapping that some kids with autism do to reduce anxiety. There was an unusual, goose-step-type walk. The fact that he sleeps so little. After a second opinion, the diagnosis was confirmed: this was autism. Hill is a neurologist, but even she was surprised at how little she knew about the condition that still mystifies so many. She thought, of course, of Dustin Hoffman in Rain Man. She thought of the adult patients with Asperger's syndrome that she had seen professionally - her area of specialty is epilepsy, and up to 30 percent of people with autism and Asperger's (a high-functioning form of autism) also have epilepsy. She had believed autism to be an inability to empathise. She was soon to learn how much more there is to it.

Nearly two years later, at three and a half, Claude still doesn't speak much. Over the course of a couple of hours he says a handful of words and these tend to be directions: asking Mum to sit, asking for a hug. He makes little eye contact, takes no interest in the three strangers who have come to watch and photo-graph him.

Asperger's syndrome expert Tony Attwood talks about insult being added to injury for parents of kids with autism. First, the tough diagnosis. Then, "the longing and search for services that the child needs". It is a race against time: "You only have one childhood," says Attwood. "But the brain of a three-year-old is pretty plastic and if you do work with that child, not to excess but to a reasonable level, you can get significant progress."

Hill was quickly to discover just how many children are affected by autism. A neighbour had a kid with autism; so did a friend. Before the diagnosis, it seemed to be invisible; after the diagnosis, it seemed to be everywhere - in fact, the most recent UK studies show that autism occurs in around one in 100 children.

And yet, Hill says, "the medical profession is totally unhelpful". It's an impression confirmed by other parents. The paediatrician who makes the diagnosis typically won't offer advice on what to do next, what to read, who to contact. "They say, 'Here's your form to get $27 a week from the government.' They don't even arrange to see you again."

A family in Palmerston North were invaluable in the early days of Claude's diagnosis. Their son, now eight and a half, was diagnosed at two and a half. Emails about that boy's progress were a comfort to Hill on Claude's bad days; now she forwards them on to mothers of more recently diagnosed children. After spending six months researching therapies and contacting experts abroad, that family had to spend six months training their own therapist to work with their son in the areas of behaviour and communication.

Twenty-two years ago, Maree Whitworth of Christchurch went through a similar ordeal: the oldest of her five sons was diagnosed at the age of two. Back then, autism was a rare condition - occurring in around one in 10,000. It took her a month to find anyone else in New Zealand with a child with autism.

Two of her other sons are more mildly affected. "I didn't want anybody else to go through the trauma I went through," she says. She began working with the charitable organisation Autism NZ, which offers support to families; she is now its CEO.

"One of my sons needs fulltime care 24/7; he's still living at home. The other two need a lot of support in planning their lives. They don't have brilliant planning skills. They are hopeless with sequencing: it took me two years to get one son into the habit of showering every day. We were constantly referring back to the chart: 'This is what you've got to do every day.'"

By "chart", Whitworth means the visual aids that help children with autism to sequence the events of the day and reduce anxiety about change: these are laid out with images of activities, people and places. It's a visual diary for visual learners. Whitworth reports that her oldest son "is certainly ready for residential care". Taking care of him, she says, "puts a lot of stress, not only on me, but his older brothers as well". But even though it was deemed to be urgent 15 months ago, Whitworth is still waiting.

Tony Attwood, a British-born clinical psychologist who lives in Brisbane, usually comes to New Zealand every year and is up with the state of play here. In the mid-1980s, when Whitworth was getting her first diagnosis, he was head of the psychology department at the Kimberley Hospital in Levin. "Those were the days when parents were told to put them in institutions and that was it," he says. "It was soul-destroying, both for the people with disabilities and the staff."

Back then, Asperger's syndrome wasn't a widely recognised diagnosis, but Attwood has gone on to make it his specialty. Last year, he updated and expanded his seminal 1998 book Asperger's Syndrome as The Complete Guide to Asperger's Syndrome.

In the absence of any local research, New Zealand bodies follow the UK autism figures of one in 100. Attwood believes that there are a number of reasons for this increase. One is that the diagnostic criteria are wider: "Autism doesn't always occur with severe intellectual disability. It can occur with an IQ in the normal range, which is what Asperger's syndrome is. We also recognise that you can have another condition and autism: Down's syndrome and autism, or cerebral palsy and autism, where previously the two wouldn't necessarily be put together." There's also a new precision: kids once diagnosed as "mentally retarded or intellectually disabled" might now be autistic.

"Because we're changing our conceptualisation of autism, we can't tell for sure whether it's actually increasing or not. We know that we're getting more diagnosed. Perhaps in 10 or 15 years' time, we will know if there is an increase in autism like there is juvenile diabetes or eczema and asthma. At this stage, we can't tell."

One in 100 also suggests that there are a lot of people who have been living with high-functioning autism, undiagnosed and doing nothing about it. "They are the collectors, the recluses, the introverted, unusual people who haven't made contact with any government agency. They may have been supported by family and community, but without that support, they would have collapsed."

Does Attwood think that schools and social services are equipped for the apparent increase in autism? "No. Talk to the parents." The burden, he says, falls unfairly on them. Whitworth agrees that our schools and social services are in no way ready for autism in one in 100 children. "We have huge problems with the education system in New Zealand. We have children who can only attend school part-time. We have children who are discouraged from attending their local school. We have teachers who aren't trained and teacher aides who aren't trained. For some of our kids, particularly with Asperger's syndrome, the education system is failing them.

"We have families who are paying teacher aides themselves because they can't get any funding. They need to look at the criteria, because our kids miss out constantly. Even kids with autism who have absolutely no way of accessing the curriculum without support are being turned down for funding. There doesn't seem to be a consistent approach across the country, and that's very concerning."

"The New Zealand Government has got away with it for a long time," says Attwood. "It's one of the last civilised western countries not to have the resources applied. New Zealand has been extraordinarily conservative, oddly enough." He's impressed by the work that Autism NZ does, all things considered. "They do the best that they can, but they're not given the resources. The work is often done by parents who have enough to do to look after their own kids. The government has to look at this seriously."

The good news is that it might be gradually starting to do so. The Ministries of Education and Health have collaborated on evidence-based best-practice guidelines for working with people with autism. Submissions on the draft guidelines close at the end of this month.

There is no data that shows the levels of support for different diagnoses. Barbara Disley, the Ministry of Education's deputy secretary of special education, says that it is a principle of special education resourcing in New Zealand that children are supported according to needs and not diagnosis. So, she can't say with confidence how many children with autism are either noticed or overlooked when applying for teacher aides. The ministry supports children with "high to very high needs", which excludes those who can read and write, yet Disley also concedes that autism is "a notoriously complex set of disorders" and that curriculum level is not a good indicator of support needs: "High academic achievers sometimes need considerable support, while those working at lower levels of the curriculum may need less support."

In a year and a half, Claude Wylie will be going to school. Not a special-needs school, his mother thinks, but the mainstream primary around the corner. At about two years, nine months, Hill realised that he could identify words. "He doesn't read books, but he recognises the words that he knows." This is a result of the eidetic (photographic) memory common in kids with autism. "He has a good underlying intellectual capacity. He knows his letters - capitals, small letters - and numbers. He'll probably be ahead intellectually - which is the aim - but behind socially."

One thing about autism that everyone agrees on is the earlier the diagnosis, the better. In this sense, Claude was lucky. Right now, he does 36 hours of Applied Behavioural Analysis (ABA) per week, which is at the high end. It's not cheap, either: psychology professor Oliver Mudford, who runs post-graduate courses in ABA at Auckland University, estimates that an ABA programme usually costs around $40,000 to $60,000 per year in this country.

Hill gets no support for this, nor for Claude's speech therapist (the diagnostic paediatrician advised her to go private as you can wait six to 12 months in the public system, and time really matters). She is also using some of the principles of Stanley Greenspan's "Floortime" therapy, which isn't widely practised here but has a high profile in the US.

Hill combines this with some of the principles of Relationship Development Intervention (RDI), a parent-based therapy that is gaining a following in the US and here. And on top of all this, she has Claude on the controversial "biomedical" treatment.

Attwood would approve: he favours an "eclectic" approach that fits an individual kid's needs, but discovering what works and what doesn't is pure trial and error. "I think the ABA has predominantly made the difference," Hill says. "He's not had a dramatic change; he's slowly, steadily getting better." However, she says, there's no way of knowing whether that would have happened without intervention.

"The evidence is stronger for ABA than any other intervention, but at the moment the evidence is not strong enough to make a firm recommendation that everyone should do it," Mudford says. Studies show that it is moderate to effective for about slightly under half of children diagnosed with autism who start early enough. ABA's enthusiasts cite a 1987 study by researcher Ivar Lovaas which found that nine out of 19 children with autism who were taught for 40 hours per week had attained a normal IQ and tested within the normal range on adaptive and social skills - but this is the high-water mark. Mudford says that follow-up studies haven't achieved the same result.

In some parts of the US, ABA and Floortime are provided by the state. In the UK, Mudford says, ABA is provided by local education authorities - who have sometimes been forced to do so by the UK's special education needs tribunal. No such provision applies here, and it's not uncommon to hear of families selling the house to pay for one child's ABA.

And the biomedical approach? This is partly based on the idea that increasing rates of autism don't seem to square with its genetic basis: there is no such thing as a genetic epidemic. Some researchers now believe that environment plays a part. In the biomedical approach, children are put on a gluten- and dairy-free diet along with a number of supplements, minerals and vitamins to redress possible biochemical imbalances. There's no argument, says Hill, that there are well-established problems with the gut and the immune system in kids with autism, so she can't see why the medical profession should be so resistant to the idea that biomedical interventions may help.

"It would be nice to have more widely accepted scientific evidence for the diet, which is why mainstream medical specialists have not really supported it. But I now advise my intractable migraine patients to have a trial of three weeks of a dairy-free diet, or three months of a gluten-free diet, because a lot of people are sensitive. Not allergic, but sensitive, and will have fewer headaches. I don't have to have a double-blind, placebo-controlled, peer-reviewed published paper to recommend that. Medi-cal specialists should do the same with kids with autism: they should say that a lot of parents find this helpful."

The idea that food can affect your head might sound like voodoo, but isn't it just as odd that a neurological disorder seems to afflict the immune system? Right now, the biomedical approach is frowned upon by GPs and paediatricians here and not officially endorsed by Autism NZ, although it will provide contact details of the few doctors in New Zealand able to put kids on a biomedical programme. Hill attended the four-day biomedical conference and doctors' training course put on by the Defeat Autism Now organisation in Seattle last year, but so far she's only practising it on her son.

Like ABA, the biomedical approach can't be called a cure. Besides, does anyone even want a cure? There's a movement now to preserve difference. One of the many good things about Attwood's books on Asperger's is that they highlight the positive qualities. "You've got a child who may develop ingenious strategies to overcome their difficulties. Somebody who was blind would develop all sorts of strategies to navigate their world, but this is to navigate the social world.

"A description I give is to imagine brain development as a clearing in a forest with lots of saplings growing that could become trees. That's the brain. In a typical brain, one plant grows very quickly and becomes the tree that dominates the clearing, shades the other plants, takes the nutrients from the soil, inhibits other plants' development and dominates that clearing. That's the social brain of a typical kid. But if you've got a kid with autism, that's a smaller plant. They may not be picking up the social cues, but they then don't inhibit the sensory cues.

"Our brain inhibits information that comes through the other senses, because we're looking for social information. That means these guys can have the hearing of a dog or the olfactory abilities of a dog. Or what I call the three Ms: mechanical, musical or mathematical ability. They may develop other abilities because we dominate our life with socialising. And the trouble is, they have to live in a world of social zealots."

And if there was ever a cure, we could miss out on a lot. "You'd miss out on Einstein and Mozart. It's diversity that we're looking for. Where there's severe expression of autism, it's obviously a great detriment to the individual and their family. But as a society, as [autism author] Temple Grandin said, 'If the world was left to you socialites, we would still be in caves and talking to each other.'

"Most of the major advances in science and art have been made by people who think differently and that's what autistic spectrum disorder is: you perceive the world and think about the world in a different way. And I don't want to make a value judgment that that's inferior."

Philip Matthews is the father of a three-year-old girl with high-functioning autism.