Grant: Project Grant

Autism is a lifelong condition that impacts the day-to-day functioning and quality of life of 500,000 children and families in Canada. After a child receives an Autism diagnosis, parents often want to know 'what to expect'. This is a difficult question to answer, as each child with Autism is different. To date, research has focused on average groups of children, so we do not know much about how individual children develop over time. As a result, our systems of care often do not meet the unique and changing needs of autistic children. Moreover, most follow-up studies have focused on child symptoms and deficits (what a child cannot do) with little emphasis on child functioning (what a child can do). To understand the diverse trajectories of functioning in children with Autism, we propose the Pediatric Autism Research Cohort (PARC) Study. We will recruit 1300 children (ages 2 to 4) with a new Autism diagnosis from clinics across 4 provinces: Ontario, Manitoba, Alberta, British Columbia. This will be the world's largest Autism cohort study. We will collect data every 6 months, from diagnosis to age 6, including the transition into school. We will measure child, family, and service characteristics. We will learn how these change over time and what predicts that change. This information will be shared back to families in research summary reports describing their child's progress; families can use these reports to inform their clinical care planning. By partnering with key stakeholder organizations - Canadian Autism Alliance, Children's Healthcare Canada, Public Health Agency of Canada - we will ensure our study is helpful to families, clinicians, and policy makers across Canada. This study will create new knowledge on 'what impacts development' in children with Autism to help: a) clinicians develop more personalized care plans; and b) governments plan programs and policies based on up-to-date research evidence. This work will also inform the National Autism Strategy.