Discussions about Fetal Alcohol Spectrum Disorder (FASD), disabilities caused by prenatal alcohol exposure, always prompt two questions.
The first question concerns the quantity of alcohol which causes FASD. Alternatively, with different wording, the question might be how much alcohol can be consumed safely?
The second question, often shrouded in the myth that FASD is an Aboriginal problem, is usually asked with some disbelief and concerns the prevalence of the disorder. In short how many people in Australia have FASD?
We cannot conclusively answer these questions, and we may never answer either question with great certainty.
There are not many research ethics committees likely to approve a research proposal to examine willing female subjects and experiment with the quantity, timing and frequency of alcohol exposure during pregnancy.
This won’t happen.
To accurately answer the second question every person in Australia would need to be screened, and positive screens then referred for a diagnostic process which can take up to two days. The expense and scale of such an undertaking would be prohibitive.
Australia currently has less than ten operating diagnostic clinics and a limited workforce to do this.
However, we do know a great deal about these two questions, and we certainly know enough to wonder why the Australian public is not entitled to adequate and clear warning information about alcohol in pregnancy, good advice around FASD and further research on FASD.
We also know enough to wonder why screening for FASD is not undertaken more routinely when children demonstrate developmental delays and behavioural difficulties.
FASD is far more common than autism.
Of question one we know that there is a dose-response relationship and that the more alcohol consumed, the higher the risk of FASD and the worse the symptoms of the disorder could be.
We know that leading and recognised health authorities in the world recommend total abstinence from alcohol during the planning of a pregnancy, when women are sexually active and not using birth control, and throughout the pregnancy.
We know that alcohol is not just a commodity, but a powerful neurotoxin and a teratogen which is proven to affect the developing fetus.
We know that as medical knowledge and research improve, it is increasingly evident that even small amounts of alcohol make changes to a fetus which can be detected in three-dimensional craniofacial images. This was demonstrated by the Melbourne-based Murdoch Children’s Research Institute in 2017.
We know that Australians do not fully understand the quantities of alcohol that they consume. Often what is termed social drinking borders on what is technically binge drinking. The term ‘one glass’ or ‘one drink’ has many different meanings.
We also know that animal models, from zebrafish to rodents, demonstrate physical and behavioural changes even at low levels of exposure to alcohol.
We also know that less than 20 per cent of people living with FASD have identifiable physical characteristics to indicate that they are living with FASD. The much larger group who remain have no visible physical appearance which can be linked to FASD and yet they may have crushing brain damage which impacts all aspects of their capacity to learn, grow and function in a community.
In short, we know enough to give a clear and simple message that pregnant, planning a pregnancy or possibly pregnant no alcohol at all is the only health advice which should be communicated and that it needs to be well known.
What do we know of the second question and how many Australians are living with FASD?
We have a proven methodology to study a population cross section and use this data to make population estimates across a broad group. We also know that these studies have been done in other countries, most recently in the United States in four US communities, and in the Greater Toronto area of Canada. From these two studies we know that conservatively between 1.1 and 5 % of the studied general population are living with FASD, higher estimates than previous research indicated.
These mainstream population studies have not been undertaken in Australia.
However, in Australia we have examined prevalence in special populations in communities with high levels of alcohol abuse and these studies documented high rates of FASD.
In a study of an Australian juvenile detention population, the prevalence of FASD was more than one-third of the cohort, the highest ever documented worldwide.
In all of these studies very few of the study subjects had previously been diagnosed, and yet indicators were clearly present and had been noted throughout their growth and learning.
What we know from these studies is that where alcohol is consumed, pregnancies are exposed, and FASD is the result for some of these pregnancies.
If you look for FASD it will be found, whether it is recognised or diagnosed. We know that the characteristics of the general population of Canada and the United States are similar enough to provide insight into the possible mainstream prevalence of FASD in Australia.
We can estimate that our prevalence will be similar or higher when we consider that based on World Health Organisation estimates, Australians consume two litres more alcohol per annum than the average American.
We also know that almost 50 per cent of pregnancies in Australia are unplanned and that approximately 80 per cent of Australian women consume alcohol. These two figures undoubtedly contribute to alcohol-exposed pregnancies as women, unaware that they have conceived, consume alcohol.
We can answer these questions well enough to know that Australia is long overdue for governments and communities to recognise the harm that is being done and the cost of this harm through alcohol-exposed pregnancy.
Australia is long overdue for a prevalence study directed at mainstream populations.
Australia is long overdue for clear, mandatory warning labels on alcohol products.
In prevention work, being FASD-informed requires recognition that FASD is not the sole responsibility of women. It is the responsibility of families, communities and professionals to educate, inform and provide supports.
FASD educators, justice professionals, drug and alcohol workers and other service providers need to be FASD-informed and alive to the possibility of its presence.
Being FASD-informed means understanding the disorder well enough to provide useful support to parents and carers instead of making assumptions about their parenting skills.
We know enough about FASD to inexpensively screen for it and diagnose it to enable better supports and interventions. We have many effective approaches to managing FASD and improving lives for individuals living with FASD and their support networks.
We know enough about FASD to know that alcohol is the only cause and therefore as a product this risk should be widely known and be a high priority for health professionals to question, educate and support.
We absolutely know enough to recognise FASD as a disability in Australia, as the AMA and many prominent legal experts have demanded.
We never knew how many cigarettes caused cancer, yet we responded effectively, and Australia became a global leader in the reduction of tobacco-related health risks.
It is about time we recognised, as a whole community, that we will not have exact answers to these prevalence and quantity concerns, but this knowledge gap cannot excuse the lack of action to address this disability.