Funded Projects 2022
Breaking Down Barriers:
Equitable Healthcare for People on the Autism Spectrum
Minority-language speakers face healthcare disparities. These disparities occur in accessing and receiving healthcare services compared to those who speak a majority language in their area. However, we know little about the barriers faced by autistic minority-language speakers.
To investigate, a partnership was formed drawing on strengths from community representatives and researchers. A team co-led by postdoctoral researcher Myriam Beauchamp and neuropsychologist Julie Scorah and in partnership with Dr. Jonathan Lai Executive Director of Autism Alliance of Canada (previously known as the Canadian Autism Spectrum Disorders Alliance), will address two main questions. Do autistic individuals who are minority-language speakers experience barriers in accessing healthcare services? Is there a difference in the quality of the healthcare services they receive?
Partners include the Autism Alliance of Canada, researchers from McGill and Dalhousie University, caregivers, autistic adults, and clinicians. All are minority-language speakers or work with autistic individuals who are minority-language speakers.
“Our findings will potentially lead to concrete improvements in the ability of people on the spectrum who are minority-language speakers to access and receive healthcare services that are equitable.”
The aim is to capture the lived experiences of autistic people through focus groups. These will include caregivers and autistic adults who are all minority-language speakers. Other stakeholders will take part, including clinicians, administrators, and community groups who work closely with autistic people who are minority-language speakers.
The project’s findings will inform decision-makers about the barriers to accessing healthcare and help increase equity in the healthcare system between majority and minority-language speakers across Canada.
If Music be the Food of Love:
Appreciating Concerts through Diverse Lens
If music be the food of love, play on! Yet, could the audience experience be different at traditional versus inclusive concerts? Particularly for neurodivergent audience members? This is what a partnership between the Orchestre symphonique de Montreal (OSM) and McGill’s Behaviour, Autism, and Neurodevelopment (BAND) Research Group seeks to understand. The goal is to respond to the needs of the neurodiverse community by evaluating the experience of concert goers, and making the necessary adjustments.
The project stems from a meeting of Mélanie Moura, Head of Youth Programming and Mediation at OSM, and Dr. Eve-Marie Quintin, Director of the BAND Research Group. In 2021, they started exploring the idea of studying audiences’ appreciation of inclusive concert experiences. Dr. Quintin invited Cassiea Sim, an autistic graduate student in the BAND Research Group, to contribute to the study. The OSM and the BAND Research Group have been working together ever since.
At the centre of the project is a question of accessibility. The project stems from a community request to increase the accessibility of OSM concerts. The aim is to assess audience members’ use and opinions of the accommodations offered by the OSM, particularly for neurodivergent audience members. This will occur in two concert settings: traditional and inclusive.
“Key stakeholders are involved in planning concert accommodations. This includes a musician and parent of an autistic child, a music therapist and teachers, and dance therapists who work with neurodiverse populations.”
A post-concert survey was created to assess the audience’s appreciation of the musical repertoire and of the concert’s inclusivity and accessibility accommodations. The survey will be sent to the audience after each concert. The plan is to have knowledge translation activities to share findings with the community. There will also be a video produced with Spectrum Productions. The video will feature the lived experience of neurodivergent audience members and research findings. It will be accessible online and on social media. The OSM will consider making permanent changes to is concert experience based on the results of the study.
Passions and Employment in People with Autism
Find a job you love, and you will never have to work. The saying, attributed to Confucius, is an aspiration. Can it be applied? Perhaps.
Béatrice Cuzzi, mother of an autistic young adult and founder of Service d’Inclusion Professionnelle des Personnes Autistes, reached out to Professor Isabelle Soulières at the department of Psychology of the Université du Québec à Montréal to see if there could be a better way to support people with autism seeking employment. At the time, Professor Soulières was working on a research project examining the relationship between passions and well-being with Professor Ève-Line Bussières at the department of Psychology of Université du Québec à Trois-Rivières. Drawing on their partnerships, the three themed up to jointly develop a research project to understand the links between interests, passions and employment for people with autism.
The team will explore two main questions: Does a strong link between an autistic individual’s passions and job facilitate better quality of life? Which skills, developed through their passions, could contribute to their professional life? The questions are all the more important as people on the spectrum experience low employment rates (about 20% in Quebec).
The project is inclusive of young members of the autism community throughout. A group of 109 autistic youths, aged 14 to 30, will take part in interviews led by a young autistic researcher on themes related to their interests, passions and jobs.
“Not having a job, in contemporary society, is almost synonymous with social exclusion. Hence our desire to propose a new approach to facilitate the transition from studies to employment. An approach based on the strengths and passions of people with autism.”
One of the goals of the project is to propose solutions and share knowledge with a broader community of employers, helping them be better informed and equipped to welcome and support neurodiverse employees in their professional environments.
A Room of One's Own:
Supporting Housing and Planning Initiatives for Autistic Adults
There is a lack of housing resources for autistic people. And with few options available to address the wide range of needs of autistic individuals in housing, Isabelle Courcy of the Université du Québec à Montréal (UQAM), and Xavier-Henri Hervé of The Autism House, realised that part of the solution is better and more accessible information.
In collaboration with community members, including autistic adults and the Fédération québécoise de l’autisme (FQA), they will produce knowledge translation material for a diverse audience. They will share results on the housing needs and preferences of autistic Quebecers identified in the first phase of the research project, which consisted of a questionnaire developed with and filled out by people with autism.
“This project is an important step in improving the quality of life of adults with autism. In addition, the project places the perspective of the people directly concerns at its centre.”
The team plans to share their insight through visual and audio materials, including three short videos pairing testimonies from autistic individuals with research results, and a podcast with the main researcher. They will also provide two accessible articles, a summary of research results, and summary sheets to facilitate action and decision-making.
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