A mother’s journey to secure a correct Fetal Alcohol Spectrum Disorder diagnosis for her son has become a powerful catalyst for change, highlighting the urgent need for improved awareness and support systems across Australia.

Angelene Bruce’s experience navigating the healthcare system to obtain an FASD diagnosis when her son was four years old reveals both the transformative power of early identification and the significant barriers families face in accessing appropriate care.

The Critical Difference of Correct Identification

The impact of receiving an accurate FASD diagnosis cannot be overstated. Bruce’s son, now 16, has avoided the secondary disabilities commonly experienced by individuals with Fetal Alcohol Spectrum Disorder who remain undiagnosed or misdiagnosed.

“Getting to that point was a difficult journey that included misdiagnosis, as well as managing the stigma and shame,” Bruce explains. However, the correct identification proved to be “the key to helping my son navigate the world with the unique challenges he faces neurologically.”

With access to a modest NDIS plan, her son has received ongoing FASD-informed interventions, resulting in minimal school disruptions. This stands in stark contrast to the experiences of many young people living with the condition who lack proper support.

Systemic Gaps Persist Despite Progress

Whilst early diagnosis and intervention have yielded positive outcomes, Bruce emphasises that significant systemic challenges remain. Even with appropriate FASD diagnosis and support, mainstream education systems often struggle to accommodate students with the condition.

“The mainstream school system simply could not appropriately support my son with his many symptoms, including sensory symptoms, of FASD,” she notes. This highlights a broader issue of inadequate infrastructure and training to support neurodiversity in Australian schools.

The disability remains largely overlooked in government policy and systems, partly due to persistent stigma directed towards biological mothers. This stigma can actively hinder access to Fetal Alcohol Spectrum Disorder identification in the first place, creating a barrier to the very support that could transform outcomes.

Breaking the Silence Around FASD

One of the most challenging aspects of Bruce’s journey was repeatedly explaining her son’s prenatal alcohol exposure to different health professionals, each conversation accompanied by feelings of shame and guilt.

“As my son got older, standing next to me during those conversations, he was taught that his disability was something to be ashamed of, rather than celebrating his unique brain and big strengths,” she reflects.

The reality, Bruce emphasises, is that alcohol exposure during pregnancy is never malicious. Many circumstances contribute to prenatal alcohol exposure, yet women are often left feeling isolated when they need support for their children.

September Awareness Campaign Gains Momentum

International FASD Awareness Month takes place each September, providing an opportunity to increase community understanding of this surprisingly prevalent yet overwhelmingly invisible disability.

The Red Shoes Rock campaign encourages people to wear red shoes or socks to spark conversations about Fetal Alcohol Spectrum Disorder, building awareness of its impacts, prevention and the support needed.

“The more people know and understand FASD, its impacts, prevention and support needed, the less children will be misdiagnosed or undiagnosed,” Bruce explains.

Advocacy Rooted in Personal Experience

Bruce has dedicated herself to advocacy and awareness raising, sharing her story despite the vulnerability it requires in a community with limited understanding of FASD diagnosis and support needs.

Her advocacy focuses on three key areas: pushing for better funding to access necessary therapies and support, improving FASD diagnosis processes and healthcare professional training, and prevention through public health promotion and regulation.

“I want every child with FASD to have that experience, to prevent the trauma, frustration and challenges that so many face when they aren’t diagnosed correctly or are undiagnosed,” she states.

Celebrating Strengths Whilst Addressing Challenges

Whilst discussing the challenges faced by people with Fetal Alcohol Spectrum Disorder remains important for improving support systems, Bruce emphasises the need to celebrate the incredible strengths of individuals living with the condition.

September provides a particular focus on recognising these varied strengths, moving beyond deficit-focused narratives to acknowledge FASD as a form of neurodiversity experienced by many Australians.

Bruce is calling on all Australians to join the awareness campaign by wearing red shoes, sharing information on social media and engaging in conversations about this disability. Her goal is clear: to improve her son’s future and ensure other families can access the early FASD diagnosis and support that makes all the difference.

Source: Fare