The Pathways Study
The Pathways in ASD study is one of the world’s largest, and longest-running longitudinal studies of the development of young children and adolescents with ASD. And it all began with some play money….
In 2003, the Canadian Autism Intervention Research Network (CAIRN) held a conference in Toronto, the main purpose of which was to create a national ASD research agenda. Participants – practitioners, policy makers, parents, researchers, and clinicians -- gathered in Toronto to hear presentations from the researchers. Then, small groups formed, each provided with a sum of play money. Their task was to decide which research ideas they would fund with this finite amount of money. A national longitudinal study of ASD garnered the largest “cash investment.”
funding from the Canadian Institutes of Health Research (CIHR), and other partners, the researchers launched the study in 2005, at five regional centres across Canada: Halifax, Nova Scotia, Montreal, Quebec, Hamilton, Ontario, Edmonton, Alberta, and Vancouver, British Columbia. Over several months, 424 children were recruited around the time of their diagnosis at these sites.
Phase I
The initial study, now termed Phase I, began in 2005 and sought to describe developmental trajectories of children with ASD between the time of their diagnosis at age 2-4 years and their transition into school. The investigators looked at how child, family, treatment, and community factors affected the development of the children. The Pathways study also looked at ASD policy making in Canada, to find ways of improving the interactions between researchers, policy makers, and parents.
Phase II
In Phase II of the study, the goals were to continue to monitor the developmental trajectories of children with ASD in middle childhood (ages 7 to 11) and to better understand how family experiences impact abilities and skills as the child develop. The main factors of interest included academic progress, behavioural adaptation, adaptive functioning skills, mental health issues, community and school services received, and parental stress and family functioning.
In Phase II of the study, the goals were to continue to monitor the developmental trajectories of children with ASD in middle childhood (ages 7 to 11) and to better understand how family experiences impact abilities and skills as the child develop. The main factors of interest included academic progress, behavioural adaptation, adaptive functioning skills, mental health issues, community and school services received, and parental stress and family functioning.
Phase III
In 2015, with further funding from the Canadian Institutes of Health Research (CIHR), most of the children and their families are again taking part in the study, for 7 more years. This time, the investigators are looking at “developmental health” -- that is, how well the children/teens are growing in personal competence and daily living skills, and what helps them move towards independence, whether in the work world, post-secondary education or in their living arrangements. In addition, in this next phase of research, the investigators have added a sub-project that captures the “voices” of those affected by ASD, as well as a major training and mentoring program designed to push ASD research and practice forward.
