Recent research (2022) has revealed that up to four million British people may have Fetal Alcohol Spectrum Disorder, where prenatal alcohol exposure affects the brain and body of a developing baby.
We spoke to Jessica Rutherford (she/her), the FASD and Complex Case Service Lead at Nudge Education; an organisation fighting to eradicate chronic disengagement from education, to find out more about the disorder.
As part of her role, Jessica, who has seven years’ experience working with people living with FASD and is about to complete her PhD in Educational Interventions for children with FASD, offers specialist, dedicated support to individuals with diagnosed or suspected FASD, and people with complex neurodevelopmental profiles whose needs are not being met in their current education placement.
Here are her thoughts:
Q: What is Fetal Alcohol Syndrome Disorder (FASD)?
Fetal Alcohol Syndrome Disorder (FASD) is a brain-based disability. It’s organic brain damage that has been caused as a result of prenatal alcohol exposure.
There are currently four hundred and twenty-eight co-existing conditions which means that having FASD makes a child more susceptible to these other conditions.
There is no safe amount of alcohol to drink in pregnancy. I believe it’s more harmful than any other substance; I believe that heroin exposure may be less detrimental for a developing fetus than alcohol.
Q: How common is FASD in the UK?
The prevalence figures that we had from a screening study in 2019 suggest that between 6% to 17% of the general population could possibly have FASD upon further investigation. We don't have any accurate data around numbers currently diagnosed.
In 2021, a prevalence study was carried out by Salford University with results suggesting a prevalence rate of between 1.6% and 3.8%. That's a huge difference which shows further studies are needed.
Individuals with FASD often face challenges with education and can easily become disengaged when they are not appropriately supported, or their school placement is unsuitable for their needs.
From my experience, we see a much higher prevalence of FASD amongst the educationally disengaged population, probably closer to 15-20% which is why we set up the dedicated FASD and Complex Case service at Nudge.
Q: What are the symptoms and how does it affect children?
No two children present the same with Fetal Alcohol Spectrum Disorders.
FASD affects the brain and central nervous system so a child can display emotional, behavioural, or physical symptoms.
Around 10% of individuals with FASD have certain physical features associated with FASD, most of which are seen in the face such as a smooth philtrum (the groove between the nose and upper lip) and thin upper lip.
Some of the symptoms that a child with FASD can have are: sensory-processing challenges, poor executive functioning, extreme sleep problems, slow development or growth, co-ordination or memory issues and difficulties with auditory processing. Children with FASD are also much more likely to suffer addiction and mental health problems in later life than their peers.
Q: What do you enjoy about working with families and people living with FASD – and why did you begin working with them?
I first began working with people living with FASD as part of my PhD – but found that I had a desire to meet and gain a real understanding of those living with the condition. Once I met with families and people living with FASD, I was drawn in and fascinated by the condition, how it displays, how misunderstood it is – and how truly remarkable people living with FASD are. And their caregivers: wow, what superhumans they are. I’ve never known a parent population who fight so fiercely and tirelessly for their children.
My interest and work in this area has continued to grow as the roles that I’ve held allow me to support caregivers in some of the daily challenges that they face, particular with regards to education.
Q: In April 2022, NICE (National Institute for Health and Care Excellence) set out how health and care services can improve the diagnosis, assessment, and prevention of FASD. What is your response to this?
This is a milestone for the FASD community. The release outlines five key areas of improvement for local service providers and is something that professionals have been working towards for many years.
- . Pregnant women will now receive advice and be asked about alcohol use in pregnancy which should lead to a reduction in the number of those at risk of FASD.
- . Children with suspected FASD will now be referred for specialist assessment.
- . And, those living with the condition will now have a management plan to support their needs.
I am so relieved for those living with FASD because we now have a vital documentation in place to create a pathway to diagnosis and appropriate support.
To date, education has been an area of significant difficulty for many of those living with FASD. It is hoped that through the launch of the NICE Quality Standards, challenges in education are addressed.
Q: What can we do to support children with FASD?
In around 90% of cases, FASD is a completely hidden disability with no physical signs. We often see a lot of misdiagnoses of the disorder because it presents in a similar way to ADHD and Autism.
However, early intervention is absolutely key. It’s important for a child to get a diagnosis of FASD so they can start to receive specialist support from professionals such as speech and language therapists, occupational therapists, psychologists, and physiotherapists. Access to these services at a very early age can all help to improve the outcomes for a child.
This is because while the brain is still forming, it has the ability to repair itself and to some extent wire around the damage. This is called neuroplasticity.
FASD is a lifelong disability, it is a brain injury, and while there is no cure for this condition, if a child already has a diagnosis, they are in an excellent position to get access to the right support and receive the right help.
For those parents’ who think their child might have FASD but are yet to receive a diagnosis, I’d advise them to speak to their health professionals, read through any documentation associated to the child if they are care experienced and keep recording any behaviour that they think is a bit unusual and take it to their health care provider, speak to their school about support in education or contact adoption support.
Q: What resources are available for individuals / children living with FASD and their families / support network?
There are several of organisations that provide support such as:
- . National FASD: The UK's national organisation for FASD support
- . Nudge Education: Provide a range of services to support young people with FASD as well as other complex conditions
- . Time is Now Conference 2022: UK based conference streamed on YouTube discussing the national perspective on ramping up FASD prevention, diagnosis and support services
- . Sheffield Children Safeguarding Children Partnership FASD Conference 2021 – UK based conference with a range of respected speakers including people living with FASD, families of people living with FASD, practitioners, and representation from the All-Party Parliamentary Group for FASD
- . FASD Alliance: A directory of local and national organisations specialising in the field of FASD
- . FASD, Me & My FASD: Resources for people living with FASD and their support network
- . This Is Me: A visual learning tool designed to assist people with Fetal Alcohol Spectrum Disorder (FASD), along with their families, caregivers, educators, practitioners, and others, to gain a better understanding of common strengths and challenges
- . Foetal Alcohol Spectrum Disorder: Parenting a child with an invisible disability by Mary Mather and Julia Brown
- . FASD Hub Scotland: Useful information and links to resources
- . Internationally, organisations: FASD United, CanFASD, Proof Alliance and NOFAS-Aus
If you are a adopted person living with FASD or a person parenting or in the support network of an adopted child / individual living with FASD and would like to advice, signposting or direct adoption support please get in touch: 0800 023 4064 / firstname.lastname@example.org
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