Expected to shine a light on hidden harm from alcohol use during pregnancy, Australia’s first national Fetal Alcohol Spectrum Disorder diagnostic tool has been developed by the Institute in partnership with the University of Sydney.
Commissioned by the Commonwealth Department of Health, the new Fetal Alcohol Spectrum Disorder (FASD) diagnostic tool will now be used and relied on by health professionals across the country.
The tool is the result of seven years of hard work – surveying clinicians, researchers, parents, carers and community and advocacy groups, conducting extensive literature reviews and analysing every FASD diagnostic tool in use around the globe.
It provides clear and straightforward comprehensive directions on how to test for and diagnose brain damage due to exposure to alcohol before birth – including when there are no obvious related physical abnormalities.
Lead researcher Professor Carol Bower, of the Institute’s Alcohol and Pregnancy & FASD Research team, says the new diagnostic instrument, guide and accompanying online training modules will provide the foundation to improve rates of diagnoses of FASD in Australia.
And by ensuring earlier and accurate diagnosis, it will enable earlier intervention and management, resulting in better tailoring of services, better outcomes and improved quality of life.
“Harmonised with Canada’s new FASD guideline, the Australian diagnostic instrument and guide will provide the evidence base for prevention, diagnosis, management and advocacy for improved services and supports,” she said.
“It will give clinicians the confidence to consider a diagnosis of FASD, the knowledge to make the diagnosis, and the information they need to manage or refer an individual and family and also to take steps to prevent FASD.”
Professor Bower said previous research had indicated that what had been picked up in Australia in recent years was barely the ‘tip of the iceberg’ of the damage done when alcohol crosses the placenta and harms the unborn child.
“I think because clinicians have not always been thinking about FASD as a potential diagnosis, cases have been missed,” she said.
“These are the kids who would have had quite serious problems from prenatal alcohol exposure and might have been diagnosed with intellectual disability, ADHD, autism or learning disabilities. Sometimes they were just thought to be really naughty kids.”
The new Australian diagnostic instrument and guide is now being disseminated to paediatricians, medical professional colleges, State and Commonwealth health departments, parent and carer support and advocacy groups and the Australian Medical Association.
At the request of consumers, included in the guide is a consent form and support information for before and after diagnosis. The diagnostic teams are encouraged to prepare a report that lists the individual’s strengths and difficulties and contains a management plan that builds on those strengths.
“Parents have told us that it was such a relief to finally get a FASD diagnosis because then they knew that it was not that he or she won’t do what they ask, it’s that he or she can’t,” she said. “And that can often reframe how a child is managed.”
What's next?
Evaluate the dissemination and effectiveness of the instrument and guide and use of the training modules. The Commonwealth Department of Health has just called for grants to provide FASD diagnostic services and models of care in Australia, utilising the Australian FASD diagnostic instrument.
Diagnosing FASD in Australia?
The new Australian FASD diagnostic instrument has adopted the concept that Fetal Alcohol Spectrum Disorder be used as a diagnostic term. For a diagnosis of FASD, an individual must have prenatal alcohol exposure and severe neurodevelopmental impairment in at least three of ten specified domains of central nervous system structure or function.
Damage from alcohol
- Fetal Alcohol Spectrum Disorder (FASD) is brain damage from an unborn child's exposure to alcohol during pregnancy. The disabilities are lifelong and may not be seen at birth.
- FASD results in delayed development, social, behavioural and learning problems. These can lead to poor school performance, unemployment, substance abuse, mental health problems and early engagement with the justice system.
- The placenta cannot keep harmful substances such as alcohol away from the fetus.
- The National Health and Medical Research Council of Australia advises that for women who are planning a pregnancy, pregnant or breastfeeding 'no alcohol is the safest choice'.