Surveillance of autism spectrum disorder (ASD)

Discover how autism spectrum disorder (ASD) is monitored.

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How many people are living with ASD in Canada?

In Canada, there has been an increase in the prevalence of ASD.

A 2010 Canadian study of select provinces found that approximately 1 in 94 children has a diagnosis of ASD. Overall, current studies show that boys are almost 5 times more likely to receive a diagnosis of ASD than girls.

How does Canada monitor ASD?

It is not yet possible to accurately report on the prevalence and incidence of ASD for Canada as a whole. Surveillance is required to obtain these data.

Public health surveillance is a core public health function. The cycle of surveillance involves the:

  • tracking and forecasting of a health event or determinant through the ongoing collection of data
  • integration, analysis and interpretation of these data into knowledge products
  • distribution of knowledge products to those who need it and can take necessary action or respond to the findings

National ASD Surveillance System

Currently, there is no comprehensive, comparable, national-level data available on ASD in Canada, although repositories of data across Canada exist. Developing a national surveillance system will help improve the information and evidence-base needed to help Canadians.

The National ASD Surveillance System (NASS) aims to address the impacts of ASD, such as health and social effects. It is being developed to track ASD among children and youth first and will eventually include adults living with ASD.

Tracking ASD will include national and regional case and rate estimates and key patterns and trends. NASS will provide the evidence to inform planning of:

  • services
  • research
  • programs

The results will impact Canadians living with ASD as well as their families and caregivers.

Governance

The development and implementation of NASS is supported by a PHAC secretariat. NASS is guided by the advice of an ASD surveillance advisory committee. The committee comprises experts from across Canada in the areas of:

  • surveillance
  • diagnosis and intervention
  • education and knowledge policy
  • education and knowledge translation

This committee also includes representatives from national stakeholder organizations.

Data sources

NASS is possible only through the collaboration of stakeholders, data holders, and key experts in provinces and territories across Canada.

Where possible, provincial and territorial partners contribute standardized data to NASS for a comprehensive picture of ASD across Canada. These anonymized data are based on existing administrative databases. In some cases, the data are linked from multiple sources, such as the health, education and social services sectors.

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