Written by Taylor Groulx, member of the 2024 CanFASD Trainee Program.
As a graduate student studying FASD, I’ve learned that meaningful research isn’t just about data and statistics—it’s about people. While academic studies are foundational in developing support and interventions, their value is significantly enhanced when enriched by the firsthand insights of individuals who live with these realities every day. FASD is a term describing the effects that can occur in an individual whose mother consumed alcohol during pregnancy. These effects may include physical, behavioural, and learning problems. However, it’s important to note that FASD is not a one-size-fits-all diagnosis. It’s a spectrum, meaning each person’s experience is unique.
Understanding the Spectrum
FASD encompasses a variety of developmental disorders, and its manifestations can vary significantly from person to person. Some individuals may face significant challenges in daily living and learning, while others might have milder symptoms. This diversity is why engaging with people across the spectrum is essential. Their lived experiences provide invaluable insights that can guide research to be more inclusive and reflective of the spectrum’s breadth.
Engaging with Respect
Connecting with individuals who have FASD requires a respectful, empathetic approach. Here are a few ways researchers like myself can initiate these connections thoughtfully:
1. Listening Sessions
Organizing listening sessions where individuals with FASD and their families can share their stories in a safe, supportive environment is crucial. These sessions provide researchers with a deeper understanding of the lived experience of those affected by FASD. They also have the potential to affirm participants that their experiences are valued and respected.
2. Collaborative Projects
Involving individuals with FASD in research projects as advisors can help ensure that the studies are not only about them, but also for them. These collaborations have the potential to be empowering for participants in our research while also enriching the research being conducted, leading to more accurate and meaningful research outcomes that directly benefit the FASD community.
3. Educational Workshops
Hosting workshops that bring together researchers, health care and social service providers, and people with FASD can foster mutual learning. A two-way exchange of knowledge not only allows us as researchers to learn directly from those affected by FASD about their daily challenges and successes, but it also enables us to share emerging research, strengthen community ties, and reinforce our commitment to making a meaningful difference.
4. Clear Communication
When sharing research findings, it’s essential to communicate clearly and accessibly, ensuring that everyone, regardless of their scientific background, can understand. This approach not only demystifies complex research but also broadens the reach and impact of scientific knowledge.
Embracing Diversity Within the Spectrum
Connecting with individuals who have lived experience of FASD offers valuable insights, yet each conversation reflects just one facet of the diverse FASD spectrum. It’s important to understand that engaging with one person does not provide a universal blueprint for all experiences. Instead, viewing each interaction as single chapter in a much larger guidebook can be more useful. This perspective ensures that researchers remain open to learning from each new individual they meet, staying receptive to the unique stories of everyone they encounter.
Such interactions enrich our collective understanding of FASD’s complexities. Recognizing, respecting, and embracing this diversity is vital for developing interventions and support systems that are effectively tailored to meet a range of individual needs.
Conclusion
Integrating the perspectives of those with lived experience into FASD research not only enriches the academic work but also bridges the gap between knowledge and application. As researchers in this community, our goal is to improve outcomes and quality of life for individuals with FASD. To do this effectively, we must listen to and learn from the very people we wish to help. By fostering respectful, engaging partnerships, we ensure that our work is grounded in reality and is responsive to the diverse needs of the FASD community.
Through this integrative approach, we can hope to drive meaningful change and provide solutions that are as unique and varied as the spectrum itself.
Taylor Groulx is a graduate student in Dr. Catherine Lebel’s Developmental Neuroimaging lab at the University of Calgary, where she is pursuing her master’s in neuroscience. She is currently studying structural brain development in children exposed to prenatal alcohol and those with early adverse experiences.