FASD: a silent pandemic

Fetal Alcohol Spectrum Disorder, or FASD for short, is the most common known cause of neuro-developmental disability and birth defects in the western world. Up to one in twenty people in the UK could have FASD. It feels like a silent pandemic.

FASD is a lifelong disability that affects the brain and body of people who were exposed to alcohol consumed before they were born. That consumption could have taken place at any point of the pregnancy, including before it was detected. With such high numbers (around 45 per cent in Britain) of pregnancies being unplanned, or ambivalent, it’s easy to see how this condition has been silently impacting individuals and society for decades, probably centuries.

People with FASD have multiple challenges. Common symptoms include poor working memory, difficulties with cause-and-effect learning, impulse control, and challenges with social and emotional regulation. People often think about facial features when FASD is mentioned. In fact, it’s estimated that only around 10 per cent of those who receive an FASD diagnosis have all three facial features; a short palpebral fissures (eye openings), thin upper lip and a smooth philtrum (the area under the nose).

Because FASD is poorly recognised, it is also poorly supported. Within Scotland parents and carers are fortunate to have one central organisation they can turn to seek help and support. FASD Hub Scotland, funded by the Scottish government, and managed by Adoption UK has become the go-to resource for those seeking support to navigate the diagnostic process, help in school, parenting styles and strategies, and a community of peer support. Since it was launched in June 2019 the Hub has helped over 2,500 people access support. Demand for this support is growing all the time. It’s a low-cost investment by the government that is literally turning people’s lives around.

That’s great news for people living in Scotland, but it’s a postcode lottery that people struggling with a highly complex condition shouldn’t have to face. We need governments in England, Wales, and Northern Ireland to step up and fund their own national FASD Hubs.

Scotland is currently the only country in the UK with a published ‘diagnostic pathway’ for FASD – the journey that patients take from first presenting with symptoms to receiving a diagnosis. This means people in other parts of the UK are often trying to navigate that difficult journey on their own and in the dark. In England, NICE has committed to publishing quality standards for FASD, but as yet there is no definite date.

Adoption UK and FASD Hub Scotland have been encouraging people to ‘think differently’ about FASD. Individuals with FASD have brain-based differences that mean they think differently. It’s time for governments to think differently too.

Aliy Brown runs FASD Hub Scotland