Building an Autism Spectrum Disorders Surveillance System for Canada

Recent international reports of higher rates of Autism Spectrum Disorders (ASDs) have raised considerable interest in Canada among community professionals, researchers, policy makers, parents and individuals with ASDs. There is broad agreement that Canadians must prepare for the challenges presented by a growing number of children diagnosed with ASDs in order to help these children reach their full potential. One of the foundations needed to assess the health and well-being of those living with ASDs and other developmental disorders is reliable surveillance information - a system that collects and tracks over time information on the number and characteristics of people who develop such a disorder, the risk and protective factors, and treatments and services.

This type of surveillance informs programs, practice, services and policies that help those living with ASDs and other developmental disorders.

A National Surveillance System for Developmental Disorders

The Public Health Agency of Canada (the Agency) is committed to developing a national system of surveillance of developmental disorders, with an initial emphasis on ASDs in children.  The purpose of this new surveillance system is to provide reliable information to:

• estimate how many Canadians are living with these disorders (prevalence) and how many new cases are emerging (incidence) for ASDs and other developmental disorders;
• track the changes in incidence and prevalence over time;
• identify potential risk factors;
• describe the population of Canadians living with developmental disorders;
• better understand the impact on Canadians living with developmental disorders, their families and caregivers;
• compare patterns of all the items above within Canada and internationally;
• increase public awareness and understanding of ASDs and other developmental disorders;
• help professionals develop programs and improve their practice and services to Canadians living with ASDs and developmental disorders; and, 
• guide policy development.

The Autism Spectrum Disorders Advisory Committee

To help guide the development of a national surveillance system of ASDs and other developmental disorders, the Agency established the Autism Spectrum Disorders Advisory Committee to advise on the most effective approaches to capture data on ASDs across Canada.

National experts from the specialized areas of surveillance, government and policy, diagnosis and treatment, education and knowledge translation, as well as representatives from national stakeholder organizations (representing individuals and families living with ASDs) are members of this committee.

The inaugural meeting of the Advisory Committee took place in Ottawa in March 2012 under the leadership of Dr. Anthony Bailey (University of British Columbia). Members will serve on the committee for an initial two-year period and advance their work by participating in meetings or teleconferences.

Two working groups have been formed under the committee:

1. The Surveillance Working Group will advise on issues related to surveillance methods, data collection, analysis and interpretation of the data.
2. The Knowledge Translation Working Group will assist with communicating information to the public as the surveillance system is developed and implemented.

Advisory Committee members and the organizations they represent will assist the Agency to communicate information from the surveillance system to the broader community of Canadians with an interest in ASDs and other developmental disorders.

Working Towards a National Surveillance System

The Agency recognizes the wealth of expertise and knowledge on ASDs and developmental disorders that exists across Canada.  Over the past year the Agency has been consulting and collaborating with our partners in the provinces and territories, and with non-governmental experts and organizations across the country in the areas of health, education and community and social services. Through these consultations the Agency hopes to better understand the priorities for surveillance, to determine the best ways to include the information that already exists, and to build a national surveillance system.

The Agency recognizes that there is already a great deal of activity across the country supporting those who are living with ASDs and other developmental disorders. There are a number of eminent Canadian researchers who contribute to an international body of knowledge. Specialists diagnose, treat and provide services to affected Canadians and there are a number of existing repositories of data and information across the country. Most of this activity is in the fields of health care, education and social services - all domains that fall under the responsibility of provincial and territorial governments. Although, these provincial and territorial programs all share the goal of identifying, treating and supporting affected Canadians, they have been developed independently of each other, and there are significant differences between them.

As a first step the Agency has undertaken an Environmental Scan to map the approaches and activities that each province and territory uses to establish diagnoses, provide programs and services, and to manage case records. This Environmental Scan is nearing completion and the results for all but two provinces and territories will be available early in 2013.

The next step in developing the surveillance system will be to implement a series of pilot and feasibility studies in specific provinces and territories These studies will be based on the information gathered through the Environmental Scan and will be designed to further explore optimal surveillance option(s) and to define standards such as a surveillance case definition, a minimum dataset and processes to ensure data quality, standardization and security.  
Information from the scan and pilot studies will be used to establish a surveillance framework that describes the most efficient and effective surveillance system for national surveillance of ASDs.

Timelines

The development work on this national surveillance system will take place between 2012 and 2015. Initiation of the national system is anticipated for 2014 with broader implementation immediately following successful field tests. Work will continue after initial implementation in order to expand the database to include information on all age groups and additional types of developmental disorders.

Contacts

For more information on national surveillance of autism and other developmental disorders please contact ASD-TED@phac-aspc.gc.ca

Last Updated

September 25, 2012