The extent of FASD in Western Australia

Western Australia, like Australia as a whole, does not currently have a screening system or diagnostic tool to identify those at risk of FASD or those already living with the condition. This has impacted attempts to determine the prevalence (how common) of FASD. Numerous population-based studies have been conducted in order to estimate the prevalence of FASD in WA however it is expected that these figures under-represent true numbers.

The largest population-based study to date was conducted by the Telethon Kids Institute and the Western Australian Register of Developmental Abnormalities (WARDA) and looked at the prevalence of FASD in children born in WA from 1980 to 2010. The birth prevalence was calculated as cases of FASD per 1000 births by year of birth. The overall birth prevalence was 0.26 per 1000 births, with 85% of cases being Aboriginal. In addition, many WA FASD cases are 2nd/3rd generations with children having affected parents or grandparents. This highlights the need to educate and inform the public about the dangers of maternal drinking during pregnancy in order to prevent FASD and manage the condition in those affected.

The Liliwan Project
Anecdotal evidence suggests that drinking maternal during pregnancy and FASD prevalence is higher than average in remote Australian Indigenous communities. In 2007, concerned about the welfare of their communities following a wave of alcohol-related deaths, community leaders in the Fitzroy Valley region including June Oscar and others campaigned for alcohol restrictions. Following this, in 2009 they initiated a partnership between Nindilingarri Cultural Health Services, Marninwarntikura Woman’s Resource Centre, The George Institute for Global Health and the Discipline of Paediatrics and Child Health at The University of Sydney Medical School to conduct the landmark 'Liliwan Project' to tackle the issue of FASD.

'Liliwan' means 'all the little ones' and is part of a larger strategy known as 'Marulu' meaning 'precious, worth nurturing' and aims to prevent FASD, diagnose FASD and support affected families with a goal to heal Indigenous communities and create a brighter future for their children.
The results of the Liliwan Project's prevalence study showed that of the 108 babies born between 2002-2003, 13 had FASD. This relates to 120 cases per 1000 births, or 1 in 8 children affected by FASD – the highest reported prevalence in Australia. In addition, 55% of mothers interviewed had drank high levels of alcohol during pregnancy and most were unaware that this could harm the developing fetus. Following this, the collaborative team is now working to educate communities about the risks of drinking during pregnancy and management of the challenges faced by children affected by FASD and their families.


Without a diagnostic tool it is difficult to determine the true prevalence of FASD in WA or in Australia as a whole. Population-based studies are useful for determining prevalence in certain communities but cannot be easily applied nationwide and it is likely that FASD figures are under-reported. 

How do you tackle a child with FASD?

Dealing with a child affected by foetal alcohol spectrum disorder (FASD) can have it's challenges and the effectiveness of any strategies you decide to try will depend on the individual. Never give up on your child, if a strategy isn't working, try something else.

Here are some overall suggestions:

Understand the affects of FASD and adjust your expectations
Understand and remember that the basis for most of the challenging behaviour is caused by brain damage and neurological dysfunction. Even actions that may appear as deliberate or manipulative are often beyond the control of the child. Your child may not always consistently function at a level concordant with their age, and may not do as well at school, act up in social situations or not fully understand the consequences of their actions. This isn't to say that bad behaviour should go without consequences, but you should bear in mind that the child may struggle to learn from their mistakes and repeat the behaviour. Adjust your expectations accordingly, by showing more understanding and support you can encourage healthy and respectful behaviour.

Dealing with bad behaviour
Consequences (as well as rewards) need to be immediate, predictable and unchanging – no 'just this once...' breaks in routine. Rules need to be simple, as do consequences, for example 'you hit = you sit'. An immediate and easily recognisable indicator of behaviour would be giving the child a thumbs up for good behaviour and a thumbs down for bad behaviour.

It is also a good idea to ensure the child has a safe place where they can vent their anger in a physical manner without getting penalised for it. Somewhere where they can't hurt themselves (or others) and a physical activity such as a punchbag or kicking a ball is ideal.

Likewise, in the midst of a tantrum the child may not understand how to stop it and calm down. Use specific instructions such as 'open your eyes' and 'close your mouth' and set up a 'comfort corner' that is safe, comforting and quiet and is used to help them calm down, not as a punishment.

Environment
Instead of trying to change the child, change the child's environment. Children with FASD can become easily overwhelmed and distracted so consider less stimulating environments. In the home, minimize chaotic physical surroundings and think 'less is more'. Visual cues are very helpful for children affected by FASD and increase understanding and assist with memory. Labels, particularly line drawings and better yet drawn by the child themselves, help the child understand what things are for, how to use them and where things go. For example, store things by type, such as all shoes together, all toy cars together, all DVDs together etc and use visual labels so the child can work out where to put things. This can also be used for helping them remember which is the hot and cold tap, which way to turn the door knob, how full to fill the bath etc.
When out and about try and choose less stimulating environments, or if you must go try and do it at a less busy time.

Communication
You need to adapt both what you say and your body language when communicating with a child with FASD. Eye contact is very important as are visual cues. For example, combine 'I don't know' with a big shoulder shrug to help them understand, or use a big cheesy grin when you are happy.
Always try and state what the should do, not what they shouldn't do. Keep instructions clear and to the point, and be specific – instead of 'clean your room' try 'put the clothes in the wash basket' and 'put the toy cars in the car box'. Breaking tasks down into smaller steps helps with understanding and memory.
Try and describe things in a visual way to help them picture it – instead of 'you are interrupting me' say 'your words are bumping into my words'.

Promote positivity and play
A healthy lifestyle including a good diet, regular exercise and fun is beneficial to everyone. Encourage enjoyable activities and play such as art or sports, just always ensure that they are supervised. Playing a team sport may help them in learning how to work with others, make new friends and have fun whilst also being able to displace their excess energy. Focus on the positive, laugh and smile lots, encourage them and reward good behaviour – emotional rewards such as hugs or high fives go a long way.

Routine
Structure, routine and consistency are key when managing a child with FASD. Create good routines for mealtimes and bedtimes and stick to them – no exceptions. Your child may not understand or respond to their body's cues for when they are tired or hungry. Routines anchors activities in time and allows them to predict what comes next.

Have a good support team
Every individual with FASD reacts differently and some techniques may work better than others. Try to ensure the people who your child interacts with understand the nature and challenges of FASD and adapt their behaviour accordingly. Teachers should know your reward and consequence system and stick with it – your child won't necessarily respond to the same punishments as other children. Your healthcare professionals such as your doctor need to understand FASD and the specific challenges it brings. You know your child better than anyone so it is your responsibility to find out what works and make sure it is implemented in all aspects of their life.

Diagnosing FASD

Australia as a whole, including Western Australia, does not currently have a screening system of a diagnostic tool to identify those at risk of foetal alcohol spectrum disorders (FASD), or those already living with the condition. This has impacted attempts to determine prevalence of FASD.

What's more, in regards to the more easily diagnosable and more physiologically recognised foetal alcohol syndrome (FAS), studies on Western Australia show that only 12-16% of healthcare professionals knew the four diagnostic features of FAS. As FASD is less identifiable than FAS it is likely that there is an even greater impact of under-reporting for this condition.

Prevention by screening
One way to reduce the number of cases of FASD would be to utilise screening to identify and refer populations of women of child-bearing age who are planning on getting pregnant, or who are already pregnant, that are also at risk of an alcohol use disorder.
However, a report on FASD found that less than 50% of healthcare professionals routinely ask about alcohol use during pregnancy. This finding prompted a recommendation to the Ministry of Health that women should be screened at each antenatal appointment and that women at risk of heavy alcohol use should receive intervention counselling.

Barriers to diagnosis
The under-reporting of FASD may be due to a difficulty making the diagnosis, a lack of awareness and recognition, a lack of availability of specialists in certain areas and a difficulty to confirm maternal alcohol use during pregnancy. In addition, early diagnosis of FASD can be difficult as evidence of brain damage often isn't evident until the child reaches school age, when learning and behavioural difficulties are more noticeable. This also means that misdiagnosis is common where children may instead be diagnosed with attention deficit hyperactivity disorder ADHD or mild autism.

Evidence suggests that some paediatricians may not being prepared to deal with a diagnosis or may be reluctant due to the associated stigmatisation. In line with this, Michelle Bishop, a Inclusive Education Consultant with the Association of Independent Schools of WA (AISWA), advised that there has historically been a difficulty in getting paediatricians to diagnose FAS/FASD on paper, and attributed this to a lack of clarity around the diagnostic factors

Benefits of early diagnosis of FASD
Being undiagnosed often causes misunderstandings and confusion for both the individual concerned and their friends, family and community. Much needed resources, support and assistance to help those affected manage the condition is missed out on and this can lead to the development of secondary behaviours and the stereotypical labelling of that individual. In addition, the consequences of FASD increase with adulthood as there is less social tolerance for the behaviour.

Early diagnosis of FASD could have many benefits including:

• Enabling access to interventions and resources that may mitigate the development of secondary problems such as mental health problems, interrupted school experience, unemployment, trouble with the law etc.
• Appropriate intervention, counselling and treatment for the mother may prevent the subsequent children being affected by FASD.
• Prompting caregivers to seek diagnosis and support for other previously undiagnosed siblings.

Approach to diagnosis
The Australian FASD Collaboration has developed a diagnostic tool for FASD and funding has been allocated by the government for an action plan to finalise the tool and develop clinical guidelines for use. Following this it will need to be trialled by healthcare professionals. However, in order for diagnosis to be successful a multidisciplinary approach is required. The Department of Health advised that: ‘Developmental delays or disorders can manifest as a single issue or as a cluster of issues requiring multidisciplinary services’. Such an approach would require a combination of inputs from paediatricians, GPs, nurses, social workers, psychologists, speech and language therapists, child care assistants... the list goes on.

How do you recognise FASD?

Drinking alcohol during pregnancy can severely harm a developing foetus and result in Foetal Alcohol Spectrum Disorders (FASD). Alcohol can pass across the placenta and interfere with the normal development of the fetus, affecting cells including brain cells leading to cognitive impairment. The consequences of FASD are lifelong, however the condition itself is 100% preventable by not drinking any alcohol during pregnancy.

FASD may present itself as physical abnormalities, neurological problems with a child’s brain and central nervous system, or manifested in social and behavioural issues and can range from mild to severe depending on the individual. FASD is often called the 'invisible disability' as symptoms of FASD are seldom apparent at birth, and it is often not until school age that learning difficulties and problems with social behaviours arise.

Noticing and observing these common symptoms may help you recognise and identify FASD and get your child a diagnosis and medical treatment.

Physical Symptoms

• Facial features – wide-set eyes; narrow or small eyes; flat mid face; very thin upper lip; a short, upturned nose; a smooth philtrum (narrow groove between the nose and upper lip).
• Deformed joints and limbs.
• Slow growth patterns.
• Shorter than average height.
• Vision and hearing issues.
• Small head size.
• Structurally abnormal or underdeveloped brain.
• Problems with major organs such as heart defects and issues with kidneys.

Brain and Nervous System

• Poor memory.
• Hyperactivity.
• Poor coordination and balance.
• Intellectual disabilities or learning disorders .
• Trouble with paying attention, or hyperactivity.
• Trouble processing information.
• Poor judgement and reasoning skills.
• Difficulty relating actions to consequences.
• Rapidly changing moods or anxiety.
• Speech or language problems.

Social and Behavioural Issues

• Poor social skills including getting along with others .
• Difficulty in school, particularly in math.
• Problems staying on task or working towards a goal.
• Problems adapting to change.
• Problems with impulse control.
• A poor concept of time.
• Increased risk taking.

These common symptoms may indicate FASD however they also resemble those of other diseases and conditions. If you suspect your child or another might have FAS, it’s important to see a doctor and/ or get a second medical opinion

What is FASD?

Foetal alcohol spectrum disorders (FASD) are a group of conditions that can occur in a person whose mother drank alcohol during her pregnancy. FASD is more common in indigenous communities but can affect anyone who was exposed to alcohol as a fetus.

Alcohol is a teratogen – it is able to pass from the mothers bloodstream, cross the placenta, and enter the baby's bloodstream. Alcohol lasts longer in the baby's bloodstream because a baby's liver metabolises (breaks down) alcohol very slowly. This means the alcohol can interfere with the normal development of the fetus and affect cells including brain cells leading to cognitive impairment..

The characteristic effects of FASD include physical, developmental and neurobehavioural abnormalities. FASD conditions can range from mild to severe depending on the individual. The most severe form of FASD is fetal alcohol syndrome (FAS) which includes facial feature abnormalities as well as the neurobehavioural symptoms.

A person with FASD may have:

• Abnormal facial features such as a smooth philtrum (flattened narrow groove between nose and upper lip), a flat mid face, a short nose, or a short chin
• Small head size
• Shorter than average height
• Learning difficulties
• Hyperactive behaviour
• Difficulty paying attention
• Poor memory
• Learning difficulties
• A low IQ or intellectual disability
• Speech or language problems
• Problems at school, particularly with math
• Difficulty relating actions to consequences
• Poor judgement and reasoning
• Problems with major organs such as the heart or kidneys

FASD is often called the 'invisible disability'. Symptoms of FASD are seldom apparent at birth, excluding the facial feature abnormalities that present with FAS. Therefore, it is often not until school age that learning difficulties and problems with social behaviours begin to be noticed. Even then, the problems are often overlooked, ignored, attributed to other conditions or blamed on poor parenting or environment. Paradoxically, the misunderstanding of the unrecognised brain impairment and the associated primary symptoms often leads to the development of secondary behaviours and the stereotypical labelling of that individual.

Not having a diagnosis often causes misunderstandings and confusion and mean that the person misses out on much needed assistance to help them manage their condition. In addition, the consequences of FASD increase with adulthood as there is less social tolerance for the behaviour.

There is no cure for FASD and its effects last a lifetime, however it is preventable. Any amount of alcohol during pregnancy can harm the growing baby. What symptoms occur and how severe they are depend on how much alcohol the mother drank, how often they drank, and at what stage of the pregnancy alcohol was consumed. Other factors such as the age and health of the mother (e.g. if she also smokes) and environmental factors (e.g. stress due to poverty or abuse) can also add to the amount of harm to the developing baby.

The safest course of action is always to avoid drinking any alcohol whilst you are pregnant, as well as if you are trying to get pregnant or when you are breastfeeding.

There are lots of different ways you can stay away from alcohol, and lots of different people who can help when you are struggling, including family, friends, healthcare professionals and support groups. 

What can mothers do to keep away from alcohol during pregnancy?

It can be difficult to change your habits, and if you are used to drinking alcohol it may be challenging to stay away from it once you are pregnant. But you're now responsible for the health and safety of two people, not just yourself, and the only way to remain safe from the risk of your child having FASD is to not touch alcohol at all.

So what can you do instead to distract you from the urge to drink? Below are a few ideas to get you started:

Get creative!

Why don't you start decorating your baby' new room? If you're feeling really creative you could paint a mural design or alternatively create some artwork you think your baby might like and keep it near their crib or hang it on the wall. If painting isn't for you why not take up a new hobby like knitting and get to work making all sorts of new clothes and toys for your little one to enjoy when they arrive?

Go green fingered

Gardening is something you can keep up all year round here in Australia and keeps you healthy. Get outside and plant some flowers, pull up the weeds and mow the lawn and be rewarded with a beautiful backyard. Haven't got a garden of your own? Why not get some pots that you can plant up for in the house? You could even create your own herb garden to use in cooking.

Get some exercise

Playing a sport is a great way to have fun, make friends and get some exercise all at the same time. Go for a walk, whether it's just into town or out in the countryside, there's nothing like a bit of fresh air to clear the mind and it's a great free way to exercise and keep both your body and mind healthy. As well as health benefits exercise also produces endorphins which make you happy! If you aren't up for something quite so active, instead go swimming or do some stretching – your pregnant body will thank you for it!

Create something new in the kitchen

You might crave all kinds of foods whilst you're pregnant so now is the perfect time to try out some new recipes! Always wanted to go a bit more vegetarian or to cook more fish? Why not experiment in the kitchen, it's always fun and rewarding to come up with new dishes to share with friends and family

Start a memory book

Start a book full of photos, advice and life lessons that you want to share with your baby. You can add to it as the baby comes and they can keep it forever and add to it themselves before passing it on to their own children.

Do something for you

Love reading but never have the time? Used to sketch but haven't for years now? Always wanted to write a novel? Why not do something for yourself for a change and do that 'thing' that you've always wanted to do or get back in to an old hobby. Soon enough there will be another person requiring your attention so take the time now to do something for you.

These are just examples but whatever it is that you decide to do you'll not only have great fun but you'll also be keeping your child safe from the effects of FASD so nothing could be more worthwhile.