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All There is to Know ABout Fetal Alcohol Spectrum Disorder
Fetal Alcohol Spectrum Disorder
This section explores Fetal Alcohol Spectrum Disorder (FASD) through a prevention lens. It provides an overview of FASD, the impact of stigma on women, and outlines FASD prevention efforts that can be implemented by healthcare providers and in the community.
FASD affects all communities in which alcohol is consumed and it requires a community approach to prevention. There is a role for everyone to play. Women need support from partners, families, friends and healthcare and social service providers to avoid alcohol when planning a pregnancy, and during pregnancy.
What is FASD?
FASD is the diagnostic term for an acquired fetal brain injury.
It results from prenatal alcohol exposure. This is where the fetus is exposed to alcohol during any stage of pregnancy (before birth).1 The physical, cognitive and developmental impairments in FASD vary between people.2
FASD characteristics and diagnosis
For people living with FASD, the impacts are lifelong.1
Some of the characteristics associated with FASD are apparent in childhood, while others will be more obvious later in life.3 The effects of FASD may not be seen at birth.1
Each person who has FASD may experience a range of different challenges and characteristics, including:
- structural and functional brain damage (sometimes a smaller head)
- other birth defects such as heart and eye problems
- distinctive facial features (but most do not)1
- difficulty processing information
- lack of understanding and difficulty following social rules and expectations
- difficulty connecting cause and effect
- challenges remembering and learning from past experiences 4
- difficulty controlling and/or regulating emotions 5
Some behaviours that children with FASD may display can be misjudged as typical to a particular phase of development, however when the behaviour continues as the child gets older it may be less tolerated.
For example, a person with FASD may not understand cause and effect, so they might repeatedly do something despite experiencing negative consequences the first time. This is accepted behaviour for children because they are learning social skills, however adults are expected to understand the negative consequences and refrain from repeating the behaviour.
Accurate diagnosis and appropriate treatment are important as they can lead to better social and physical outcomes for people with FASD. Diagnosis can also help people with FASD and parents and carers to manage specific challenges.1
The first clinical guidelines for diagnosis of FASD were developed in 2016, called the: ‘Australian Guide to the Diagnosis of FASD’.6 (More information about the Guidelines is available at the end of this document.6)
Early diagnosis can ensure a person with FASD receives adequate care and assistance to help them reach their full potential. Early diagnosis also helps parents understand their child’s challenges better, which can assist in seeking appropriate medical or social support as they grow up.
“The diagnosis itself hasn’t changed anything for me – but it puts a name [on] it and I can now seek support for me and my child.”7– parent/carer
There are, however, limited services offering FASD assessment and diagnosis in Australia. Consequently, people seeking diagnosis for themselves or their children may need to wait for an appointment, travel to the clinic (sometimes interstate) and potentially cover the cost.6
Impacts of FASD
A lack of diagnosis may leave the parents/carers of children with FASD with significant challenges in providing support and managing their behaviour.7 Support for people with FASD will vary depending on their specific challenges and needs and may involve physical, behavioural and/ or social support. These may all require different healthcare providers.
Without diagnosis and support, many people with FASD are at increased risk of struggling with school3 and becoming involved with the legal system (as victims or offenders).3
A recent Australian study found that young people who are in contact with justice services include an overrepresentation of people with undiagnosed FASD.8
It was estimated that 36% of the 99 participants of the study had FASD, with the majority previously undiagnosed.9
In Australia, there is a lack of robust data to show how common FASD really is. Therefore, opportunity to fully identify the overall impacts is limited. The introduction of FASD diagnostic guidelines has helped in progressing our understanding of the impacts of FASD, including how commonly it occurs. However, more research needs to be done to collect data on FASD occurrence across the country.14
We do know that FASD affects a potentially large number of Australians and the impacts have the potential to be reduced with the implementation of effective prevention strategies.11, 12
How common is FASD?
FASD can occur in any child if alcohol is consumed during pregnancy.
Globally, it is estimated that of every 1,000 births, 7.7 children are born with FASD.13
Australian estimates for how often FASD occurs are limited, however we can model on North American data, since the two populations are culturally similar with respect to alcohol.10
In North America, roughly 2-5% of the general population will have FASD.10 Estimates are higher among populations that have experienced historical trauma, dispossession and systematic discrimination, where the number of people experiencing FASD might be 15-25 times higher than the general population.13 It is likely that these data under-estimate how common FASD is.
The higher rates among high-risk populations show the significance of early diagnosis to prevent repercussions that may otherwise be avoided.
No FASD resource
