What is FASD? Why is diagnosis important?
Fetal alcohol spectrum disorders refer to the range of conditions and difficulties which can result from exposing a foetus to alcohol in the womb. FASDs occur from alcohol passing through the blood into the placenta while a mother is pregnant.
Parents are often unaware of the dangers of consuming alcohol or don’t receive enough support to deal with substance use whilst pregnant. Unless apparent at birth with certain facial and growth factors, FASDs are often not detected until a child reaches school age, where behavioural and learning difficulties become more pronounced.
There is no “growing out of” or “cure,” FASDs are lifelong impairments from the pathological process of alcohol on the brain. But it doesn’t mean individuals can’t manage the challenges associated with the diagnosis.
According to NOFASD’s report, more children are affected each year by FASD than autism, spina bifida, cerebral palsy, down syndrome and sudden infant death syndrome combined.
Whilst discussing the dangers of consuming alcohol while pregnant, it’s important to do so without persecuting mothers as perpetrators. There are many reasons someone may drink alcohol during pregnancy. They may be psychosocial stressors, partner influence, dealing with substance use, misinformation or have been told by their doctor or midwife that it’s ok. By hosting open, nonjudgemental conversations around FASD, more mothers may disclose drinking alcohol while pregnant, seek a diagnosis and engage in support services.
What can alcohol actually do to a foetus?
Alcohol is a teratogen, a substance that can cause abnormalities or birth defects in a developing baby. Teratogens include some medications, recreational drugs, chemicals, tobacco, some infections or uncontrolled health problems - like chicken pox - and alcohol.
To a fetus, absorbing alcohol can cause cell death, reduced cell growth, cell migration errors (where certain cells supposed to develop in one brain area pop up in other parts of the brain) and interference with neurotransmitters of nerve growth factors. As a result, these children are more susceptible to emotional dysregulation, problems with depression, anxiety and sleep disruption.
What are the signs of FASD?
FASDs refers to the range of foetal alcohol spectrum disorders, including FAS (foetal alcohol syndrome - the most involved end of the spectrum) to ARND (alcohol-related neurodevelopmental disorder), ARBD (alcohol-related congenital disabilities) and ND-PAE (neurobehavioral disorder associated with prenatal alcohol exposure).
Among the range of FASDs, each person experiences symptoms on a spectrum (due to a range of varying amount, frequency and timing of alcohol consumed) and why one person’s challenges with FASD can be different to the next.
FASDs affect a person’s physical, behavioural, health, social and learning outlook. It can affect the ability to think, learn, manage behaviour and emotions, cause and effect reasoning, impulsivity, receptive language and adaptive functioning difficulties.
An adolescent with FASD contributing to a Canadian study Feeling different: The experience of living with Fetal Alcohol Spectrum Disorder;
‘It (the awareness of FASD) explained a lot of things. Before I heard (about the diagnosis)... It (the diagnosis) helped to explain how I handled things (emotional reaction to situations and her relationships) and possibly affects my temper.’
FASDs symptoms can include:
Physical; different size/shaped facial features, musculoskeletal abnormalities, low body weight, heart, kidney or bone issues, vision or hearing problems. Sleep or suckling problems as a baby and impacted motor skills.
Thinking; difficulty with concentration, attention, memory or problem-solving. Intermittent anxiety, speech and language delays, and learning difficulties.
Behaviour; hyperactivity, emotional regulation, stubbornness, social withdrawal, ability to make friends, difficulty with judgement and impulse control.
Developmental; intellectual disability, speech or language delays.
Are there mental health impacts?
Due to cognitive, brain processing and executive functioning difficulties associated with FASDs, mental health concerns are the most common “secondary disability” with FASDs, such as ADHD, anxiety, depression and alcohol and drug dependence.
Research out of Canada found suicide was the leading cause of death among a group of individuals with FASD, and this North American study reports higher suicidality rates among the population, with 29.2% of males with FASD reported a serious suicide attempt, a rate 19.5 times higher than national rates for males without FASD.
The more severe the symptoms associated with FASD doesn’t necessarily correlate to increased mental health concerns. Dr Susan Stoner, a research associate professor at the University of Washington’s Alcohol & Drug Abuse Institute, said in this article;
‘We found those with less severe FASD tend to have worse mental health than those with more severe FASD, which might be because those with more severe FASD are more likely to have a diagnosis and more likely to get support.’
Importance of diagnosis
Someone may be against a FASD diagnosis, believing it will stigmatise the child, adult or family on top of challenges they are already facing. Whilst there are misconceptions and unfair stereotypes associated with FASD, a diagnosis opens the door of support for an individual and their family, as well as aids their understanding of self.
The individual understanding and acceptance that can come from a diagnosis is highlighted in this presentation by Dr Carmela Pestell on FASD myths - a really worthwhile video on the topic. It includes a quote from a 15-year-old boy part of the FASD Prevalence Protection Project at Banksia Hill on receiving a FASD diagnosis:
’Oh, thank God. That means I’m not the problem, I have a problem. I can deal with that.’
Some behaviours associated with FASD may look intentionally willful or oppositional behaviour when there are underlying neurodevelopmental explanations. A diagnosis means clinicians and support services are able to adopt a “FASD lens” to develop strategies and supports based on the individual’s needs.
The National Disability Insurance Agency recognises FASDs under “congenital conditions” due to the significant difference FASD can have on an individual’s functional Capacity. The NDIS can provide funding for supports to assist an individual with FASD’s communication, mobility, self-care or self management.
A FASD diagnosis is required to access the NDIS. Our Functional Capacity Assessments outline to the NDIA how the individual’s experience of FASD impacts their daily life, both in the home and community. If you are in need of a Functional Capacity Assessment for an individual with FASD for access, a plan review or change of situation, contact us for availability of our social worker conducted Functional Capacity Assessments.
Ruby Wheeler