By REBECCA ARMSTRONG, MAppPsy
Parent to Parent Researcher
FASD is an umbrella term for children or adults with a multitude of symptoms and confirmed maternal consumption of alcohol during pregnancy.
The reason the name has changed from fetal alcohol syndrome to FASD is due to the understanding that it is a spectrum, and symptoms vary significantly from mild to severe across all domains of presentation, including physical, cognitive, emotional, behavioural, abilities for learning, communication and social skills.
It is a lifelong, heterogeneous (diverse) neurodevelopmental disorder that affects all people differently. Effects known as a triad of impairment, include facial dysmorphia, stunted growth (pre and post birth) and central nervous system dysfunction.
FASD is a difficult syndrome to diagnose due to its overlap with a number of other developmental disorders, and the need for disclosure of alcohol consumption.
As a society we need to look at the stigma associated with FASD and increase our understanding and support for mothers. The messages regarding alcohol consumption in pregnancy are conflicting and we now know more regarding safe levels. The clear message now is no alcohol can be deemed safe during pregnancy.
Autism spectrum disorder alone (without an intellectual disability) was not recognised for funding until 2014.
Families with confirmed FASD get no government support as it is not recognised or funded, so the next big drive for awareness and strategy implementation is with FASD.
It is estimated that 1-5 Kiwi children out of every 100 will have FASD. That is approximately 46,000 with this diagnosis. An action plan has been developed through the Ministry of Health titled Taking Action on Fetal Alcohol Spectrum Disorder: 2016–2019: An action plan MOH. It aims to create a more effective, equitable and collaborative approach to FASD. It is a cross-agency commitment designed to build on work already under way by providing coordinated support to those on the frontline of this issues.
It is likely FASD is both underdiagnosed and misdiagnosed, however adequate diagnosis is often important for adequate treatment. The earlier the diagnosis the better the prognosis. Those diagnosed early preschool have a better chance because their education can be designed to maximise potential. Additionally, those with FASD are an at-risk population. Research shows an estimated 95% will suffer depression/anxiety, are much more likely to develop drug and alcohol addictions, get in trouble with the law, and have poor outcomes at school and work.
Traditional strategies often do not work with children with FASD due to difficulties connecting actions and consequences. The best strategy is often prevention.
Overall being patient and gentle with our vulnerable children is key to creating success. The more understanding we have of a child, including how FASD impacts on their lives and their individual strengths and weaknesses, the more we can create successes in their lives. The goal is to promote health and wellbeing in our vulnerable populations.