Faced with these different observations, we wanted to understand how spaces for exchange between peers could meet the social support needs of parents of autistic children and contribute to their psychological well-being. To do this, in 2017, we conducted a needs study that would allow us to be well equipped to develop a platform that can offer social support.

The study was carried out as part of a collaboration between the team from the research center on communication and health, ComSanté, and the CHU Sainte-Justine. Our research team consisted of Lise Renaud, Monique Caron-Bouchard and Alena Valderrama.

With funding from the Social Sciences and Humanities Research Council (SSHRC), we consulted with parents of autistic children to develop an online support model.

The parents consulted, although they could already be a part of certain groups on social media, expressed their desire to be able to access a web space offering both:

. an informative section intended for the general public, and

. a private section for parents

Parents also emphasized the confidentiality and complicity of a “private component” that would give them the freedom to share their emotional state and their experiences in a caring, respectful, rewarding and comforting environment.

These words of a parent consulted sum up our needs study well:

“Before taking care of the children, let’s take care of the parents.”

In 2016, our team welcomed autistic experts in order to adopt a participatory research approach. Adhering to the values ​​of respect, trust and equality, we have developed inclusive work practices that recognize the experiential and academic knowledge acquired by everyone. This allowed us to involve our autistic collaborators in all stages of the projects and to set up a true shared decision-making process.

In 2021, our team partnered with Humanov·is, an organization that brings together organizations around projects aimed at improving people’s living conditions.

This partnership made it possible to get funding from the Ministry of Economy and Innovation for the development of a web platform.

We then formed a committee of partners. This committee had the role of advising us during the development of the project, in order to adequately meet the needs of the parents.

It was composed of members from the following organizations:

• L’Hôpital en Santé Mentale Rivière-des-Prairies du CIUSSS du Nord de l’Île de Montréal (CIUSSS NIM)
• L’organisme des personnes autistes Aut’Créatifs
• Le CIUSSS Centre-Sud-de-l’Île-de-Montréal (CCSMTL)
• Le Centre intégré universitaire de santé et de services sociaux de la Mauricie-et-du-Centre-du-Québec (CIUSSS MCQ)
• L’Institut universitaire en DI et TSA
• Le Centre Intégré du Réseau en Neurodéveloppement de l’Enfant (CIRENE)
• La Fédération québécoise de l’autisme (FQA)
• La Fondation les petits trésors

As we developed the web platform for parents, we also documented the social support needs of autistic people. Social support by and for autistic people can be a protective factor in their mental health. We also checked the acceptability of structured peer support services to meet these needs.

We then carried out a pilot study with support groups of autistic people. This pilot study obtained positive results.

Following these preliminary studies, we obtained funding from the Public Health Agency of Canada to develop a social support program for autistic people.

The program involved developing a social support space and peer-help services through a web platform.

The website also makes available an autism social support training program. This program is intended for autistic peer helpers and any other person accompanying an autistic person.

The stigmatization of autistic people and their families is recognized as a social determinant of health. Because the stigmatization of autistic people has significant consequences on their lives, we have also produced a portrait of the situation of autistic people and their families in Québec.

This portrait led us to develop tools to improve the autism literacy of different population groups.

These projects were funded by the Office des personnes handicapées du Québec and by the Réseau national d’expertise en trouble du spectre de l’autisme (RNETSA).

The knowledge acquired during this project confirmed the relevance of developing the site and a Web platform.

Thus, the website notably makes available a training program intended for health professionals.

This program aims to develop services and care that reduce stigma and empower autistic people and their families.

For all aspects of the project, we rely on experiential knowledge and rapid spreading of knowledge (MOOC) as well as on the health behaviour change model (ECHO).