Why we can’t move on from FASD diagnosis
Photo credit: istock 4maksym
Today, I spoke with the mother of a young man with FASD, who described the immense challenges he faces due to his impulsivity. She shared the ongoing struggle to get professionals to grasp the real risks he faces, particularly since his outward presentation is intelligent and articulate. To keep him safe, his mother remains constantly vigilant—a reality her son understands and accepts, with a level of insight that is, frankly, remarkable.
Does the diagnosis of FASD help him?
For the first time, this young man has been able to access disability supports, despite showing developmental issues as a child. His diagnosis only came at age 17, and the reason? Although prenatal alcohol exposure had been recorded at birth, it was only recently uncovered.
His mother didn’t have to explain to me why he can perform tasks under supervision a hundred times but struggles independently, or why, despite his skills, he can’t consistently apply them in daily life. We both recognised these traits as classic symptoms of brain damage caused by prenatal alcohol exposure.
But should we, as Eliason and colleagues argue in a viewpoint piece in the Lancet, move away from a diagnosis of FASD because it supposedly assigns blame to mothers? Let’s consider the arguments.
1. The diagnosis of FASD ascribes blame to mothers.
In Australia, alcohol is deeply entrenched in our culture. Research shows that drinking is often seen as a way to relax, socialise, and celebrate—it’s present at 35% of pregnancies and 55% of unplanned pregnancies, often before a woman even knows she’s pregnant. When I talk about FASD, I frame it as the result of exposure to a common environmental toxin—alcohol—rather than an individual choice to drink.
Would it be better to shield parents, especially birth mothers, from the knowledge that alcohol has impacted their child’s development? While it’s undeniably painful, withholding this information deprives families of an essential understanding of their child’s needs. And without this knowledge, we miss the opportunity to prevent future alcohol-exposed pregnancies.
In cases where children are in out-of-home care, there’s a concern that knowing they have FASD might lead them to blame their birth mothers, potentially damaging relationships. However, I’ve found that many individuals with FASD are accepting of their diagnosis. Understanding why they struggle with certain tasks more than their peers often helps them accept support and later advocate for themselves. Jessica Birch is an excellent example of someone who speaks powerfully on this topic.
I advocate for a no-blame, no-shame approach when discussing FASD. I believe we can reduce much of the stigma around this condition through careful language and by providing families with the right support. In certain situations, where revealing the diagnosis might increase risks, I might recommend using a more general term like “Neurodevelopmental Disorder” with service providers such as schools, while still ensuring parents receive the full diagnosis. This way, they can choose whether or not to share the specific details.
2. Indigenous families are over-represented.
Eliason points out that Indigenous families who have experienced intergenerational trauma are over-represented in the FASD population and asks, “Are we ok with that?” No, I am most definitely not ok with that. This is not a matter of being complacent about the over-representation of Indigenous families in FASD diagnoses—it is a call to action. Ignoring the diagnosis will not change these realities; instead, we need to ensure that Indigenous communities have access to culturally safe, informed, and effective supports.
FASD in Indigenous communities is complex and intertwined with the impacts of colonisation, systemic disadvantage, and intergenerational trauma. To dismiss FASD as merely a “label” that assigns blame is to overlook the broader context in which these challenges arise. The key issue is not the diagnosis itself but the lack of adequate resources and culturally appropriate services to address the needs of Indigenous families. By acknowledging FASD, we open the door to targeted interventions that can help break the cycle, provide families with the support they need, and ensure that future generations are not left to face the same challenges. It is critical that we break the nexus between FASD and entry into the justice system.
Rather than moving away from a diagnosis, we should be advocating for increased access to culturally safe diagnostic processes and support services for Indigenous families. This includes working in partnership with Aboriginal-controlled organisations to ensure the voices of Indigenous people are central in shaping how FASD is understood and addressed within their communities. Not addressing FASD directly risks perpetuating a system that fails to support the very families that need it most.
3. Other causes of neurodevelopmental issues may be overlooked.
In Australia, awareness of the impact of trauma on child development is widespread, particularly thanks to organisations like the Australian Childhood Foundation, which trains thousands of professionals every year. However, the awareness of prenatal alcohol exposure and its impact—FASD—is significantly lower.Many children with FASD struggle with self-regulation, and often trauma is seen as the primary cause. When therapeutic interventions fail to address these issues and the child’s difficulties worsen, a diagnosis of FASD can often explain what has been missed. These missed diagnoses represent lost opportunities for early and targeted interventions that could have made a difference.
4. It’s too easy to assign the label of FASD and overlook other conditions like autism.
In Australia, Autism Spectrum Disorder (ASD) is diagnosed far more frequently than FASD, even though both conditions occur at similar rates. Over 250,000 individuals with ASD are currently receiving disability support, compared to just 3,300 with FASD—a stark ratio of 75:1. This indicates that FASD is much more likely to be missed than over-diagnosed. The Banksia Hill study found that 36% of young people in detention had FASD, yet only one of them had been previously diagnosed.
In my experience working in a multidisciplinary clinic, we spend significant time differentiating FASD from other conditions such as autism. The diagnostic process is rigorous, ensuring that each child’s specific needs are carefully evaluated.
5. We should focus on function and need rather than diagnosis.
In Australia, we’ve learned to strike a balance between focusing on a child’s functional needs and acknowledging their diagnosis. It’s essential to address the functional impairments that impact their daily life, but a diagnosis like FASD is crucial for accessing services, particularly through the National Disability Insurance Scheme (NDIS). Once a diagnosis is in place, the focus shifts to interventions tailored to the child’s specific impairments, which will change and evolve over time. The diagnosis not only opens doors to critical resources but ensures the support provided is targeted and effective throughout the child’s life.
6. The diagnosis does more harm than good.
When I spoke with carers and professionals about the impact of understanding FASD, one foster carer described it as “someone turning a light on.” Similarly, the mother of the young man I mentioned earlier shared how his diagnosis gave her the clarity to understand why he struggles, despite his intelligence and insight. She now recognises that his behaviours, such as impulsivity and difficulty managing tasks independently, are rooted in a brain-based disability, not wilful defiance. This understanding has allowed her to adapt her approach to his care, ensuring he gets the support he needs to stay safe.
However, while the diagnosis has been crucial for her to better support her son, it has also highlighted another challenge—finding professionals who understand FASD well enough not to inadvertently increase his risks. The diagnosis helped her identify what her son needs, but she now faces the additional task of locating service providers who truly grasp the complexities of FASD and can offer interventions that are appropriately tailored to his impairments. Without this understanding, professionals may make assumptions about his capabilities, leading to interventions that don’t fit, ultimately increasing his vulnerability. While diagnosis rates are improving, much more needs to be done to ensure that professionals across various sectors have the knowledge and skills to support these children and their families effectively.
With thanks to the young person and his mother, who read and approved this article.
References:
Bower, C., Watkins, R. E., Mutch, R. C. et al (2018). Fetal alcohol spectrum disorder and youth justice: a prevalence study among young people sentenced to detention in Western Australia. BMJ Open, 8(2), e019605-e019605.
National Drug Strategy Household Survey 2019
NDIS Participant Data June 2024