Children’s Healthcare Canada Knowledge Exchange Network (KEN)
May 26 @ 11:00 am - 12:00 pm
Pathways in Autism Spectrum Disorder: A Canadian Lens
(Webinar Series: 1 of 3)
In this first webinar of a series of three, we describe the origins of the Pathways in Autism Spectrum Disorder (ASD) project. The study grew from a series of community consultations that brought stakeholders together to identify research priorities. Our original research question, based on the result of this process was: what individual, family, and community factors foster best outcomes for children with ASD?
In Phase 1 of the Pathways in ASD study we enrolled 421 families in 5 provinces shortly after their children were diagnosed with ASD between the ages of 2 and 5 years. We then followed children’s trajectories of development until after they entered school, along with capturing families’ experiences. Phase 2 funding allowed us to follow children until age 11, and to examine how they fared in school through both parents’ and teachers’ perspectives. We are nearing the end of Phase 3, in which our focus has been the developmental health of youth with ASD as they and their families navigate the adolescent years.
We will describe how our developmental approach helps us to understand more about the natural history of ASD, for example, findings related to the growth of children’s abilities and how they are related to changes in autism symptoms.
Lessons learned include finding that (1) age at diagnosis of ASD varies widely between provinces, even among those diagnosed as preschoolers; (2) individual children with ASD follow different patterns of change over time, and (3) children’s challenging behaviour is not the main source of parents’ distress. We saw a lot of variation in the degree of change that children showed. Moreover, children’s adaptive abilities and ASD symptoms do not necessarily change in tandem, challenging the simplistic notion of “high versus low functioning” in ASD. Parent-focused interventions may be very important for some families.
Stay tuned for the next two webinars in this series — coming up on June 2nd and June 9th at 11am Eastern!