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Fetal Alcohol Spectrum Disorder – We Need to Know the Facts

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As the old saying goes, I have hollow legs.  It’s not something I do often, but I can drink two bottles of prosecco and continue dancing around my handbag while my best mate will be sliding under the table after two glasses. We have a huge drink culture in this country. Watching the football? Have a lager. Hen night? Time for cocktails. Yet alcohol can affect us all differently and the darker side of alcohol is one that is often glossed over. One feature of this darker side is fetal alcohol spectrum disorder (FASD).  

Exposure to alcohol in utero can cause problems in both physical and neurodevelopment. Yet how many people are aware of FASD? I certainly wasn’t when I was pregnant and, after unfortunately losing that baby, when I adopted I knew nothing about FASD nor was told anything about it despite alcohol use being mentioned in my son’s birth history. Indeed, if it wasn’t for the fact that my husband and I saw a TV programme in 2015 called When Pregnant Women Drink we might still have remained unaware of FASD to this day. Very few people realise that alcohol is more harmful to a baby than any drug and that FASD is thought to be at least three times as prevalent as autism which is a neurological disorder everyone is aware of.

Children with FASD can be lovely, they can be helpful, charming, charismatic, have a good sense of humour.  Yet, like the alcohol that caused their condition, they can also have a darker side. They may struggle with sensory issues, cognitive issues, physical issues. A 2016 study published in The Lancet identified 428 conditions comorbid with FASD. There can be meltdowns, impulsive behaviour, and academic struggles. In 2021, two studies are being carried out looking at FASD and the criminal justice system, one by Joanna Buckard through Sheffield Hallam University, and the other by Gilbert David of the University of Salford.  This is because unfortunately the cognitive issues caused by FASD may also lead many teenagers/young adults to end up on the wrong side of the law.

Organisations are trying to address this issue. The National Institute for Care and Excellence (NICE) are hoping to release new FASD healthcare guidelines in 2021. On 15 June 2021, the World Health Organization (WHO) released a first draft report detailing its ‘Global Action Plan on Alcohol‘ which included a discussion on alcohol during pregnancy. Yet, the media backlash against these reports has been, in my opinion, horrendous.  

‘It has been reported that plans have been put forward for women who are pregnant to have every ounce of alcohol they consume during pregnancy recorded’ posted the Independent when discussing the proposed NICE guidelines. ‘World Health Organization bosses want to ban half of women from drinking,’ posted The Sun newspaper. ‘Women do not lose their right to medical confidentiality simply because they are pregnant,’ said Clare Murphy, the director of external affairs at the British Pregnancy Advisory Service (BPAS) in response to the NICE guidelines. Matt Lambert, of the Portman Group, which represents UK brewers and distillers, said the WHO diktat was ‘sexist and paternalistic’.  Lots of people giving opinions without checking the facts and sensationalistic reporting like this harms the efforts of organisations trying to raise awareness of FASD.  

FASD will never disappear. Women will carry on drinking during pregnancy, they may have an alcohol addiction, they may not realise they are pregnant when they are drinking, or they simply may not realise the harm that drinking during pregnancy can cause. It is difficult to do anything about the first two of those groups, but we can raise awareness of FASD amongst women, so they can make an informed choice as to whether to drink during pregnancy. The Drymester campaign funded by the Greater Manchester Health & Social Care Partnership is a perfect example of raising awareness. Groups like NOFAS, Adoption UK, FASD UK Alliance, Salford University FASD Research, and others are doing their best but more needs to be done to raise public awareness. 

The fact is that evidence of pre-natal exposure to alcohol is needed to obtain a FASD diagnosis which is the reason that the proposed NICE guidelines included the recording of alcohol consumption during pregnancy. A 2017 study showed that the UK is fourth in the world for countries where women drink during pregnancy with 41% of UK women admitting to drinking while pregnant. Studies showed that FASD is the most common, non-genetic cause of learning disability in the UK. A woman can choose whether to share information about her alcohol consumption with her pregnancy health caregiver, so there will be no privacy infringement. Smoking during pregnancy is recorded so (in my opinion) why not alcohol? The only ban WHO references in its action plan is related to marketing and advertising of alcohol products. CMO guidelines around drinking during pregnancy advise total avoidance of alcohol because there is no incontrovertible proof that light drinking during pregnancy will not harm a baby.  

I could go on and list a few more facts or people could talk to the grandmother caring for her adolescent granddaughter who is incontinent and not fully verbal, the mother who is punched by her primary school son because it is the only way he can tell her how stressful school was for him or the father who is visiting his son in prison because the young man did not have the cognitive skills to realise that going to prison was worse than ‘snitching on your mates’.  There are thousands of people dealing with FASD every day, they want to raise awareness, so they can get more support for their children. Let’s hear some of their facts before we form our opinions.

Cindy Perkins set up Elucidate Training to try and raise awareness of FASD, because her son was diagnosed in 2017.

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