FASD stands for Foetal Alcohol Syndrome Disorder and is an umbrella term used to describe a group of conditions that can affect a person because they were exposed to alcohol in the womb. It is a spectrum disorder but is not well understood compared to other spectrum disorders such as autism. In the general population, it is not something that most people have even heard of, let alone know anything about.
September is FASD Awareness Month and Friday 9th September is International FASD Awareness Day, so this year, we are raising awareness of this condition so that:
- It can be more easily prevented
- People learn about the condition
- People who have FASD can get the help and support they need
What is FASD?
If a pregnant woman drinks alcohol during her pregnancy, then her baby can suffer prenatal alcohol exposure or PAE. This exposure to alcohol at such an early developmental stage can cause an array of complex, lifelong physical, mental, behavioural, psychological and emotional difficulties for the children who are exposed, although many go undiagnosed so can miss out on the help they need.
What are the main characteristics?
It is difficult to tell someone with FASD by looking at them. Although there is no one feature, there are some characteristics that are common in some (but not all) people with the condition. These include facial characteristics (known as the sentinel facial features) such as small eyes, a thin upper lip and smooth philtrum (the indent above the upper lip and under the nose) which occurs in about 5-10% of people.
However, the main issues that people with FASD have are to do with the development of their brain, which is particularly vulnerable to alcohol exposure in the womb and people with FASD can have problems with executive functions such as:
- Managing emotions
- Academic achievement
- Impulse control
It can lead to children being branded as having ‘behavioural problems’ or worse, branded as ‘naughty’ children when in reality, there is a problem in the way their brain has developed which may be inhibiting them from making more ‘rational’ behaviours and reactions. A study looking into children with FASD who had suffered postnatal neglect suggested that their behaviour problems were more likely to be caused by FASD than the quality of the parenting they received.
A 2016 study looking into FASD found 428 conditions that can co-occur with it involving almost every system in the body including:
- The central nervous system (brain)
People with FASD can also have sensory issues and may be unable to tolerate noises, certain textures or bright lights. They may also not be able to sit still for long or have attention problems such as ADHD or ADD.
How common is FASD?
It is well known that FASD is under-reported and under-diagnosed. The first national effort in 2018 to quantify FASD in the UK found a screening prevalence range of 6% to 17%. Research is ongoing but interestingly and worryingly, a 2017 study of estimated alcohol consumption during pregnancy around the world reported the UK as the 4th highest country with 41% of mothers admitting to drinking during pregnancy. Children in the care system have an increased risk of prenatal drug and alcohol exposure, and therefore, and increased risk of FASD.
How is it diagnosed?
It is unlikely that FASD will be diagnosed at birth unless there is strong evidence that the mother has consumed excessive amounts of alcohol during her pregnancy. It is more likely that a diagnosis may be considered much later on, when other issues develop. Diagnosis is a complex issue looking at the likelihood of PAE and current problems that the child may have developed.
A “Health Needs Assessment” document for FASD says that: “As yet, no single set of guidelines for diagnosis have achieved consensus in the academic community, although there is a lot of agreement on the main principles.” The National Institute for Clinical Excellence (NICE) have recently published a consultation document on the quality standards to expect with FASD although this was only published in March 2022 so is still being developed. In this document it considers a standard so that:
“Children and young people with probable prenatal alcohol exposure and significant physical, developmental or behavioural difficulties are referred for assessment with a healthcare professional with additional training in FASD.”
The real issue here is that there are only currently a limited number of qualified FASD-specialist healthcare professionals and one specialist centre in Surrey, so it can take a long time for suspected cases to be considered let alone diagnosed.
Is there a cure?
There is no cure for FASD but with early intervention, its effect can be minimised so that children can be supported with their behaviour, social skills, language, learning and cognitive functioning. They should be involved with the SENCo and SEND services as soon as possible so that their individual needs can be assessed and provisions put in place to help them.
What can you do in your setting?
Perhaps the most helpful thing that settings can do to help with FASD is to raise awareness of the condition so that anyone who thinks they may have a child with FASD can seek a diagnosis and support sooner rather than later. The aforementioned assessment needs document acknowledges there is a current lack of support but says there is also “a growing global evidence base emerging, which could be tailored to design culturally appropriate interventions that are focussed on the needs of individuals and their families and carer”.
For the moment, until more specific guidelines are published, we should make our staff more aware of FASD as a condition and be more proactive in considering whether the children in our care may have the condition, so that we can best support their complex needs. FASD requires SEND input and an individually-tailored response.
How did the FASD Awareness Day start?
The idea was developed by 3 people with an interest in FASD after a meeting in Tucson, Arizona in 1998. They came up with the date idea (9th day of the 9th month in the year 1999 as a reminder that women can go without alcohol for the duration of their pregnancy (which is 9 months) for the health of their unborn children, and FASDay was started. Since then, 9/9 has been picked up by other FASD related groups and is now promoted around the world.