The Public Health Agency of Canada (PHAC) recently published a report: “Autism spectrum disorder: Highlights from the 2019 Canadian health survey on children and youth.” This report provides an overview of Canadian children and youth on the autism spectrum using data from the 2019 Canadian Health Survey on Children and Youth (CHSCY).
About the 2019 CHSCY
The 2019 CHSCY explores health-related information that has an impact on the physical and mental health of children and youth in Canada. This report also includes important information about the age at diagnosis, health status, co-occurring long-term health conditions, functional difficulties and school experiences of children and youth on the autism spectrum.
This survey included the participation of 39,951 children and youth aged 1 to 17 years. Out of this group of participants, 819 children and youth were identified as having a diagnosis of autism. The data collected from this specific group of Canadian participants shows a proportion of 1 in 50 (2.0%) children and youth aged 1 to 17 years with a diagnosis of autism. Previous prevalence estimates provided by PHAC used different data sources and are not comparable to this data.
What does this report tell us?
About the prevalence of autism
While this is the most current prevalence estimate of autism provided by PHAC, it is important to recognize that this estimate is likely an under-representation of the true population prevalence of autism. For instance, the data collected here is self- or parent-reported, and does not include children and youth living on First Nation reserves and other Aboriginal settlements in the provinces. This data also excludes children and youth living in foster homes and in institutions.
Recent provincial estimates of autism diagnosis using different data sources are showing much higher rates. For example, in 2015, the reported number of children diagnosed with autism that are accessing support by the Ministry of Child and Family Services in British Columbia was 1 in 66. In the latest numbers from 2020, 1 in 37 children have been diagnosed with autism and were accessing support in BC. This is a substantial increase using the same data source.
Until there is an accurate pan-Canadian surveillance system, we have different numbers and rates based on different sources of data, such as the numbers reported in this survey.
About the health and well-being of children and youth on the autism spectrum
This report offers important information about the health and well-being of children and youth on the autism spectrum.
Compared to children and youth without a diagnosis of autism, children and youth on the autism spectrum were reported to be:
- less likely to report optimal general or mental health;
- more likely to have long-term health conditions, including attention deficit disorder/attention deficit-hyperactivity disorder, learning disability/disorder and anxiety disorders; and
- more likely to report challenges with communication, accepting change and making friends.
A significant proportion of school-aged children and youth on the autism spectrum also had special education needs.
Overall, this report indicates that children and youth on the autism spectrum need specialized support and services. Information from this report can be used for advocacy efforts, to increase awareness about the needs of children and youth on the spectrum, as well as to inform public health policy.
Surveys such as the 2019 CHSCY provide snapshots of information that can be used in advocacy efforts and for policy makers to begin understanding the needs of children and youth on the autism spectrum.
As we look towards a National Autism Strategy and advocate for more robust disability policies at the pan-Canadian and provincial/territorial levels, there is an urgent need for a comprehensive surveillance system to accurately monitor trends of autism and other neurodevelopmental conditions. Accurate prevalence and incidence rates and trends are critical to effectively plan supports and programs in health, social and educational sectors.
Moreover, efforts to include vulnerable populations who are historically excluded in population surveys are needed. Without accurate information, there is a risk that the persons who require support the most will fall between the cracks.