International Fetal Alcohol Spectrum Disorder (FASD) Day takes place on the 9th day of the 9th month, reflecting the nine months of pregnancy during which babies can be at risk from alcohol exposure.
As we approach International FASD Day 2026, which in some countries is being marked throughout the whole month of September, it seemed a good time to reflect on progress made, and still to be made, in relation to FASD.
Since the debate marking FASD Day in the Scottish Parliament last October, prompted by Rhona Mackay MSP, things have changed. Not least Rhona, one of our great allies in promoting awareness of FASD, has retired and many new MSPs have now joined the Parliament. At the debate in October 2025, MSPs from all parties recognized that FASD was a common but often missed condition, affecting 3-4% of the Scottish population, although most people do not have a diagnosis. Most importantly, they recognized that FASD is a preventable disorder. There was recognition that those living with FASD and their families need lifelong support, some of which can be provided through the education and social care services. However, as people in this group often do not have a specific diagnosis, it was difficult to be precise about how support was improving.
The need for promotion of alcohol-related harm awareness when planning a pregnancy was also recognized, with speakers from all parties agreeing that there should be investment in preconception and interconception health education.
So how are we doing and what more could we do?
A FOI request following the debate identified the Scottish Government’s continuing commitment to supporting those with FASD. Ongoing funding of just over £600,000 has been allocated to two organisations, the FAAST team based within the University of Edinburgh which provides training courses and advice to professionals in relation to FASD, and the FASD Hub based within Adoption UK, who provide training and advice and support to families. Both are small but excellent organisations. In addition there was a commitment to a further £500,000 that was to be used generally to support those with neurodiversity.
In February 2026 the Scottish Government announced that £3.4 million would be allocated to support those with neurodiversity and their families, but only Autism and ADHD were specifically mentioned despite FASD being a more prevalent condition than Autism. Therefore, it continues to be challenging to discover whether investment in resources is helping those with FASD.
How could we better show our commitment to those living with FASD and their families?
Scotland is fortunate to have developed the first UK Guidelines for the Diagnosis of Prenatal Exposure to alcohol (FASD), but implementation of a diagnostic pathway requires suitable recognition of the condition, and staffing of the Neurodevelopmental Assessment Pathway to facilitate timely diagnosis.
Unfortunately, parents across Scotland are still experiencing difficulty in persuading professionals to recognise and assess FASD. However, when a child or young person receives a diagnosis, families often find it very positive as it can help them to access appropriate support.
Where staff are committed to providing an FASD diagnostic service, lack of staffing, or prioritization of other groups within the neurodiversity community can affect their ability to provide that service.
As with any type of neurodiversity, being aware of the number of children/young people and adults is important to plan and provide diagnostic and support services. In the past year a new and easier coding system for those with FASD has been developed across the four nations which could assist in auditing the current numbers of those living with FASD across Scotland. Some, but not a great deal of, investment would be needed to ensure the system is implemented.
Support is so important, but what about prevention?
Over the past year a significant amount of work has been achieved through the Scottish Government Preconception Collaborative to identify ways to improve awareness of alcohol harm, alongside other important ways to prepare for a healthy pregnancy. Research from countries with more advanced recognition of FASD has shown that, for every pregnancy where alcohol exposure is avoided, not only is there prevention of brain damage but there is also a financial saving of lifetime support costs of around £500,000 per each protected pregnancy.
A recent report from National FASD UK, The Cost of Inaction on FASD, suggests that by changing to an ‘Invest to Save’ approach, an approach successfully used in many other countries, money as well as heartache could be saved. Across the UK, including Scotland, we spend £9.2 billion each year, just trying to provide a small measure of support to those living with FASD.
Will 2026 be the year that Scottish Government fulfills its stated ambitions to have a prevention focus for health, as well as supporting those already affected? It’s clear that a lot more money would need to be invested initially, but what a difference an ‘Invest to Save’ approach would make long term, which would very much support the Scottish Government’s renewed focus on prevention.
Dr Patricia D. Jackson
OBE,FRCPCH.