September is international FASD Awareness month, with FASD Day falling on 9th September, signifying the 9 months of pregnancy. This FASD Month, we are calling on people to ‘Think Differently’ about FASD.
“Fetal Alcohol Spectrum Disorder (FASD) is a lifelong disability that affects the brain and body of people who were exposed to alcohol in the womb. Each person with FASD has both strengths and challenges and will need special supports to help them succeed with many different parts of their daily lives” Definition from CanFASD
Did you know that approximately 41% of pregnancies in the UK are prenatally exposed to alcohol (PAE), putting the UK fourth in the world for the number of pregnancies exposed to alcohol? (Popova et al 2017). Research in the west of Scotland found that 40% of pregnancies had PAE, with 15% of these exposed to significant harmful levels (Abernethy et al 2016). There is no known safe amount or time to consume alcohol during pregnancy, and the advice from the UK’s Chief Medical Officers is that those who are – or may be – pregnant should abstain from alcohol, yet still pregnant women receive mixed messages about alcohol and pregnancy.
FASD is the most common known cause form of neuro-developmental disability and birth defects in the western world. Within the general population the prevalence of FASD is around 3-5%, meaning that up to 1 in 20 people in UK could have FASD. In comparison Autism Spectrum Disorder (ASD) is thought to affect 1 in 94. Some groups are, however, disproportionally affected by FASD including the care-experience community. One research study revealing that 75% of children put forward for an adoption medical had PAE noted in their medical records (Gregory, Reddy, & Young, 2015)
Prenatal Alcohol Exposure (PAE) can occur at any point during the pregnancy, including before the pregnancy is detected. Alcohol is included within the group of substances called teratogens, or poisons, meaning that it is substance that can cross to the developing foetus and cause harm at any stage of pregnancy. FASD is a ‘hidden disability’, meaning that you cannot tell by looking at someone whether they have the condition. Around 10% of individuals have specific facial features that are indicative of PAE, these are a thin upper lip, smooth philtrum, and narrow eye opening. The remainder of individuals with a history of PAE do not have these features, which has historically brought challenges for the individual and their families in terms of professionals realising the impact of PAE. In 2019, the Scottish Intercollegiate Guidelines Network (SIGN) published SIGN 156 – “Children and young people exposed prenatally to alcohol”. Coming this year, the NICE quality standards will be published, both these documents setting out a diagnostic pathway for individuals with prenatal alcohol exposure. Within this guidance is a strong reliance on evidence of PAE, whether it be though medical records, self-reporting or other official sources. Accessing this information, if it has indeed been recorded, has been recognised as a significant barrier to diagnosis, particularly for those who are care experienced. This can result in individuals having a missed FASD diagnosis or being mis-diagnosed with other conditions, and so failing to recognise the breadth of challenges and to implement the appropriate interventions (Mather, 2018). Furthermore, co-morbidity between FASD and other neurodevelopmental conditions is high.
SIGN 156 identifies the following functions of the brain as being affected by PAE:
- Executive functioning – people with PAE or FASD often experience difficulties in their higher order cognitive processing, based in the frontal lobe. This affects inhibition, flexibility of thinking, memory, planning, fluency of thought, connecting cause and effect, judgement and organisation.
- Sensory and Motor functions – many individuals with FASD find processing sensory inputs, such as noise, sights and textures difficult. This may cause them to feel overwhelmed or bombarded with information leading them to become distressed or anxious. Some individuals are ‘sensory seekers’ and will actively seek out sensory experiences.
- Affect regulation – individuals with FASD may find it difficult to cope with or manage their emotions, and may find it difficult to be flexible or adapt to changing situations.
- Adaptive behaviour – some individuals with FASD may not understand personal boundaries or have difficulty reading social cues. They may also be socially vulnerable and at increased risk of exploitation.
- Focus and attention (impulsivity) – individuals with FASD may be easily distracted or over stimulated. They may become tired easily as their brain needs to work harder and differently. They might behave impulsively due to difficulty in connecting cause, affect and good judgement.
- Cognition – reasoning and thinking skills may also be impaired. This could include difficulty with memory, planning or understanding complex issues.
- Language – individuals with FASD may appear to speak well but sometimes not understand the meaning of words. They may find following instructions difficult, even when able to repeat them back.
- Memory – Long- and short-term memory can be affected. Some individuals will confabulate, meaning they will cover the gaps in their memory by inventing what happened, using the memories of others, or answering questions by giving the answers they believe the person want to hear. This is different from telling lies and is not a purposeful act of distorting the truth, but rather a reflection on the brain-based challenges they are experiencing.
- Brain Structure and Functioning – individuals may have a small head circumference and structural abnormalities within their brain.
- Academic Achievement – individuals may struggle with attainment in school, particularly in the areas of reading and maths.
Call to action
This International FASD Awareness month we are calling on people to ‘Think Differently’ about FASD. This recognises that individuals with FASD ‘think differently’ about the world around them, and that we must all ‘think differently’ to ensure that they receive the right support and achieve great things. For those working in maternity and midwifery, we encourage you to join us in ‘thinking differently’ through recognising the vital role you play in having supportive open conversations with pregnant women about their alcohol use, and keeping accurate records that may help an individual navigate the diagnostic pathway and receive a diagnosis of FASD in the future.
Further information and support
FASD Hub Scotland provide a tiered support service for all parents/carers of children, young people, and young adults with a history of PAE, with or without a FASD diagnosis. This tiered model provides information, advice, support, and training. This enables the team to engage with families at the point that best suits their needs, and through their social media and website engage with families outside Scotland. The service also provides a point of reference and training for professionals who work with and support these families (social work, education and other third sector organisations/charities) within Scotland.
Aliy Brown, Project Manager, FASD Hub Scotland (below, left)
Barbara Ogston, FASD Lead, FASD Hub Scotland (below, right)