The experiences of families caring for children with FASD: “no one came to help”

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