Wednesday, 11 August 2021
Statements by Senators
Fetal Alcohol Spectrum Disorder
[by video link] I rise to belatedly speak on the community affairs report on effective approaches to prevention, diagnosis and support of Fetal Alcohol Spectrum Disorder. This was an inquiry I initiated in 2019 with the hope of building awareness of FASD and shaking up the slow progress on tackling this insidious condition. I was not in a position to speak on the report when it was first tabled in March this year, or since, but would now like to take the opportunity to put a deserving spotlight on this excellent report and to particularly thank the community secretariat for its hard work.
The report follows the 2012 report on FASD conducted in the other place, titled FASD: the hidden harm, which was another report on a condition which at that time was only starting to be understood in Australia. Unfortunately, like many reports in this and the other place, that report gathered dust. There was no government response to the report and a smattering of piecemeal efforts in this place. Before I launched the 2019 inquiry, only $20 million was dedicated to FASD-specific activities in more than six years. This included just $7 million over two years to deliver on a national FASD action plan. When you consider the reach and impact of FASD in every community, that amounts to serious neglect.
However, I'm happy and relieved that, since that time, the government's commitment has grown and now totals around $75 million, including $25 million for a national awareness campaign and almost $24 million announced in September to improve diagnostic and support services. The government acknowledged its funding commitment in its women's budget statement and it also acknowledged that FASD is 'fully preventable'. That says to me that we have a burden to act. We must act. If we don't do everything we can to prevent this condition and to support those who are born with it, we are abrogating our responsibility as legislators. The government will fail its most vulnerable.
Why does this matter so much? It matters because FASD has no cure. This means the best tools we have are awareness and prevention. The developmental, cognitive, behavioural and health impacts of FASD are lifelong. Think of it as a condition that robs a child of their full potential. It causes problems with memory, learning, attention, impulse control, communication, planning ability, understanding of consequences, emotional regulation, social and life admin skills, speech and language. Children with FASD will struggle at school, and school is often the first time a parent will be aware their child is behind. FASD often results in poorer academic and employment outcomes, higher rates of homelessness and incarceration, and higher rates of mental health issues and substance abuse.
As I said previously, this is a preventable condition. The Senate report made 32 recommendations to improve the nation's response to FASD, addressing everything from prevention to improving diagnosis and support. I'm very eagerly looking forward to the government's response to each of these 32 recommendations, all of them sensible and reaching across every field that FASD touches—education, disability services, families and parenting support, professional training in the criminal justice system and more.
One of the recommendations is for the government to fund a FASD prevalence study so we can finally determine the known, not just suspected, FASD rate in Australia. We know Australia has one of the highest rates of drinking during pregnancy. That means that we must be prepared to learn then that we have one of the highest rates of FASD in the world. That would be an uncomfortable truth, but, once we do this, we will know the magnitude of what we're really dealing with. At the moment, it is estimated that anywhere between two and nine per cent of the population has misdiagnosed or undiagnosed FASD. I very much suspect that, with our strong social drinking culture, it will be far higher. We know, from the Senate inquiry, that there is still confusion over whether and how much a woman can drink in pregnancy. The myth persists that drinking in the third trimester is somehow okay. Thankfully, the NHMRC drinking guidelines now make it clear that no alcohol is safe at any stage of pregnancy. Previous drinking guidelines let down pregnant women.
FASD is an insidious condition—invisible, even—because children and adults with FASD will appear normal and often have a normal IQ. But their executive functioning is compromised. A person with FASD can struggle with memory, struggle to understand and follow instructions, struggle to pay attention and struggle to understand the consequences of their actions and decisions. They're not intentionally unreliable, undisciplined, lazy or forgetful. But the effect of alcohol on their developing brains means they will always struggle with basic life skills and abilities that you and I take for granted, such as making and keeping appointments. Managing this often requires an external brain, someone who helps with the everyday tasks of planning and reminding.
Children and adults with FASD have a higher incidence of incomplete schooling, difficulty holding down a job, homelessness, trouble with the law, mental illness and substance abuse, as well as difficulties with relationships, living independently and parenting children safely. When I first learned all of this, I could not ignore it; I wanted to bang the drum and make change. I'm pleased the government agreed to invest in an awareness campaign as a small first step, but the inquiry showed how far we still are from where we need to be.
Not even the medical profession is united on the gravity of what we are facing. I was shocked to hear, during the inquiry, that there are obstetricians and midwives who refuse to have a difficult conversation with women about their drinking, because, for them, being able to continue seeing a woman during her pregnancy is more important than the life outcomes of the baby she will deliver. Just think about that for a minute: they are more interested in keeping a patient on their books than looking after the health of her unborn baby.
Some of you may think I'm overreacting. Maybe you know women who drank in pregnancy, and their kids seem fine. There are a few things to note. Firstly, alcohol doesn't affect all women and all pregnancies equally. For some it will have catastrophic impacts on their baby and, for others, nothing noticeable. Secondly, FASD is often misdiagnosed, or masked by comorbidities. Often it is simply missed. The child may just be thought of as wilful and naughty, or forgetful, when in fact that is not true. As the inquiry was told, the cognitive and behavioural impacts of FASD often mean that someone with the condition can't—not won't. Only a tiny proportion of children with suspected FASD have actually been diagnosed, and it's nigh on impossible to be diagnosed as an adult. There are a number of reasons for this. Key among them is the difficulty of accessing diagnostic services. There aren't enough paediatricians trained to identify FASD, and there are only a handful of multidisciplinary clinics that offer the full spectrum of diagnostic services. If you live in a rural or regional area, diagnosis and treatment is much more difficult—impossible even.
A groundbreaking study of the Banksia Hill youth detention centre in WA found that 36 per cent of detained youth had FASD, the highest known rate in any custodial setting in the world. This has gone undiagnosed despite all the contact these youth have had with government agencies over their lives. When you think of how insidious this condition is and how its tentacles reach across every sphere of an individual's life in society, you realise how profound an impact FASD is having right under our noses. It needs to be tackled head on, through prevention and through better diagnosis, recognition and treatment. Until now, we've been almost ignoring it. We need to be brave enough to look at FASD with open eyes, understand its true prevalence, commit ourselves to prevention and not shy away from the task of diagnosing and supporting those with FASD, wherever we find them—every classroom, every home and every suburb. If we can do that, our society will be so much better for it. (Time expired)