Foetal alcohol spectrum disorder
For 36 years Sharon Wallace stood on the sidelines watching her daughter’s life spiral out of control. It wasn’t until two years ago she found out why.
“When she started school, I knew Liz* was different,” says Wallace, 59. “She was extremely obsessional, defiant and couldn’t conform. She took silly risks and mentally couldn’t process things. She was initially diagnosed with ADHD.”
Over time, things got worse for Liz. She spent time on the streets and in jail, and struggled with alcoholism, even during her pregnancies. Two years ago, she went to a specialised clinic in Brisbane for answers. Three days of assessments and cognitive testing confirmed a diagnosis of foetal alcohol spectrum disorder.
“Before Liz’s diagnosis I hadn’t heard of FASD as there was limited information,” says Wallace. “When I was pregnant, I drank regularly. The doctor even recommended a glass of red wine for morning sickness, so who was I to argue?
“We’ve spent years struggling, being judged by others and given multiple diagnoses,” she says. “People don’t understand Liz’s disability because it’s invisible and there’s no education.”
For Wallace, the journey is far from over. She’s currently raising Liz’s three children, aged nine, 10 and 15. All three have FASD.
So, what exactly is FASD?
FASD occurs when alcohol crosses the placenta and causes damage to a developing baby’s central nervous system and other organs. The long-term implications are varied.
“The majority of these children and adults live with significant cognitive, behavioural, health and learning difficulties,” says Louise Gray, executive officer of the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD) Australia.
“They have problems with memory, attention, cause-and-effect reasoning, impulsivity, receptive language and adaptive functioning difficulties.”
Gray notes that children and adults with FASD are at risk of issues such as school suspension, expulsion or truancy, while adults may experience unemployment, homelessness, relationships issues and increased susceptibility to substance abuse.
In Australia it’s estimated that between 2 and 9 per cent of babies are born each year with FASD. The leading causes of death for FASD sufferers – who have a vastly lower than average life expectancy of 34 years – are suicide, accidents and substance abuse.
Despite this, the topic of FASD remains taboo.
“There’s a stigma around alcohol and pregnancy and alcohol use in general,” says Gray. “Raising awareness of alcohol harm struggles to get traction in a world where alcohol is supported and promoted. Since FASD was identified 50 years ago, prevention and awareness have been limited despite the proven harm.”
Trish Hepworth is director of policy and research at the Foundation for Alcohol Research and Education (FARE). She believes that alcohol branding influences a woman’s choice to drink, even when pregnant.
“There’s a dangerous trend of alcohol brands deliberately targeting women with marketing and social memes suggesting they ‘deserve’ a drink,” she says. “The alcohol industry sees women as a growth market and, unfortunately, myths around drinking in pregnancy, such as ‘one drink won’t hurt’, still exist.”
A recent study published in the medical journal BMJ Open supported this idea.
Researchers compared pregnant women’s alcohol consumption in Britain, New Zealand, Australia and Ireland, concluding that, in each, alcohol use during pregnancy is “prevalent and socially pervasive”.
Similarly, the 2016 National Drug Strategy Household Survey found that about one in four women continues to drink alcohol when knowingly pregnant, suggesting the message still isn’t getting through.
Fortunately, changes within the alcohol industry are on the horizon.
Food Standards Australia New Zealand are currently working on a proposal for mandatory pregnancy warning labels on packaged alcoholic beverages. If the plan is successful, labelling will be effective as of April 2020.
“FARE has long advocated for this, as less than half of all current packaged alcohol products have a pregnancy warning label and, [on] those that do, [the labels] are really small with ambiguous wording,” says Hepworth.
While warning labels may stop pregnant women drinking, it isn’t the answer for all. According to some estimates, 50 per cent of Australian pregnancies are unplanned. By the time these women are aware they’re pregnant, the damage to their baby may have already been done.
“More education is needed, and it needs to start young,” says Elizabeth Elliott, professor of paediatrics and child health at the University of Sydney.
“Just like smoking, high school kids need to know about the risks of alcohol and the harm to themselves and their unborn babies. Boys and girls need to be educated about reliable contraception, particularly when drinking.”
Elliott notes that further education and support are also necessary for health professionals.
“Research has shown us that a lot of GPs are uncomfortable raising issues about drinking during pregnancies or FASD,” she says. “They’re worried about stigmatising families and children and very few know how to diagnose, manage and get help for FASD.
“GPs need to talk to women and the message needs to be clear. If you’re drinking, use protection; if you’re planning on getting pregnant, quit the drink.”
New education tools may help health professionals overcome their reluctance to have these conversations.
Across the Hunter region, questions are currently being embedded in electronic obstetrics records. Health professionals are prompted to ask about alcohol consumption and, subsequently, prompted to advise of support services where necessary.
The development of the Australian guide to diagnosis of FASD and education workshops also aim to raise awareness and confidence among health professionals.
“Misdiagnosis, misjudgement of behaviour and lack of disability rights hampers FASD sufferers’ capacity to manage the tasks of daily living successfully,” says Gray.
“FASD is a lifelong disability but early diagnosis and intervention can support positive outcomes. For the most vulnerable, this could be life-changing.”
A recent study highlighted just how much. In Western Australia’s Banksia Hill Detention Centre, it was identified that more than one-third of young offenders had undiagnosed FASD.
“If the disability was recognised and supported, harm reduction, issue resolution and disability costings would improve,” says Gray. “I think detention in Banksia Hill costs about $250,000 per year per child. Early intervention would be a lot less than this.”
The government is taking notice.
Their Strategic Action Plan 2018-2028 aims to reduce the incidence and impact of FASD in Australia. The plan identifies four national priorities: prevention, screening and diagnosis, support and management, and priority groups and people at increased risk.
“The Australian government, in particular the Health Department, have led the way in Australia by responding to FASD,” says Gray. “Their efforts since 2012 have moved this agenda forward significantly and we’re now close to having a multidisciplinary diagnostic team in each state and the Northern Territory.”
Gray notes that Australia also now has NOFASD – a national parent-carer helpline and a national centre of clinical information – the FASD Hub and a national centre of research excellence.
Additionally, a recent call for a parliamentary inquiry was made by Senator Stirling Griff, who said more urgency and greater investment were required in raising public awareness about drinking during pregnancy.
However, there’s still some way to go.
“Australia is one of the highest consumers of alcohol in the world and high levels of consumption means that the FASD issue, both recognised and unrecognised, is huge and much more needs to be done,” says Gray.
“Other state and Commonwealth government departments need to address FASD, in particular the NDIS, which has yet to formally recognise FASD as a disability, despite it being twice as prevalent as autism.
“It’s a human right to have your disability recognised and accommodations made.”
As the sole carer of her three grandchildren, Wallace is now an advocate for FASD awareness and support for families. She wants others to stop blaming and start listening.
“For years I was judged as a bad parent and lost all my confidence and self-worth,” she says. “No one wanted to help me because they didn’t understand.
“I don’t want others to go through that. FASD is not curable. It’s a brain-based disability that’s invisible to an outsider. But if we work together, we can support families and change perceptions. The reality is no one deliberately drinks to harm their child.”
* Name has been changed.
NOFASD Australia’s helpline 1800 860 613
This article was first published in the print edition of The Saturday Paper on Oct 5, 2019 as "FASD and fallacies". Subscribe here.