Project Description
Challenge
There is a lot of academic writing on the challenges faced by children and youth with Autism Spectrum Disorder (ASD), however, much of what’s known is based on parent report or researchers’ observations. We know very little about the lived experiences of youth with ASD, from their own perspectives. ‘Giving voice’ (including to those who are less verbal) and learning more about the perspectives and experiences of teenagers with autism is the focus of the ASD Voices Study.
Project Summary
KBHN researchers wanted to know what mattered to young people with ASD and their families as they navigate high school and transition toward adulthood. What challenges are they facing at this stage in their lives? What are their goals and aspirations for the future, and what do they need to achieve them?
Investigators gathered this information using a flexible methodology that took each participant’s strengths and preferences into account. This methodology was informed by systematic reviews of previous studies with other groups of individuals with diverse communicaty needs, with input from family advisors. The methods of communication ultimately selected included oral interviews, emails, informal chats integrated into an activity the young person enjoyed, utilizing visually augmented communication supports to help the participants understand and express themselves. Thus, several diverse stories were heard.
Result
Advocates often emphasize that people with disabilities have the right to express their views on their lives and all the matters that affect them. Capturing first-hand experiences was beneficial for families as well: some participants’ parents said they had not had much support in understanding their children’s perspectives. They believe that hearing from youth across the spectrum could be comforting and informative to other parents who are starting to navigate their child’s diagnosis.
Analysis of data is in its final stages, currently supported by additional grant funding that was possible in part due to previous KBHN support. The collected experiences and opinions of participants will be shared with the public and policymakers upon the study’s completion, giving them a voice beyond the clinic.
Funding
This subproject was part of the larger “ASD Program: Optimizing Development and Outcome in Children and Youth.” The ASD program was funded a total of $1,142,681 from the Kids Brain Health Network and $794,987 from participating partners.
Team
Principal Investigators
Lonnie Zwaigenbaum, University of Alberta
Mayada Elsabbagh, McGill University
David Nicholas, University of Calgary
Co-Investigators
Pat Mirenda, University of British Columbia
Peter Szatmari, University of Toronto
Stelios Georgiades, McMaster University
Teresa Bennett, McMaster University
Isabel Smith, Dalhousie University
Partners
Ilina Singh, University of Oxford
