Weaving the Voices of Lived Experience and Research into the National Framework

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The Impact of FASD in Canada 

Fetal alcohol spectrum disorder (FASD) is the leading cause of neurodevelopmental disability in Canada, affecting approximately 4% of the population. There are more Canadians with FASD in comparison to other neurodevelopment disabilities, including Autism, Cerebral Palsy, and Down Syndrome combined. Despite the high prevalence rate of individuals with FASD, Canada does not have a National FASD framework.  

In October 2022, Bill S-253, An Act Respecting a National Framework for FASD, was introduced to Senate, outlining the development of a national framework designed to support Canadians with FASD, their families, and caregivers. A national FASD framework would use evidence and best practices to standardize prevention efforts, diagnostic assessments, and interventions for all Canadians. 

Why Do We Need a National FASD Framework in Canada? 

Canadians with FASD deserve to have evidence-based, individualized support. Women and gender-diverse individuals deserve equitable access to information to reduce alcohol use during pregnancy. Caregivers deserve evidence-based information and practices to support individuals with FASD. A national framework will aid in promoting research and knowledge translation efforts; set national standards for FASD prevention, diagnosis, and support; raise awareness of FASD and the risks of alcohol use during pregnancy; improve training and education; and improve outcomes for individuals with FASD across the lifespan. 

An Interactive Learning Workshop  

In November 2023, the inaugural CanFASD conference was held in Saskatoon, Saskatchewan. An interactive workshop was conducted to engage stakeholders in discussions about the development of a national FASD framework. The objectives of the workshop were three-fold: (1) to identify essential elements of a national FASD framework; (2) gain a stakeholder perspective on the goals and objectives of the framework; and (3) engage in group discussions to generate solutions-focused strategies.  

Working groups were tasked with reviewing and consolidating information from stakeholder engagement platforms. Workshop attendees were split into small groups and assigned to one of five categories: (1) training and education; (2) awareness and prevention; (3) diagnostic capacity building; (4) improved outcomes; and (5) research and knowledge translation.  

FASD Training and Education 

The need for national standards and federal accountability for FASD training and education, was a recurring theme in group discussions. Attendees underscored the need for clarification about who is responsible for overseeing FASD training and education, while emphasizing the need for standardized initiatives that include consistent messaging. The group stressed the importance of educational opportunities being accessible for all relevant professionals. Such efforts were indicated to be foundational factors to reduce the stigma associated with alcohol use during pregnancy and FASD. 

FASD Awareness and Prevention  

Workshop attendees stressed that FASD awareness and prevention initiatives are essential to reduce stigma. It was also advised that the complexity of information being disseminated about the implications of prenatal alcohol exposure needs to be addressed. Consistency in FASD awareness and prevention efforts was deemed imperative. This is to ensure all Canadians receive the same message about alcohol use during pregnancy and FASD.  

Additionally, workshop attendees underscored the importance of FASD prevention efforts accounting for the various factors that may contribute to alcohol use during pregnancy. Attendees also stressed the need for respectful, culturally-appropriate, and gendered-inclusive FASD awareness and prevention efforts that are non-stigmatizing. Conversations also eluded to increasing the accessibility of free birth control on a national level, while exploring the idea of offering free pregnancy tests in establishments that sell alcoholic beverages.  

FASD Diagnostic Capacity Building

Workshop attendees also engaged in discussions around FASD diagnostic capacity building. Discussions revolved around increasing FASD diagnostic assessments for adults. Attendees spoke to the need for a national tool that includes an adult pathway and increasing the adult diagnostic capacity. Lastly, increased diagnostic capacity for adults, accessible funding, and the need for functional-based approaches was also highlighted.

Moreover, further consideration is needed around the wording used in diagnostic assessments. This is to reduce stigma surrounding FASD and alcohol use during pregnancy. In attempt to mitigate the stigma associated with FASD diagnoses; careful consideration is necessary for pre-diagnostic assessments. Attendees were left pondering whether there is a need to revaluate the requirement for maternal confirmation of alcohol use for an FASD diagnosis. 

Improved FASD Outcomes  

Attendees spoke to the need for culturally sensitive and trauma-informed FASD initiatives to improve outcomes for individuals with FASD across the lifespan. The need for more research was a key focus, with gap analyses as a method of ensuring that resources are being effectively used. Attendees also emphasized the need for a suitable living wage for individuals with FASD to offset inflation. Lastly, discussions also extended to how to improve outcomes for individuals who consumed alcohol during pregnancy. Nevertheless, workshop attendees highlighted the importance of viewing FASD from a life course perspective, while addressing the need for interventions across the lifespan. 

FASD Research and Knowledge Translation

The importance of storing data in a database that is Canadian-based was deemed imperative. Capturing provincial and territorial differences was as well. A recurring theme in group discussions was the need for more community-based research focused on the burden of FASD and the implications on one’s quality of life. More research was also advised to address the lack of longitudinal studies. These are helpful for stakeholders to evaluate the impact of services. Lastly, research focused on the strengths of individuals with FASD, was also deemed important.  

Additionally, attendees specified that more research is needed on the impacts marketing and alcohol policy has for individuals with FASD and the implications of prenatal alcohol exposure. Knowledge mobilization efforts were viewed as a vital approach to help educate individuals on prenatal alcohol exposure. Attendees mentioned that more research about creating non-stigmatizing environments to support pregnant women and gender-diverse individuals during pregnancy.  


Nevertheless, gaining a broad range of stakeholder perspectives will help provide context for the issues facing Canadians with FASD, their families, caregivers, and service providers, and the strengths and challenges within Canadian systems to inform a national FASD framework.  

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