I have been providing basic training to foster carers, social workers and other related professionals working with children around Foetal Alcohol Spectrum Disorder for some time now. The more I design and deliver this training, the more I lament as I realise that participants of my training and I have spent the best part of our careers never really being informed in any meaningful of the condition and, worse still, making decisions about children and their families knowing very little about the condition.
Foetal Alcohol Spectrum Disorder (FASD) is a significant issue in the UK, impacting individuals and families nationwide. It is recognised as a significant public health concern. FASD is a life-long condition caused when a person is exposed to alcohol in the womb, leaving the affected individual with a range of physical, behavioural, and cognitive difficulties.
FASD is an umbrella term that includes the diagnoses of foetal alcohol syndrome (FAS), pFAS (partial foetal alcohol syndrome), ARBD (alcohol-related birth defects), and ARND (alcohol-related neurodevelopmental disorder)/ND-PAE (Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure).
While exact prevalence rates are challenging to determine, it is estimated that FASD affects a significant number of individuals in the UK.
According to McCarthy, R., et.al., 2021,
“The prevalence of FASD is estimated to be 0.8% globally and highest in Europe, at 2% (Lange et al., 2017). There are no direct estimates of prevalence in the 4 countries with the highest known rates of prenatal alcohol exposure (Ireland, Belarus, Denmark and UK), all of which have rates of over 40% of pregnancies exposed to alcohol (Popova et al., 2017). For the UK, the modelled estimate suggests 3.2% of children and young people may have FASD (Lange et al., 2017). A national study in the United States on populations relatively similar to those in the UK found a weighted estimate of 3–10% for FASD in children in primary school (May et al., 2018). Where a UK cohort with high levels of exposure (79% of mothers drank during the pregnancy, with 25% at binge levels) was used, 6–17% of children screened positive for features of FASD (McQuire et al., 2019). However, the lack of direct evidence of prevalence contributes to underinvestment in diagnostic, treatment, and prevention services (Scholin et al., 2021).”
In the UK, the prevalence of FAS is challenging to determine accurately due to underdiagnosis, misdiagnosis and limited data. I’ll argue that figures so far are conservative as we are not routinely screening all babies and still putting much weight on the mother’s self-reporting of her use of alcohol and other substances. We also need to soberly acknowledge the ‘binge drink culture’ in the UK.
To add to the conundrum, until recently, fathers were not considered to contribute to their child being born with FASD. However, in some recent studies, it has been found that a baby can develop a foetal alcohol condition and congenital heart disease even if the mother did not drink any alcohol during pregnancy. This can happen due to alcohol consumption before getting pregnant or due to the drinking habits of the father-to-be.
Both the alcohol consumption of the mother and the father can increase the risk of the baby developing a foetal alcohol condition. It is important to note that the more alcohol consumed, the higher the risk for the baby.
A baby exposed to alcohol in the womb may experience permanent life-long problems. Children with FASD may exhibit the following characteristics:
1. Smaller head size compared to the average.
2. Poor growth, resulting in being smaller than average at birth, slow growth during childhood, and shorter stature as an adult.
3. Distinctive facial features, including small eyes, a thin upper lip, and a smooth area between the nose and upper lip. These facial features may become less noticeable with age.
4. Difficulties with movement and coordination.
5. Learning difficulties can manifest as challenges with thinking, speech, social skills, timekeeping, mathematics, or memory.
6. Mood, attention, behavioural problems, and a lack of impulse control.
7. Organ-related problems, such as issues with the liver, kidneys, heart, or other organs.
8. Hearing and vision problems.
The above problems vary from child to child, with individuals possibly having a combination of these symptoms to varying degrees. Early intervention, appropriate support, and specialised interventions can assist individuals with FASD in managing these challenges and improving their overall quality of life. Early treatment and support can help minimise the impact on the child's life. However, many of our children are either undiagnosed or misdiagnosed with conditions like ADHD, atypical autism, an attachment disorder, or a conduct disorder. I suspect because we are still yet to understand the condition and how it affects the community. As such, the appropriate support mechanisms are rarely implemented, and parents/carers are left frustrated and confused.
The last time I looked, we had only one FASD clinic in the UK (run by Dr Mukherjee in Surrey). Despite being within an NHS Foundation Trust service, the clinic must be properly funded so that many parents and carers must pay personally to access its diagnostic and assessment capabilities. Not only that, but I also understand the waiting list for a full assessment is considerable, with few referrals given from local councils or other NHS Trusts unfamiliar with FASD.
The inadequate evidence base and clinics in the UK have restricted knowledge and awareness of FASD in the medical profession and across all relevant service providers in the UK. Those most affected by the incoherent and inconsistent guidance resulting from this insufficient knowledge pool are families, carers and, of course, those with FASD.
What can we do? As well as addressing the diagnostic challenges, we can start by sharing about the condition. Promoting awareness of this condition is vital for the future well-being of our children. We must continue to educate healthcare professionals, educators, and the public about the risks of prenatal alcohol exposure and the potential lifelong impact on individuals. Be bold and tell people that this condition is 100% preventable; promote prevention measures. Ask couples to go on alcohol fast whilst pregnant, a 3-6 month fast of Alcohol before conception. Some may say this is impracticable. I think the earlier we share what we know with our children, the sooner they can all opt for a society where all people look after their health and drink responsibly if they think of becoming parents.
Sources:
McCarthy, R., Mukherjee, R. A. S., Fleming, K. M., Green, J., Clayton-Smith, J., Price, A. D., Allely, C. S., & Cook, P. A. (Year). Prevalence of foetal alcohol spectrum disorder in Greater Manchester, UK: An active case ascertainment study. [Alcoholism: Clinical and Experimental Research) ], [Volume 45] (Issue 11), Page 2271-2281.
National Organisation for FASD UK. About FASD. Accessed May 30, 2023. online: https://www.nofasd.org.uk/about-fasd