It is suggested that the prevalence of foetal alcohol spectrum disorders (FASD) is greater than autism, and yet there remains significantly less understanding of this issue, information for families and practitioners, and support for those impacted by the condition. In 2023, Waite and Burd reported that “At an estimated prevalence of up to five percent in the general population, fetal alcohol spectrum disorders (FASD) are the most common neurodevelopmental disorder”.
Within the UK, there is one specialist clinic for assessing and diagnosing FASD in adults and children, headed by Professor Raja Mukherjee, considered the leading expert on this condition. His work and influence has meant that there is more attention given to this now than in the past, yet many families supporting children continue to find difficulties in accessing diagnosis and support. Charities and organisations such as NOFAS-UK (The National Organisation for FASD), FASD Network UK, and FASD UK Alliance, have thus been hugely beneficial in pressing for change. Children and adults with FASD, as well as those caring for them, face many challenges but there is an emphasis too on talking about the strengths that individuals bring, and the joys that can be shared.
Often, but not always, these children have been removed from their birth family and are being cared for within kinship, foster or adoptive families, and FASD has been found to co-exist with early childhood trauma (Price, Cook, Norgate and Mukherjee 2017). One of the distinct challenges of FASD is around emotional regulation, impulsivity, sensory and communication needs, and executive and adaptive functioning abilities, meaning that families report high levels of violence and aggressive behaviours from their children, adding to the difficulties many children who have experienced early adversity show in day to day life.
Over the years I have become more acquainted with the work of organisations in the UK, and also in Ireland (Scott – I hope you will comment on this blog and bring us more understanding!) and I have also had some correspondence with Anita Gibbs in New Zealand, who this month published a paper about the experiences of parents caring for children with FASD in New Zealand. “‘No one believed us, no one came to help’: caregivers’ experiences of violence and abuse involving children with fatal alcohol spectrum disorder” is designed to raise awareness and prompt improvements in practice, and so far is one of only a few empirical studies in New Zealand, where FASD is an unfunded disability compared to autism and ADHD. Gibbs interviewed 56 parents / carers and brings her findings together under a series of themes: Experiences and types of CAPVA (child / adolescent to-parent violence and abuse), Impacts of CAPVA, Systematic abuse goes alongside the CAPVA, Strategies and Self-care, and (importantly) Silver linings. This was a small study and Gibbs acknowledges the limitations, but it is nevertheless important in shining a light on this neglected group of families, amplifying their voices, and adding to the movement for change and support. It is an easy read and is helpful to all across the globe in broadening our understanding and encouraging a greater curiosity from those who seek to support families impacted by FASD.
Gibbs, A. (2024) ‘No one believed us: no one came to help’: caregivers’ experiences of violence and abuse involving children with fetal alcohol spectrum disorder. Australian and New Zealand Journal of Family Therapy, 00, 1–13. Available from: https://doi.org/10.1002/anzf.1575
HOLES IN THE WALL 
Delighted to leave a comment as requested about the state of the nation in Ireland.
Currently – Ireland has NO diagnosis pathway for those presenting with symptoms of FASD. It really is a hidden epidemic across the state. Ireland also does not currently officially recognise FASD as a disability.
There are obviously a number of differences between all the nations in the UK, and that is reflective of Ireland – both North and the Republic.
While the prevalence of FASD in Ireland is not known, a 2017 systematic review and meta-analysis estimated prevalence of alcohol use during pregnancy showing Ireland to have one of the highest prevalence of all countries studied. It estimated that between 2.8 – 7.4% of the population of Ireland might have FASD. This would place Ireland in the top 3 of the highest prevalence of FASD across the Globe. The Health Service Executive (HSE) have produced a position paper on FASD – however, it is deemed not to be going far enough.
Currently FASD Ireland is the only organisation in Ireland lobbying Ministers, Senators and other TD’s (MPs) across the State – with the simple ask “When will Ireland begin to recognise FASD as a disability?” – Only when that question is answered can we even begin to look at a diagnosis pathway and support for those living with FASD.
FASD Ireland also offers support and advice via their FASD Hub Ireland and FASD Hub Northern Ireland®. There is so little knowledge of FASD – it is quite honestly just the starting point, as people begin to recognise the prevalence of the condition.
Parents and Carers have limited options when it comes to support in education, and sadly CAMHS is ill equipped when it comes to their knowledge of FASD, however, that being said there are a small number of health care professionals who we are working with – who do have a great knowledge understanding of FASD – however, this knowledge was garnered in countries where FASD is recognised.
In 2023 the “FASDcare: Understanding the Experiences and Needs of Family Caregivers of People With Fetal Alcohol Spectrum Disorders (FASD) in Ireland” by Katy Tobin was produced after 2 years of research. It is the first research of its type in Ireland.
It is all a start, but we have a very long way to go – especially to understand how child/adolescent to-parent violence and abuse features for families living with FASD in Ireland.
Thanks Scott for your comment. It is sobering to hear how little we still understand the impacts of FASD one individuals and families but encouraging to hear that work is starting to happen to develop knowledge and resources. With your suggestions to start with I will add some resources and organisations that people can contact.