Talking about fetal alcohol spectrum disorder

Morgan Liotta

16/08/2018 1:55:13 PM

Early intervention can positively improve life outcomes of individuals with fetal alcohol spectrum disorder.

FASD can impact not only the individual, but their family, teachers, the justice system and society as a whole.
FASD can impact not only the individual, but their family, teachers, the justice system and society as a whole.

It is recommended that anyone who chooses to drink alcohol has no more than two standard drinks a day, and no level of alcohol is considered safe during pregnancy, as it can cause fetal alcohol spectrum disorder (FASD).
FASD is defined as
The lifelong physical and/or neurodevelopmental impairments that can result from fetal alcohol exposure, FASD is a condition that is an outcome of parents either not being aware of the dangers of alcohol use when pregnant or planning a pregnancy, or not being supported to stay healthy and strong during pregnancy.
The evidence demonstrates that FASD is present in Australia, in all places in which alcohol is consumed. FASD can impact not only the individual, but their family, teachers, the justice system and society as a whole.

So, what can be done to prevent and detect FASD, and best manage those affected?

newsGP spoke with two research experts about FASD and the impacts it has on families and society.

Bree Wagner is a senior research officer and PhD candidate with the Alcohol and Pregnancy and Fetal Alcohol Spectrum Disorders (AAP&FASD) research team at the Telethon Kids Institute, Perth. She has recently worked with people in the Fitzroy Valley region of north-west Western Australia in order to evaluate a classroom-based program to improve children’s self-regulation and executive functioning skills, with a focus on outcomes for children with FASD. The project has also involved employing and upskilling local Aboriginal women as community researchers.

Associate Professor Raewyn Mutch is a consultant paediatrician at Perth Children’s Hospital and Clinical Associate Professor at the School of Medicine, Dentistry and Health Sciences, University of Western Australia and part of the AAP&FASD research team at the Telethon Kids Institute. She has considerable experience working with FASD in the juvenile justice system and in Aboriginal and Torres Strait Islander communities.

Both agree the first step in prevention of FASD starts when planning a pregnancy and continues into early pregnancy, where screening for alcohol consumption is incorporated in routine health checks.

Bree-Wagner-Article.jpgBree Wagner says it is important to understand that problems with learning and behaviour for children with FASD are a result of brain injury, rather than them being “naughty”.

Associate Professor Mutch suggests useful starting points for safely asking about possible alcohol exposure in pregnancy.
‘The following questions are a safe way to enter into a dialogue about healthy choices when pregnant, without provoking fear or shame,’ she told newsGP.
‘Were your pregnancies planned? How many weeks were you when you knew you were pregnant? Once you knew you were pregnant, did you change your lifestyle in any way, such as start taking prenatal vitamins, taking up exercise, giving up smoking, drinking less alcohol?
‘The last question offers an opportunity to talk more broadly about healthy choices when a woman and her family are pregnant.’
Associate Professor Mutch emphasises the importance of maintaining a non-judgemental approach if a woman chooses to disclose any possible alcohol consumption during pregnancy.
‘Within these discussions, there is the space to specifically talk about avoiding alcohol, yet also the ability for the woman and her family to understand the attending clinician is interested in their holistic wellbeing,’ she said.
‘So removing the feelings of shame and stigma when talking about problematic behaviours, including alcohol consumption.’
Advice on healthy lifestyle measures is part of a normal antenatal care routine, but Associate Professor Mutch believes recognising red flags and diagnosis once the child is born can often be the tricky part.
‘FASD occurs when there is prenatal alcohol exposure and associated developmental difficulties. Developmental difficulties without a certain history of alcohol exposure can never be diagnosed as FASD,’ she said.
This is where the lines blur – recognising the signs early on in a child that has had exposure to alcohol in the womb – and why much research is currently being conducted in the area of FASD.
‘It is important to understand that [for children with FASD] problems with learning and behaviour are a result of brain injury, rather than kids just being “naughty”,’ Ms Wagner told newsGP.
‘Executive functioning and self-regulation impairments mean students with FASD could have difficulties inhibiting responses, using working memory, concentrating and paying attention, shifting between tasks, monitoring behaviour and learning, and planning and organising themselves.’
Ms Wagner cites some examples of adapting teaching environments that she has used in her work as a teacher in the Fitzroy Valley, including:
  • developing structured and predicable routines
  • creating safe and predictable environments that consider the impact of sensory input (ie auditory stimuli) on an individual
  • creating a safe and non-punitive ‘chill out’ zone where the individual can retreat if feeling overwhelmed or needing a calming space.
Associate Professor Mutch agrees, particularly when looking at the stark figures of children and young people in juvenile detention or prison. Australia has the highest known prevalence rate of FASD in a juvenile detention environment in the world.
‘Children and young people engaged in juvenile justice services have most often experienced early school failure and disengagement,’ Associate Professor Mutch said.
‘Their behaviour and learning troubles may receive disciplinary consequences rather than first being recognised as symptoms of developmental memory, learning or communication difficulties.’

Raewyn-Mutch-Article-(1).jpgAssociate Professor Raewyn Mutch believes it is helpful for healthcare professionals to maintain a non-judgemental approach if a woman chooses to disclose any alcohol consumption during pregnancy.
Associate Professor Mutch believes that rather than immediately dismissing any learning and/or behavioural issues in children, it is important to first conduct a comprehensive assessment.
‘Any child at risk of or engaged with juvenile justice should be afforded a holistic health assessment, which includes an assessment of their neurocognitive abilities, speech and language abilities, mood and affect, and physical and social wellbeing, including strengths and vulnerabilities in their wider circles of care,’ she said.
Associate Professor Mutch has also found that when a healthcare professional encounters FASD in juvenile justice services, it should prompt a referral of all siblings for a similar comprehensive health assessment, given the possibility of family trauma and/or social vulnerabilities.
‘Lived-trauma and intergenerational trauma is prevalent among justice-involved young people,’ she said.
‘This can be another reason they can’t be still, think, learn or remember, choose high-risk activities and may have mental health issues and substance misuse, all of which can lead to early engagement with justice services.
‘[Therefore,] screening for trauma and considering the possibility of intergenerational trauma is necessary for any child with a developmental impairment.’
Both Ms Wagner and Associate Professor Mutch emphasise the significance of early diagnosis of FASD in order to help support the individuals and their families.
‘For those children and youth who have previously unrecognised health and educational difficulties, if these complexities had been recognised and specifically addressed during their early years they may have avoided early and for some, any, engagement with juvenile justice,’ Associate Professor Mutch said.
‘The outcomes of assessments will permit trauma-informed care, culturally-informed therapy and healing, reduce recidivism and optimise future social inclusion.’
Ms Wagner agrees.

‘Environments can be adapted to better cater for the neurocognitive profile of students with FASD so they have every chance to reach their full potential,’ she said.
‘Individuals and their families could be involved and empowered as partners in goal-setting. Support from families, educators and healthcare professionals can also be important in an individual’s [with FASD] needs planning.’
FASD resources
There are a number of FASD resources available for healthcare professionals and families:

Aboriginal and Torres Strait Islander health FASD fetal alcohol spectrum disorder juvenile detention

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