‍Whānau who are supporting someone with Fetal Alcohol Spectrum Disorder (FASD) feel like they’re in the trenches, and that their experience is invalidated and unseen. I hope that sharing my story helps shed light on how hard it is, how important education and community are, and that there is hope if we work together.

Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term for a neuro-developmental disorder caused by alcohol exposure to an unborn baby, resulting in complex physical, behavioural and intellectual problems. (Learn more in the article ‘What is FASD’.)

Over the years, I’ve found myself repeatedly explaining why my daughter responded differently to situations, why traditional behavioural and parenting approaches weren't working, and why her challenges were not a matter of choice or motivation.

Eventually, my frustration became a catalyst for change. I established my own business, Succeed Differently, focused on understanding FASD through a neurodivergence lens and providing practical, strengths-based strategies for supporting individuals and whānau. My goal was to help others to feel supported on the long and often lonely FASD pathway.

One of the biggest barriers with FASD is getting a diagnosis. The process can be incredibly difficult, expensive, and challenges are non-visible. Having a child with FASD also carries a lot of stigma and shame for birth mothers, despite the fact that no one intentionally drinks to harm their baby. Many women don’t even know they’re pregnant when they’re drinking or have been told inconsistent messaging around safe amounts of alcohol during pregnancy. In this way, shame and blame are barriers to diagnosis, but without this information, families, teachers, and professionals are left trying to understand a child’s needs without access to the full picture. You can read more about getting an FASD diagnosis here.

Even if you get a diagnosis, FASD remains poorly understood and under supported in New Zealand. This means advocating for your child is often a constant, draining and overwhelming part of parenting whilst also trying to support your child’s daily living skills and additional needs.

Many professionals receive little training in attachment, brain development, and neurodivergence, even though these are not niche topics. It is estimated that FASD may affect up to 5% of New Zealand’s population. Furthermore, up to 20% are recognised as neurodivergent, and another 20% display overlapping or co-occurring neurodivergent traits. This means more than one million Kiwis experience the world through differences like FASD, ADHD, autism, or dyspraxia, and it is highly likely that every school and community is supporting children with FASD, diagnosed or not.

Whether it's at school, with health professionals, or within the wider community, you often find yourself needing to explain, educate, and advocate with others about your child. Professionals are incredibly busy, and opportunities for meaningful conversations that help explain brain-based difference are often limited. As a result, explanations happen in small pieces rather than as a complete picture. There is never enough time to sit down and fully explain the ‘why’.  A brain that has been affected by FASD cannot always access information stored in working memory, and dysmaturity (a significant gap between a person's chronological age and their developmental age) appears as immaturity (An individual may function socially, emotionally, or adaptively like a much younger child, despite having average intelligence or strong verbal skills. Being unable to remember sequences, or multi-level instructions is a key component of FASD.  

When one challenge improves, another often emerges, and it can feel like we are starting our conversation all over again. As a parent, I find myself continually advocating for the reality of dysmaturity and the support my child needs with everyday functional skills, whether that is remembering to use the toilet, tying shoelaces, managing personal hygiene, or following daily routines.

As tamariki living with FASD get older, these difficulties are often misinterpreted as laziness, defiance, or a lack of motivation, particularly when they appear capable one day but struggle with the same task the next. However, this inconsistency is a recognised feature of FASD, not a reflection of unwillingness. FASD affects adaptive functioning, the practical skills needed to navigate everyday life. A person may achieve well academically or perform strongly on standardised tests yet still experience significant difficulties with real-world tasks such as managing money, understanding time, organising daily activities, assessing risk, or crossing a busy street safely. These challenges are often invisible to others but can have a profound impact on independence and participation in everyday life, adding pressure on parents to support our tamariki in these tasks whilst also educating the wider community.

I have come to believe that a greater understanding of neurodivergence, attachment, and sensory processing would benefit all children, not just those with a diagnosis.

When we reframe misbehaviour as stress behaviour, and brain difference as an opportunity for support rather than judgment, tamariki have more prospects to be celebrated.