Stigma and FASD

Stigma is a complex social process. It occurs where a person or a group of people are considered as less acceptable due to a specific trait or behaviour.¹⁵

Stigma plays a significant role in the experiences of people who are affected by FASD. It also restricts prevention and management of FASD throughout society.^{11, 12} Stigma is pervasive in all levels of society, particularly with respect to alcohol and other drugs, and even more so in terms of FASD.¹¹

The following section outlines what stigmatising experiences might look like for people with FASD, how this can impact women and how stigma can be reduced.

What does stigma look like for people affected by FASD?

Stigma can be perpetuated in many ways. Language and communication play a key role.^{11, 16} Using person-first language, such as saying ‘person with FASD’, helps to minimise stigma. It is also important to use language that avoids passing judgement.

Women who are planning a pregnancy, or are pregnant, may experience stigma in different ways when using a health service.¹² This may include:

• judgmental language during an appointment
• a healthcare provider avoiding the topic of alcohol because they are worried about passing judgement on the woman
• misinformation about low-level drinking during pregnancy
• direct judgement of women who have consumed alcohol during pregnancy.¹¹

What are the impacts of stigma on women?

Women who are planning a pregnancy, or are pregnant, may experience stigma related to alcohol consumption at different times.^{11, 12}

For example, if a woman tells her healthcare provider that she has been/ is drinking, and she feels judged, she might be less inclined to talk about this issue again.^{12, 17} She may also delay using services for diagnosis and support for her children, particularly if she fears that child protective services may become involved.¹²

Some research indicates that up to 50% of pregnancies in Australia are unplanned.¹⁸

These women may drink alcohol before discovering that they are pregnant.¹¹ Drinking during the early stages of pregnancy, before the pregnancy is known, can result in FASD. It is not something that the woman does knowingly, and it may have long term impacts on the baby. These women may experience stigma partially due to their unplanned pregnancy and partially because they drank alcohol before realising they were pregnant.¹² This can have significant impacts in terms of how a woman perceives herself, and she may start to feel shame as a result. This can have the impact of reducing her willingness to access appropriate health and support services.^{11, 12, 17}

How to reduce stigma

Stigma is complex and requires time and effort to reduce.

One approach that has been recommended by Australian peak body, FASD Hub, is to focus on language and communication. FASD Hub has developed the ‘Language Guide’, a set of guidelines focused on ‘suggested language for use in conversations, presentations and reports about FASD in Australia’.

The Guide emphasises that people with FASD are more than their diagnosis, have hopes and fears, families and friends, and can contribute to society. It offers a range of preferred terms to use in place of stigmatising terms, as well as a thorough explanation of why some terms or phrases perpetuate stigma. (More information on the ‘Language Guide’ is provided at the end of this document.)

Additionally, stigma can be reduced by taking a whole-of-society approach to preventing FASD, whereby the focus of prevention campaigns is on all members of society. This approach acknowledges that all members of society have a role to play in preventing FASD.

Some research suggests that supporting fathers and broader networks around pregnant women can be useful in preventing FASD and can therefore reduce some of the stigma that birth mothers experience if their child has FASD.^{11, 12}