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Providing the evidence base to reduce harmful AOD use in
Aboriginal and Torres Strait Islander communities
Fetal alcohol spectrum disorder (FASD) is a diagnostic term used to describe the range of mental and physical effects on the developing unborn baby that are caused by drinking alcohol during pregnancy. These effects range from brain damage and poor growth to birth defects and learning problems .
There is no single internationally accepted classification system for FASD . The Australian guide to the diagnosis of FASD was developed to standardise diagnosis of FASD in Australia as well as to assist clinicians in the referral and management of FASD.
The overarching diagnostic term of FASD simplifies the terminology and emphasises the primary importance of the severe neurodevelopmental impairment that results from an acquired brain injury caused by alcohol exposure before birth.
The diagnosis of FASD is complex and ideally requires a multidisciplinary team of clinicians to evaluate individuals for :
Currently the diagnosis of FASD can be divided into one of two sub-categories:
1. FASD with three sentinel facial features (similar to the previous category of Fetal Alcohol Syndrome without a requirement for growth impairment)
2. FASD with less than three sentinel facial features (which encompasses the previous Partial Fetal Alcohol Syndrome and Neurodevelopmental Disorder-Alcohol Exposed category) .
Children who have been exposed to alcohol during the first trimester of pregnancy may display facial features known as ‘sentinel’ facial features of FASD . These facial features are:
These facial features become less visible as the child becomes older.
Image:©2016 Susan Astley PhD, University of Washington.
Although these features may occur as normal variations in the general population, when seen in combination with a known exposure to alcohol during pregnancy, they are seen to be characteristic of FASD .
Babies who have been exposed to alcohol during pregnancy may show:
Children who have been exposed to alcohol during pregnancy may develop more slowly and have difficulty learning and controlling their behaviour . The effects may include:
FASD may be diagnosed at birth, but in many cases, the diagnosis occurs later, when the child is having problems with learning or behaviour . Early diagnosis and management improve outcomes and quality of life for individuals with FASD and their families [6, 7].
Alcohol passes from the mother to the unborn baby through the bloodstream. The unborn baby will receive the same concentration of alcohol in the bloodstream as the mother. The baby is not able to process alcohol the way the mother can and the alcohol damages the developing body and brain [4, 8].
Each stage of pregnancy poses risks for different parts of the unborn baby’s developing body, cells and organs. The first three months of pregnancy, when major organs are being formed, is a sensitive time. Throughout the pregnancy the developing brain is particularly vulnerable to alcohol exposure .
No level of consumption during pregnancy is considered safe . The Australian alcohol guidelines advise that the safest choice is not to drink alcohol when pregnant, planning a pregnancy or breastfeeding .
Fetal Alcohol Spectrum Disorder, is more likely if alcohol is consumed often and in large amounts (including binge drinking) while pregnant. However lower levels of drinking have also been linked with harm to the unborn baby. This means that both ‘how often’ and ‘how much' alcohol consumed are relevant to the risk of FASD .
Alcohol passes from the mother’s bloodstream into the breast milk [4, 11].The amount of alcohol in breast milk is similar to the levels in the mother’s blood. This can affect the baby’s feeding and sleeping patterns. Alcohol can also affect the mother by making less milk and/or affecting the flow of milk [4, 11].
Effects on the baby include :
The Australian guidelines to reduce health risks from drinking alcohol state that ‘breastfeeding mothers should be advised that not drinking is the safest option.’ (p.80).
The effects of FASD are life-long. However, there are a range of strategies which help to improve the long term outcomes for individuals and families affected by FASD .
Children with FASD appear to respond positively to the following behaviour strategies :
A diagnosis helps parents and carers to understand their child’s behaviours and needs and may help with securing support services in the community . Supporting women with alcohol dependency with health services that address their substance use problems and promote the health and wellbeing of the mother and child is beneficial for the family. Providing support to the mother may also prevent alcohol use in subsequent pregnancies and so avoid FASD in future children .
FASD can be prevented by not drinking alcohol during pregnancy. There is no safe time to have alcohol during pregnancy . For women who are planning to have a baby, are pregnant or breast feeding, the safest choice is not to drink alcohol.
Early identification of women who drink alcohol by health workers, GPs, and maternity services can reduce the risks of FASD . Routine screening of all women of child bearing age can be done using assessment tools such as Audit-C. This assists in establishing levels of drinking and creates opportunities to provide information, brief intervention or referral to support services. If a woman has been drinking while pregnant, it is never too late to reduce harm to the baby by stopping drinking . Where abstinence from alcohol is not possible for women of child bearing age, support to access contraception is also a strategy to prevent pregnancy and children being born with FASD.
The role of men in supporting women who are pregnant or breastfeeding to not drink alcohol during pregnancy and breastfeeding is also important .
At a community level, FASD can be prevented by promoting awareness of the harmful effects of drinking alcohol while pregnant, reducing unplanned pregnancies through the use of contraception and reducing the ready availability of alcohol .
The prevalence of FASD in Australia is difficult to determine due to :
Various studies using data from states and territories have estimated rates at 0.01 to 1.7 per 1000 births in the total population. However given the limitations already outlined in collecting information on FASD, it is generally accepted that these figures are likely to underestimate the prevalence of FASD in Australia .
Internationally, estimates of FASD range from 2.0 to 7.0 per 1000 in mainstream populations, with prevalence higher in vulnerable populations .
FASD is not unique to Indigenous communities. The potential risks of drinking while pregnant are an issue for all Australians. Overall, fewer Indigenous women drink than non-Indigenous women (71% compared with 77% respectively) . However, Indigenous women of child bearing age (18-44 years) are less likely to drink at low risk levels than non-Indigenous women of child bearing age (28.4% compared with 42%), and more likely to drink at risky/high risk levels (11.6% compared with 9.5%) . Analysis of information from the 2008 NATSISS on alcohol consumption during pregnancy found that 80% of mothers of Indigenous children aged 0-3 years did not drink during pregnancy,16% drank less, and 3.3% drank more or the same amount of alcohol during their pregnancy .
Various studies using data from states and territories have estimated rates of FASD at 0.15 to 4.70 per 1000 births for the Indigenous population . These figures are likely to underestimate prevalence given the limitations in data collection and lack of recognition for FASD in Australia. One study has found very high rates of FASD in some remote communities with the number of cases diagnosed at 120 per 1000 for children born between 2002 and 2003 .
A number of projects are being conducted to find out more about FASD and to address alcohol use during pregnancy in Indigenous communities. These include:
Accurate data on the prevalence of FASD is needed to inform prevention strategies and services. At present there is no requirement to count or report FASD nationally and alcohol use in pregnancy is not routinely screened for .
The newly developed agreed guidelines for the diagnosis of FASD will assist in identifying FASD and providing early management and advice to families. Further work is needed to provide specific support services for FASD and to increase the capacity of health and other services to respond to families affected by FASD .
The example of Marulu: the Lililwan project has shown that FASD prevention strategies in Indigenous communities are effective when driven by community led initiatives.