The rise in autistic disorders has embattled parents and doctors searching for new treatments, writes Judy Skatssoon.
Autism in a child is one of the most complex and challenging disabilities a parent can face, says Dr Trevor Clark, head of research and education at the Autism Association of NSW.
Australia, like other countries, is dealing with a marked increase in autism that first became evident about two years ago. Clark says it's time to focus on how best to help autistic kids reach their full potential as functioning individuals. How this might be done - through teaching, medication or diet - is the big question.
"It seems like every class, every school, every preschool is now dealing with autism," says Clark. "We need to come up with some final answers so that we can guide families to credible interventions [based on] valid research."
Autistic Spectrum Disorder (ASD) is an umbrella description for lifelong disabilities that affect the way a child relates to their world. Autism is characterised by what is referred to as a triad of impairments affecting social interaction, communication and behaviour.
Most people with autistic disorder have an intellectual disability, but those with Asperger's syndrome, for instance, tend to have no intellectual disability or functional problems other than social interaction. Often, those with Asperger's syndrome have high intelligence.
ASD is almost always present at birth, although some children appear to develop normally until the age of about two then suddenly regress.
The association puts the prevalence of autism in Australia at a conservative estimate of about 65 in 10,000, compared with four or five in 10,000 just 10 years ago.
Clark puts this down to wider diagnosis and a broadening of the spectrum to include what is referred to as high-functioning autism and Asperger's disorder.
The broadening has also led to confusion, and there is disagreement whether semantic pragmatic disorder, for example, which affects language and information processing, is a language disorder, the equivalent of high-functioning autism, a disorder on the autism spectrum or a separate disorder with echoes of autism.
The Autism Association says there is no cure for the condition and there are scant clues as to its causes. Clark says there is little scientific research supporting an environmental cause. Speculation that it is caused by childhood vaccination has been debunked by a number of studies.
However, research in genetics and neurology is bringing the world closer to understanding the disorder. "Indications are that there's definitely a genetic link," Clark says.
"It would appear there's no single gene, but it's highly likely there are multiple genes involved that research is still trying to unearth.
"We are also confirming that autism is a form of neurological dysfunction or damage and researchers are trying to pinpoint which part of the brain is affected."
Pharmacological options are available for treating autism-related behaviours, such as lack of concentration, depression, anxiety or compulsive actions. But Clark says the primary treatment falls under what his association calls the behavioural educational umbrella.
One of the most influential and widespread approaches in Australia is applied behaviour analysis (ABA), developed at the University of California, Los Angeles by Ivar Lovaas in the 1970s and '80s.
Children receive intensive instruction and learn tasks. When a child is able to do a task independently, such as putting a block in a box, a new skill is systematically introduced.
Stephany Freeman, who helps run a program at UCLA, likened ABA to a crowbar for the mind in a recent article in the Journal of the American Medical Association.
"It's like there's a door in their head and you need to pry it open or else it just stays closed," she says.
At least there is a door.
Margo Squire is the director of the Early Autism Project based in Waterloo, which provides ABA for 30 to 35 families in Sydney and Canberra. The therapy involves three years of intensive treatment for a maximum of 35 hours a week.
Squire says overseas research has shown that up to 50 per cent of children who go through an ABA program develop almost normal social interaction, communication and cognitive skills. However, ABA has been criticised for being too inflexible, too intensive and too costly (about $35,000 a year).
Australian research is also focusing on links between nutrition and autism.
A team from the Royal Prince Alfred Hospital Allergy Unit, headed by consultant pediatrician Dr Velencia Soutter, wants volunteers to help evaluate the results of dietary modification in children with ASD.
The three-year study, which has involved more than 100 families so far, is the most comprehensive of its kind ever undertaken.
Previous research has pointed the finger at gluten, found in wheat, and the milk protein, casein. Preliminary results of the RPA project also show a strong link between dietary issues and autism, Soutter says.
"From the first round of results we're able to say that lots of ASD children had bowel symptoms from the first years of life," she says.
Charts showed gut symptoms and colic preceded behavioural problems and there were indications that removing suspect foods from a child's diet had a modifying effect on behaviour.
"What we've seen so far is that some children have had gains as a result of looking at diet, where they've become less irritable and more compliant," she says.
"As a result they have started to learn and to focus a lot better, which has improved the way they interact."
The study is also examining the connection between ASD and leaky gut. This occurs when children excrete excessive amounts of gluten and casein opioids in their urine.
"Central to a lot of the dietary thinking in autism is the concept that the opioids that are in wheat and gluten-containing products and in milk and other casein-containing products get through the gut wall and mean the brain doesn't function in an optimal way," Soutter says. "It may well be that the same problems that are irritating the gut are irritating the brain."
Soutter says another surprise finding was that there was a high use of antibiotics by ASD kids.
"One of the interesting thing is the autism kids not only had more ear infections, but were getting far more antibiotics per ear infection than other kids." It is too early to interpret this data, she says.
Another approach is based on combined principles of diet, supplementation, removal of toxins and heavy metals from the system, plus cognitive work.
An ailment that affects the whole family
Autism can be so dominant in the home of a child sufferer that the entire family unit can take on an "autistic way of being in the world", says the first study of its kind to investigate the effects of parenting a child with autism.
The Australian research found that parents, in an eerie echo of their autistic offspring, can lose their spontaneity, develop an over-regulated way of living and retreat from their community.
"Even though the parents didn't catch autism per se, the autism was dominant in the family relationship and the family developed a very autistic-like way of being in the world," says Dr Andrew Cashin, who runs a counselling service for children with autism and their parents.
Cashin's three-year study, which finished earlier this year, looked at ASD children aged from six to 10 from more than 50 families on the NSW Central Coast. Several strong themes emerged.
"The parents kept accommodating and accommodating and accommodating because that was the only way to achieve things or even keep the peace," Cashin says. "The other side is exhaustion that goes with the busyness of parenting a child with autism, but exhaustion also in an existential sense."
This psychological process provided a fertile ground for depression, he says. It also highlights the vulnerability of people like Daniela Dawes, who earlier this year pleaded guilty to the manslaughter of her autistic son.
"[Such people] have lost their spontaneity and energy in dealing with stress. They're constantly exposed to stress and have no new way of coping with it; they become overwhelmed and go into crisis," Cashin says.
Stress on parents could be minimised with more respite care and better resources for extended family to help carry the load. "Autism is a roll of the dice and it's not until it lands on you that you realise what the burden is," he says.
"We need to acknowledge that as a community."