The international Alcoholism: Clinical and Experimental Research journal has released the results of our study, Assessing the Prevalence of Fetal Alcohol Spectrum Disorder (FASD): A cross-sectional active case ascertainment study in schools in Greater Manchester, UK.
The University of Salford research, led by Professor Penny Cook and commissioned by the Greater Manchester Health and Social Care Partnership, is the first of its kind in the UK. It found that FASD is a significant issue among the population, likely to be as common as autism, despite being rarely diagnosed.
Over 600 Greater Manchester families affected each year
The study investigated the number of primary school children affected by FASD in Greater Manchester. Working with entire year groups of 8- and 9-year-olds and their families, researchers found that 1.8% of children taking part had FASD (the equivalent of 619 children across Greater Manchester). This increased to 3.6% when including children who possibly had FASD (the equivalent of 1,238 children). Crucially, none of these children had previously been diagnosed with a developmental condition, and therefore were not able to access additional health and educational support to help them fulfil their potential.
When it comes to drinking alcohol when pregnant, there is no safe time or no safe amount
FASD is a range of lifelong disabilities caused by drinking alcohol during pregnancy. It includes physical, mental, behavioural and learning impairments and often causes difficulties with speech, language, memory, attention, planning and decision-making. Traditionally, many children with FASD are either misdiagnosed or do not receive a formal diagnosis, and consequently do not receive the right support. As a consequence, they are at increased risk of having a disrupted education and coming into contact with children’s services and the criminal justice system.
Professor Penny Cook said: “This is the first UK study that directly finds evidence that FASD affects a significant number of children. In most cases, the children had not had a previous diagnosis of any disorder. All of them were struggling to learn at school. If we assume that this pattern is similar in other schools, there needs to be more investment in diagnosis, and more support for affected children. With the right support, people with FASD can have productive and fulfilling lives. We hope that this research will shine a light on this otherwise hidden condition so that children with FASD can be supported to reach their full potential.”
Anna Webster, parent of an adopted child with FASD from Chorlton said: “I think as a culture we love our booze and no-one really understands just how toxic it is. There is no safe amount to drink in pregnancy and I think there’s this image that people are being hysterical about it, to which I’d say come and spend some time in a house where somebody’s got FASD and I don’t think you’ll think that anymore.
“The findings of this study are staggering and this is just the tip of the iceberg. Most people have never heard of FASD, bringing awareness and understanding to this hidden disorder will make such a huge difference.”
The research was led by Professor Penny Cook from the University of Salford. The rest of the team at the University of Salford were the main researcher on the project, Robyn McCarthy, together with Dr Alan Price and Dr Clare Allely.
Robyn McCarthy, FASD Research Assistant and first author of the study, said: “It was a privilege to work with the children and parents involved in this study. While the wider findings are undoubtably very important, parents telling us that they are more hopeful for their child’s future as a result of taking part means a lot to us.
I think the schools deserve recognition for the effort and time they put in to supporting this study, we really couldn’t have done it without them.”
The project co-led by UK FASD expert Dr Raja Mukherjee, Honorary Reader at the University of Salford and Lead of the the National FASD Clinic. Professor Jill Clayton-Smith (University of Manchester), clinical geneticist and a dysmorphologist with expertise in diagnosing FASD, was also a member of the team. Prof Clayton-Smith and Dr Mukherjee led the case conferences and used their clinical expertise to identify FASD.
Dr Kate Fleming, FASD researcher from the University of Liverpool, provided epidemiological expertise to do the power calculations and provide the prevalence estimates.
Professor Jonathan Green (University of Manchester) was Chair of the Independent Steering Group for the study, and is co-author of the paper.
More than 900 health and care staff have received training about the dangers of alcohol exposed pregnancies
Sarah Price, interim chief officer, Greater Manchester Health and Social Care Partnership said:
“We hope that this ground-breaking study will see it become more widely recognised how Fetal Alcohol Spectrum Disorder affects a significant number of people, and that this in turn will increase their access to diagnosis and appropriate support. Together these would empower hundreds more residents each year to overcome the barriers many would otherwise face to living the happy, healthy and prosperous lives all our residents deserve.”
Bill Esterson MP, Chair of the All-Party Parliamentary Group on FASD said: “Many people are not aware of the damage alcohol can have on an unborn baby and that drinking even small amounts during pregnancy can lead to life-long problems for the child.
“The advice from the Chief Medical Officer for England is that pregnant women, or those planning to become pregnant, avoid drinking any alcohol at all. Sadly, the findings of this study are unsurprising. Drinking when pregnant is a sensitive, even taboo, subject. It is also, still – socially acceptable. As a society, we turn to alcohol when we’re celebrating, when we’re stressed, when we’re socialising and when we just want to chill out. It’s society’s acceptable drug. I hope that the findings of this study will help to open up a national conversation about the dangers of drinking during pregnancy so that fewer babies are born with lifelong health problems”.
Read more about our study
We have created an easy-to-read summary of the research as a short booklet:
Read the full academic paper here:
McCarthy R, Mukherjee RAS, Fleming KM, Green J, Clayton Smith J, Price AD, Allely CS, Cook PA. 2021. Assessing the Prevalence of Fetal Alcohol Spectrum Disorder (FASD): A cross-sectional active case ascertainment study in schools in Greater Manchester, UK. Alcoholism: Clinical and Experimental Research: https://doi.org/10.1111/acer.14705