"It's affecting people in plain sight and nobody knows," Jessica* says.
Foetal alcohol spectrum disorder (FASD) is the leading non-genetic cause of disability in children.
FASD refers to a range of neurodevelopmental impairments that are caused by exposure to alcohol before birth.
Alcohol can cause brain damage to the developing fetus, which can affect the person’s physical health, cognition and mental health throughout their life.
But advocacy groups say many children and adults could be missing out on the help they need because their FASD is going undiagnosed, with problems at school and odd behaviour often written off as just a “phase”.
- Foetal alcohol spectrum disorder (FASD) is the leading non-genetic cause of disability in Australia
- Diagnosis usually requires a multi-disciplinary assessment, so FASD may go undiagnosed or misdiagnosed due to a lack of awareness
- With the right support, a person with the condition can lead a successful life
It's not a phase you can grow out of
This is what happened to Jessica, who says there were clear signs she had issues throughout her childhood, but her symptoms were dismissed as phases she would grow out of.
You cannot grow out of FASD and, for Jessica, trying to live as a neurotypical person when she wasn’t one took a big toll on her health.
“By the time my Mum intervened, I was severely underweight, I had severe chronic fatigue syndrome,” she said.
A small number of people affected by FASD have facial features that make them stand out to those who know what to look for. But most sufferers don’t look any different from anyone else and, like Jessica, they can go through life not knowing why some things are so much harder for them than others.
“I struggle with executive function, so I struggle with maintaining a routine, making decisions, being able to prioritise, organise, those sorts of things,” Jessica said.
“To be in the world has been quite trying and it has taken years and years of my life to get to this stage where I can talk to you and I can start working towards goals again.
“I was told I was typical, that I should be able to do things that I could not do, and that’s incredibly damaging to my self-esteem, incredibly damaging to my development.
What is FASD and how can it affect someone?
- FASD is a term that covers any brain damage caused to a developing fetus by alcohol consumed at any stage of pregnancy.
- No two people with FASD will have the same symptoms. It affects everyone differently.
- Common challenges for people with FASD include issues with memory, language processing, learning, communication, executive function, emotional regulation and social skills.
- Physical health is also often impacted, with heart and eye problems fairly common.
- FASD is a lifelong condition and can’t be “fixed”, but people with FASD can live happy and successful lives with the right support.
It took Jessica about four years of medical appointments, specialists and assessments to get a proper diagnosis and she says many of the medical professionals she met did not know much about FASD at all.
Struggle to find medical experts and help
Anne Russell knows how difficult it can be to find answers about why a child is struggling to get by in the world.
Her son had been diagnosed with ADHD, but Ms Russell knew that wasn’t quite right for the symptoms he was experiencing, so she kept taking him to doctors, desperate to find answers.
“One doctor said, ‘Why are you doing this to yourself?’,” she said.
Ms Russell ended up travelling to Canada to attend a conference about foetal alcohol syndrome (now considered a part of FASD), which is where she found an expert who was prepared to properly assess her son and diagnose him.
But getting a diagnosis for FASD for both of her sons was not just hard from the point of view of finding experts to do it — it was also extremely confronting for Ms Russell, as she had to face the fact that her sons were struggling because she drank alcohol while she was pregnant.
“It was very hard, very tough,” she said.
Anne Russell now works to help other families understand FASD and what help is available to support them.(Supplied: Anne Russell)
“Not being able to talk to anyone about it. Even with my husband I was nervous, [thinking] would he leave me?
“[It was] horrible, just gut-wrenching.”
But Ms Russell says she needn’t have doubted her husband, who has been very supportive.
She has now set up a not-for-profit organisation to help families find information on both how to prevent FASD and what to do to help their family and loved ones who are affected by it.
“The sooner you can figure out that something’s not right, the sooner you can start parenting appropriately,” she said.
Alcohol is a teratogen — a substance that causes birth abnormalities. There is no known “safe” level of alcohol exposure to a developing fetus, meaning the safest option is to abstain completely from alcohol for the whole of the pregnancy.
'It's not about demonising women'
“There’s a huge amount of people who unintentionally expose their developing fetus to alcohol,” she said.
“What I’d love the community to know is that FASD and not drinking during pregnancy is actually a community responsibility.
“It’s not about the woman, it’s not about demonising alcohol, it’s not about demonising women who drink.
Ms Harrington said research showed many GPs and paediatricians did not feel comfortable asking a woman about her alcohol consumption during pregnancy, which meant FASD could be missed as the cause of a child’s problems.
“The research shows us that women actually want to know, they want to be asked, they want to be in that situation of understanding,” she said.
While there’s no way to fix brain damage that has been caused, there are ways to better manage a person’s strengths and weaknesses once they are known.
Jessica cannot change her childhood or the time she struggled through university not knowing why it was so difficult for her, but now that she knows what her strengths and weaknesses are, she has been able to change her life for the better.
“From where I was even just five years ago, just the knowledge and support has completely changed my life.”
*Jessica’s surname has been withheld to protect her privacy.