Autism Alliance of Canada conducts and supports autism health services and policy research in priority areas identified by Autistic people and those who support them. Our research and data initiatives will generate evidence that can shape inclusive policies that address the diverse needs of Autistic persons and their loved ones.
These initiatives fall under five pillars:
Within each pillar, we strive to center the experiences of Autistic people and their loved ones, with community-identified priorities guiding us. We work towards the production of high-quality evidence and data that can inform system-level policy change and guide the development and implementation of the National Autism Strategy. We do this by:
• Partnering with Autistic people and their families, researchers, clinicians, and service providers, to develop research projects guided by community priorities.
• Advancing pan-Canadian collaborations.
• Leading and supporting multi-regional grants and national studies.
• Connecting policymakers and researchers to conduct research that can inform system change.
• Building training capacity for neurodiverse research trainees to be equipped to lead autism research.
• Generating community-based data.
Autism Alliance of Canada is partnering with the McMaster Autism Research Team on the Pediatric Autism Research Cohort (PARC) study. The PARC study aims to understand how children on the autism spectrum grow and develop. The insights gained from this study can help advocate for supports that can help Autistic children reach their full potential.
The Autism Data Collaborative consists of individuals with personal experience, researchers, healthcare providers, policymakers, and community leaders from all over Canada. Together, they aim to utilize and create Canadian health, social, and education data to influence improved policies and enhance systems, ultimately making the lives of Autistic people in Canada and their families better.
The Autism Data Collaborative consists of individuals with personal experience, researchers, healthcare providers, policymakers, and community leaders from all over Canada. Together, they aim to utilize and create Canadian health, social, and education data to influence improved policies and enhance systems, ultimately making the lives of Autistic people in Canada and their families better.
Read morePart of: Autism Data Collaborative
The National Autism Waitlist Initiative aims to make it easier to get data about how long people have to wait for autism assessments and diagnoses in Canada. This information will help make the system better and get more support from the government to shorten wait times for autism evaluations.
Read morePart of: Autism Data Collaborative
The aim of this project is to enhance the participation of Autistic people in research and policymaking. This will be achieved through the formation of a National Lived Experience Advisory Group, which will center the perspectives of Autistic people and guide the Alliance based on community-identified needs.
Read morePart of: Autism Data Collaborative
This project gathers stories from two First Nation communities their experience with autism. The goal is to meaningfully engage with the community, creating supportive environments, and considering the unique strengths and challenges of Autistic people. By understanding their needs, we can enhance their sense of belonging, well-being, and increase their involvement in research.
Read morePart of: Autism Data Collaborative
This pilot project has the goal of creating a databank for information about housing for Autistic adults across Canada. Housing is an important issue for the community and this information can help policy makers understand the needs of Autistic people and create better policies that can support them in finding suitable housing options.
Read morePart of: Autism Data Collaborative
This project will use administrative data in Manitoba to investigate the health, social and educational needs of autistic people living in Manitoba. We will also investigate gaps and strengths of administrative data in conducting this type of research involving autistic people and build relationships with researchers and clinicians working in this area in Manitoba.
Read moreThe Autism Knowledge Synthesis Initiative is a partnership with the Strategy for Patient Oriented Research Evidence Alliance. It brings together researchers, autistic persons, care givers, healthcare providers, and policymakers to work on research projects that summarize the best available research on priority topics to the autism community. They work together to gather and use the best available evidence to improve the health and well-being of Canadians.
Read moreThis scoping review analyzes autism policies in countries that agreed to the United Nations Convention on the Rights of Persons with Disabilities. The goal is to find out what these policies are and use the information to help create international policy recommendations through Autism Alliance of Canada's International Autism Policy Initiative.
Read moreThis project is an environmental scan of Canadian databases used for autism research that can inform policy and practice. This resource summarizes databases that can be used by researchers, trainees and policy makers and inform autistic persons and their loved ones of information sources that can help in their advocacy efforts.
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Autism Alliance of Canada, partnering with McMaster University, is conducting a survey of Autistic adults (age 30 years and older) across Canada to better understand their needs. This information will be used to inform rights-based autism policy that prioritizes the lived-experience of Autistic adults.
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