Kristy-lee’s story
Understanding FASD: Why support starts with recognition
For paediatric occupational therapist Kristy-Lee, the realities of Fetal Alcohol Spectrum Disorder (FASD) are both professional and personal. Years of supporting children and families as a health professional, combined with her own experience caring for children with FASD, have given her a unique perspective on the condition and its impacts.
One young girl in particular changed the way she viewed the condition. Known here as “Miss Nine”, the child came into Kristy-Lee’s care at the age of nine, and like many children living with FASD, had a complex history and multiple support needs. As Kristy-Lee got to know her, she realised that the biggest barriers weren’t the challenges associated with FASD itself but rather the misunderstandings, assumptions and gaps in support that surrounded her.
“Each and every time, the FASD came through as the big barrier.
“People not understanding it, people expecting that if she mastered something once, that she would have it all the time. And when that didn’t happen, she was labelled as being defiant, or lazy, or needing more parenting.”
What she needed, Kristy-Lee realised, was individualised support and careful planning.
School drop-offs, shopping trips and family outings all required preparation. Small details that might seem insignificant to others could completely derail a day.
“You have to absolutely pre-empt every single possibility.”
Kristy-Lee says Miss Nine would often become overwhelmed by unfamiliar environments or unexpected changes and she would behave in ways that would invite judgment from people around them.
“They don’t have to say anything, but you can tell they’re thinking, ‘Why are you letting this happen?’” she says.
In those situations, to Kristy-Lee nothing had really gone wrong.
“She would just get overstimulated.”
Experiences like these reinforced the need for FASD to be understood as a brain-based disability, not simply a behavioural issue.
“It’s not that they won’t do something, it’s that they can’t.”
As an occupational therapist, Kristy-Lee has spent years helping families understand what that means in practice.
“Everything we do in life has got a sequence, a routine to it. The way we brush our teeth, the way we drive our cars, the way we get dressed.”
For many children with FASD, those routines can be disrupted.
“Those sequences are missing. They just miss chunks of bits and pieces.”
Kristy-Lee sees this regularly in education, where a child may learn a skill one day but struggle to apply it in a different setting the next. What can look like a lack of effort is often a difficulty with organising thoughts, making decisions, remembering information and following through on tasks.
She says that too often, children with FASD are expected to respond to interventions designed for other developmental conditions, despite the unique impacts alcohol exposure before birth can have on the brain.
“These kids need brain-based help, scaffolding and prompting.”
And rather than asking why a child isn’t complying, Kristy-Lee encourages adults to look beyond the behaviour.
“Question the intention, question the behaviour, question the diagnosis.”
Carers need support too – she knows from experience that caring for a child with FASD can be isolating, particularly when family, friends or professionals don’t understand the condition. Connecting with others who have similar experiences can make all the difference.
“Find that community that supports you because some crazy stuff’s going to happen.”
Miss Nine is now 16.
The child who once struggled to navigate everyday situations has matured, built friendships and recently celebrated a milestone many families take for granted: her first sleepover.
When reflecting on an experience that has at times thrown up all sorts of unexpected challenges, Kristy-Lee says she “would do it all again.”
Those experiences continue to inform her advocacy. Over the years, she has seen children collect what she describes as an “alphabet soup” of diagnoses while their underlying needs remained unrecognised.
“The amount of mums that I work with that have now got 12, 13 and 14-year-olds and nobody’s ever asked them the question (about prenatal alcohol exposure).”
“So all these years of intervention haven’t been working because potentially we’ve gotten the diagnosis wrong.”
Kristy-Lee believes that conversations about alcohol use during pregnancy should be routine. Maternal health nurses, GPs and other clinicians should ask the question early, record the answer and ensure that information remains available if a child requires assessment later in life. Earlier recognition can dramatically change a child’s pathway.
Prevention is equally important.
“We need kids and teenagers, when they’re having their early conversations about safe sex and consent, to understand before it happens that FASD is a risk.”
“How are we supposed to change things over a generation when the youngest generation don’t know that this exists?”
After years of supporting children and families both professionally and in her personal life, Kristy-Lee is looking to the future with optimism: awareness is growing, conversations are starting and more people are beginning to understand the realities of FASD and what is possible when suitable supports are available.
“If we get the right scaffolding in place early on, these little people can actually do amazing things.”