What is FASD?
Dr Mary Mather is Medical Director for Parents for Children, a charity which specialises in finding loving, caring families for children with exceptional needs. Here she talks about the impact on children of their birth mother misusing alcohol during pregnancy…
Hidden Harm, published in 2003, was the first major attempt to look at the impact of drug and alcohol misuse on children. It estimated that between 200,000 and 300,000 children in England and Wales lived in families where one or both parents had a serious drug problem. Up to one million children are thought to be affected by alcohol misuse, with an estimated 7,000 born each year. Many will need permanent substitute families as their parents become progressively unable to care for them. Some local authorities are reporting that up to 70 per cent of children needing adoptive families have drug and/or alcohol misuse in their background or have been exposed to drugs and alcohol during pregnancy.
Compared to Canada and the USA, little systematic research has been carried out into the needs of children affected by alcohol and drugs. Much of what is known is based on the research carried out in the USA. Far less is known about the long-term impact of drugs. However, most drug misusers also drink heavily and the children for whom adoptive families are needed will usually have been exposed to both.
It is now recognised that exposure to alcohol and drugs adversely affects the development of the foetal brain and central nervous system. The damage to the unborn child, however, is often made worse because their mothers smoked cigarettes or cannabis whilst pregnant, had poor diets, and neglected their own health. The child might be born prematurely, with little or no antenatal care, or been admitted to a special care baby unit suffering from drug withdrawal. After birth, inadequate parenting and placement moves will have added to the damage suffered by the child. When finding out more about a child whose birth mother has been known to misuse alcohol or drugs, prospective carers are often told they have to live with ‘uncertainty’ regarding the child’s future development – without any explanation of what this uncertainty might mean.
Adoptive parents are often confused by the fact that a child exposed to alcohol before birth does not have a diagnosis of Foetal Alcohol Syndrome (FAS). FAS is a very specific diagnosis, which can only be made if the child has the very characteristic facial features combined with poor growth, moderate to severe developmental delay and a clearly documented history of exposure to alcohol before birth.
The diagnostic facial features only occur if the foetus has been exposed to alcohol at the time the face is developing, in very early pregnancy. If a mother binge drinks – the most common form of alcohol misuse in British women – and is sober when the face is developing, the child will look completely normal and the exposure to alcohol will be missed. The foetal brain, however, develops throughout the whole pregnancy, which means that children may still have permanent and irreversible brain injury as a direct consequence of alcohol consumed at any point in the pregnancy. The term Foetal Alcohol Spectrum Disorder (FASD) is used to describe that condition, which manifests itself in various ways in these children.
A child without the facial characteristics of FAS is as vulnerable as the more obviously affected child and can have equally challenging, long-term problems. However, children with FASD are rarely diagnosed. Very young children may meet their early developmental milestones, or any developmental delay is attributed to a poor home environment. When moved to a good foster placement, many children do very well. However, this early progress can mask more serious developmental problems, which are only diagnosed when substitute parents begin to question the unexplained learning and behaviour problems which present in later childhood.
The effects of exposure to alcohol before birth vary from subtle to severe and persist for the rest of the child’s life, right through into adulthood. Alcohol misuse in pregnancy causes a hidden, but very real, disability, and the affected child’s thought processes and behaviour are very different to those of a child who was not exposed to alcohol before birth.
These children find it difficult to process information, to make judgements and to link actions to consequences. They can suffer from hyperactivity, impulsiveness, short memory spans, concentration difficulties, poor planning and organisational skills, poor judgement and failure to consider consequences, motor difficulties, perceptual problems and specific learning disabilities. As they grow older they can have social difficulties in relating to their peer group and often face a traumatic path through adolescence and beyond.
We need to radically change our thinking about these children. These are not children who won’t but children who can’t do what is being asked of them. They are not wilful, naughty or disobedient but unable to make sense of the world, frustrated and frightened. They are not lazy, but exhausted, unable to start a task or to fully understand verbal instructions. These children cannot understand cause and effect and therefore punishing them for doing wrong does not guarantee that they will not do it again. They do not necessarily have emotional, attachment or behavioural difficulties, but they do have organic brain damage.
The first step is to accept that there is no cure. However, with increased understanding of brain functioning and development, much can be done. Families could be given better strategies to cope with this disability if its nature and impact were more clearly understood and recognised. Without this, families are often passed from professional to professional, accumulating diagnoses, none of which fully explain the complexity of the child’s problems.
Information, support and placement stability are the keys to success in raising a child with FASD. The importance of a holistic multi-disciplinary assessment by a team with specific knowledge of FASD cannot be overemphasised.
Dr Mary Mather
A few definitions…
FASD
short for Foetal Alcohol Spectrum Disorder, is used to describe a wide range of disorders affecting children whose birth mother misused alcohol during pregnancy. Most babies with FASD will seem irritable, have trouble eating and sleeping, and be sensitive to sensory stimulation. They may also have some level of developmental delay and learning difficulties at a later stage.
FAS
Foetal Alcohol Syndrome (FAS) is a very specific diagnosis which can only be made if the child has the very characteristic facial features combined with poor growth, moderate to severe developmental delay and a clearly documented history of exposure to alcohol before birth. The diagnostic facial features only occur if the foetus has been exposed to alcohol at the time the face is developing, in very early pregnancy. These include epicanthal folds(skin of the upper eyelid covering the inner corner of the eye), smooth, wide philtrum (the midline groove in the upper lip that runs from the top of the lip to the nose), and thin upper lip.
FAE
short for Foetal Alcohol Effects, is usually used to apply to children with some, but not all, of the characteristics of FAS.
ARND
Alcohol-Related Neurodevelopmental Disorder (ARND) is similar to FAE, in that it applies to children with damaged or impaired central nervous system, but without growth deficiency or FAS facial features.
Other terms used are Partial Foetal Alcohol Syndrome (PFAS) or Alcohol–Related Birth Defects (ARBD).
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: 11 April 11
