A Unique Child: Inclusion - A shift in thinking

Although the official Department of Health guidance about drinking alcohol during pregnancy is that 'pregnant women, or women trying for a baby, should avoid alcohol altogether', there still tends to be a general assumption that moderate drinking can't be too harmful. However, results from a new study suggest that even very moderate amounts of alcohol (less than one to six units a week) may affect a child's cognitive development and IQ.

Led by researchers from the University of Bristol and the University of Oxford, the study used data from more than 4,000 mothers and their children. The main author of the report, senior lecturer in genetic epidemiology at the University of Bristol Dr Sarah Lewis, reports that the 'results suggest that even at levels of alcohol consumption that are normally considered to be harmless, we can detect differences in childhood IQ, which are dependent on the ability of the foetus to clear this alcohol. This is evidence that even at these moderate levels, alcohol is influencing foetal brain development.'

These findings are not only a reminder of the dangers of alcohol to the unborn child, but raise questions about strategies when working with children damaged by alcohol. Can we really expect conventional approaches to learning and traditional behaviour strategies to 'work'?

BRAIN AND ORGAN DEVELOPMENT

The Drinkaware website (www.drinkaware.co.uk) explains how a baby is affected by the alcohol consumed during pregnancy. Like carbon monoxide from cigarettes, alcohol passes through the placenta and into the bloodstream of the foetus. Because the liver is not fully formed, it cannot metabolise the alcohol quickly enough.

According to the US Department of Health and Human Services, the 'blood alcohol level (BAC) of the foetus becomes equal to or greater than the blood alcohol level of the mother. Because the foetus cannot break down alcohol the way an adult can, its BAC remains high for a longer period of time.' This affects the levels of oxygen and nutrients the baby receives for brain and organ development.

We have become more aware of the effects of alcohol in pregnancy since the 1960s when Foetal Alcohol Syndrome (FAS) was first recognised. The syndrome is identified by distinct facial features, which include a small head, small and narrow eyes, and a smooth area between the lips and nose. This is a result of damage to the brain occurring in weeks six to nine when the facial features are being formed. Since then, we have become better informed of the possible wider reaching effects at all levels (see box).

The FASD Trust says practitioners and teachers may notice the following issues in children with Foetal Alcohol Spectrum Disorders (FASD):

• lapses in concentration and being easily distracted
• poor social skills, often leading to bullying by classmates, being led in to trouble or indeed appearing to be a bully themselves
• difficulties in following instructions and memorising information
• defiant behaviour, often arising from frustration
• having difficulties with abstract concepts such as money and time
• physical problems of dexterity and co-ordination

(see www.fasdtrust.co.uk).

These are common enough behaviours, sadly, and as such they often go undiagnosed as being related to FASD. Practitioners should always seek guidance and consult their Special Educational Needs Co-ordinator if they have concerns about a child. It is not for us as practitioners to make diagnoses, however, nor to lay 'blame' with parents for drinking during pregnancy. After all, the guidance in the past has been very confusing.

ALTERNATIVE FORMS OF RESPONSE

However, what the FASD Trust and other similar organisations across the world seek to do - apart from warn of the dangers - is to promote understanding of the way that 'insults' to the foetal brain, caused by alcohol and drugs, can potentially have an impact on a child's later development. And because they affect the way the brain subsequently works, we need to understand that conventional approaches to learning or 'remedial' teaching may not be successful.

According to Diane Malbin, author of Trying Differently Rather Than Harder, 'The shift is from seeing a child who "won't" do something to one who possibly "can't"'. And even if we can't be sure of an identifiable 'cause' of behaviours such as these, we can be more alert to the fact that these types of behaviours need alternative forms of response.

'We must realise that at the heart of all compliance issues is a competency issue. We have to move from seeing behaviour as non-compliance to seeing it as non-competence,' Jan Lutke writes in her article 'Spider Web Walking: hope for children with FAS through understanding'.

A child who is struggling with abstract concepts can't always 'try harder', so we need to recognise when they are 'trying differently' (Malbin 2002). This is particularly true of looked-after and adopted children, who may have FASD to contend with in addition to other trauma.

Charity Adoption UK includes reference to FASD on its website and refers parents to the NOFAS (National Organisation for Foetal Alcohol Syndrome) UK website where the booklet FASD: strategies not solutions is available to download. It includes the following sound advice under the header 'Things that don't work': 'Traditional behaviour management techniques and traditional reward systems including tokens, stickers, money and star charts do not work.

'For these approaches to be effective, the child must understand the concept of 'future earning' and have the impulse control to change their behaviour for the future. A child affected by FASD does not have this ability.'

This is just one example of the paradigm shift that has to take place if we are to begin to understand the implications of FASD. We hope it won't exist in future generations, but for now the more we accept and understand its existence the better we will become at recognising and appreciating the learning challenges faced by many of our children - and at developing more appropriate ways of responding to their needs and behaviours.

FASD: SYMPTOMS AND DIAGNOSES

FASD is the umbrella term for an alphabet soup of diagnoses that are all related to exposure to alcohol while in the womb.

The FASD Trust describes these as:

• FAS — Foetal Alcohol Syndrome
• PFAS — Partial Foetal Alcohol Syndrome
• ARND — Alcohol Related Neuro-developmental Disorder
• ARBD — Alcohol Related Birth Defects
• FAE — Foetal Alcohol Effects

Symptoms

The number of possible diagnoses is evidence of the range of birth defects and challenges potentially caused by prenatal exposure to alcohol.

Birth defects include:

• hearing and ear problems
• mouth, teeth and facial problems
• weak immune system
• epilepsy
• liver damage
• kidney and heart defects
• cerebral palsy and other muscular problems
• height and weight issues
• hormonal disorders

(see www.fasdtrust.co.uk/about.php)

Physical and mental challenges include:

• learning difficulties
• problems with language
• lack of appropriate social boundaries (such as over-friendliness with strangers)
• poor short-term memory
• inability to grasp instructions
• failure to learn from the consequences of their actions
• egocentricity
• mixing reality and fiction
• difficulty with group social interaction
• poor problem solving and planning
• hyperactivity and poor attention
• poor co-ordination.

(see www.drinkaware.co.uk)

Severity

We use the term 'spectrum' because each person with FASD may face some or all of these problems and at different levels of severity. The severity is dependent on:

• the levels of exposure
• the developmental stage at which it occurred, and
• whether the exposure was chronic (ongoing) or acute (binge drinking).

Although the most vulnerable time for alcohol exposure is in the first trimester, damage can occur at any time and pre-conception alcohol is also considered to have possible effects. (Ramsay, 2010).

Anne O'Connor is a director of Primed For Life Training Associates, www.primedforlife.co.uk

MORE INFORMATION

• Adoption UK on FASD, www.adoptionuk.org/resources/article/ living-foetal-alcohol-spectrum-disorders-fasd
• Drinkaware, www.drinkaware.co.uk
• 'Effect of prenatal alcohol exposure on childhood academic outcomes' by R Alati, G Davey Smith, SJ Lewis, K Sayal, ES Draper, J Golding, R Fraser and R Gray in PloS ONE, www.ncbi.nlm.nih.gov/pubmed/24130672
• FASAWARE UK, www.fasaware.co.uk
• FASD: strategies not solutions, http://nofasaa1.miniserver.com/(approx)martin/PDF/ Strategies_not_solutions.pdf
• FASD Trust, www.fasdtrust.co.uk
• 'Fetal alcohol exposure and IQ at age 8' by researchers at Bristol and Oxford universities, in PLoS One, http://dx.plos.org/10.1371/journal.pone.0049407
• Genetic and epigenetic insights into fetal alcohol spectrum disorders by M Ramsay in Genome Medicine
• Jan Lutke article, www.fasdconnections.ca/HTMLobj-1385/SpiderWebWalking.pdf
• NOFAS UK, www.NOFAS-UK.org
• Trying Differently Rather than Harder: fetal(sic) alcohol spectrum disorders by Diane Malbin (2002)
• 'Won't or Can't?' by Diane Malbin, www.come-over.to/FAS/cantwont.htm

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