Autism Data Collaborative - Autism Alliance of Canada

In October 2021, Autism Alliance of Canada launched the Autism Data Collaborative (ADC) with the support of The Azrieli Foundation. The ADC is a diverse group of members from across Canada, united to enhance the use of data to inform autism policy.

Our aim is to develop pan-Canadian research projects that address community priorities.

History

In February 2022, we established four working groups composed of Autistic self-advocates, family members, service providers, community organizations, researchers, and policymakers. These groups focused on highlighting priority areas for the Autistic and autism communities.

In June 2022, the 2022-2024 Autism Alliance of Canada Data-to-Policy Fellowship began, supported by Kids Brain Health Network, the Sinneave Family Foundation, and Autism Speaks Canada. This fellowship welcomed senior research trainees to help implement national projects aligned with insight and priorities identified by the ADC working group.

In June 2023, we hosted the Autism Data Collaborative Engagement Event to gather feedback on Data-to-Policy Fellowship projects. This event was supported by a CIHR Planning & Dissemination grant. We are proud to have been able to financially acknowledge the valuable time and insights of attendees with lived experience.

Stay Informed

Did you know that the Alliance releases quarterly newsletters with updates from the Autism Data Collaborative? See below for our most recent and previous newsletters, and sign up for the ADC if you want to receive them!

Most recent:
Autism Data Collaborative – End of Summer Newsletter

Previous:
Autism Data Collaborative – Holiday Newsletter
Autism Data Collaborative – Summer Newsletter
Autism Data Collaborative – Inaugural Newsletter

We invite you to explore the ongoing ADC projects below.

Projects

National Child Autism Waitlist Initiative

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.

National Autism Lived Experience Advisory Group

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.

Developing Shared Measurement Across Community Organizations: Data Across Indigenous Communities

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.

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

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.

Leveraging Administrative Data in Manitoba to Inform Autism Policy

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.

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.