Project Description
Challenge
While there has been little research done about the transition to adulthood in people with autism spectrum disorder (ASD), there has also been increasing concern from parents and policymakers about the poor adult outcomes associated with ASD. However, research on children with ASD can now lead to a study of adults.
Project Summary
In 2004, a national research program called Pathways in ASD began following children with ASD from the time of diagnosis at 2-4 years of age, to around 11-12 years of age. Phase I and II make up the most extensive longitudinal study of young people with ASD in the world. A significant finding was that different ASD phenotypes have distinct developmental trajectories and that the shape of some trajectories can change based on factors such as family functioning and services.
Now, researchers are continuing their efforts into Phase III of the study and will follow the adolescents with ASD into adulthood. They will focus on the metrics of “developmental health” (DH) of adolescents with ASD, such as socialization and self-determination.
Researchers aim to identify the distinct DH trajectories and how environments can influence the DH of a child into adulthood. Phase III will continue to follow over 300 participants aged 12-13, along with their parents, with an estimated 4 to 5 assessments up to age 18. Questions will focus on critical markers of DH identified by families as having significance. The researchers will make estimates of the rate of change observed in the DH trajectories.
Result
These trajectories and the variables that they predict allowed researchers to use evidence-based processes to determine better predictors and interventions with parents, practitioners and policymakers.
Team
Investigators
Dr. Peter Szatmari, The Hospital for Sick Children and the University of Toronto
Dr. Pat Mirenda, University of British Columbia
Dr. Connor Kerns, University of British Columbia
Dr. Charlotte Waddell, Simon Fraser University
Dr. Lonnie Zwaigenbaum, University of Alberta
Dr. Teresa Bennett, McMaster University
Dr. Stelios Georgiades, McMaster University
Dr. Eric Duku, McMaster University
Dr. Wendy Ungar, The Hospital for Sick Children and the University of Toronto
Dr. Tracy Vaillancourt, University of Ottawa
Dr. Mayada Elsabbagh, McGill University
Dr. Isabel Smith, Dalhousie University and IWK Health Centre
Michael Chalupka, Project Coordinator, McMaster University
Dr. Anat Zaidman-Zait, Tel Aviv University
