From Misdiagnosis to Understanding: Sharing our FASD story
During FASD Awareness Month, I share my story to help break the stigma, and support people on a similar path to finding the best care for their children.
The most important thing is the health and wellbeing of our families and communities. However, alcohol consumption during pregnancy has direct and adverse impacts, such as miscarriage, stillbirth, premature birth and lower birth weight. These outcomes impact Australian families and the wider community.
In addition, alcohol consumption during pregnancy can cause Fetal Alcohol Spectrum Disorder (FASD) — the leading cause of non-genetic, developmental disability in Australia. Like many other disabilities, people who are born with FASD have this condition for life.
According to the National Health and Medical Research Council (NHMRC) Australian Guidelines to Reduce Health Risks from Drinking Alcohol, when pregnant or planning a pregnancy you should not drink alcohol. When breastfeeding, it is safest not to drink alcohol. Even a small amount of alcohol can harm the developing baby and may have lifelong effects.
Without diagnosis and appropriate interventions, people with FASD have a higher likelihood of experiencing mental health issues, alcohol and drug problems, disrupted school experiences, contact with the criminal justice system, and unemployment and homelessness. As a result, many adults with FASD may not be able to live independently.
In Australia, there is a serious lack of opportunities for individuals to receive a FASD diagnosis. This means that people with FASD and their families and carers have difficulties accessing disability support services and funding.
The Government is committed to increasing awareness about the use of alcohol products during pregnancy and breastfeeding. We are working closely with the Government to implement public education campaigns around FASD to improve the overall health and wellbeing of all Australians.
Alcohol companies should implement mandatory alcohol product labelling (including health warning labels and consumer information) as soon as possible and well before the deadline of 31 July 2023.
There is also a significant need to improve the level of knowledge among health professionals about FASD, how it may be identified and provide appropriate referral pathways to access support for people with FASD and people at high risk of giving birth to a child with FASD.
To ensure people with FASD get all the support they need, there should be a formal recognition of FASD as a disability and that FASD should be identified as an issue that affects the whole community.
Research from Western Australia also shows that at least a third of young people in prison have FASD. Therefore, we need reforms in the criminal justice system, such as raising the minimum age of criminal responsibility from 10 to at least 14 (which is now happening in ACT, but not other jurisdictions), and those entering the criminal justice system should be offered (or provided with the) an opportunity to undertake a FASD diagnostic assessment, where appropriate and relevant to their sentence.
Given that FASD is caused exclusively by the consumption of alcohol products, it was important for alcohol products to carry a mandatory, visible and clear warning label to alert the community to the risks of FASD.
After more than 20 years of research and advocacy by health groups, community organisations and people with FASD and their families, in 2020 visible health warnings were made mandatory on alcohol products. (The first application for a pregnancy health warning came in 1996 by the Australian National Council on Women.)
The community hopes to see these health warning labels on all alcohol products in Australia well before the 31 July 2023 deadline.
There have been some other important milestones in reducing the risk of FASD as well. In 2012, FARE appeared at an Inquiry into FASD held by the House of Representatives, which provided a range of recommendations around FASD. Between 2013 and 2016, two national FASD strategic actions plans were also developed. A FASD diagnostic tool was also developed in 2016 by clinicians and academics and supported by the government.
FARE has also received government support to run health promotion programs providing the foundation for future prevention campaigns.
In 2014, FARE launched Women Want to Know, a program to provide practical resources to support health professionals to have conversations with pregnant women who weren’t receiving much information or were hearing conflicted messages, about alcohol consumption. Between 2013 and 2021, FARE also ran Pregnant Pause – a campaign supporting Canberra mums-to-be to go alcohol free during their pregnancy.
In 2020, FARE received funding from the Australian Government Department of Health to undertake the FASD – National awareness campaign for pregnancy and breastfeeding women. The development, delivery and evaluation of this nationwide awareness program will run from July 2020 to June 2024.
Are you or your organisation interested in this issue and happy to advocate for reform with decision-makers? Send an email to FARE’s Policy and Research Team at info@fare.org.au.
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During FASD Awareness Month, I share my story to help break the stigma, and support people on a similar path to finding the best care for their children.
The groundbreaking national health campaign, Every Moment Matters, continues to increase awareness about alcohol, pregnancy and breastfeeding.
After last year’s massively successful campaign, the Red Shoes Rock team is back and ready to rock!
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FARE acknowledges the Traditional Owners and Custodians of the lands and waters on which we operate throughout Australia. We pay our respects to Elders past and present, and recognise the continuing connection to country of Aboriginal and Torres Strait Islander peoples.
©2024 FARE
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FARE acknowledges the Traditional Owners and Custodians of the lands and waters on which we operate throughout Australia. We pay our respects to Elders past and present, and recognise the continuing connection to country of Aboriginal and Torres Strait Islander peoples.
©2024 FARE
Privacy Statement
T&C
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