Authors: Audrey McFarlane , Kathy Unsworth, Victoria Bailey
More people in Canada have Fetal Alcohol Spectrum Disorder (FASD) than autism, cerebral palsy, and Down syndrome combined, but there is still no coordinated approach at a national level to address this disability (Figure 1).
A lifelong disability
FASD is a lifelong disability impacting the brain and body of people exposed to alcohol in the womb. Each person with FASD is unique and will have different strengths and challenges. When unsupported, people with FASD are more likely to experience substance use challenges, mental health conditions, involvement in the criminal justice and child welfare system, emotional and physical abuse, trauma, and disrupted housing. The national cost of FASD across sectors is estimated to be $9.7 billion per year and the prevalence rates are currently estimated at 4%.
FASD is an equal-opportunity disability, meaning that it can impact anyone, regardless of their race, religion, gender, or social status. All populations that use alcohol are at risk for FASD. FASD can be prevented if women and girls have equal access to the right support and services.
Canada needs a coordinated approach, such as a National FASD Strategy, to tackle the unique complexities of FASD. This approach should be person-centred, evidence-based, informed by lived-experience, and build on the existing work done in provinces and territories across Canada. Investing in a National FASD Strategy now can reduce the long-term costs and improve the health and social environment of people with FASD and their families.
FASD is very challenging to accurately recognize and diagnose. The signs and symptoms of FASD often overlap with other disabilities and people with FASD can have co-occurring disorders or mental health conditions that can mask some of the signs of FASD. As a result, FASD often goes unrecognized.
In order to get a diagnosis an individual must be assessed by a multidisciplinary team of experts. There are diagnostic clinics available across Canada, but they often have long wait times and people seeking diagnosis are limited by geographic location.
FASD is uniquely complex. It is not accurately represented by other developmental disabilities. FASD occurs within a web of increased risk and vulnerabilities. People impacted by FASD (including people with FASD, their families, their caregivers, and women who drink alcohol during pregnancy) are at increased risk for stigmatization, multigenerational trauma, and adverse experiences. These complex factors are often experienced in combination, at greater magnitudes, and with compounding effects.
A National FASD Strategy can ensure that the unique and complex nature of FASD is well understood across Canada and that programs and policies take these factors into consideration when creating initiatives.
The costs of FASD are high when unsupported
FASD is costly, due to increased need for services for individuals and families across sectors. When unsupported, the cost of FASD in Canada is estimated to be approximately $9.7 billion per year. These costs include the impact of FASD on the criminal justice system, health care, education, and social services.
Many of these costs can be reduced with effective policies and programs to support people with FASD and their families. A National FASD Strategy will provide the opportunity to reduce the economic burden on Canadian taxpayers by encouraging the implementation of such initiatives.
A National FASD Strategy can help
Right now, support for people with FASD and their families varies widely. Some great work has been done at the provincial, regional, and territorial level – and the Canada FASD Research Network provides much needed evidence and supports across the nation – but there is no coordinated approach within the federal government to address FASD.
A National FASD Strategy 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. Without an organized strategy, people with FASD and their families do not have equal opportunities to achieve success.
COVID-19 has created further challenges
The COVID-19 pandemic has only added to the challenges that people with FASD and their families are facing. Anecdotally, caregivers have reported a concern about lack of support, disruptions in daily routines, and mental health challenges for people with FASD. What’s more, alcohol consumption is on the rise, raising concerns about a potential increase in alcohol-exposed pregnancies.
Canada cannot afford to wait any longer to address FASD. A National FASD Strategy is a statement of leadership and commitment. It tells Canadians that their government recognizes the enormous impact of this disability and is working to address it. For members of the FASD community, the federal government’s silence on this issue speaks volumes. It’s time for a National FASD Strategy.