To those of us who have an advanced awareness of FASD (either because we live with FASD, are a caregiver for a child who has FASD or through our work) it continues to be a major disappointment to realise just how many people in our community have either never heard of FASD – or have very mistaken views about this disability.
From those folk who do have some awareness I often still hear people refer to FAS, Fetal Alcohol Syndrome or even fetal alcohol disease – instead of using the correct name – Fetal Alcohol Spectrum Disorder, or FASD.
Let’s consider why using the correct terminology when speaking about this condition is important – and how using the correct name for this condition can assist in raising awareness and more understanding of this disability in the broader Australian community.
Back in 1973 when the first English language description of this condition was published in the Lancet by Kenneth L. Jones and David Smith, it was called Fetal Alcohol Syndrome and recognition of the condition was linked to some characteristic facial features. Since then, additional research has confirmed that these facial features occur in less than 20% of cases (as they are linked to prenatal alcohol exposure only at a very specific stage of the pregnancy when the facial features are developing on the fetus) and moreover, that this is a spectrum-based disability.
The official Australian diagnostic guidelines were created in 2016 and at that time the name of the condition was changed in Australia from Fetal Alcohol Syndrome (FAS) to Fetal Alcohol Spectrum Disorder (FASD) – which is pronounced as ‘faz-d’.
The updated terminology confirms the recognition that FASD is a spectrum-based disorder and accordingly helps to explain why there should be no expectation that any two people with FASD will present with exactly the same set of symptoms. The diagnostic guidelines still include recognition that some individuals will have facial features, but these facial features are not necessarily seen as indicative of having more severe impairments in the brain domains affected.
So why does it matter if we refer to FAS – instead of FASD?
If we are keen to raise awareness amongst the general population, we need people to start to recognise the words we use with an accurate understanding of what they mean.
If we want FASD to be less of a mystery we need to play our part in lifting the veil that surrounds it – which also sadly often involves some element of stigma due to the involvement of alcohol consumption (even when this has occurred, as is often the case, before a woman knows she is pregnant).
When the terms FAS and FASD are used inconsistently it can give rise to the perception that FAS is a more severe form of the condition, or is only related to a certain sector of our community, neither of which are accurate.
Speak to almost anyone in our community and refer to MS and they’ll know that you are referring to Multiple Sclerosis or mention MND and they’ll recognise that you are talking about Motor Neurone Disease. By using the correct terminology, consistently, we will reach a time where FASD is recognised as Fetal Alcohol Spectrum Disorder. Together with that more widespread recognition, we can build understanding about the various ways that the symptoms of this disorder may manifest – and in time parents and caregivers will not have to face the judgement and criticism for their so-called ‘poor parenting’ when their child experiences sensory overload or a meltdown.
So yes – language does matter! Let’s all commit to using the correct words consistently to name this condition and work together to build broader community awareness of FASD.
