Up to 17% of children could have symptoms of foetal alcohol spectrum disorder

Foetal alcohol spectrum disorder (FASD) is thought to be under-diagnosed, with only one specialist clinic in England.

The lifelong condition, caused by exposure to alcohol in pregnancy, affects learning and behaviour and can cause physical abnormalities.

Researchers from the University of Bristol and Cardiff University used information collected by women who were pregnant between 1991 and 1992.

They followed the development of 13,495 children from birth until the age of 15.

The UK has the fourth highest level of pre-natal alcohol use in the world but the research is the first to estimate how many people may have FASD.

Dr Cheryl McQuire, researcher in epidemiology and alcohol-related outcomes at the University of Bristol led the research, which is published in the journal Preventative Medicine.

“Our results showed that a significant number of children screened positive for features consistent with FASD,” Dr McQuire said.

“The results are based on a screening tool, which is not the same as a formal diagnosis.

“Nevertheless, the high rates of prenatal alcohol use and FASD-relevant symptoms that we found in our study suggest that FASD is likely to be a significant public health concern in the UK.

“These results are important because without UK estimates of FASD prevalence, awareness will remain low and children, teenagers and adults will continue to find it difficult to seek diagnosis and to access the support they may need.”

Dr McQuire said the information on prenatal alcohol use may have been collected almost 30 years ago but figures have largely remained unchanged.

In the research, which used data from the Children of the 90s study in Bristol, up to 79% of children were exposed to alcohol.

“Recent estimates suggest that three quarters of women drink some alcohol during pregnancy, with one third at binge levels,” Dr McQuire said.

“This suggests that many individuals in our population today could also have symptoms of FASD.

“The most up-to-date guidance states that the safest approach is not to drink alcohol at all if you are pregnant, or if you think you may become pregnant.

“It is important that people are aware of the risks so that they can make an informed decision about drinking in pregnancy.”

The researchers developed a screening tool, which was applied to the data.

A positive FASD screen was defined as problems with at least three different areas of learning or behaviour, with or without physical anomalies.

These anomalies include growth deficiency and distinctive facial features, such as a thin upper lip and small eye openings.

Up to 17% of those in the study screened positive for symptoms of FASD.

Screening has taken place in the schools of some countries, such as the US, Canada and Italy.

Results from these have concluded that 10% of children in the general population are affected, with rates as high as 30% for those in care, Dr McQuire said.

She is calling for further research to clarify the current prevalence of FASD in the UK.

“These children will have difficulties that will persist across their lifetimes,” she added.

“There is evidence to suggest that if these individuals are diagnosed early and if they and their families get appropriate support, they can achieve much better outcomes.”

Advice from the chief medical officers for the UK states that women who are pregnant or think they could become pregnant should not drink alcohol at all to keep risks to the baby to a minimum.

It advises that the risk of harm is likely to be low if women have only drunk small amounts before they knew they were pregnant, or during pregnancy.

Women who have consumed alcohol in early pregnancy should avoid further drinking, though the risks to their baby are likely to be low.

Anyone who is concerned about alcohol use during pregnancy should talk to their doctor or midwife.

Dr Raja Mukherjee, who runs a diagnostic clinic for FASD at Surrey and Boarders Partnership NHS Foundation Trust, said: “These are really important results that show there are likely to be many individuals with this disorder already out there who are being missed.

“There seems to be a disconnect between these findings and what many clinicians often report as a rare condition.

“It shows that it is a disorder that is seemingly hidden in plain sight that we need to pay attention to.

“Unless we start looking for it we will continue to miss it.

“If we fail to diagnose it then those affected individuals will continue to be affected by a lack of support and have subsequent impact on them and wider service.

“These results can be the first step in helping us in the UK to realise it is no longer a condition we can ignore.”

Sandra Butcher, chief executive of NO-FAS UK, a charity to help those affected, said more support was needed “on every level”.

“This study shines light on a staggeringly widespread and largely avoidable public health crisis,” she said.

“No policy maker who cares about the mental and physical health of the most vulnerable in our society should rest easy until we have in place UK-wide comprehensive action and training on FASD prevention, diagnosis and support that extends across the individual’s lifespan.

“Babies with FASD grow into adults with FASD and more support is needed on every level.”

The Children of the 90s study, also known as the Avon Longitudinal Study of Parents and Children (ALSPAC), is a long-term health research project.

It enrolled more than 14,000 pregnant women in 1991 and 1992 and has been following the health and development of the parents and their children ever since.

Clare Murphy, from the British Pregnancy Advisory Service (bpas), said: “We advise real caution over the interpretation and communication of these findings.

“This study, as the authors themselves acknowledge, does not prove any causal link between pregnancy drinking and the developmental outcomes recorded, and may cause pregnant women and parents needless anxiety.”