Autism Together Community
Autism Together Community is a secure, confidential and anonymous online community for people concerned with autism. It is intended for autistic people themselves, their parents and their caregivers.
The online community provides a place for them to find each other and network with others in similar situations. It allows them to share experiences, ideas and emotions.
Our online community aims to be respectful, inclusive and non-directive. It’s based on empathy, kindness, and mutual acceptance.
Autism Together Community is a social innovation project carried out in partnership with Humanov.is and a group of researchers, autistic people and health professionals.
It is directed by Doctor Alena Valderrama, a researcher with research privileges at the CHU Sainte-Justine Research Centre.
Our group is called SMIS for: Santé Mentale et Inclusion Sociale.
We conduct research projects to assess and improve Autism Together Community.
Our projects have received approval from the CHU Ste-Justine Research Ethics Committee:
- Soutien social entre pairs autistes, numéro de certificat 2023-4442
- PASSS (Pouvoir d’agir et soins sans stigma), numéro de certificat 2022-3537
- Autism Together Community, numéro de certificat 2023-4058
After registering with the online community, we invite new members to participate in one of our research projects.
If you become a member and agree to participate, we will ask you to sign an information and consent form.
Our history is made up of different research projects. Each of them has allowed us to better understand the needs of autistic people, their parents and those around them. This deep understanding of their needs led us to develop the Autism Together Community website and online community.
It all starts with important observations
In 2014–2015, when the project began, the province of Québec had nearly 17,000 autistic people aged 1 to 17 who had been diagnosed with ASD, Asperger’s syndrome or PDD.
Caring for an autistic child can be demanding for parents. In fact, more than half of the parents of an autistic child experience distress, mental health issues, such as depression and anxiety, or physical health issues. They also face significant social and economic challenges.
A common need among parents: social support
To deal with these various health problems and challenges, parents of autistic children need support. In fact, they need social support.
What exactly is social support? Social support is having a sense of belonging and knowing that other people care about us. Receiving and offering support helps to protect people’s mental health. When support is shared among peers, it can also promote empowerment.
Web spaces for peers: a way to get social support
An effective way of bringing together people in similar situations is to create web spaces. Spaces for discussion between peers on the Internet are increasingly used, particularly by people struggling with chronic illnesses and by caregivers.
A study to better understand the needs
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.”
Essential partners to meet the needs of 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
Another need: social support among autistic people
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.
A need: to promote the acceptance of autistic people
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.
A Web platform in response to different needs
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).
Our team brings together a diversity of professional expertise and life experience. It includes:
- Researchers and specialists in public health, mental health, service organization, communication and peer help
- Autistic people
- Parents of autistic people
By addressing the social determinants of health, our projects aim to contribute to improving the quality of life of autistic people and their families.
As the flagship project of Autism Together Community is an online community, member participation is rewarding. All autistic people, their parents and caregivers are invited to the community. The more you participate, the livelier our community is!
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