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Fetal Alcohol Spectrum Disorder mislabelled, more widespread in WA than thought, researcher says

Fetal Alcohol Spectrum Disorder mislabelled, more widespread in WA than thought, researcher says



By Charlotte Hamlyn

August 12, 2015

Foetal Alcohol Spectrum Disorder is far more prevalent in Western Australia than the public is aware and is often mistakenly labelled as other conditions like ADHD, a leading researcher says.


Canadian doctor and academic Julianne Conry is in Perth to speak at a symposium being held at the University of Western Australia on Thursday.


The symposium will explore a range of issues surrounding Foetal Alcohol Spectrum Disorder, or FASD, which results from prenatal alcohol exposure.


It can cause social and behavioural problems, delayed development, birth defects, poor growth and brain damage.


In Western Australia some research has been undertaken to investigate the prevalence of FASD in remote communities like the Fitzroy Valley in the Kimberley, where one in eight children are believed to be living with the disorder.


However, there is very little data on how it affects the wider community.


Dr Conry has spent the past 20 years researching and assessing children and adults with FASD in her home town of British Columbia which is considered a leader in diagnosing and supporting people with the condition.


She said it was wrong to think FASD was a problem that only affected Aboriginal people in remote communities and that the public would be shocked to learn how many children are sufferers.


“We’re inclined to think ‘I’m middle class, it isn’t going to affect me’,” Dr Conry said.


“Certainly in North America as women have become employed at higher levels … [they] have begun to drink like the men.


“Then they’re having their children later in life, so they have already established drinking patterns.


“These are highly educated women but it doesn’t matter where you live or what your income level is, FASD occurs where drinking occurs.”


The Telethon Institute’s Raewyn Mutch said it was hard to get an accurate picture of just how many West Australians were affected by FASD because there was limited ability to diagnose it and few places that provided support or care.


Ms Mutch agreed there was a public misconception about which children were either at risk or already suffering from the disorder.


“There’s this shaming of certain parts of the community that are seen to have VB cans lying on the ground and them sitting on the grass and drinking,” she said.


“That’s in contrast to other sectors of our community who are in high heels holding champagne glasses.


“One sector of society is esteemed because of how they drink and socialise, another is shamed.”


FASD not formally recognised as disability


Developmental Disability WA is a not-for-profit group that acts as a voice for people with intellectual and other developmental disabilities and their families.


Chief Taryn Harvey said accessing support for FASD sufferers was particularly challenging because the disorder was not formally recognised in Australia as a disability.


“There’s always concern around giving something the label of a disability,” she said.


“But the way our systems work at the moment, it’s not until you have a label that you get support.


“It’s about recognising that FASD has life-long implications for people.”


Dr Conry agreed that defining FASD as a disability was an important step that Australia needed to take.


“I think having it recognised as a disability is really important because otherwise we’re calling it something else,” she said.


“Often a woman who is higher educated, or has higher socio-economic status, if she has a child who has FASD there has been reluctance to call it that because we haven’t gotten over the stigma.


“So instead the child has ‘ADHD’ or the child has ‘a learning disability’.


“There’s a big difference in the kind of support a child with a learning disability needs compared to a child who has FASD, who is going to likely need help all of his life, not just with his learning or reading and math but with his ability to live effectively.”


Formal recognition of the disorder would also assist the courts, which often deal with FASD-affected children, but currently have no mechanisms to effectively and efficiently identify individuals with the condition.


Research in North America shows that young people with FASD are 19 times more likely to be incarcerated.


Telethon to study number of children in detention with FASD


The Telethon Kids Institute is currently undertaking a study to establish how many children in WA’s detention centres have FASD.


WA’s Chief Justice Wayne Martin said the information that came from that research would be highly valuable.


“It’s very difficult to accurately identify precisely what the scope of the problem is because of the difficulty of diagnosis,” he Martin said.


“FASD children are at risk of failing to comply with the normal standards of behaviour that are expected from members of the community, as a result of suffering from a condition through no fault of their own.


“What we need is a humane and compassionate way of managing those people who are exposed to risk through no fault of their own in a therapeutic rather than punitive environment.”


Dr Mutch hopes this week’s symposium on FASD, which will bring together representatives from a range of government and community sectors, will prompt further discussion and change.


“Across the board, irrespective of which government sector you work in, we would all like more diagnostic services and we all want it yesterday,” she said.


“While we’re waiting for more, we see this debris of humanity building up, which is completely tragic.”