Better recognition of FASD by health and social care professionals will help give affected young people better chances in life, writes Joanna Buckard.
By Joanna Buckard, specialist trainer and health and social care lecturer
Foetal alcohol spectrum disorder (FASD) is a lifelong, largely invisible disability. It’s caused by prenatal alcohol exposure and is a well-known preventable cause of intellectual and behavioural disorders.
Young people with FASD commonly experience difficulties around impulsivity, social understanding, relationships, criminality, mental health and linking cause and effect. They can be vulnerable to all types of grooming, including child sexual exploitation (CSE), in their pursuit for relationships and acceptance. In adulthood, they’re more likely to have problems with housing, relationships, employment, parenting and the law.
Studies suggest that in the general population, between 1 and 5% of people could be affected by FASD, which has been a diagnosable condition since 1973. Yet it is still sometimes thought to be rare, with some professionals believing that they’ve never worked with a child with the condition, and is frequently missed or misdiagnosed.
This is often down to a lack of recognition and training, among social workers as well as GPs, paediatricians, and teachers. Parents and carers of children and young people with FASD comment on a lack of appropriate understanding, support and resources – factors that can lead to family breakdown and failed adoption.
‘Alcohol and ambiguities’
Alcohol is a known teratogen, a substance that disrupts typical development in pregnancy. Foetal exposure to a teratogen can cause death, malformations, growth deficiency or functional deficits. Not all teratogens cause all four of these outcomes, but alcohol is one that does. It is a neuro-behavioural teratogen that can affect the central nervous system and developing brain, even at low levels of exposure. This can result in brain damage and behavioural changes without necessarily causing physical malformations.
In the UK, advice around alcohol consumption has been ambiguous, and a clear understanding of the risks – both among professionals and pregnant women – remains limited. Women have been advised that they can drink one to two units once or twice a week during pregnancy.
But studies have shown that understanding around units is poor, as is recollection. This means women may have been drinking far more alcohol than is recorded. Earlier this year, England’s chief medical officer Dame Sally Davieswarned that there is no safe level of alcohol use in pregnancy.
FASD is a spectrum disorder and a child or young person should receive a specific diagnosis of foetal alcohol syndrome (FAS), alcohol-related neurodevelopmental disorder (ARND), alcohol-related birth defects (ARBD) or partial foetal alcohol syndrome (PFAS).
FAS is the most recognised form of the disorders because of the characteristic facial features – but it’s not the most common form.
While some children and young people with FASD will have an IQ below 70, most have an IQ within normal limits and appear bright-eyed, friendly and engaging with an effective superficial skill in language. Many will give the impression of being more able than their actual functional level.
Due to its presentation, FASD can sometimes be missed altogether, and difficulties may be attributed to attachment disorder, neglect, ADHD, conduct disorder or autism. None of these diagnoses, however, would fully explain the characteristics of a child with FASD.
When a child or young person does get referred for FASD diagnosis, there is frequently no record from health or social care services of any known or suspected prenatal alcohol consumption. Not all assessment forms specifically include in-depth questions regarding prenatal alcohol use, meaning the information recorded can vary and may be linked to the individual knowledge base of each professional. In the case of looked-after or adopted children, this can then make getting the information required to make a diagnosis difficult retrospectively.
The majority of looked-after children may have been exposed to prenatal alcohol, yet very few will have been assessed for FASD.
In sibling groups, where one child has been identified as having FASD, all siblings may benefit from being assessed as there is increased risk that they may have also been affected. It is more common for a child with facial features, global delay or growth problems to be identified first, but his or her siblings may have other forms of the disability caused by prenatal alcohol exposure.
‘Getting in early’
FASD presents differently depending on the age of the young person. The differences may not be apparent in young children but it is important that FASD is not ruled out during this time, because later in childhood or during adolescence it may be expressed and difficulties occur.
In the case of adoption of a young child that is known or suspected to have been exposed to prenatal alcohol, even who is meeting all milestones at the time they are placed for adoption, it is important that adoptive parents are made aware that difficulties may subsequently develop.
Secondary disabilities become more obvious during later childhood and adolescence. They can cause many functioning problems as the young person appears emotionally and socially immature compared with their peers and do not seem to learn from their mistakes.
Studies show that long-term outcomes are worse for children affected by FASD who have not received the diagnosis and therefore go without appropriate support and understanding at school or at home. In looked-after children, who experience frequent moves, the impact is intensified.
During the period of transition to independence, it is crucial that a young person’s needs are fully assessed. In a young person with normal IQ, who presents well, assessments can show a daily living skill of a much younger child, leaving them very vulnerable.
The proper training of professionals in foetal alcohol spectrum disorders is imperative so that assessment, diagnosis and support strategies can be implemented in order to allow the affected individual every opportunity to succeed.
Story courtesy of Community Care