Registration is now open for the 10th Annual Canadian Autism Leadership Summit! Click here for more info

National Autism Waitlist Initiative

  1. Autism Data Collaborative

Background

Autism Alliance of Canada is committed to improving the health and well-being of Autistic people in Canada by advancing bottom-up system change in priority areas. One of the most pressing challenges facing the Autistic community at large is lengthy wait times to access autism assessment and diagnosis across Canada.

Reducing wait times begins with accurate measurement so that actual wait times can be compared across regions and jurisdictions, benchmarks can be established, progress can be monitored, and resources can be effectively allocated. These data can help inform policymakers of the urgency of addressing wait times in a timely manner, highlight barriers and challenges clinicians face in providing timely care to children and families in need of assessment and diagnosis, and ultimately improve the efficiency of our health system.

The National Autism Waitlist Initiative seeks to create standard wait time metrics so data can be collected in a consistent and unified way to support system improvement and federal investments to reduce lengthy wait times in Canada.

Headshot of Angela MacDonald-Prégent

Angela MacDonald-Prégent
Data-to-Policy Fellow

Project Description

The National Autism Waitlist Initiative (NAWI) aims to standardize wait time metrics and collect and synthesize wait time data from provinces and territories across Canada on a community dashboard. This initiative will inform national-level policy and support the reduction of wait lists for autism diagnosis in order to improve health equity. 

This is a CIHR funded initiative that is co-led by Dr. Deepa Singal, Dr. Melanie Penner and Angela MacDonald-Pregent. Clinical leads and various key parties (funders, policymakers, and persons with lived experience) have been recruited to enact this high-priority initiative.

Community Engagement

In April 2023, Autism Alliance of Canada hosted the Autism Data Collaborative Engagement Event, where members were invited to provide feedback on priority items that will inform the future of this project. During the NAWI engagement session, we discussed the reasons why pediatric autism assessment takes so long and what health professionals and administrators involved in autism assessment could do with existing resources to decrease wait times. Further, we discussed which type of data can be collected to make others understand the urgency of this situation.

Building upon the feedback received, the NAWI team will explore how diagnostic sites collect data on:

  1. The pre-referral period as it likely reflects another period of waiting that is currently not captured.
  2. Race and gender to highlight potential inequities in diagnostic system.
  3. The rate of autism diagnoses per site to see the proportion of referrals that yield “Yes – Autism” versus not. Also, capturing the details on the children who did not receive an autism diagnosis (e.g., neurodiverse but not autistic) would also be important to explore.

Get involved

Sign up as a member of the Autism Data Collaborative to receive updates, event notifications, and opportunities to engage.