Fetal alcohol syndrome disorders (FASD) are regarded as the leading known cause of non-genetic intellectual disability in the Western world. Special Children gives some useful information about FASD and interviews the adoptive mother of a child with fetal alcohol sydrome
So-called ‘lifestyle illnesses’ are fast becoming the number one concern of politicians and health professionals. Professor Ian Gilmore, of the Royal College of Physicians, recently warned of ‘a tsunami of health-related harm’ if the government failed to take action on issues such as obesity and alcohol-related disease. Information released by the Department of Health in July, based on a new approach to counting alcohol-related hospital admissions, produced a figure of 811,000 in 2006 (accounting for 6% of all admissions) compared with 473,500 in 2002. Previously, researchers only counted the three most common types of alcohol-related diseases – alcoholic liver disease, alcohol poisoning and mental and behavioural disorders. This new approach counts 44 conditions caused by, or strongly associated with, alcohol consumption during pregnancy.
Buried in these figures are trends among the young that are also worrying policy makers. Cheap alcohol targeted at the youth market and the irresponsible selling of alcohol to under-age drinkers are partly to blame. So too is the way in which popular culture, from advertising to TV soaps, glamourises excess drinking. According to the recently launched Youth Alcohol Action Plan, while there has been an overall decrease in the proportion of young people drinking alcohol, there has been sharp increase in the amount consumed by those who do drink. The average weekly consumption of alcohol for 11- to 15-year-olds increased from five units in 1990 to more than 11 units in 2006. In April of this year, the Home Office announced that in a half-term clampdown it had confiscated 20,945 litres of alcoholic drinks (44,265 pints) from underage drinkers in an operation involving 39 forces in England and Wales. Twenty-five per cent of the 5,143 youngsters who surrendered alcohol to the police said they were aged 15 or under.
Much media coverage of under-age drinking inevitably focuses on the anti-social behaviour of youngsters fuelled by alcohol – a link explored in the Youth Alcohol Action Plan. But alcohol impacts at both ends of the education system in other ways. While there is now new evidence that drinking too much alcohol can impair adolescent brain development, there is also increasing evidence that children are being born with physical and neurological damage as a consequence of their birth mothers drinking during pregnancy. Children in this category suffer from a range of conditions grouped under the umbrella-term fetal alcohol spectrum disorders (FASD), at the centre of which is fetal alcohol syndrome (FAS) itself.
What is FASD?
In June 2007 the British Medical Association (BMA) published a guide to FASD for healthcare professionals. While the authors note that there has been a significant amount of research into FASD in Canada and the USA over the last 30 years, the situation in the UK, where the existence of FAS is still debated, is less encouraging. This lack of UK research is especially surprising in that although FAS – the most clinically recognisable form of ASD – is not considered a common condition; it is regarded as the leading known cause of non-genetic intellectual disability in the Western world. The reported worldwide incidence of FAS is 0.97 cases per 1,000, while a 2002 study estimated that in Western countries as many as nine per 1,000 live births involve children affected by a range of alcohol-related disorders.
The cause of these conditions is straightforward: alcohol readily crosses the placenta and as the embryo/fetus does not have a fully developed blood filtration system it can easily interfere with normal prenatal development. This disruption of normal developmental processes is thought to occur via multiple mechanisms activated at different stages of pregnancy. Hence, the quantity of alcohol consumed, how it is consumed (ie, over an extended period of time or via ‘binge drinking’) and at what stage of pregnancy, can all affect the embryo/fetus differently. While alcohol can affect prenatal development at any time, the embryo/fetus is especially vulnerable during the first and third trimesters. Other factors can also play a part in determining whether, and how, fetal damage occurs, including genetic makeup, the general health of the mother and environmental factors such as diet and stress. Particularly inconclusive is whether low-to-moderate levels of drinking have adverse effects on the embryo/fetus. However, the BMA guide states that current evidence is not robust enough to exclude any risk from low-to-moderate levels, and that evidence is continuing to emerge as to the possible effects of prenatal alcohol exposure at these levels.
Among the parts of the embryo/fetus that can be affected by alcohol are the brain and the central nervous system (CNS). Damage can be both intellectual and physical. However, it is the central nervous system that is at greatest risk as CNS cells have a lower toxicity threshold for alcohol. According to the BMA, ‘Damage to the brain is often, though not always, accompanied by distinctive facial abnormalities, physical and emotional developmental problems, memory and attention deficits, and a variety of cognitive and behavioural problems.’
FASD is obviously 100% preventable if pregnant women do not drink alcohol. However, the BMA guide notes that: ‘In the UK, there have been no universal strategies focused specifically on preventing these disorders.’ It is unclear whether this is because FASD are perceived to be a minor problem or because it is felt such strategies are ineffective. Having surveyed the available evidence, the BMA guide questions the effectiveness of alcohol education and health promotion campaigns outside of an overall strategy that has proved effective: making alcohol more expensive and limiting its availability. But, as the guide points out, such policies ‘have proved unpopular politically in the UK, and have not been used as part of the strategy to reduce alcohol-related harm.’
Available evidence also indicates low levels of understanding and knowledge of FASD among healthcare professionals, who are obviously the first point of contact for pregnant women. Matters are made worse by the vague and conflicting official advice pregnant women are given. Until recently, they were advised not to drink more than one or two units of alcohol once or twice a week. However, a recent YouGov survey of 1,429 drinkers in England carried out for the Department of Health found three-quarters of those surveyed did not know that a typical glass of wine contains three units of alcohol. In May 2007, the Department of Health revised its advice when it said that pregnant women or women trying to conceive should avoid drinking alcohol. Announcing the decision, deputy chief medical officer Dr Fiona Adshead said: ‘We have strengthened our advice to women to help ensure that no one underestimates the risk to the developing fetus of drinking above the recommended safe levels.’
While there are well-established diagnostic criteria for FAS, this is not the case for other pre-natal alcohol-related conditions. In the case of FAS, the diagnosis is based on the presence of a characteristic set of facial features combined with growth and neurocognitive deficits. The National Organisation for Fetal Alcohol Syndrome UK publishes a useful A5 booklet with a section on FASD characteristics, including an illustration showing the facial features that form part of the diagnosis.
hese include a small head circumference, an upturned nose, a flat nasal bridge, a thin upper lip and a smooth philtrum (the vertical groove between the nose and upper lip). Extensive diagnostic guidelines can also be downloaded from the Centers for Disease Control and Prevention (CDC) in Atlanta, USA. These guidelines were initially drawn up in 2003 because of a widespread failure by primary care providers and others who care for children to routinely or consistently identify individuals with FAS. The guidelines attribute this failure to four major factors: the absence of sufficiently specific and uniformly accepted diagnostic criteria; the fact that each of the symptoms has a broad range of differential diagnoses, making diagnosis more difficult; lack of knowledge and misconceptions among primary care providers; and a lack of diagnostic criteria to distinguish FAS from other alcohol-related conditions.
Not surprisingly, then, the BMA guide stresses that diagnosis requires skilled clinical differentiation and a good understanding of the nature of FASD and the diagnostic techniques involved in identifying the range of conditions.
What schools can do
Despite these difficulties, formal diagnosis of FAS at the earliest possible stage is crucial as it permits the implementation of early intervention and treatment programmes. While educational professionals are not in a position to make a diagnosis, they are well placed to make the initial identification. As the BMA guide explains: ‘The characteristic facial features, growth deficiencies and CNS manifestations associated with FAS commonly become evident during infancy. Infants affected by FAS may exhibit hyperactivity, poor fine-motor control, social naivety, and/or intellectual disabilities, and they may be irritable and fail to meet developmental milestones. Initial recognition can be made by the child’s parents, school teachers, social service professionals and healthcare professionals.’
Where a child is suspected of having FAS, an initial evaluation by a healthcare professional is necessary, followed by a full and thorough diagnosis where referral criteria are met. The BMA guide states that this should include ‘physical examination, intelligence tests, occupational and physical therapy, and psychological, speech and neurological evaluations.’ This requires that the necessary expertise in diagnosing and managing neurodevelopmental conditions exists at a national or regional level. Where it doesn’t exist, it clearly needs to be developed.
The special educational needs of children with FAS will differ depending on the severity of their condition. Hence they will need individually tailored learning programmes. According to NOFAS-UK, most children with FASD have developmental delays, although their IQ can cover the normal range (70–130). At primary school, children may exhibit short attention spans, poor coordination, have difficulty with both fine and gross motor skills and require a lot of one-to-one attention. Older children may have low self-esteem and show poor impulse control. Because of their developmental delay, seemingly normal teenagers may exhibit the behaviour of children half their age.
School staff can also play a part in informing older children and the local community about the risk inherent in drinking alcohol during pregnancy. In the case of secondary school children, issues to do with alcohol abuse should form part of the PSHE curriculum. In the case of the local community, use can be made of school events such as open days to display relevant literature and schools can participate in health awareness initiatives in their catchment areas.
For those wishing to find out more about FASD, regular training events are organised by NOFAS-UK.
Campaigning for change
Susan Fleisher is just off the train from London and on her way into a meeting at Sunfield School in Clent. An American by birth, she still has an East Coast accent and a can-do manner, as you would expect of someone who has been both a teacher and a TV producer. It was the latter role that brought her to the UK 20 years ago, as the person responsible for packaging the Oprah Winfrey and Ricki Lake shows for Channel 4. It was while she was here that she adopted her daughter Addie, whose birth mother she knew was an alcoholic. What she wasn’t prepared for was the impact the mother’s drinking would have on Addie’s future.
‘She had learning difficulties, but she had tutors, all the best things. But nothing was working,’ Susan explains. ‘Then nine years ago I was at conference about adopted children and when they started talking about FAS, bells went off. She had seven of the eight traits mentioned and then they mentioned having a small head circumference… I had been to about eight bicycle shops and none of them had a children’s bicycle helmet small enough for my daughter.’
Diagnosing and dealing with FAS
Faced at long last with the possible cause of Addie’s learning difficulties, Susan took her to Great Ormond Street Hospital where they diagnosed FAS. ‘I went into a deep depression, thinking my daughter’s life outcome would be completely different, because she was this cute, bright toddler but delayed in everything,’ Susan confides. ‘Then I realised there were much bigger ramifications.’
Following Addie’s diagnosis, Susan moved her into special education. ‘I have to rave about the quality of people I have met in this country,’ she says. ‘I find better services here than my friends in America. The problem is funding, and resources are so stretched.’ Despite this, she says her daughter has received wonderful support, and as a result avoided many of the problems experienced by less fortunate FAS sufferers.
‘Everything turned around in our lives when I got the correct diagnosis. A lot of people say “Don’t give them a diagnosis; it has an alcohol label”. That’s true; it’s a terrible label. But these children need the right diagnosis, then they’ll get the right support and their lives will turn out much better.’
Two further events changed Susan’s life forever.
Because of her job in television, the Avent bottle company approached her with an offer to fund an educational film on FAS. The end product – A Child For Life – is a 20-minute film that combines expert medical testimony with the moving stories of young people and their mothers whose lives have been changed irrevocably by pre-natal alcohol damage. At the same time, the National Organization on Fetal Alcohol Syndrome in the USA (www.nofas.org) asked Susan to establish a sister organisation in the UK. NOFAS-UK (www.nofas-uk.org) was launched in September 2003.
Today the charity occupies most of Susan’s available time and the TV career is a fond, if distant, memory. Since its inception, NOFAS-UK has campaigned to raise awareness of the dangers of FASD through publications, educational events and lobbying.
In September 2004, with Avent’s support, it distributed A Child For Life and an associated teaching pack to more than 4,600 secondary schools in the UK. Rights to the film have since been sold to a number of other countries including Australia, the Netherlands and Poland.
Through its contacts, NOFAS-UK has also succeeded in raising the profile of FAS with key policy makers. A meeting with Sir Liam Donaldson, chief medical officer for England, resulted in changes to Department of Health advice given to pregnant women. In the House of Lords, Lord Mitchell has battled successfully for the adoption of an Alcohol Labelling Bill that requires the drinks industry to display warning notices to pregnant women on bottles of alcoholic drinks. Susan hopes to continue these successes in September when she meets the secretary of state for children, schools and families, Ed Balls.
So what does she hope to achieve?
‘Basically I feel the government should do what the Avent bottle company did – offer A Child For Life to every single school. And it should be part of their PSHE curriculum. That would be a huge step in the right direction.’ NOFAS-UK is also running a pilot project called ZAP (Zero Alcohol in Pregnancy) with a school in the East End of London in which they train teen tutors to teach other teenagers about FAS. This she feels could be extended to other schools. She also thinks there is scope to work with parents through organisations such as PTAs.
With the increased focus on young people’s drinking habits, the time is right for the dangers of FASD to be taken more seriously. But Susan Fleisher knows that after five years of campaigning, moving FAS up the political agenda will require a concerted effort by all concerned.