Another study has been published in the USA about the prevalence of Foetal Alcohol Spectrum Disorders. This research shows that roughly 1 in 20 first graders has an FASD but that “Of the 222 children diagnosed with FASD in the study, only two had been previously diagnosed with FASD, although many parents and guardians were aware of the children’s learning and behavioural challenges.” The study, which assessed 6,639 children in four different areas in the USA, was funded by an arm of the US National Institutes of Health and was released in the prestigious peer-reviewed Journal of the American Medical Association (JAMA). The story was covered in the New York Times and on CNN. The conservative interpretation of the data says that between 1.5 and 5% of the population has FASD. This means FASD affects more people than autism.
Scientists are now debating the details, as we would expect and need them to do.
But make no mistake, numerical quibbles are no excuse for ignoring the elephant in the room. As my colleague Tom Donaldson, who heads the US National Organisation on Foetal Alcohol Syndrome said, “These shocking findings prove that practitioners, public health professionals, policymakers, and the public need to wake up to this crisis… more education, more services, and more addiction treatment resources for women unable to stop drinking are urgently needed.”
So, does this matter to those of us sitting in the UK?
Yes. It matters greatly.
For too long the UK has failed to address FASD. We have known since the 1970s that UK-based prevalence studies are needed but they have not been seriously undertaken. Why?
The BMA in 2007 issued a landmark report on Alcohol and Pregnancy, which it updated in 2016. It clearly says, “Further research should be undertaken to establish the epidemiology of the range of fetal alcohol spectrum disorders in the UK. This should be supported by the implementation of uniform diagnostic criteria and improved data collection, and should include a meta-analysis of existing data, as well as coordinated large scale population-specific prevalence studies. As passive surveillance studies may underestimate prevalence of fetal alcohol spectrum disorders, future research should include active case ascertainment studies.”
What that means, in lay terms, is that it is time for the UK to get up off its proverbial backside and deal with the full range of Foetal Alcohol Spectrum Disorders.
Let me tell you why this is urgent.
From my experience, I have learnt that each morning young people are screaming in frustration, begging their parents not to make them go into school yet again because their crossed brain wiring makes it torture for them to sit in overstimulating classrooms where they are expected to fail. Their inability to think abstractly means they may not be able to follow the curriculum in the way they are being taught. Their sensory processing issues may mean they literally cannot sit still in a busy classroom. They want to do well but they often can’t explain why it’s all so hard, and they keep getting detention and exclusions because the adults around them don’t understand their behaviour is a call for help. Parents, carers and guardians are often at their wit’s end. They may know that there is a strong likelihood these young ones have been exposed to alcohol in utero – some are birth mums who have explained they drank during their pregnancies. They may see their family crumbling, a young person getting in trouble with the law, with addictions, with mental health problems, and the so-called professionals they turn to either don’t have the information, the training or the desire to understand someone with an FASD. In too many lonely corners of the UK, including in prisons and on too many street corners, adults with FASD are beating themselves up. They don’t understand why they have done the things they have done, why no one seems to understand how hard they try. Many are getting on with life with amazing courage and determination, but it’s harder than it should be. Too many don’t know they have FASD because the system has failed them every single step of the way. They may have mental health issues that could have been avoided. They are unfairly being denied benefits.
When the UK finally does the proper studies, the results will probably be similar or higher than those in the US. The UK has one of the highest rates of drinking alcohol during pregnancy in the world – higher than in the USA with more than 40% of women estimated to drink during pregnancy (other studies indicate this could be higher). One study showed that in Peterborough 34% of looked-after children and 75% of children put forward for adoption had been exposed to alcohol in utero. While not every child who was exposed to alcohol in the womb will have an FASD, we simply don’t yet know with confidence who in this country does. We are facing what some experts have called a ‘hidden epidemic’ – one that we can prevent and address if we could all just stop dithering.
Before any policy maker, Clinical Commissioner, teacher, or health practitioner turns away from the news this morning thinking, “That’s a problem in the USA but not here,” please digest the fact that the BMA and other experts have been warning the UK for decades that this IS happening here too.
This is a moral issue, an issue that gets to the heart of a compassionate society. We cannot let another generation suffer from our societal ignorance while we hem and haw about the need for more studies. Yes, fund them. But don’t wait to open the pathways for diagnosis and support.
Diagnosis, proper assessments, adequate support in schools and alternative parenting strategies can change trajectories and create happier outcomes. The take-away message is not all bleak – quite the contrary. We can address this once we muster political will.
To anyone who dares say a child with the lifelong disability of permanent brain damage doesn’t deserve a diagnosis or support, please spend a day with my family or any of the more than 1,600 families across the UK who are part of the FASD UK Alliance Facebook support group. Hear our voices. Hear adults with FASD as they speak their truths.
And let’s speak clearly. Statistical debates do not dilute policy makers’ responsibility to protect the most vulnerable in our society. This IS your problem too. It is a problem that affects each and every community throughout the UK.