Only about 1 per cent of all cases have the "extraordinary" gifts seen in the media and movies, says WA paediatrician John Wray, who co-wrote a paper on language disorders and autism, published in the Medical Journal of Australia in April (2005;182:354-360).

Life for most children with autism and their families is a far grittier reality.

Autism spectrum disorders are developmental disorders that impair communication and social interaction and cause a range of stereotypical or repetitive behaviours, interests and activities. Children with Asperger's syndrome are often seen as eccentric and isolated, but their language is not delayed as it is in autism, so they tend to be diagnosed later. Atypical autism is a milder form of autism; the characteristics are still there, but not to the same degree.

Symptoms and severity vary, but noise and fluorescent lights can make concentrating and learning extremely difficult for children with autism. Many find it difficult to understand body language, facial expressions and intonation. And many throw massive tantrums when confronted with any sort of change in schedule or routine.

At the age of four, Meredith Ward's son Grant had a vocabulary of just three words: "Mum", "more" and "drink" – and they "weren't used in the appropriate fashion", she says. For months Grant referred to any object, from a broom to a tree, as "Mum".

While other children were making friends and cruising toy trucks down the driveway, Grant refused to play with toys. He would not set foot inside a playground, instead preferring to circle the borders for an hour at a time.

Overly sensitive to touch, Grant hates the sensation of grass on his feet. Rain literally paralyses him. "He hates the rain," Ward says. "It overloads him so much he doesn't know what to do. He freezes and just stands there screaming. It's taken years and years and years to desensitise him enough to open the car door when it's wet."

When diagnosed with autism at two, he was functioning near the bottom end of the spectrum. But now seven, after years of quality "early intervention" from therapists with a background in autism, Grant goes to a mainstream school where he is reading and writing at the same level as his peers, albeit with more difficulty. He is now considered high-functioning.

Ward says her son is one of the lucky ones – "and it shouldn't come down to luck". Diagnosis and funding for treatment varies widely from state to state. No states fund the level of intervention experts recommend.

Frustrated and angry at what they say is inadequate and unequal access to treatment, a number of groups including Autism, Asperger's Advocacy Australia (A4), the Autism Council of Australia and the Autism Family Support Association are lobbying the federal Government to create a co-ordinated national approach. Recently they took their case to Canberra, where the first national forum for autism was held at Parliament House on June 16.

There are no drugs to treat autism as such, only some that can help suppress some of its symptoms. And there is no cure.

But there are several types of behaviour therapy that can make a big difference in addressing problems autism presents, and a number of studies have shown those who receive appropriate early intervention have better educational outcomes and are more likely to learn skills needed to function in society.

Children with autism need to be taught basic behaviour skills that other children naturally have, such as how to interact socially, what appropriate behaviour is, how to express their needs and even how to play. Therapy won't make problems with social interactions, communication and behaviour disappear, but it can markedly improve things.

Ideally, children need 15 to 25 hours weekly of autism-specific early intervention. While Western Australia funds 10 hours per week, Victoria, NSW and the ACT fund two or fewer "There's very good evidence that early intervention works, but there's great discrepancies between what's available, and no state has very good options and services," Wray says.

In Victoria, for example, children are waiting as long as two years to access the services that are available – a long time when you consider that most treatment stops by age six and that the earlier it is received, the better the results.

Children can benefit from working with speech pathologists, occupational therapists and behavioural interventionists, but most private insurance companies cover only $500 a year of allied health. The Medicare Enhanced Primary Care program just began funding five sessions a year, which is only a speck of what's needed, Wray says. "An autistic child really needs 1000 hours of therapy; Medicare now covers five."

The costs add up, with therapists averaging $35 to $50 an hour.

As yet there's no national register to document cases and outcomes. That, along with a national secretariat for autism, is among the recommendations that came from the forum.

Parliamentary secretary for health Christopher Pyne, who organised the forum, has announced a $50,000 study to determine the best practice for autism services for children under six, the goal being a benchmark for which states aim.

While happy that something is being done, many in the autism community say it's not enough. Soon-to-be published research by Avril Brereton of Monash University measures the outcomes of a 20-week education and skills management program for parents of young, recently diagnosed children. Mental health and stress levels for parents, and outcomes for the children, were significantly improved even up to two years later.

Australia-wide, little is available to help parents or adults with autism.

"Everything is focused on early intervention, but we need to look a long way beyond that," Brereton says. "Support and help drops as children get older, but their needs don't decrease."

Autism Council of Australia

http://www.autismaus.com.au

Autism Aspergers Advocacy Australia