You may never have heard of foetal alcohol spectrum disorder (FASD). But if you are a teacher, you are almost certain to have had pupils battling its symptoms in your class.
The condition, estimated to affect one in 100 of all children born in the UK today, has been around for as along as pregnant women have consumed alcohol. Aristotle appeared to be aware of its risks in the 4th century BC when he said: "Foolish, drunken and harebrained women most often bring forth children like unto themselves, morose and languid."
In 1834, evidence presented to a House of Commons committee investigating drunkenness noted that infants born to alcoholic women sometimes had a "starved, shrivelled, imperfect look".
Today we know that, as well as the particular facial and physical characteristics associated with more severe cases, alcohol during pregnancy can cause brain damage to the foetus, leading to problems with numeracy, short-term memory, cognitive and social skills and behaviour.
One mother, Julia Brown, founder of the FASD Trust, says: "It's like living with someone who is drunk. They are clumsy, suffer memory loss and display socially inappropriate behaviour. They think they are invincible, that they are Superman and can fly."
In short, it makes children very difficult to teach. Yet this syndrome - the most common non-genetic learning disability in the UK, a condition that involves irreversible brain damage and goes to the heart of how children learn - is virtually unrecognised in our schools system.
Thirty-six years after the disorder was first identified by scientists, there is still no official guidance for teachers in England on how to educate those affected.
Professor Barry Carpenter, an Oxford University academic who has fought an eight-year solo battle for official recognition of the syndrome in schools, argues that these children have been "sorely neglected".
The amount of help offered to pupils with attention deficit hyperactivity disorder is striking in comparison. ADHD is the more prevalent condition - estimated to affect between 3 and 7 per cent of pupils. But if children with FASD had a seventh of the resources devoted to ADHD available to them, they would probably improve immeasurably.
A search for ADHD on the Department for Children, Schools and Families website brings up the maximum 100 entries. But type in FASD and you get nothing of relevance at all.
So why does such a common condition receive so little attention? Because in many cases it goes completely undetected. Susan Fleisher from the National Organisation on Foetal Alcohol Syndrome, says: "The majority of children with FASD look normal, are very articulate and verbal, but their thinking has been scrambled and everyone thinks it's because they aren't trying," she says.
Most pupils with the condition either go undiagnosed, she says, or they are misdiagnosed - usually as having ADHD.
The two conditions share symptoms such as short attention spans, difficulty in carrying out instructions and hyperactivity. But they are also different in very important respects and confusing the two can have potentially serious consequences.
"Pupils with ADHD are often quite good at maths," Professor Carpenter explains. "But for those with FASD, mathematical and numerical concepts can be very difficult because the parietal lobe, which controls numeracy and computational activity in the brain, may have significantly reduced functioning."
The academic, who is also special educational needs director for the Specialist Schools and Academies Trust, has just managed to secure Pounds 50,000 from the Training and Development Agency for Schools for a NOFAS research project into how learning is affected by the disorder.
But Ms Fleisher describes the funding as a "drop in the ocean". "There is so much more that could be done," she says, still smarting from the lack of interest shown by the DCSF.
Other countries have gone further. Canada's education system is more than 20 years ahead, according to Professor Carpenter, and has introduced "extensive guidance and a well-developed system of provision for these children".
Asked why, he points to Canada's Native American and Inuit communities. Like other indigenous peoples, such as Maoris and Aborigines, he says they are more susceptible to the damaging effects of alcohol, with FASD affecting as many as one in eight births.
But the UK has its own reason for the syndrome being a big issue - binge drinking.
"Every time a female goes binge drinking and conceives, it is a fair estimate that another child will be born damaged by alcohol," Professor Carpenter says.
Heavy drinking can interfere with the menstrual cycle, he says, so there is a good chance that these women may not even realise they are pregnant during the crucial first 12 weeks when the foetus is most vulnerable to alcohol damage. He fears many continue drinking, oblivious to the harm they are doing.
And the problem is likely to get worse. Research published earlier this month by the Joseph Rowntree Foundation revealed that the proportion of women who binge drink almost doubled between 1998 and 2006.
Campaigners want schools to do more to raise awareness of the dangers of drinking during pregnancy. But there is also a lot that teachers can do for pupils with the syndrome.
Professor Carpenter's early research suggests that the classroom itself - the physical environment in which these pupils learn - can make a big difference. Calming colours, subdued lighting and avoiding visual clutter and distractions all help.
He also recommends that teachers consider how they deploy staff and ensure they are aware of the needs of pupils with the syndrome. For example, if a child finds maths particularly challenging, a teaching assistant could be made available to support them during the lesson.
Other strategies can be devised to take account of the fact that pupils with the disorder tend to be better at learning visually rather than by being talked to.
Relations with other pupils can be another major problem as children with the syndrome are often irrational but long for friendship. Teachers who try "buddy systems" can find the buddy is physically or verbally abused by the child with the disorder, so Professor Carpenter suggests that the system is operated on a rota, with different buddies for different lessons.
Because pupils affected by the syndrome can experience mood swings, Professor Carpenter backs research that suggests teachers should develop flexible lesson plans. These could contain a core activity allowing pupils to acquire central skills, a simpler activity to support the core and link to earlier learning, and a possible extension activity that could reinforce the core skills in a different form.
"The purpose of this is for the teacher to be able to pitch the learning for the day depending upon the child's mood and attitude to learning," Professor Carpenter says. "If the child is particularly distracted or emotionally volatile, then the support activity may be implemented, but if they are calm and engaged, then the extension activity could be used."
Professor Carpenter's research will look at teachers in nine as yet unidentified primary, secondary and special schools who have developed ways of supporting pupils with the syndrome. He hopes the methods they employ can be used as examples to help pupils with FASD throughout the country.
"They epitomise that much-used phrase, `complex needs'," he says. "Their unusual style of learning and their extreme challenging behaviour is out of the experience of many teachers, and therefore they find themselves pedagogically bereft." www.nofas-uk.org
THE FASD CONTINUUM
- Full-blown Foetal Alcohol Syndrome (FAS)
Sufferers have distinctive craniofacial abnormalities and growth difficulties.
Typically, they display intellectual impairment. Symptoms may include abnormalities of the heart, misplaced or absent genital organs, small stature or other physical difficulties.
The most obvious indicators are a small head, folds of skin around the eyes, and an indistinct philtrum (mid-line groove) from the nose down to an often thin upper lip.
- Partial FASFoetal Alcohol Effects (FAE)
Fewer characteristic featuresmore mild effects.
Alcohol-Related Neurodevelopmental Disorder (ARND)
Sufferers do not show the facial or physical characteristics, but learning difficulties emerge as the child gets older.
SYMPTOMS TO SPOT
- Short attention span
- Erratic mood swings
- Poor memory
- Lack of social skills
- Poor auditoryvocalvisual sequencing
- Sensory integration difficulties (particularly lack of co ordination)
- Poor retention of task instruction
- Numeracymathematical difficulties.
HOW TEACHERS CAN HELP FASD CHILDREN IN CLASS
- Create a calm learning environment free from clutter and with minimal distractions
- Use focused tasks presented in small steps
- Provide personal space for the pupil, with plenty of support and praise
- Use visual structuring
- Carry out role playing
- Give short, key information-carrying instructions
- Use visual clarity and graphic simplicity.
- Deploy frequent, short exercise programmes during the school day
- Provide a breakdown of tasks with visual and tactile clues, and give the child time to complete the task
- Give messages through a variety of sensory pathways
- Seat the child at the front of the classroom, always in the same position
- Use tape on the floor to define boundaries
- Keep the classroom door closed
- Close blinds partially if there is bright daylight.
- Avoid bells
- Be consistent with language, rewards and routines
- Be prepared to repeat instructions and rules
- Implement and stick to a routine
- Provide structure and constant supervision
- Employ adaptive teaching techniques that focus on the child's interests, strengths and developmental stage.