FactCheck Q&A: does Australia have some of the highest rates per capita of fetal alcohol syndrome in the world?
Australia has some of the highest rates per capita of FAS or FASD in the world. – Liberal Party backbencher Sharman Stone, speaking on Q&A on Monday April 11, 2016.
Fetal Alcohol Spectrum Disorders (FASD) is a group of disorders that include Fetal Alcohol Syndrome (FAS). They are caused by alcohol consumption in pregnancy.
FASD are associated with a range of birth defects, including characteristic facial features and abnormalities in brain structure and function.
Liberal MP Sharman Stone told Q&A that Australia has some of the highest rates per capita of FAS or FASD in the world. Is that right?
Excerpt from Q&A, April 11, 2016.
The Conversation is fact-checking claims made on Q&A, broadcast Mondays on the ABC at 9:35pm. Thank you to everyone who sent us quotes for checking via Twitter using hashtags #FactCheck and #QandA, on Facebook or by email.
Checking the data
When asked for a source to support her statement, Stone referred The Conversation to data from Australia’s first ever prevalence study of FASD, the Lililwan project in the Fitzroy Valley of Western Australia.
Meaning “all the little ones”, Lililwan brought together experts in local Aboriginal culture, Aboriginal and Torres Strait Islander health, paediatrics, research, epidemiology and human rights.
The project aimed to estimate the number of children affected by FASD and develop a FASD management plan involving each child’s family, doctor and teachers. The project also sought to educate community members about the significant risks of drinking during pregnancy. I am an author on some of the publications reporting on this research that are cited in this article.
Data from the Lililwan project in the Fitzroy Valley of Western Australia show that 120 per 1000 children, or 12% examined by the multi-disciplinary team of health professionals had physical features and neurodevelopmental impairment consistent with FAS or partial FAS. In 127 of the pregnancies studied, 55% of the mothers drank during pregnancy.
A 2015 paper on the data reported that:
The population prevalence of FAS/pFAS (partial fetal alcohol syndrome) in remote Aboriginal communities of the Fitzroy Valley is the highest reported in Australia and similar to that reported in high-risk populations internationally.
A study of the same data found that an additional 7% of children had neurodevelopmental disorder with prenatal alcohol exposure, giving a prevalence of FASD of about 19% or 190 cases per 1000 children.
These population-based prevalence data are consistent with high rates of documented prenatal alcohol exposure in these communities.
Among the highest in the world?
Research doesn’t show Fitzroy Crossing has the highest rates per capita of fetal alcohol syndrome in the world. Prevalence data are scarce, but it is fair to say this sample has among the highest rates we know of.
By comparison, a recent study in children of a similar age in the US midwest, the rate of FAS ranges from six to nine per 1000 children. The rate of partial fetal alcohol syndrome ranged from 11 to 17 per 1000 children, and the total rate of FASD is estimated at 2.4% to 4.8%.
One study of first-grade children in a South African community found a rate of FASD similar to that revealed by the Fitzroy Crossing data. In the South African population studied, the overall rate of FASD was between 135.1 and 207.5 per 1000 (or 13.6% to 20.9%).
It should be noted that the high prevalence rates in Fitzroy Crossing were obtained from a high risk population with a relatively small sample. They cannot be used to generalise about the scale of the problem across Australia. As I have said publicly before, FASD is not exclusively an Aboriginal problem and I rarely see an Aboriginal child among patients with FASD in my Sydney clinic.
We don’t really know the scale of the problem in other parts of Australia, because no other population-based prevalence data are available anywhere in the nation. Such data are expensive and time-consuming to collect, requiring detailed clinical assessments.
It may appear at first glance the problem has got worse; previously estimates of birth prevalence in Australian states and territories ranged from 0.01 and 0.68 per 1000 live births..
However, it is important to remember that these data were not population-based, relied on ad hoc reporting, or were incomplete data collections and are likely to have underestimated true prevalence.
Other evidence supports the under-recognition and under-diagnosis of FASD in Australia. Researchers have documented an urgent need to address failure of health professionals to ask about alcohol use in pregnancy (and hence recognise children at risk) and lack of health professional knowledge about how to diagnose FASD and where to refer for diagnosis.
Sharman’s Stone’s statement is broadly correct. Based on current – albeit scarce – global data, results from the Liliwan project in Fitzroy Crossing reveal among the highest rates per capita of FAS or FASD in the world. However, it is important to note this is a study of a high risk population and cannot be used to make generalisations about Australia as a whole. – Elizabeth Elliott
This is a fair summary of the facts and, importantly, makes it clear that the rate of FAS or FASD in one study in one small community is not representative of Australia as a whole. – Carol Bower
Disclaimer: The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.