Project 461097

Autism is the most common neurological disability in Canada yet there are large gaps in our understanding of how we can support autistic individuals in reaching their fullest potential. After decades of advocacy efforts, the federal government has agreed to create the first National Autism Strategy (NAS). To help support the creation of a meaningful NAS, The Canadian Autism Spectrum Disorder Association (CASDA) and partners are forming a pan-Canadian Autism Data Collaborative (ADC). This ADC will bring together people from many different sectors across Canada to work on issues in health and policy research, with the goal of supporting autism policy development and evaluation. The goal is that the projects born from this work will help make better use of our Canadian health, social, and educational data systems. By improving the way we use and collect data, we will take steps towards filling the current gaps in our understanding of autism and creating new possibilities for research. To build this ADC, we will set up four 'working groups' which include people from different age, gender, racial/ethic, regional, and educational groups, as well as autistics with lived experience. All meetings will follow inclusivity and accessibility guidelines. The groups will focus on four different areas of importance: (1) the use of Canadian administrative data; (2) data collection by community organizations; (3) standardizing clinical outcomes; (4) building a national clinical registry. We will hold a Fall Symposium bringing together the groups to discuss progress, challenges, opportunities. Groups will also participate in a grant planning process to develop a research project that will tackle an important issue to Autistic Canadians. By bringing together key groups from across Canada we will build new partnerships that cross traditional boundaries, and put Autistic Canadians, who in the past have been left out of research, at the forefront.