This text is part of the special Research section
Almost a year after its creation, the Observatoire québécois de l’autisme, launched in April 2022, continues to develop and collect data with the aim of painting a portrait of people with autism in Quebec to better understand the challenges they face. they meet.
“When we look at the issue of autism in Quebec, one of the issues we encounter is that we have very little data,” explains Catherine Des Rivières-Pigeon, professor in the Department in Sociology from the University of Quebec in Montreal and Director of the Research Team for the Social Inclusion of Autism (ERISA).
“We don’t know precisely how many people with autism there are, what their profile is and what their difficulties are in accessing services. What we want to develop with the Observatory is a tool by and for the community, that is to say autistic people and parents of autistic children,” she adds.
The Observatory was created in the spring of 2022, in partnership with the Quebec Federation of Autism and the Montreal IT company Videns Analytics. The Quebec Federation of Autism brings together all community organizations related to autism in Quebec. Their mission is to promote the rights of people with autism.
The company associated with the project, Videns Analytics, is an SME specialized in data management and artificial intelligence (AI). She is currently working on the development of a conversational agent (chatbot) to interact with autistic people who register on the platform. This tool, still at the prototype stage, will be adapted to the communication challenges that some autistic people may experience, and allows them to communicate with the Observatory to the maximum of their abilities.
The data is collected by the Observatory using the participatory production method (crowdsourcing) which uses questionnaires to which the data subjects respond voluntarily. During its first year of existence, more than 900 participants registered and answered the Observatory’s questionnaire, which has been online since April 2022 and can still be completed.
“We will soon be able to make the results public,” says Catherine Des Rivières-Pigeon. The advantage of having a database is also the possibility of ensuring long-term follow-up. We will therefore be able to follow the people who register with the Observatory over the years to see how the situation of each evolves. We hope to have as many registrations as possible, because we will have more results that will allow us to paint an accurate portrait of the community. »
Several topics interest the team of this health sociologist, who works from a social perspective of autism. Its team includes scholars from different disciplines, such as sociology, psychology and psychoeducation, who pursue different research projects.
“For example, we are interested in the question of access to employment,” she says. How many adults with autism are employed? How many mothers of autistic children have been forced out of their jobs? Having a database will help us set priorities on which to work to improve the lives of people with autism. Our most important issues relate to access to employment, poverty and stigma, among others. »
Challenges and needs of people with autism
The inclusion of autistic people in society is one of the subjects that is close to the heart of Catherine Des Rivières-Pigeon, herself the mother of two young adults with autism. “I hope to further develop our questionnaire around this question, and the vision that people with autism and their families have of inclusion. »
Since the creation of the Observatory, the Quebec Federation of Autism has mainly focused on the most pressing challenges of the community.
“What they told us is that one of the main issues is access to services of all kinds: particularly in relation to school, support, psychoeducation, in relation to the distress experienced by families, says the researcher. With the data we collect, we will be able to better understand what the community is going through. What is most urgent is for society and political decision-makers to realize the magnitude of the needs. »
A video game for autistic children
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