We need to talk about FASD
This Adoption Week Scotland, Barbara Ogston, FASD Advisor in the FASD Hub Scotland, managed by Adoption UK, who is an adoptive parent, discusses the impact of Fetal Alcohol Spectrum Disorder (FASD) within the care community, and why it’s vital that children and families receive the support they need.
FASD is thought to be three to five times more prevalent in Autistic Spectrum Disorders.
One study in England showed that in one council area, 75% of the children put forward for adoption had ‘prenatal alcohol exposure’ noted on their medical records.
It is the most common, yet unrecognised, neurodevelopmental condition in the UK, if not the world.
So why are we not talking about it within the care community?
What is FASD?
FASD is a lifelong disability that affects the brain and body of individuals who were exposed to alcohol while in the womb. People with FASD display differences in neurological processes, particularly those relating to memory, cause-and-effect, impulse control and challenges with emotional regulation, which prevent effective engagement with traditional learning and social interactions. In addition to this, people with FASD often hold co-morbid diagnoses of Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD) and Learning Disabilities, and present with similar social and independence skills and self-esteem difficulties. FASD is a hidden disability, with only around 10% of those affected displaying facial features that associated with the condition, which may include small eye openings, a thin upper lip and a smooth philtrum.
‘You arm yourself with knowledge’
My first encounter with FASD was 20 years ago, when I worked as a nursery nurse in a council run nursery centre. Not that I knew it at the time, all I knew was that I was working with a young child who had a diagnosis of some kind, but we weren’t permitted to know what it was.
It wasn’t until a few years later while working in an alcohol/drug dependency project that I came across this child again and discovered that she had a diagnosis of Fetal Alcohol Syndrome (now known as FASD). The stigma attached to her diagnosis when I worked with her in nursery acted as a barrier to her receiving the support we would have provided for her, had we been better informed of her condition, and what FASD actually was.
Fast forward 10 years and I found myself the adoptive parent of a child with a diagnosis of Fetal Alcohol Syndrome. We were fortunate in that he was diagnosed as a baby, as he had facial features associated with FASD, multiple developmental challenges, confirmed prenatal alcohol exposure and lived in an area that was forward-thinking and aware of the condition, but that’s when the challenges really began. How do you seek support for your child’s condition, when it seems that no one has heard of it? Well, you arm yourself with knowledge, become the ‘parent expert’, then you shout it out loud to anyone who will listen.
Over the past ten years, I have gone from what seemed like a lone voice to being part of a FASD movement. Scotland has led the way within the UK in terms of diagnosis, support and awareness of FASD. With the introduction of the SIGN Guidelines last year, children and young people now have a route to diagnosis. Slowly, but surely, FASD is becoming recognised within health, education and social work, however we still have long way to go to ensuring that people with FASD (and their families) receive the support they so urgently need. The Scottish Government has allocated funding to improve services for children and young people, and just prior to International FASD Awareness Day in September 2020, it was incredibly moving and exciting to hear the Scottish Parliament debate FASD and commit to furthering their support.
The creation of the FASD Hub Scotland in 2019, funded by the Scottish Government and managed by Adoption UK, has quickly established itself as a go-to resource for adopters, biological parents, foster carers and kinship carers seeking to navigate their way through the diagnosis process and gain peer support from those also caring for children and young people affected by FASD.
The FASD Hub offers a tiered service, including a helpline, peer support Facebook group, factsheets, one-to-one caregiver support from dedicated FASD Advisors/Parent Partners and access to therapeutic services. They offer training to parents and carers, and to professionals from education, social work and health services. A very welcome step forward, however, there is still so much to do in the prevention and awareness raising of FASD, identifying those at risk of FASD and supporting them in seeking a diagnosis, and in the support offered to individuals and their families.
What needs to happen now?
With the significant strides that have been taken in understanding trauma and attachment over recent years, and of Adverse Childhood Experiences, many children and young people have benefitted from therapeutic interventions aimed at supporting their development and wellbeing.
Trauma and attachment have become the ‘go to’ paradigm when working with care-experienced children and young people, which has brought significant improvements in the way we work with this group. However, given that care-experienced children and young people are four times more likely to have been exposed to alcohol in utero, and that Dr Raja Mukherjee, one of the UK’s leading experts in FASD, suggests that up to a third of those who are care experienced may have the condition, isn’t it time we started considering the impact of this organic brain-based condition and give it as much weight as the developmental trauma of early childhood experiences?
On behalf of the children, young people and families we are working with, those in local authority care, those on the edges of care, those who have been adopted, and those who don't fit neatly in to the ‘trauma and attachment’ box... let’s start talking about FASD.
For further information about FASD: firstname.lastname@example.org
The views expressed in this blog post are those of the author/s and may not represent the views or opinions of CELCIS or our funders.
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