What you need to know:
Researchers used an approach called segmentation to explore the prevalence and support needs of individuals with autism spectrum disorder (ASD) and/or intellectual disability (ID) in Quebec, Canada. Researchers estimated that approximately 1.2% of individuals in Quebec are living with ASD and/or ID. The largest reported sub-group was individuals with ID and low support needs. This and similar reports can be used to help inform resource needs. A notable difference across ages is the reported decreased rates of diagnosed ASD and ID in persons over 21 years of age.
What is this research about?
Policy makers and program planners need information to inform their decisions, including how to plan to meet the needs and required supports of service users. The purpose of this study was to understand the proportions of people with diagnoses of ASD and ID at varying levels of support for planning and policy purposes.
What did the researchers do?
The researchers used segmentation to determine the size and needs of the ASD and ID populations in Quebec, Canada. Segmentation is most commonly used in marketing practice to examine sub-groups that exist in a broader "target market." The researchers noted that this approach has been incorporated into health areas in recent years.
What did the researchers find?
The researchers gathered data from multiple sources, including peer-reviewed articles, government and policy documents, grey literature (which means items that are published outside of typical academic and commercial methods such as reports and evaluations) and information from Statistics Canada. By combining these sources of data together and using mathematical problem solving, the researchers estimated that approximately 1.2% (92,173 people) of the population in Quebec across all ages is living with ASD and/or ID. The researchers also examined the support needs of this population, further dividing them into subgroups of Low, Moderate, and High support needs categories. In the category of individuals with ASD only, which represents 40% of all individuals in the sample, 21% were noted as needing Low Support, 14% needing Moderate Support, and 5% needing High Support. For the category of individuals with ID only, which represented 50% of the entire sample, 40% were noted as needing Low Support, 6% were noted as needing Moderate Support, and 4% were noted as needing High Support. For the category of ASD with ID, which represented 10% of the total sample, 2% were noted at needing Low Support, 6% were noted as needing Moderate Support, and 3% were noted as needing High Support. The researchers further noted a larger proportion of children versus adults, and noted lower levels of support for adults. Additionally, researchers compared their finding of a high number of individuals with ID and low support needs with another report finding that 75% of individuals receiving specialized services in Quebec required moderate to high levels of support. The researchers note that this may reflect the possibility that individuals with ID and low support needs are being underserved. Rates of ASD and/or ID were 2-3% in the groups that were 21 years or less. In contrast, there was a lower prevalence of people with a diagnosis of ASD and ID in adults (22-74 years). The segmentation by level of need is a worthwhile approach; however, the authors caution that the segmentation should not undermine the complex and varying support needs for each individual.
How can you use this research?
This study aimed to provide an overview of the prevalence of ASD and ID in Quebec while also exploring the co-existence of these diagnoses; they further divided these three groups to estimate the number who would have low, moderate, and high support needs. Such an overview is an important step toward building knowledge that informs future policy, program, and research development, as well as resource allocation.
The researchers noted that their process of segmentation may not have been completely accurate due to a lack of available data or inconsistency in existing data. However, this method allowed for multiple sources of data to be collected and analyzed together to create an overall picture of ASD and ID, and service needs in Quebec.
Klag, M., & Ouellette-Kuntz, H. (2018). Market segmentation as a tool to inform health and social services policy and planning: The case of autism spectrum disorder and intellectual disability. Healthcare Quarterly, 21(2), 41-47. doi:10.12927/hcq.2018.25623
This summary was written by Christopher Kilmer, Research Coordinator, in the Vocational Abilities Innovation Lab, Faculty of Social Work, University of Calgary.