Supporting people with Fetal Alcohol Spectrum Disorders

For the first 26 years of my professional career, I had no knowledge at all about Fetal Alcohol Spectrum Disorders (FASD), and only found out about it 'accidentally' in 2008 when I came across it in my personal life.

Had I known about FASD whilst I was a social worker, it would have made a dramatic difference to the way I intervened with, and supported, families. I suspect that we are still making decisions about children, young people, adults and families without considering if alcohol exposure pre-birth might be a factor.

What is FASD?

Fetal Alcohol Spectrum Disorders (FASD) describe a range of preventable conditions that affect a developing fetus when exposed to alcohol by a mother drinking alcohol whilst pregnant.

Alcohol, being both a neurotoxin and a teratogen, can damage any part of the developing embryo. In particular, being a neurotoxin, it can damage the brain, most specifically we now understand, the midline of the brain, which is a groove running between both brain hemispheres spanning many brain structures, causing neurodevelopmental issues and differences.

It is lifelong form of neurodivergence which cannot and should not be attempted to ‘cure’. To put it crudely and simply, it is fundamentally, brain damage. 

What does alcohol do to the embryo?

As alcohol can impact on, and effect, any part of the embryo, it means that every person affected is affected uniquely. However, because we know that alcohol is most likely to have an effect on the ‘midline’ of the brain, we can see common traits, including:

• poor impulse control,
• difficulties with emotional regulation,
• issues in retrieving and storing information,
• issues in receptive language,
• poor auditory functioning,
• specific facial features called ‘sentinel facial features’.

Many of the outcomes of pre-natal alcohol exposure can be mistakenly diagnosed as attention deficit hyperactivity disorder (ADHD), autism spectrum disorders (ASD) or post-traumatic stress disorder (PTSD) (The Association for Child and Adolescent Mental Health, 2023). For children in the care system, FASD can be confused with attachment and trauma concerns. In order to provide the right adjustments and support to a person, it is vital that we know the correct cause, which could include, for example, both FASD and trauma (Mukherjee et al., 2019; Price et al., 2017). 

Equally, those affected may not have a diagnosis of any condition whatsoever (Price, 2019) but may be viewed unfairly as ‘naughty’ children, with ‘challenging’ behaviours, or as being the result of ‘poor parenting’. More information on pre-natal alcohol exposure and trauma research can be found in this blog by Dr Alan Price from the University of Salford.

How common is FASD?

The UK has some of the highest rates of alcohol exposure in the world for women drinking during pregnancy which can cause FASD (NICE, 2019). This is preventable and yet goes largely unappreciated. 'Binge drinking’ culture is prevalent in the UK, and over the last few decades, we have also seen an equalisation between the way men and women consume alcohol. There are a number of reasons why women who are pregnant may continue to drink alcohol, including:

• They might not know they are pregnant.
• They might feel under pressure to drink when with friends.
• They might be trying to cope with problems and stress.
• They might not be aware of the risks of drinking alcohol during pregnancy.

Children and young people in care and adopted children are over-represented in terms of FASD (unsurprisingly as they often come from scenarios in their birth family where alcohol will have featured). Although accurate rates of prevalence are difficult to obtain, other research suggests it can be anything from 27% to 60% of children in the care system that may be affected (e.g. Gregory et al., 2015). This compares to rates for the whole population that again are unclear but thought to be anywhere between 1.8-3.6% (McCarthy et al., 2021) and 6-7.2% (McQuire et al., 2019).

Recent research, conducted by the University of Salford, suggests that the rate of FASD within society could be at least as common as autism (McCarthy et al. 2021).

What are we doing about FASD?

In March 2022, after many years of lobbying based on our increasing knowledge of the impact of alcohol on the developing fetus, the National Institute for Care and Health Excellence (NICE) issued a Quality Standard on FASD. This standard addresses five areas where local authorities, Commissioning Care Groups and Primary Health Trusts need to improve their services:

1. Prevention/education – Pregnant women are given advice throughout pregnancy not to drink alcohol.
2. Recording – Pregnant women are asked about their alcohol use throughout their pregnancy, and this is recorded.
3. Referral – Children and young people with probable prenatal alcohol exposure and significant physical, developmental, or behavioural difficulties are referred for assessment.
4. Diagnosis – Children and young people with confirmed prenatal alcohol exposure or all three facial features associated with prenatal alcohol exposure have a neurodevelopmental assessment if there are clinical concerns.
5. Care Management – Children and young people with a diagnosis of FASD have a management plan to address their needs.

Conclusion

It is vital that everyone working within social care, both adults and children, but particularly those working with children in, or on the edge of, the care system, know about FASD, how it is caused, how the brain can be affected and, most crucially, how they can support people who have been impacted.

A manifesto co-produced by young people with FASD explains how they would like people, including professionals like doctors, teachers, social workers and others, to better support people with FASD.

If you want more information about FASD, or wish to have training on FASD for professional staff, including foster carers, please visit the FASD training website or get in touch with the author at martin@fasdtraining.co.uk.