At this year’s Canada FASD Conference, self-advocates shared their perspectives on gaps in research and how the field can better reflect lived realities.
Facilitated by Dorothy Reid, Melissa Dobson and RJ Formanek, the session was originally described as: “This session gives the microphone to people who live with FASD. They speak up about what’s missing in today’s research. These self-advocates don’t just accept unfair stories—they challenge them. They ask researchers to stop focusing only on problems and start listening to real voices. They want research to be fair, welcoming, and respectful of all cultures. By talking together, we can make FASD research more honest, equal, and led by the people it’s about.”
It brought together a diverse group of participants, including individuals with lived experience, caregivers, service providers, and researchers. They held an open, collaborative discussion about gaps in understanding, care, and support for people affected by FASD. Participants shared their ideas using pens and sticky notes. They also used an online polling tool that collected responses in real time. Today, we’re sharing the key takeaways from this session!
Markers and diagnosis
Participants emphasized the importance of early detection and developing biological markers. For example, they suggested cheek swabs, like those studied for ADHD, or mRNA markers for prenatal alcohol exposure. They discussed normalizing screening practices and addressing racial bias in questions about pregnancy and alcohol use. Another recommendation was to mandate FASD-specific training for doctors, since misinformation about safe drinking during pregnancy persists. Finally, participants highlighted the need to improve diagnostic clarity, especially understanding why ADHD is often diagnosed instead of FASD.
Assessment process
Participants emphasized the importance of providing early interventions and assessments at younger ages. They also called for clearer diagnostic processes and the development of standardized assessment tools. In addition, there was support for assessment strategies that do not depend solely on confirmed maternal alcohol exposure.
Brain development and aging
More research is needed to understand how the brain develops and changes across the lifespan in people with FASD. This includes studying later-life brain “catch-up” periods and neuroplasticity, exploring how wisdom and neurodevelopment may progress differently with age, and understanding support for later brain development.
Aging and senior care
As people with FASD age, there is a need for specialized support and research on aging and elder care. This includes strategies for senior care, studying whether dementia and aggression occur earlier or more frequently in people with FASD, and creating approaches for nursing homes that may need to treat individuals with FASD with a different lens.
Education
There is a need for stronger educational supports and awareness in schools to help students with FASD. This includes providing effective support in schools and training for educators, addressing disparities in funding between autism and FASD across different regions and considering executive functioning and care support needs.
Research participation
To make FASD research stronger and more inclusive, there is a need to make participation easier and more accessible for all. This includes providing clear guidance on how to get involved as a research participant with easy-to-follow steps.
Housing
Participants shared that there is a need for more research on supporting families to stay together at home whenever possible, rather than defaulting to group home placements, and on improving the consistency and timing of supports across the lifespan.
Teen growth and supports
More research is needed to understand how adolescence and puberty uniquely affect people with FASD. For instance, this includes studying puberty differences and approaches to support, brain-based research on puberty, sensory experiences, and hormone imbalances, as well as the impact of social media and drugs or alcohol on individuals with FASD or Neonatal Abstinence Syndrome. There needs to be more offering practical suggestions for supporting independence/interdependence and the transition to adulthood and addressing adaptive skill levels and outdated IQ measurements through needed policy changes.
Health factors
There is a need for comprehensive health research that recognizes the complex physical, emotional, and social factors affecting individuals with FASD. This includes research on specific sex education, orofacial myofunctional disorders and their long-term impact on language and literacy, the health of women with FASD – including contraception, sexual consent, and strategies for knowledge translation – and safety factors such as addiction, homelessness, and overrepresentation in care.
Sexual development and safety
There is a need for ongoing education and research on sexual development and safety throughout the lifespan. This includes understanding FASD and healthy sexual development, consent, and education; addressing early sexual activity, adapted sex education, and confusion about sexuality; and providing education specific to sexuality, consent, and behaviour in an FASD-informed way across the lifespan.
Thank you
A huge thank you to everyone who joined and contributed to the session! Your insights are incredibly valuable, and CanFASD will use them to shape future research priorities – making sure that the voices of individuals and families continue to guide FASD research and practice across Canada. Stay tuned for updates on this project and for more opportunities to share the research gaps you see and care about.