Research and Data Initiatives

On April 17, 2024, The Joyce Family Foundation announced a $5 million gift towards the creation of the National Centre for Autism Collaboration (NCAC). The Hamilton Health Sciences Foundation, McMaster University, and the Sinneave Family Foundation collaboratively matched this gift to elevate and accelerate the impact of evidence on the care and lives of Autistic people and their families across Canada.

Through the National Centre for Autism Collaboration, 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 four pillars:

  1. A Data & Science Hub will support access to existing datasets for researchers, helping to address gaps in clinical research, policy, and service delivery across the country. 
  2. A Knowledge & Evidence Synthesis Portal will catalyze projects aimed at gathering evidence that will inform best practices in autism service delivery and care based on the priorities set forth by the members of Autism Alliance of Canada. 
  3. A Policy Collaborative will unite knowledge from the members of Autism Alliance of Canada, researchers, and the broader network, into convening spaces to inform leaders, policy- and decision-makers at all government levels with current evidence and best practices. 
  4. A Training Collaborative will offer fellowships, internships and scholarships that provide pathways into autism-related work for promising scholars and clinicians.

Community-Based Participatory Research

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.
To learn more about the launch of the NCAC, click here.

Canadian Autistic Adult Needs Assessment

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.

Data-to-Policy Fellowship

The Data-to-Policy Fellowship is an opportunity for research trainees to inform autism policy and practice in Canada. Trainees will apply their skills to support the Autism Data Collaborative working groups in promoting the use of Canadian data assets.

Pandemic Canadian Autism Needs Assessment Survey

In partnership with autistic people, caregivers, Autism Speaks Canada, Autism Alliance of Canada, the McMaster Autism Research Team, and with the participation of seventeen provincial, territorial, and other autism-focussed organizations, the 2023 Pandemic Canadian Autism Needs Assessment Survey was conducted to better understand the continuing impacts of the COVID-19 pandemic on autistic adults, caregivers, and their autistic children. A report of the complete survey results is now available. Production of this report was made possible through funding from the Public Health Agency of Canada. 

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Autism Data Collaborative

Autism Data Collaborative

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.

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Developing Shared Measurement Across Community Organizations: Data Across Indigenous Communities

Part 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.

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Developing Shared Measurement Across Community Organizations: Sharing Space, Stories & Insight

Part 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.

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Leveraging Administrative Data in Manitoba to Inform Autism Policy

Part 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.

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Autism Knowledge Synthesis Initiative

The 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.

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Scoping Review of National Autism Strategies

This 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.

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Autism Data Asset Mapping Project

This 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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