FASD and Neurodevelopmental Conditions
Fetal alcohol spectrum disorder (FASD) ‘is a diagnostic term used to describe the severe neurodevelopmental impairments … that may result from brain damage caused by alcohol exposure before birth’.
What is fetal alcohol spectrum disorder (FASD)?, FASD Hub Australia, 2023
FASD and Neurodevelopmental impairment
Professor Elizabeth Elliott AO
Distinguished Professor in Paediatrics and Child Health at the University of Sydney
Video length: 1m 27s
This damage occurs because alcohol readily crosses the placenta, from the mother to the fetus and can disrupt the growth and development of the brain and other organs in the unborn child. This can lead to children with FASD experiencing lifelong difficulties with learning and behaviour, communication, motor skills, paying attention, and impulse control that would otherwise help them learn and achieve at expected norms.
Some children with FASD have birth defects and growth failure. Others have additional diagnoses such as ADHD and ASD.
The personal costs to families with FASD and neurodiverse condition are enormous, posing many challenges to young children as they grow throughout their life and their families.
The National Health and Medical Research Council of Australia advises that there is no known safe amount of alcohol or safe time to drink alcohol during pregnancy.
Women who are pregnant or planning a pregnancy are therefore advised to avoid alcohol altogether. In the wider community, however, there is limited knowledge about alcohol-related harms, especially the damage it can cause to the unborn child. Many pregnant women, their partners and their social networks believe that ‘a little bit won’t hurt’ and this can pressure women to drink alcohol under the misconception ‘a little won’t harm’ which is contrary to the evidence.
We can all play a part in sensitively building community knowledge about alcohol-related harms in a manner that empowers women and their partners to take action to avoid alcohol rather than stigmatise or judge women.
Women who use excessive amounts of alcohol or are alcohol-dependent will require specialist assistance to safely stop alcohol use.
The Australian guide to the diagnosis of fetal alcohol spectrum disorder (FASD) was developed to support and standardise a multidisciplinary team approach to the diagnosis, referral and management of FASD.
A therapeutic approach that is sensitive to both FASD and early life trauma is needed.
In Australia, there is limited awareness and knowledge of FASD among some health professionals and limited access to the specialist multi-disciplinary teams that are required for a diagnosis.
Supporting self regulation
Professor Elizabeth Elliott AO
Distinguished Professor in Paediatrics and Child Health at the University of Sydney
Video length
Important facts about FASD
FASD occurs anywhere in the world where alcohol is consumed and is thought to be the most common cause of intellectual disability and birth defects in the Western world.
Worldwide, rates of FASD in the general population are estimated at 1–5%, although it is important to acknowledge that it is under-recognised and often goes undiagnosed.
Because most people with FASD appear physically normal despite having significant neurodevelopmental problems, it is often referred to as a ‘hidden harm’.
The FASD prevalence rate for the general Australian population has been estimated at 3.6%. Therefore, as many as 10,000 babies could be born with FASD each year in Australia. This exceeds the prevalence of other disorders such as autism spectrum disorder, Trisomy 21 (Down syndrome), spina bifida and cerebral palsy.
FASD prevalence is likely to be higher in several identifiable groups, those in out-of-home care, mental health facilities, juvenile justice systems, and some disadvantaged and vulnerable populations.
The population-based Lililwan study in the Fitzroy Valley, Western Australia in 2010–12 identified that 1 in 5 children had FASD. A study in a juvenile detention centre in Western Australia identified that more than 1 in 3 children had FASD and nearly 90% had at least one severe neurodevelopmental impairment.
According to Stratton, Howe and Battaglia, ‘of all the substances of abuse (including cocaine, heroin and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus’. In addition, FASD, adverse childhood experiences and early life trauma frequently co-occur, outcomes of each compounding the other.
Variations of developmental age
There is a wide variation of developmental age and ability among children and young people with FASD. Personalising interaction approaches is the best way to meet the needs of young people with FASD.
When strategies are put in place to support individual children and young people with FASD, often all family members benefit from the adjustments.
Eight keys to working effectively with children and young people with FASD
Strategies used should address cognitive, communication and emotional development domains, as children and young people with FASD need ongoing support in one or more of these domains.
Explore 8 strategies below that can help interactions with health professionals as well as educators and families.
Eight principles for working effectively with people with FASD
Select each + sign to explore each principle and related strategiesChildren with FASD and their parents/carers do well when health professionals talk in concrete terms, especially to children and young people learning Standard Australian English as an additional language.
Refrain from using words with double meanings or idioms, e.g. ‘Pop outside’. The social-emotional understanding of children with FASD is often below their chronological age; therefore it helps to ‘think younger’ when providing assistance, giving instructions, etc. It is also important to be empathetic and not to make deficit judgements.
Children and adults with FASD have difficulty generalising from one situation to another. Therefore, it is best to create an environment and processes that are consistent. This includes consistency of language, procedures and routines, creating a felt sense of safety.
Children and adults with FASD often have chronic, short-term memory problems. They forget things they remembered yesterday, as well as information that has been discussed. This can be frustrating for all involved, but sensitivity and positive reinforcement will create the best interactions.
Printing out support materials for children and families removes the reliance on memory and enables reading and re-reading at a later time.
Stable routines and consistent visual cues make it easier for children with FASD to know what to expect next, and decrease their anxiety, enabling them to interact more posively with Health professionals.
Remember to keep input short and sweet. People with FASD are easily over-stimulated, leading to ‘shutdown’ when there's an overload of sensory input, at which point they can take in no more information. When people have a lived experience of trauma, this tendency towards ‘shutdown’ is exacerbated. Break down tasks, and always communicate the task clearly, including strengths where possible.
Say exactly what you mean in a clear and concise way, don't use medicalised language. Remember that people with FASD have difficulty with abstractions, generalisations and ‘filling in the blanks’ when given information or instructions. Tell them step-by-step what to do and where possible, provide information in written form. Keep instructions concise and broken into clear steps.
Structure is the ‘glue’ that enables a person with FASD to make sense of the world. If this glue is taken away, things fall apart. With these supports in place, a person with FASD can experience success and follow instructions, a vital element in developing self-worth, self-confidence and self-care.
Due to their cognitive challenges, people with FASD bring a naivety to daily life situations. They need constant supervision and guidance, to help them develop habitual patterns of appropriate behaviours, and ensure their safety and wellbeing at all times.