Initiatives in response to Fetal Alcohol Spectrum Disorder (FASD)

Alcohol consumption during pregnancy can cause irreversible damage to the foetus, resulting in conditions referred to as Fetal Alcohol Spectrum Disorder (FASD). FASD is a non-diagnostic catch all term for the range of disabilities that result from alcohol exposure during pregnancy. The conditions that fall within FASD include:

• Fetal alcohol syndrome (FAS): Individuals have facial anomalies, growth deficits and neuro-behavioural problems;
• Partial fetal alcohol syndrome (pFAS): Individuals have most but not all the features of FAS;
• Alcohol-related neurodevelopmental disorder (ARND): Individuals may present with many alcohol-related brain and behavioural abnormalities; but may not display facial anomalies; and
• Alcohol-related birth defects (ARBD): Individuals may exhibit congenital birth defects related to confirmed prenatal alcohol exposure, although there may not be any neurological abnormalities.

FASD is the leading preventable cause of non-genetic, intellectual disability in Australia. While there is no cure for FASD, early detection and intervention can assist individuals, their families and carers to develop coping strategies and mechanisms for everyday life.

In Australia, the incidence of FASD is largely unknown.  There is debate about diagnostic criteria and a lack of routine screening of women regarding alcohol use during pregnancy. Additionally women may not seek assistance and/or fully disclose levels of alcohol consumption during pregnancy due to stigma, fear of children being removed from their care and feelings of shame and guilt.  Furthermore, alcohol may be consumed during periods of yet unknown pregnancies.

In an Opinion piece on 11th October, 2017 Emeritus Professor John Boulton from The University of Newcastle noted the welcome news that the Local Drug Action Team (LDAT) ..has been successful in securing funding to Make FASD History provides much-needed opportunity for public education about the devastating effects of fetal alcohol spectrum disorder (FASD) in our community.

He also noted that it raises questions of the lack of public knowledge about the impacts of alcohol in pregnancy and the costs of the ensuing intellectual disabilities estimated to be in the order of several million dollars. He further states: … evidence for an epidemic of brain damage to unborn children was a key plank in the advocacy for alcohol restrictions that were implemented in 2007 in Fitzroy Crossing. The courage of the Aboriginal cultural leaders in their fight against the river of grog was the event that precipitated the federal government’s action for this problem, with Newcastle LDAT now a beneficiary. We should be inspired by the example of the brave women of Fitzroy Crossing who confronted the shame of the effects on their grandchildren of their relatives’ drinking in pregnancy.

He went on to say:  In the wider community, silence from shame and guilt are but part of the reason why FASD is so little recognised: previous reluctance of midwives to ask about alcohol abuse, and ignorance among young doctors as to the possibility of FASD being a cause of behavioural and developmental problems, have conspired with this silence.  He then questioned the absence of outrage of this entirely preventable condition.

Australis is viewed by many as slow to respond to the phenomena that is FASD. In Australia, FASD is not recognised as a disability and this precludes those with impaired mental functioning from receiving the help and support they require to manage their condition.  Many state that there’s no treatment for FASD and that even after diagnosis, parents are left to treat their child’s symptoms with a range of therapists and specialists. No support or financial payments from the government exist for those living with what is often described as an invisible disability.

Prenatal alcohol exposure can result in problems with behaviour, impulse control, memory, speech and language development, impairment of vision and hearing and difficulty with judgment and reasoning. These behaviours only become recognisable as a child grows. FASD can be often misdiagnosed as Attention Deficit Hyperactivity Disorder or autism.  People with FASD are more likely to experience mental health issues, alcohol and drug problems, trouble with the law and disrupted school experiences. They are also believed to be over-represented in the criminal justice system.

Dr Janet Hammill (AM) of Collaboration for Alcohol Related Developmental Disorders (CARDD), University of Queensland Centre for Clinical Research, notes the importance of education for women, especially young women who are unaware of the dangers of alcohol consumption, including early in pregnancies when they may not even know they are pregnant.  She estimates, based on whole of population studies similar to those used in the United States, 30-40 babies with FASD are born in Australia each day. This is seen as a conservative estimate.

She notes some excellent news to hand in relation to the Drug and Alcohol Prevention and Early Intervention Grant and expansion of FASD services in Queensland.  The grant team comprising Dr Dianne Shanley, Dr Doug Shelton, A/Professor Fran O’Callaghan, Professor Shirley Morrissey, Dr Natasha Reid, Professor  Karen Moritz, Dr Dana Newcombe, Dr Heidi Webster, Dr Erinn Hawkins, Dr Mark Patrick, Mel Riordan and  Professor Mary Katsikitis have been awarded $1 368 724 to undertake the following:

• To launch a service delivery model that integrates seamlessly with established community practices in three remote communities (Mt Isa, Mornington Island and Doomadgee), improving access to diagnostic services in high-risk locations.
• To empower remote health practitioners with varying levels of experience in the effective diagnosis and management of FASD. Trained professionals will travel to remote communities to increase local practitioner knowledge, skill and confidence in the assessment and management of FASD.
• To ensure sustainability of this new model of care. Evidence-based workforce development strategies (Project ECHO) will provide ongoing follow-up support to remote practitioners, and a funding model that supports sustainability beyond the end of the grant will be developed.

Dr Hammill enthuses that this will be a ground breaking initiative in training remote communities in what will now be essential and meaningful services for diagnosis and ongoing care.

To further assist those struggling with FASD, an up-coming training opportunity entitled Providing hope and education to carers of people with Fetal Alcohol Spectrum Disorder is being offered by the Russel Family Fetal Alcohol Disorders Association through the support of My Pathway.  Featuring Jeff Nobel, founder and CEO of FASDforever, delivering his world renowned training, this session will deliver practical strategies to:  increase understanding, decrease frustration, improve advocacy skills, strengthen support networks and create happier more balanced and confident FASD care givers. Jeff’s information can assist front line workers, educators and care givers of those living with FASD.

Date: Wednesday, 29th November

Time:  8.30am – 3.00pm

Venue: Learning Space Room 325, Level 3, Mayne Medical School Bu8ilding (881), The University of Queensland, 288 Herston Road, Herston

Register: To book email elizabeth@rffada.org

FASD resource hubs for parents/carers, schools & service providers:

National Organisation for Fetal Alcohol Syndrome (NOFASD) Australia – connecting researchers, clinicians and those with lived experience.

Queensland Fetal Alcohol Spectrum Disorders Support Group (QLD FASD) – a small collection of biological parents, kinship carers, foster carers and community members who are working with or raising children and young people who have been affected by alcohol in the womb.

Russell Family Fetal Alcohol Disorders Association (RFFADA) – a national not-for-profit health promotion charity dedicated to prevention and ensuring that individuals affected prenatally by alcohol have access to diagnostic services, support and multidisciplinary management planning.

Fetal Alcohol Syndrome Consultation, Education, and Training Services (FASCETS) – a non-profit organisation focussing different way of supporting individuals with Fetal Alcohol Spectrum Disorders and other brain-based disabilities, consistent with contemporary evidence-based research.