The following is a statement presented in a public hearing for the Inquiry into the health impacts of alcohol and other drugs in Australia.
I am speaking today not only as the interim CEO of NOFASD, but also from a point of lived experience of FASD. Thank you for this opportunity to speak today.
For more than 25 years, NOFASD has been the national voice for living and lived experience, at the forefront of advocacy, education and support for individuals and families impacted by FASD. FASD is often overlooked in broader discussions on alcohol related harm, yet the impact of alcohol on a developing fetus has been known for more than 50 years in the English-speaking world.
The profound and far-reaching impacts of FASD remain under-recognised, with national AOD strategies leaving significant gaps in prevention, diagnosis and care. These gaps perpetuate health and disability justice inequalities and systemic disadvantage for individuals and their families.
FASD is caused by alcohol exposure at the earliest stages of the human life cycle. The impact is a lifelong physical brain-based disability, which is often hidden, misdiagnosed or a missed diagnosis.
It’s important to consider, when we talk about prenatal alcohol exposure, that the onset of pregnancy symptoms is commonly experienced at around five to six weeks and that at least 40 per cent of pregnancies in Australia are unplanned or unintended.
With this in mind, and when we take into consideration Australia’s drinking culture, we can start to create a picture of what the actual prevalence of FASD in Australia could look like. Canada and the US report national prevalence rates of around four and five per cent, respectively.
Australia’s alcohol consumption rates are higher than those of these countries. Australia needs a national prevalence study.
Given that I am the interim CEO of NOFASD, you would likely assume my knowledge of FASD to be reasonable. And with previous management roles working with marginalised populations, I too believed this when I joined NOFASD seven years ago. However, I soon learnt that I came with my own unconscious bias. Like the majority of society, I ‘othered’ FASD. I learnt for the first time seven years ago of the harms that can be caused by alcohol even before a pregnancy is confirmed.
The realisation soon emerged that the processing, planning, working memory, learning, development, and sensory and behavioural challenges that my blonde-haired, blue-eyed 12-year-old son experienced could in fact be due to his alcohol exposure before my pregnancy confirmation at 6½ weeks.
Given that I was a ‘Friday night social drinker’, my son’s exposure to alcohol in utero would be deemed as low by the layperson on the street. However, in clinical terms the three to four occasions of six standard drinks would be defined as moderate risk in pregnancy. To cut a very long story short, my son was diagnosed with FASD in 2021, at the age of 14.
With diagnosis came many mixed emotions, guilt and regret amongst them. However, the resounding ones were validation and relief: we now had an answer to help us better understand our complex and beautiful young man.
Individuals with FASD have a diffuse brain injury and often function at half their chronological age. They are at much higher risk of experiencing mental ill health, substance misuse disorders, health issues, disengagement from school and justice involvement.
We have dinner table conversations about causal factors around the increased rates of incidence across these areas. But how often do we actually talk about alcohol harm in utero as a potential factor? Mainstream education is needed. We must have courageous conversations and address the elephant in the room, which is alcohol.
I could spend the next week detailing lived-experience stories of the families and adults we support at NOFASD—heart-rending stories of: child-to-parent violence; self-harm; high levels of vulnerability due to wanting to fit in; repeated school suspensions; behavioural reports due to the child’s needs not being met in classrooms; the toll of repeatedly having to defend the brain based behaviours that others judge as intentional and as poor parenting; the burden of repeatedly retelling the story to explain behavioural symptoms, accommodations and supports that the child needs, even to the very people who are being employed to provide said supports; the overwhelming sense of not being heard, listened to, believed or understood; and the constant advocating for what should be basic human rights across all systems that individuals engage with.
The Australian Department of Health and Aged Care should be applauded for their commitment to the implementation of the National FASD Strategic Action Plan. However, FASD prevention and training must be embedded into the national AOD framework. Universal screening for alcohol use in pregnancy, sustained public awareness campaigns and culturally safe education programs tailored to at-risk communities are essential. FASD informed care must be implemented across AOD services—we’ve heard such an example today talking about AOD services—with treatment models adapted to recognise the approaches required to support individuals with a brain-based disability rather than continuing cycles of ineffective rehabilitation.
Through education, policy reform and sustained investment, we can prevent harm before it occurs, but we must remember: FASD is not just a health matter; it is a social matter as well. It needs cross-sector collaboration, recognition and support—something that has been championed by our organisation and many others for more than 25 years now, and something that really needs to be actioned soon.
