I will be splitting my time with the hon. member for Toronto—Danforth, Mr. Speaker.
I appreciate the opportunity to speak today about autism spectrum disorders.
The Government of Canada recognizes that autism spectrum disorder, or ASD, has serious health, social and financial consequences for individuals and families. Indeed, we must all be prepared for the challenges presented by the increasing number of children being diagnosed with ASD if we are to help them live healthier and more productive lives.
I acknowledge the effort across the country to support those who living with ASD. Often, much of the support comes from the health care, education and social services sectors. While these domains are under the responsibility of the provincial and territorial governments, federal investments in data collection, in research and innovations, and in skills training contribute to the improved services and programs.
An essential aspect in supporting these front-line efforts is obtaining a clear understanding of the magnitude and characteristic of ASD, both across regions and over time.
Many of us know there are public concerns about increases in the number of Canadian children and youth with ASD. While research supports the conclusion that ASD diagnosis are rising, we do not currently have comprehensive data for Canada. Thus, we lack the building blocks nationally that will allow us to accurately report on how many people are living with autism and how many new cases are emerging.
This is a gap that the governments are working together to address, and the work is well under way. Complete valid, timely, and representative prevalence estimates on the number of Canadians with ASD are needed to take an informed and calculated action. This is why we are building the national autism spectrum disorder surveillance system, or NASS. The NASS is led and coordinated by the Public Health Agency of Canada in partnership with provinces and territories.
This system collects anonymized annual information on children aged five to 18 who have ASD. The information is from a range of sources, including administrative records from health, education, or social services sectors. The complexity of this undertaking means that we must work in co-operation with different levels of the government and across sectors.
At its core, the NASS is a collaboration of federal, provincial and territorial governments, working together with other stakeholders, to build a comprehensive pictures of ASD in Canada.
For example, in my riding of Richmond Hill, we will soon be opening a centre in support of autism. It will be opened by Reena, a non-profit organization that promotes dignity, individuality, independence and personal growth, and community inclusion for people with development disabilities, including autism.
The key objectives for NASS surveillance system are: to estimate how many Canadians have ASD and how many new cases are emerging over time; to describe the population of Canadians with ASD and compare a pattern within Canada and internationally; to better understanding the impact on Canadians with ASD; to increased public awareness and understanding; and to informed policy and program decision making.
As noted earlier, the development of NASS is a substantial undertaking that continues to depend on the engagement and collaboration within a wide range of partners. Consultation with provinces and territories and with ASD stakeholder communities, as well as extensive study of the provincial and territorial data sources, have been essential to progress in developing and implementing ASD surveillance.
The Public Health Agency of Canada put in place an external advisory committee to guide the work on NASS, made up from experts from across Canada. Members include provincial representatives, clinicians, policy experts, and the stakeholder groups representing the interest of those living with ASD and their families.
Based on guidance from this advisory committee, the initial focus is on tracking ASD among children and youth. The work is critical and complete and timely information on autism trends remains key to informing program delivery to support families.
In developing the NASS, we are also cognizant of the unique needs and circumstances of individual provinces and territories. As part of the program design, the Public Health Agency used a collaborative and phased approach to support provinces and territories in joining the NASS. This ensured that the national ASD surveillance objectives would be met and the information needed for jurisdictions would be addressed.
The process also accommodates varying states of jurisdiction readiness. The reality is that there is significant diversity in capabilities to participate.
Because of this, the Public Health Agency of Canada has engaged provinces and territories based on their current data system. In many cases, this has involved supporting them with a preliminary feasibility and validation project.
In terms of data collection, participating provincial and territorial partners will collect and share this information with the Public Health Agency at periodic intervals for inclusion in the NASS. While ownership of collected data resides with the provinces and territories, the federal Public Health Agency plays an important stewardship role. Experts review data quality, generate analyses, and provide interpretation in order to support public reporting on the state of ASD in Canada. In doing so, the NASS will provide the evidence to inform critical planning of programs, services, and research. That will make a difference for Canadians living with ASD, their families, and their caregivers.
The national ASD surveillance system illustrates the solid partnership among federal, provincial, and territorial governments to improve data and to use data to drive decisions and actions. Presently, seven provinces and territories are on board and work is under way to recruit additional jurisdictions. Complex surveillance systems like this one take time and resources. Their impact, however, is substantial.
A major milestone will be reached in 2018. The first public report for ASD prevalence in Canada is planned for release. Shortly thereafter, we look forward to a comprehensive implementation of NASS as we get closer to the full provincial and territorial participation, surveillance capacity and infrastructure development, and expansion of surveillance to adult population.
We must constantly remember that all collaborative efforts are targeted to ultimately help children and families affected by ASD. This clear federal leadership role is filling a gap that is foundational for all ASD stakeholders.