A Unique Child: Inclusion - With every sip

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There are lots of children that are experiencing the effects of maternal alcohol consumption but are going unidentified and unsupported with their precise needs. And their numbers are growing. Yet despite the increasing prevalence of Foetal Alcohol Spectrum Disorders (FASD), there is little awareness and knowledge of them in the UK. So, do you know how to spot and support a child that has FASD?

Foetal Alcohol Spectrum Disorders is a general term used to describe the broad-ranging effects on the foetus and child that occur as a result of maternal alcohol consumption in pregnancy. The sooner this syndrome is identified and responded to, the better the prospects for the child.

Dr Carolyn Blackburn, senior research fellow at Birmingham City University, has devoted many years of research to this field and makes it clear that, ‘Prenatal exposure to alcohol can lead to intellectual and developmental delays and differences which impact on children’s learning in all areas of the curriculum and require a particular teaching approach and learning environment.’

FASD is, then, an area of concern needing to be engaged with by all practitioners working with children, especially those in the early years.

CAUSES

Alcohol is a teratogenic drug – a substance that can interfere with the development of the embryo or foetus. When a woman drinks alcohol during pregnancy, some of it passes easily across the placenta and into the foetus. This is a problem for the normal growth of the foetus because it means that not enough oxygen and nutrition reach the vital organs, placing the foetus at risk of impairments. The extent of the harm will depend on a number of factors: primarily the amount and duration of the drinking and the timing of it.

First, if the woman is a heavy drinker and/or using other teratogenics (such as certain drugs) then the damage will be worse. Secondly, and importantly, the foetus is particularly vulnerable to damage during the first trimester (the first three months) of the pregnancy. Unfortunately, this coincides with the time when a woman is least likely to know that she is pregnant. Having said that, it is important to remember that the foetus is at risk throughout the pregnancy.

MYTHS AND STIGMA

At the mention of a child experiencing the effects of FASD, there can be an assumption or judgement about the mother’s alcohol consumption levels without any consideration of a range of scenarios regarding the child’s very early experiences. In fact, there is not one ‘type’ of woman with a negligent lifestyle who gives birth to a child with FASD, and only small amounts of alcohol can cause damage to a baby.

Over recent years, Government guidelines have changed regarding what is and what is not safe prenatal alcohol consumption. As little as 15 years ago, it was thought that moderate drinking (a small glass of wine a couple of times of week) during the pregnancy would be unlikely to harm the foetus. However, this advice has changed and it is now thought that total abstention from alcohol is the only safe option.

Women of child-bearing age are vulnerable as they are among the country’s heaviest drinkers, engaging in excessive and binge drinking. This is a new and relatively recent pattern of alcohol consumption. Along with many of her friends, any young woman, unaware that she is pregnant, could be drinking in this way in the early stages of pregnancy when the foetus is especially sensitive.

There is, too, the older woman in her mid to late forties who might miss a period and, assuming it is connected with the menopause, continue to drink, totally unaware that she is actually pregnant.

TYPES AND SIGNS

The effects of alcohol on the foetus are variable. Some babies will have ‘full-blown’ foetal alcohol syndrome. Other types of FASD include:

• partial foetal alcohol syndrome
• alcohol-related neurodevelopmental disorder
• alcohol-related birth defects.

The most obvious and physical characteristics specific to FASD can be seen in the facial features. The child will often have:

• a small head
• a flattened face
• a smooth philtrum (the ridge between the upper lip and below the nose)
• a thin upper lip
• small eye openings
• wide spacing between the eyes.

Many children, however, will not present with such classic or hallmark features. In common with many disorders that are on a spectrum, the degree of symptoms varies from severe (and relatively easy to recognise) to mild (and much more difficult to identify).

In addition, many symptoms are not unique to FASD in that they overlap with those of other conditions, for instance autistic spectrum disorders. This makes misdiagnosis or under-diagnosis more of a likelihood.

Children with alcohol-related disorders may present with difficulties in:

• muscle co-ordination and balance
• growth
• executive functioning
• learning new skills that others find easy, and slower development
• lack of comprehension
• hearing and vision
• remembering
• hyperactivity and disruption
• impulsivity
• lacking a sense of fear and danger
• understanding boundaries
• resistance to new situations
• vulnerability to ear infections

As this list shows, many of these features could be attributed to other illnesses or conditions. Or, indeed, they may go entirely unrecognised due to the child’s strengths, which can mask or compensate for their weaknesses and deficits.

Dr Carolyn Blackburn explains, ‘Children with FASD will not follow the general theories of learning or be able to generalise rules and principles learnt from one situation to another. They may dance the developmental ladder, often displaying strong verbal skills which can mask poor understanding of their environment and what is being asked of them. This is borne out of the fact that so many affected individuals present as “normal”, bright, friendly and articulate, which paradoxically masks the alcohol exposure.’

RESPONDING TO CHILDREN WITH FASD

It is possible to make generalisations about the sorts of things to do and not do with children who have FASD. For example:

• Use clear, concrete, simple language backed up with visual clues.
• Be consistent with language, rewards and routines.
• Be prepared to repeat instructions and rules.
• Implement and adhere to a routine.
• Provide structure and constant supervision.
• Employ adaptive teaching techniques that focus on the child’s strengths, interests and developmental stage.

All of these strategies, we could say, are appropriate for many children in the early years who have an array of difficulties, and are not exclusive to those with FASD. Some children will, however, present with a unique set of learning and care needs and behaviours that practitioners may feel at a loss to address.

Specific training in FASD is, therefore, crucial to help practitioners meet the children’s needs, as is making connections with organisations that can provide staff and families with knowledge, training and support. Where alcohol consumption is an ongoing problem, carers should also be encouraged to engage with local alcohol support services.

CONCLUSION

When a child presents with certain needs it is their right that the care and education they are offered should be informed and adapted to those needs. However, for this to happen for children with FASD, we need both to destigmatise the syndrome as one associated with irresponsible parenting and raise its profile as a unique area of special need. It is an interesting fact that the majority of children with FASD – 70-80 per cent – are either fostered or adopted, so not with their biological parents.

Dr Blackburn says, ‘We need to ensure that we don’t encourage a culture of blame for biological parents (especially mothers), raise awareness so that more support can be introduced, and get FASD on the policy radar so that it can be included in initial teacher training and other professional training.’

MORE INFORMATION

The National Organisation for Foetal Alcohol Syndrome (NOFAS-UK)promotes education for professionals and public awareness about the risks of alcohol consumption during pregnancy. Examples of its work include Teaching a student with FASD, an information booklet for parents and carers of children with a diagnosis of FASD, a poster advertising the organisation and a helpline. These can all be found at www.nofas-uk.org

Two other informative and reputable organisations are the European Birth Mothers Network(www.eurobmsn.org) and the FASD Network (www.fasdnetwork.org)

A mother’s blog is at www.theneighborhoodmoms.com/facing-fasd - see photo.