There’s a hidden epidemic that affects at least 2 out of every 100 people in the UK. It’s more common than autism. Around three quarters of looked-after children are at risk.

This is Foetal Alcohol Syndrome, with its significant learning and developmental impacts, and its less visible, and massively under-diagnosed cousins, collectively described as Foetal Alcohol Spectrum Disorder (FASD). While it is neither the sole cause or an inevitable outcome, FAS and FASD can have a massive impact on the social and mental health, intellectual ability and attainment of those affected.

The people who have been properly diagnosed are the tip of the iceberg. They may have obvious symptoms: heart defects, vision and hearing loss, mobility problems and severe learning difficulties. Some also have distinctive facial features - small wide-set eyes, small jaws and upturned noses, and smooth upper lips.

The submerged seven-eighths of the iceberg includes people who are living with things that are harder to diagnose: sensory and behaviour problems, poor memories, communication issues. People regularly caught up in domestic violence, crime and unemployment, many with autistic spectrum disorders, ADHD, and mental health problems. People with FASD are often misdiagnosed with similar or co-morbid problems, or not diagnosed at all.

FASD is the most common non-genetic cause of learning disability in the UK. It is lifelong and untreatable, and it is also entirely preventable. The costs to the economy are unquantified but breathtaking – an American study put the average cost of one baby born with FAS at $2m over his or her lifetime, but this does not reflect the higher costs of severe disabilities and misses out the costs of FASD.

The rise of the binge-drinking culture and the erosion of support for adult social services contribute to Britain’s unenviable record of having one of the highest rates of FAS births in the world. Around 6 in every thousand babies born Britain today have the distinctive signs of FAS.

While FASD might affect anyone whose mother drank in pregnancy, some groups are disproportionately affected. Alcohol misuse is one of the main reasons children are taken into care. This doesn’t mean they all have it, of course – but it’s clear that foster, adoptive and kinship care families are at the centre of this story.

Far too many adoptive parents feel they were not provided with full information about the possibility that their child could have FASD, and say they have to fight for a diagnosis and for support.  Jennifer Shields, a psychologist working with families affected by the condition, sums up their experiences: "The story we hear from families and children is that they've really battled to be heard." Increasingly, adoptive families living with FASD are taking things into their own hands – forming support groups, arming themselves with research, insisting on diagnosis. 

In response to growing demand from our members for action, on 11th May Adoption UK is holding a major FASD conference in Edinburgh, with presentations and workshops from national experts including Professor Moira Plant, Dr Raja Mukherjee and Lee Harvey Heath, and an audience of practitioners and families from across the UK. We will be exploring the latest research, and the latest ideas about treatment and support.

The conference is supported by the Scottish government, who are showing early initiative on these issues, with ideas such as minimum alcohol pricing and maternal health pilot projects to raise awareness of the impact of alcohol during pregnancy.

Early intervention and education can alter the course of a child’s life, managing parents and carers expectations, providing tools to cope with altered brain function, and fostering their strengths and passions rather than dwelling on their challenges. We cannot cure FASD, but many people can live very successfully with it. Given that diagnosis and management before the age of 6 is the most effective way to prevent the secondary disabilities which accompany FASD, there is a strong case for adopted and looked after children to be fast-tracked for FASD assessments and prioritised for support plans.

Despite growing evidence of the scale of the problem, and increasing calls for action from our members and expert peer support groups such as the FAS Network and NOFAS-UK, we still have no national strategies for either diagnosing or managing FASD. With evidence from NOFAS-UK that fewer than a quarter of GPs are confident that FASD is being correctly diagnosed, no accurate prevalence studies and a death of statutory information and advice provision, the gap where strategic leadership ought to be is glaring.

We need to see a concerted effort in each nation of the UK to improve prevention, diagnosis, and support for FASD, with particular attention to disproportionately impacted groups such as looked after, kinship care and adopted children, and disadvantaged families. Not doing so means the FASD iceberg will continue to gouge holes in the hulls of a whole fleet of services from the NHS, schools, social services and justice – and devastate family lives.

Tickets for the Adoption FASD conference are sold out, but a report of the conference, and associated materials, will be published on our website soon