Red shoes are a symbol of FASD awareness
September 8th, 2023
International Fetal Alcohol Spectrum Disorder Day is this month - a fitting occasion to bring attention to one of Canada’s most ignored tragedies
What is more tragic than the suffering caused by a fully preventable condition?
A country failing to prevent and treat it.
Yet that describes Fetal Alcohol Spectrum Disorder (FASD) in Canada.
Estimates about the number of women who drink while pregnant vary, from 1 in 10 all the way to 1 in 3.
While the impact of alcohol on a developing fetus depends on multiple factors, there is no known safe amount while pregnant, and the effects of even one drink are too grave to ignore.
Persons with FASD experience far more extensive health problems than the general population - including heart defects, kidney abnormalities, and weakened immune functioning - leading to longer, more costly, and more frequent hospital visits.
They face cognitive and behavioural challenges, and ninety percent also struggle with their mental health, with rates of depression, anxiety, and suicide several times higher among people with FASD than the general population.
This mix of factors creates major obstacles in education, employment, and daily functioning, contributing to greater involvement in the criminal justice system and a perception of being dangerous troublemakers.
These barriers quickly compound and exert a fatal impact: the average life expectancy for someone with FASD is a disturbingly low 34-years-old.
Not only do people with FASD pay in pain, stress, and ultimately their lives, their friends and family suffer, and the public pays too. The annual socioeconomic cost of FASD in Canada is nearly $2 billion, and already overburdened public systems are strained further under the pressure.
Despite the costs and preventability of FASD, it is strikingly neglected by government and medical professionals.
Fewer than half of family physicians discuss the risks of alcohol use, drug use, or smoking during pregnancy with women of childbearing age. And messaging about how much alcohol is dangerous is often conflicting, leading to misconceptions among pregnant women.
Meanwhile, funding and supports for FASD are sorely lacking, lagging behind those received by persons with other complex needs, to the point where many people with FASD are never connected to services and not given the chance to live happy, fulfilling lives.
How do we turn the tables on our FASD problem?
The answer is multi-layered, but prevention is paramount.
Improving awareness about the detrimental consequences of alcohol, as well as protective factors, can reduce the risk of birth defects and complications. This in turn reduces the costs of supporting affected children and their families throughout the lifespan.
Health care professionals must also be leaders in FASD prevention, and those working with pregnant women should consistently and proactively speak with them and their partners about alcohol use, making it clear that there is no safe level during pregnancy.
But just focusing on prevention is insufficient - especially when vulnerability to FASD is greatest early on, when mothers may not be aware they are pregnant.
Increasing access to FASD screening and diagnostic services would increase opportunities for earlier intervention. This requires investing in greater diagnostic capacity and establishing referral processes and criteria across different systems to optimize referrals for FASD diagnosis.
Once diagnosed, there must also be greater access to FASD key workers, counseling and respite for parents, skills training and occupational therapy, and other support services. These must be flexible to account for the diversity among persons with FASD, but also culturally grounded to address the elevated prevalence of FASD among the Indigenous community.
More broadly, FASD training should be mandatory in program curriculum for medicine, nursing, occupational therapy, corrections, law, education, and social work.
Not only would this help make practices in these fields more FASD aware, the professionals within them could better recognize signs of FASD and thereby connect affected persons to diagnosis and support.
Finally, removing stigma is essential for creating environments where families can access the help they need without fear of negative judgment.
People with FASD have a medical condition they never chose; mothers drink during pregnancy due to a lack of education and shortage of support, not because they want to hurt their child.
It is by working together - as families and communities- that we can improve outcomes for persons with FASD, their families, and society as a whole.