The Experiences of Social Exclusion and Inclusion Among People Aging with Neurodiversity and Their Families
Merci pour votre intérêt! (Voir cette page en français)
Welcome to the website for the community-based research project “The Experiences of Social Exclusion and Inclusion Among People Aging with Neurodiversity and Their Families” (2020-2024). This research was funded by the Fonds de recherche du Québec – Société et culture with the financial support of the Ministère des Affaires municipales et de l’Habitation (MAMH), the Ministère de l’Immigration, de la Francisation et de l’Intégration (MIFI) and the Ministère de la Santé et des Services sociaux (MSSS) as part of the program Actions concertées.
Our research project explores experiences of social exclusion and inclusion among neurodiverse older adults and their family caregivers in Montreal and Quebec City. Our goal is to collect people’s stories about their experiences of growing older, their housing realities and needs, and their social networks and supports. We will also speak with service providers to gain their perspectives on the realities and challenges facing older adults living with neurodiversity and their aging family caregivers.
On our website you will find information about our project and the findings that emerge from our discussions with older people living with neurodiversity (45+ years old), their family caregivers (parents and siblings), and the service providers who work with them. This information is in the form of infographics, policy and practice briefs, informational videos including a video of the performance Neurodiversity! Age together, Act together created by La Gang à Rambrou (Jasmine Allan-Côté choreographer and director) and Sans Oublier le Sourire accompanied by a toolkit (sensitization and training – coming soon!) along with a list of publications and presentations. The website will evolve as we undertake our work so please stay in touch with us!
Our objectives
1. Collect and share the life stories and experiences of older adults and their families in a way which honours their diverse experiences and realities;
2. Develop recommendations that are grounded in people’s experiences and perspectives;
3. Contribute to the development of inclusive policy and practice across sectors;
4. Advocate for programs and policies that better address the realities of, challenges facing, and agency enacted by neurodiverse older people and their family caregivers.
Infographics
Infographic Booklet Summary
In short, easy to read paragraphs, this summary document describes the content of the Infographics in our Infographic Booklet.
Download the summary: English | French
Infographics
Infographic Booklet
Infographic Booklet Summary
In short, easy to read paragraphs, this summary document describes the content of the Infographics in our Infographic Booklet.
Download the summary: English | French
Neurodiversity! Age together, Act together
Performance & Toolkit
Performance
La Gang à Rambrou and Sans Oublier le Sourire, two community-based organizations working with neurodiverse people, joined forces to highlight the life experiences of the 21 people aging with neurodiversity aged 45+ who were interviewed as part of the research project in Montreal and Quebec City.
Drawn directly from the quotes of neurodiverse older adult (NDOA) participants, their stories took shape on stage in words and movement through artists who are themselves aging with neurodiversity.
At times poetic, at times poignant, the performance leads us to think about what it means to age with neurodiversity, highlights strengths and resilience, and examines the challenges facing NDOA within schools, workplaces, the health and social service system, housing, and in society in general. It also includes important themes related to: identity, strength and resilience, mental health and addictions, mistreatment, lack of control over daily life, caregiving, and the important role of community organizations.
Choreographer and director: Jasmine Allan-Côté
Toolkit
This Toolkit is intended to be used by and with people living with, and aging with, neurodiversity of any age, family and friend caregivers, service providers, managers and policy makers, and students.
It is meant to guide reflection, learning, and action using the video recording of the performance Neurodiversity! Age together, Act together for inspiration.
Worksheets
Video coming soon
Life Stories
The life stories presented here in both written and podcast form are examples of the 36 stories collected during our research project (21 people aging with neurodiversity and 15 family caregivers (parents and siblings). We hope they serve to demonstrate the richness, depth, and diversity of people’s experiences across the life course and into old age. We are planning to publish the full collection of stories in their entirety in the coming year so please keep in touch with our website for updates.
Podcast coming soon
Tina's story
Tina is a research participant aging with neurodiversity. Click here to read Tina’s story, or click the image at left to hear a podcast version (coming soon).
Podcast coming soon
Audrey's story
Audrey is a research participant aging with neurodiversity. Click here to read Audrey’s story, or click the image at left to hear a podcast version (coming soon).
Podcast coming soon
Dadou's story
Dadou is a caregiver (parent) research participant. Click here to read Dadou’s story, or click the image at left to hear a podcast version (coming soon).
Podcast coming soon
Luce's story
Luce is a caregiver (sister) research participant. Click here to read Luce’s story, or click the image at left to hear a podcast version (coming soon).
Short Videos and Discussions
The videos and interviews available on the website present key issues related to challenges experienced by neurodiverse older adults and their families and potential ways to address social exclusion in society generally and within the sectors serving people aging with neurodiversity and their family caregivers. Videos and interviews are directed towards the general public, as well as service providers and policy makers across sectors.
Video coming soon
This short video will present definitions of key terms and concepts used in our research (coming soon).
In this informal discussion, principal investigator Shari Brotman and co-investigator Laura Pacheco discuss the project The Experiences of social exclusion and inclusion among people aging with neurodiversity and their families with journalist Eugénie Émond. This discussion took place as part of the symposium Agir sur la marginalisation des personnes âgées : Des savoirs à l’action, held on May 27, 2024 in Montreal.
In this Capsule CREGÉS COVID-19, Mélanie Couture, PhD, CREGÉS researcher, is in conversation with Shari Brotman, Tamara Sussman, Zelda Freitas et Daniel Dickson, CREGÉS researchers and members of the research team, about their article, The Crisis Facing Older People Living with Neurodiversity and their Aging Carers: A Social Work Perspective. The authors discuss the impact from the pandemic on older neurodiverse people and their aging carers.
Presentations
Pacheco, L., Brotman, S., Deshaies, MH., Mastrostefano, A., Demers, C. (2024). Holding on to the parenting identity throughout the life course: Life story narratives of aging parents with neurodiversity. International association for the scientific study of intellectual and developmental disabilities (IASSIDD). Chicago, August 5-8, 2024.
Koestner, S., Brotman, S., Pacheco, L., Mastrostefano, A., Deshaies, MH., Demers, C., D., Dickson, Ragot, S. (2024). Food is a footprint of who we are: Exploring the tensions between food as identity metaphor and food as social control mechanism among people aging with neurodiversity (poster). International association for the scientific study of intellectual and developmental disabilities (IASSIDD). Chicago, August 5-8, 2024.
Brotman, S., Demers, C., Allan-Coté, J., Pacheco, L., Deshaies, MH (2024). Building on the emancipatory potential of community-engaged research through theatre-driven knowledge-sharing: The experiences of people aging with neurodiversity and their families project in ‘act’-ion. Canadian Association of Social Work Education (CASWE) annual conference. Montreal, June 18, 2024.
Ragot, S. et Demers, C. (2024) Vieillissement, inclusion et agentivité des personnes vieillissantes en situation de neurodiversité. Réseau d’Études international sur l’âge, la citoyenneté et l’intégration socio-économique (REIACTIS). Montreal, June 5, 2024
Brotman, S. (2024) Opportunities and challenges when operationalizing the Intersectional lifecourse perspective (ILCP) as social justice research praxis: Lessons from the field. Équipe VIES Scientific Student Day: Social justice and empowerment in the aging population. Montreal, March 25, 2024.
Demers, C. and Mastrostefano, A. (2024). Resilience and resistance: Exploring of older neurodiverse adults across the lifecourse. Équipe VIES Journée scientifique étudiante : La justice sociale et l’empowerment chez la population vieillissante. Montreal, March 25, 2024.
Pacheco, L., Brotman, S., Deshaies, M.H., Mastrostefano, A., Mackenzie, R., Tanguay-Sela, E., Sussman, T., Dickson, D., Lach, L., Raymond, E., Milot, E., Freitas, Z. (2024). Caring for people aging with neurodiversity: The intersectional life story narratives of family caregivers in Montreal. Pacific Rim International Conference on Disability and Diversity, Honolulu, Hawai’I, February 28, 2024.
Deshaies, M.H., Brotman, S., Pacheco, L., Fournier-Dufour, L., Leblanc, F., Raymond, E., Milot, E. (2023) Vieillir en situation de neurodiversité au Québec (Canada) : le rôle joué par les organismes communautaires dans le parcours de résilience et de résistance des personnes âgées. Congrès de l’Association canadienne de gérontologie. Toronto, July 27, 2023.
Tanguay-Sela, E., Dickson, D., Ragot, S., Simard, J., Brotman, S., Pacheco, L., Deshaies, M.H. (2023). Examining the disjuncture between housing policy and the intersectional life course experiences of people aging with neurodiversity in Quebec (poster). Congress of the Canadian Association on Gerontology. Toronto, October 27, 2023.
MacKenzie, R., Brotman, S., Mastrostefano, A., Pacheco, L., Tourangeau, J., Al-Ahmad, W. (2023). Experiences of resilience and resistance across the life course: Stories of Indigenous women aging with neurodiversity and their families in Montreal. Congress of the Canadian Association on Gerontology. Toronto, October 27, 2023.
Tanguay-Sela, E., Dickson, D., Ragot, S., Brotman, S., Pacheco, L., Deshaies, M.H., , C. Demers (2023). Exploring the inclusion of neurodiverse older people in Quebec’s social policies: the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) as an analytic tool (poster). Congress of the Canadian Association on Gerontology. Toronto, October 27, 2023.
Pacheco, L., Brotman, S., Deshaies, MH., Mastrostefano, A., Tanguay-Sela, E., Mackenzie, R., Sussman, T., Dickson, D., Lach, L., Raymond, E., Milot, E. (2023). Stories of resilience and resistance among older neurodiverse people in Québec. EAMHID, Helsinki, September 21, 2023.
Mastrostefano, A., Brotman, S., Pacheco, L., Tourangeau, J., Al-Ahmad, W. (2023). Barriers to accessing care among older people living with co-occurring intellectual and development disabilities (IDD) and mental illness (MI) in Montreal, Quebec. Collaborative Mental Health Care Conference. Vancouver, June 9, 2023.
Brotman, S. & Pacheco, L. (2022). Les expériences d’exclusion et d’inclusion social chez les personnes vieillissantes en situation de neurodiversité et leurs proches. Bien vieillir en situation de handicap et/ou de neurodiversité: Découvrez des initiatives inspirantes. L’Accompagnateur.org. 13 décembre, 2022.
Mastrostefano, A., Pacheco, L., Brotman, S., Lach, L., Dickson, D. (2022). Co-occurrence of intellectual/developmental disability (IDD) and mental illness (MI) among older adults: Exploring opportunities in, and challenges to, the provision of services in Montreal (poster). Canadian Association on Gerontology. Regina, October 21, 2022.
Brotman, S., Mastrostefano, A., Pacheco, L., Deshaies, MH, Elias, B., Sussman, T., Lach, L. Dickson, D. (2022) Exploring agency and voice in qualitative research with neurodiverse older adults. Canadian Association on Gerontology, Regina, October 22, 2022.
Deshaies, MH, Brotman, S., Raymond, E., Elias, B., Sussman, T., Pacheco, L., Dickson, D., Lach, L., Freitas, Z., Milot E., Simard, J. (2022) Ancrer les principes et les processus de justice sociale dans la recherche qualitative avec des personnes âgées en situation de neurodiversité. ACFAS, online, May 8, 2022.
Publications
Final Report and Summary
The research report from the Quebec Research Fund – Social Sciences and Humanities (FRQSC) Action concertée The Experiences of Social Exclusion and Inclusion Among People Aging with Neurodiversity and Their Families, conducted by Shari Brotman, a CREGÉS researcher and professor at the McGill University School of Social Work, is now available on the Quebec Research Fund website.
This project is supported by the Quebec Ministry of Municipal Affairs and Housing (MAMH), the Quebec Ministry of Immigration, Francisation and Integration (MIFI), the Quebec Ministry of Health and Social Services (MSSS), the Quebec Housing Corporation (SHQ), and the FRQSC.
Publications
Brotman, S, Sussman T, Pacheco L, Dickson D, Lach L, Raymond É, Deshaies MH, Freitas Z, Milot É. (2021). The Crisis Facing Older People Living with Neurodiversity and Their Aging Family Carers: A Social Work Perspective. Journal of Gerontological Social Work.
Dickson, Daniel, & Brotman, Shari. (2022). Enacting Power at the Decision-Making Table: Foregrounding the Voices of People with Intellectual and Developmental Disabilities in the Policy Process through Engagement with Families in Relational Self-Advocacy. Journal on Developmental Disabilities, 27(2). https://doi.org/10.5281/zenodo.7433552