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CBPR- Community Based Participatory Research
What is CBPR?
Community Based Participatory Research (CBPR), is a collaborative approach that invites individuals with lived experience into the research process. At times, research can be done on or for individuals with lived experience (in our case, with Autism), without including any autistic individuals, parents, or siblings to determine research methodologies, the kinds of questions to ask, and how to ask them.
In the early stages of our research process, we invited a group of autistic individuals, parents, and siblings of autistic individuals to share their experiences concerning the transition into adulthood. Their valuable input has already begun to inform the most important themes regarding this transition, as well as accessibility considerations for how we want to obtain data.
As the research progresses, we will continue to update this page with ways to engage with the research, as well as any findings we have gathered!
Meet some of our CBPR team!
Sheila King (parent)
I'm Sheila King - a parent of an autistic 20 year old. We've been part of the Autism Research Program since my son was a toddler. I am very honored and excited to be part of this process, and offer my perspective as the parent of someone on the spectrum. Advocating and supporting him has changed my outlook in so many amazing ways. I have also partnered with local learning institutions to host autistic learners at my workplace, which has been very rewarding for both myself and my colleagues. I hope this project creates a meaningful way to connect with families and understand what supports and resources will be most impactful.
Dr. Lori Sacrey (parent)
Lori completed her PhD in Behavioural Neuroscience from the University of Lethbridge. Lori is a Research Associate with Dr. Lonnie Zwaigenbaum and provides research support to many research studies, inclduing the CBPR study!
She is also Registered Psychologist in the province of Alberta, where she supports neurodivergent teens and adults through counselling, assessment, and information sharing.
Kyle Reid (sibling)
With lifelong exposure to the ins and outs of neurodivergence through family members on the autism spectrum, Kyle earned a Master of Medical Science degree in Pediatrics from the University of Alberta for his work on early identification of autism in young children. He currently supports research efforts in a clinical faculty at Dalhousie University. Building from personal experiences and the opportunities to study social and clinical sciences, Kyle is a fierce proponent of improved and equitable access to healthcare and family services. He is an avid reader, video gamer, artist, and 3D printer enthusiast! He is currently enjoying life on the East Coast in Halifax, NS.
Madison Fankhanel (sibling)
Madison is a Research Coordinator at the Autism Research Centre, and is a younger sibling to her autistic older brother. Madison is one of the lead Research Coordinators on this project, bringing in her lived experience as a sibling, and as a non-autistic neurodivergent person. Madison earned her Bachelors of Science in Honours Psychology through the University of Alberta. She hopes to one day work as a psychologist that specializes in working with neurodivergent clients. Maddie loves to read, make art and hang out with her dog, George Fruit Bat Jones (pictured.)
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