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.
- Information processing and memory. The brain struggles with input, integration and output of information, making learning slow and difficult. Working memory is the ability to hold information in our brain, include new information and integrate them to produce an output. It is necessary for learning.
- Abstract reasoning. Understanding abstract concepts or inferred information. Require explicit information.
- Cause and effect relationships. Connecting behaviours and actions with consequences. Can result in impulsive, risky behaviour.
- Generalisation. What is learned or understood in one environment does not mean it will transfer to another environment.
- Time. Understanding time, the concept of time and applying it to daily life.
- Social problems. Understanding social rules, emotional or behavioural immaturity.
- Emotional regulation. Low frustration tolerance and inability to regulate emotions, often resulting in outbursts.
- Adaptive functioning. Independent living skills often delayed or not developed, e.g, ability to dress, ride bikes, cook, and other daily living skills.
Traditional strategies often do not work with children with FASD due to difficulties connecting actions and consequences. The best strategy is often prevention.
- Keep the environment as organised as possible and eliminate clutter to reduce sensory input.
- Limit stimulation.
- Be prepared to use repetition; expect to re-teach.
- Use concrete language and be as specific as possible – say exactly what you mean and remember they are unable to fill in the blanks.
- Provide external memory tools and use visuals.
- Speak slowly and use fewer words.
- Maintain stable and consistent routines.
- Provide extra supervision; be vigilant as they may not understand consequences of behaviour.
- Try to teach social skills and socially appropriate behaviour.
- Reassess poor behaviour as an unmet need, and try to figure out what needs to be done.
- Teach skills deficits.
- Be consistent.
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.