Executive Director, CanFASD
A national strategy on fetal alcohol spectrum disorder would improve prevention, diagnosis, and support for patients and families.
About 1 in 25 Canadians have fetal alcohol spectrum disorder (FASD) — more than autism, cerebral palsy and Down syndrome combined. Yet awareness of FASD lags far behind that of these other neurodevelopmental conditions.
FASD is a lifelong disability that affects the brain and body of people who were exposed to alcohol in the womb. It can cause cognitive, behavioural and socio-emotional challenges, such as a learning disability, speech and language delays or difficulty with memory and attention. Prenatal alcohol exposure is also often associated with experiencing substantial adversity, including early life instability and trauma and difficulties with independence, employment and daily living.
When they don’t receive the proper support, people with FASD are more likely to experience substance use challenges, involvement in the criminal justice and child welfare system, challenges succeeding in school, emotional and physical abuse and homelessness. More than 90% of people with FASD experience mental illness.
We need to understand the challenges people with FASD face, but also their contributions and strengths
FASD affects people from all walks of life
FASD can affect anyone, regardless of their race, religion, gender or social status. All populations that use alcohol are at risk for FASD. While prevention may seem simple, it goes beyond telling women not to drink during pregnancy. Early life trauma, stressful life events, intimate partner violence and mental health challenges are all associated with an increased risk for drinking during pregnancy. As well, a woman may not recognize she is pregnant during the early stages.
Support for women and girls, such as equitable access to contraception and helping women and couples to have healthy pregnancies and healthy families, could help prevent FASD. But biological, behavioural, sociocultural and interpersonal factors all combine to contribute to FASD and don’t just affect an individual, but generations of a family.
This is why policies and initiatives regarding FASD must address broader social and systemic inequities that put families at risk, says Audrey McFarlane, executive director of the Canada FASD Research Network (CanFASD), an interdisciplinary research network with collaborators, researchers and partners across the country.
Support varies across the country
FASD is also costly. When people with FASD are not properly supported, it is estimated to cost taxpayers about $9.7 billion per year, including impacts on the criminal justice system, health care, education and social services.
This is why CanFASD is calling for a national FASD strategy. “Right now, support for people with FASD and their families varies widely among provinces and regions, but there is no coordinated approach within the federal government to address FASD,” McFarlane says. “A national FASD strategy can reduce the economic burden on taxpayers. It will give our provinces and territories an evidence-based direction that can improve FASD prevention, diagnosis and support to help Canadians with FASD reach their full potential.”
McFarlane says many assumptions are made regarding what people with FASD can do. “They have strengths that can be nurtured. They are successful in so many ways when they have the proper support, but assumptions can restrict what they can do,” she says. A national strategy will create more recognition of the disability, provide increased access to needed support and help educate teachers and other professionals who work with people with FASD, adds McFarlane.
“We need to understand the challenges they face but also their contributions and their strengths and to provide them with the support they need to help them do incredible things.”