Public unaware of risks of alcohol during pregnancy, experts say

Foetal alcohol spectrum disorder (FASD) is caused by drinking during pregnancy, and affects numerous aspects of brain function, including executive function, memory, communication, cognition, focus and social skills. In the UK – which has the fourth-highest rate of alcohol consumption during pregnancy in the world – the condition is prevalent, affecting up to 2.4 million people, or around 3.6% of the population.

“In the UK, 77% of women drink alcohol, and nearly half of pregnancies are unplanned, so this isn’t necessarily about women who are dependent drinkers or women who are drinking knowing they’re pregnant,” says Joanna Buckard, director of innovation at National FASD. “This is something that could happen to anybody. It’s not about one particular group in society. If you drink alcohol and you could become pregnant, then there is a risk of an alcohol-exposed pregnancy.”

While public information campaigns have focused on smoking cessation during pregnancy, “in the UK, 11.5% of women smoke, and the latest figures suggest that 7.3% of women smoke during pregnancy, so for me, that’s a much smaller issue,” she says, “and yet all of the focus from public health is on smoking – and the research suggests that alcohol is more damaging to a developing baby than smoking.

“Public health messaging just hasn’t been there. People aren’t taught about the risk of alcohol and pregnancy in school, it’s not part of the government-led public health campaign, so women don’t really know” of the risks.

The impact of this lack of awareness is a prevalence of people living with FASD. “FASD is more common than autism,” Buckard says. She cites a research paper published by McCarthy et al in 2021. “In Greater Manchester, they went into three mainstream primary schools, and it showed that between 2 and 4% of those children might have FASD.” This means that FASD is between two and four times more prevalent than autism. But while many schools now put in place reasonable adjustments to support autistic students, FASD is significantly under- or misdiagnosed. “Some of the children who could be most at risk of having F ASD may already have been moved to other provision,” Buckard says, “so it’s a very hidden disability.”

If a student displays “significant behavioural, developmental or physical differences, then they should be referred for an FASD assessment,” she says, “but there’s been a distinct lack of training for professionals and a lot of them have very old school thinking. If you’re describing behavioural difficulties in your child, they may be thinking, ‘Oh, well, maybe that’s ADHD,’ or, ‘That sounds a bit like autism,’ so those are the referrals that are made, and there are a lot of children that are not being assessed for FASD.”

Adults are even less likely to receive a diagnosis, “and of course, an adult who has gone through life without diagnosis is most likely to have had difficulties at school.” Children with FASD are significantly more likely to be excluded, while adults with FASD are more likely to experience poverty and homelessness and to come into contact with the criminal justice system. Moreover, “one study suggested that 90% of people with FASD will have mental health issues, and yet if you look at community mental health teams, often they’ve never had training in FASD,” creating an absence of appropriate support.

Adults with FASD are also more likely to experience addiction to alcohol or other substances themselves, and “we see people dying early because of suicide, accidents and poisoning by illegal drugs and alcohol, so there are a lot of risk factors for very vulnerable adults,” Buckard says.

The lack of support is partly due to a lack of infrastructure in the health and social care sector. “When a GP comes to make a referral, they’re like, ‘I don’t know who to refer to because there is no pathway,’” Buckard says. Diagnosing FASD also requires specialist knowledge that is lacking throughout the sector, as the impairments associated with the condition are often concealed. “The majority are going to have IQ within a normal range, so most are going to talk in an age-appropriate way as their expressive language is quite good, so you’ve got somebody who is going to appear quite able in some ways, but often they’ll have much lower receptive language, so aren’t necessarily understanding as much as you think.

“Often, people with FASD will have quite good facial expressions and body language, so you can have somebody who’s going to nod along, go along with what you’re saying.” But “to get a diagnosis, they have to meet the criteria for severe impairment, and despite appearing to function well based on having good expressive language, facial expression and body language, all people with FASD have severe impairment of their neurodevelopment.” This affects their ability to function in ways that may be expected based on the way that they present.

A lack of up-to-date training and understanding can lead to support providers failing to offer reasonable adjustments. For instance, impaired memory and executive function can result in people struggling to keep appointments, “and what gets written in the notes is ‘did not attend’, and after a couple of occasions, the service is closed to them for failure to engage.”

These issues not only affect people with FASD, but also wider society due to the cost to the public purse. “The FASD needs assessment that was published in 2021 by Department of Health and Social Care said that it is costing us £2 billion a year,” Buckard says – and, due to significant underdiagnosis, “that is a massive underestimate, so this is costing us a lot of money, and it is a preventable condition.

“It will never be 100% preventable because you will always have unplanned pregnancies and you will always have people who have a dependency and need extra support, but you could prevent very large numbers by having better awareness and support across society.”

For information or to access support, visit nationalfasd.org.uk and alcoholandpregnancy.info

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