FASD: the invisible disability
Foetal Alcohol Spectrum Disorder (FASD) is still very much an unknown in the UK, with little research carried out on the subject. However, we do know it affects many children, especially those who are in the care system and are waiting to be adopted and fostered. But there is growing awareness of its impact on children and their development...
“Fetal alcohol spectrum disorders (FASD) are a series of completely preventable mental and physical birth defects resulting from maternal alcohol consumption during pregnancy. FASD are lifelong conditions that can significantly impact on the life of the individual and those around them...” 1
Depending on how much and especially at what stage of the baby’s development their birth mother drank alcohol, babies may be born with small birth weight or head circumference, and some facial characteristics. However, some of these may not be that apparent immediately after birth.
In many cases, it is the baby’s brain and nervous system which is damaged, with no visible characteristics. This makes FASD very hard to diagnose. It is therefore edifficult to establish exactly how many children are affected by FASD in the UK. Extrapolating from international research, it is thought that it could be as many as one in 100 births in the UK. What we do know is that the majority of children with FASD are fostered or adopted, because their birth parents’ misusing alcohol often means that they are notable to look after them.
As Dr Mary Mather explains, children with FASD have organic brain damage. It means that FASD is not a curable condition, but one that these children will have to live with it for the rest of their lives. However, with the right support, and understanding of their condition, these children can thrive. Jane, a young person with FASD, shares her story with her and tells us: “I know I can achieve well if I get the right help.”
Children with FASD can be challenging as well as rewarding, as Ali, who has adopted three siblings with FASD admits. She now describes husband Barry and herself as “experts on caring for their children”.
Support is paramount for both children and carers. Parents for Children, a charity which seeks to place children with very special needs, including FASD, into permanent families has recently launched its Foetally Affected Children’s Team (FACT) Centre of Excellence, to which children can be referred for support. Find out more in our article.
Little research has been carried out so far in the UK on FASD. However, there is growing awareness of its impact on children, especially those in the care system. Many organisations have been set up to provide support and information for families affected by FASD.
Although FASD can often be invisible, and is not curable, the most important thing for children affected by it is to be correctly diagnosed and given all the support they will need to achieve their full potential at school and in life.
Isabelle Rameau - Editor, Be My Parent
1Fetal alcohol spectrum disorders, a guide for the healthcare professional, British Medical Association, June 2007
Originally published in the Be My Parent newspaper in January 2009.
This article is published with the kind permission of the people involved. You may download it for your own reference but if you wish to use it for any other purpose, please contact Be My Parent for authorisation: Be My Parent, BAAF, Saffron House, 6-10 Kirby Street, London EC1N 8TS. Telephone: 020 7421 2666/5/4.
Last updated: 08 January 09
