What does access to an FASD diagnosis really look like in Canada? How many people are still waiting to be diagnosed? Today we’re travelling back to 2024 to spotlight an incredible open access article that members of the CanFASD team contributed to.
Fetal Alcohol Spectrum Disorder Diagnostic Clinic Capacity in Canadian Provinces and Territories was written by Svetlana Popova, Danijela Dozet, Valerie Temple, Audrey McFarlane, Jocelynn Cook and Larry Burd. The study examined the capacity of multidisciplinary FASD diagnostic clinics across Alberta, British Columbia, Manitoba, Ontario, and the Northwest Territories between 2015 and 2019.
By collecting data directly from clinics, the researchers assessed how many individuals were being evaluated and diagnosed each year, how long people were waiting for assessments, and whether current services are sufficient to meet the estimated need.
What they found
The findings were striking. Across participating jurisdictions, an estimated 98% of individuals with FASD are undiagnosed or misdiagnosed. Wait times ranged dramatically – from as little as one month to as long as four and a half years. Based on prevalence estimates, diagnostic capacity would need to increase at least 67-fold per year in order to diagnose all children and youth with FASD.
The study also highlighted important regional differences. Provinces with centralized, specialized clinics appeared to diagnose more individuals than those operating through multiple smaller clinics, raising important questions about how systems are structured, funded, and supported.
Diagnosis is more than a label
Diagnosis is the gateway to services, supports, educational planning, and prevention efforts. Without adequate capacity, individuals and families face prolonged uncertainty, and policymakers lack the data needed to plan effectively. This research continues to inform critical conversations about investment, equity, and system reform in Canada.
This research is free!
We’re so glad that research like this is freely available to anyone who needs it.
If you value open access research on FASD, we invite you to consider donating to CanFASD’s Open Access Research Fund. A small monthly gift helps ensure that important findings like these remain accessible, visible, and impactful – not hidden behind paywalls.