"Telling Our Stories" (TOS) is a first of its kind community-engaged research project led by Dr. Patty Douglas and funded by the Social Sciences and Humanities Research Council (Partnership Development Grant 890-2024-0164). Through a 3-year partnership between Queen’s University and five community organizations, including Algoma Family Services, Autism Alliance Canada, Autism Ontario, Finding Our Power Together, and the Re•Storying Autism Collective, TOS aims to address gaps in autism research and co-design new and culturally relevant supports with autistic youth and community partners in Northern Ontario and Indigenous communities.
A central part of this research project is the use of Photovoice, a participatory action research method that combines photography and storytelling to highlight the experiences, knowledge, and voices of a particular group. In this case, autistic youth from northern and Indigenous communities in Northern Ontario are not simply research participants; they are taking an active role in shaping the research as co-researchers, creators, and advocates.
Two doctoral students, Haley Clark and Caelan Carriere, have been part of the TOS research team working with autistic youth in Sault St. Marie, Ontario. In this interview, Caelan and Haley talk about their experiences working on the project, what they have learned about community-engaged research, and the impact they hope TOS will have on autistic youth, families, and communities across Northern Ontario.
Creating Space for Voices That Are Often Overlooked
When asked about the most meaningful part of their work, both doctoral students highlighted the importance of listening to and centering the voices of autistic youth. For Caelan, the experience has been particularly meaningful because of her own connection to Northern Ontario and the autistic community. “So often, autistic/neurodivergent people, youth voices, northerners, and folks living in more isolated communities don't get their voices heard, and even fair representation can be sparse for some of these groups”, Caelan shared.
As an autistic person from Thunder Bay, Caelan described the opportunity to work alongside youth from Northern Ontario as especially significant, and she highlighted the role of researchers who care about their needs and perspectives. "It's been affirming to see that there are academics and research teams who are interested in elevating these valuable voices and are willing to take the time to do community-engaged research the right way even if it takes longer", she explained.
For Haley, one of the most powerful moments of the project came during the public Photovoice Exhibit night at the Youth Wellness Hub at Algoma Family Services in Sault Ste. Marie. “I watched as the youth filled in, bright eyed, looking for their photography. I watched as they passionately told gallery viewers about their work and what it meant to them. That night I watched the community (caregivers, service providers, researchers, and locals) come together to show love and support for the youth; this is what community-engaged research is about.” Haley reflected.
Inspiring Youth to See the Possibilities
Both Caelan and Haley hope that TOS will have an impact that extends beyond the project itself by amplifying the voices of autistic youth and showing the world what they are capable of. They also hope the project challenges misconceptions about autism and demonstrates the knowledge, creativity, and perspectives that autistic youth bring to their communities.
For Caelan, one of the most important possibilities is that other autistic youth will encounter the project and recognize themselves in it. She thinks that if the research outcomes are mobilized in an accessible way, this will inspire young people to think about what thriving means in their own lives and perhaps even imagine how they might tell their own stories. “I would be so grateful if autistic youth looked at this, and it made them want to engage with it by examining what thriving looks like/may look like in their lives,” Caelan said.
For Haley, the project has the potential to help autistic youth recognize the value of their own voices. “I hope Telling Our Stories teaches autistic youth the power of their stories and how important their experiences and voices are in the community. I hope they were able to see the power of photography and reflect on the supports they have had in their lives to thrive,” she explained. She also hopes the project will help families recognize the important role they play in supporting autistic youth and encourage schools, service providers, and community organizations to become more inclusive and promote autistic youth thriving.
Paying Attention to What Youth Are Telling Us
When reflecting on what surprised or inspired them most, both research assistants agreed on the importance of listening and creating safe spaces for autistic youth to share their views. For Caelan, the project reinforced the importance of approaching research participants without preconceived assumptions about what they can or cannot do. “The best thing you can do to prepare for something is to not let generalized assumptions distract you from paying attention to what's in front of you. Everything about this project was important, and I decided that the most useful thing I could do is pay attention to everything the participants were sharing with us.” Caelan explained.
For Haley, it was the youth’s willingness and confidence to share their stories that surprised her the most. “I don’t think when I was their age, I would have been so open and confident in sharing my stories and experiences,” she reflected. Their openness inspired Haley to think about the potential of young people to shape the future and about the privilege of being able to play even a small role in their stories and the TOS project.
The Telling Our Stories project recently completed its second Photovoice workshop with autistic youth in Batchewana First Nation and initiated Phase 2—co-design of culturally and neurodiversity-affirming autism services in Northern Ontario. The team is also looking forward to a second Photovoice Exhibit coming soon!