Extract from ABC News
Cheryl Dedman is passionate about breaking down stigmas around a disorder she knows all too well.
She has an adopted relative with fetal alcohol spectrum disorder (FASD) – a lifelong condition that can impact on people's motor skills, physical health and emotional regulation.
It is caused by a woman drinking alcohol while pregnant and is recognised as the leading preventable cause of prenatal brain injury, birth defects and developmental and learning disability worldwide.
Ms Dedman, from Tatura, in Victoria's Goulburn Valley, is the board chair of the National Organisation for Fetal Alcohol Spectrum Disorder (NOFASD), the peak group representing individuals and families affected by the condition.
She said it was very difficult to live with FASD, and to be a carer for someone with the disorder.
"Often these people, children [and] adults, they present really well but they are working so hard to just be a part of society," she said.
"Whilst they are working so hard their whole brain and their body is being drained so they have nothing left in their tank when they go home or even when they are out."
Flew to WA for full diagnosis
When Ms Dedman first became aware of NOFASD six years ago, they were living "very, very difficult" lives as they sought further information about the disorder her relative was dealing with.
She said reaching out to NOFASD and hearing from someone who understood what was going on was a big relief.
"We felt like we were living on another planet [and were thinking], 'Who can ever know what you are dealing with? How can anyone else ever understand?'" she said.
"There were no clinics [and] there was no diagnosis happening in Victoria, and that was back in 2017.
"NOFASD actually helped us to get a full diagnosis and we flew to Western Australia at that point for a full diagnosis."
Push to 'upskill' health professionals about FASD
As awareness about FASD grows, there are a number of key services available for receiving a diagnosis or for general information about the disorder.
Monash Children's Hospital in Melbourne provides diagnostic assessments of FASD through its Victorian Fetal Alcohol Service (VicFAS).
A list of health professionals and services with FASD awareness and expertise can also be found on the FASD Hub Australia website.
A national guide to help assist clinicians to diagnose, refer and manage the disorder has been available since 2016 (and updated in 2020).
University of Sydney professor Elizabeth Elliott, an expert on the disorder, said a lot had been done to educate health and justice professionals about it as well as teachers.
But she said diagnosis was patchy with only a few FASD assessment teams around the country.
"However, what we are trying to do is upskill general paediatricians, psychiatrists, psychologists and allied health professionals so they think about this early and they do their bit towards making the diagnosis," she said.
"There is certainly an under-capacity at the moment but that applies to children with ADHD and other developmental disorders, autism, as well as to children with fetal alcohol spectrum disorder."
'We want prevention'
Professor Elliott said prevention was key.
She said more federal measures on preventing alcohol harm were needed.
"That includes decreasing the readily available alcohol, increasing pricing and taxation and considering restrictions on advertising of alcohol and promotion of alcohol products," she said.
"All of the things that Australia has done so well with in regard to smoking to prevent harms from smoking."
The impacts of alcohol during pregnancy is one of the key issues Ms Dedman hopes to highlight on International FASD Awareness Day on September 9.
"It takes time because it is not something people want to talk about — there is alcohol involved," she said.
"People feel quite uncertain about talking about that because alcohol is such a huge part of our society.
"We want prevention. We talk about before you even know you are pregnant, not having any alcohol at all, because effects happen from early in the pregnancy."
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