The Experiences of Social Exclusion and Inclusion Among People Aging with Neurodiversity and Their Families
Forthcoming in 2028
Neurodiversity and Aging: Intersectional Life Course Perspectives
A textbook to be published by Routledge
Edited by Shari Brotman, Marie-Hélène Deshaies, Laura Pacheco, Samuel Ragot, and Aglaé Mastrostefano
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.
Nothing about us without us!
Nothing about us without us
To honour the transformative principle of “nothing about us without us“, people with disabilities, including people living with neurodiversity, played an important role in project design and process. They acted as researchers, advisors, and of course as participants.
We also engaged Indigenous Academia Research Methodology Consultant and Traditional Knowledge Keeper Jaylenn Tourangeau partway through the data collection process after two participants shared their identities as Indigenous people during their interviews with us. We worked with and learned from Jaylenn to ensure we paid attention to cultural safety in our interview process with our Indigenous participants, and to support our own learning about Indigenous world view perspectives in research and decolonizing research practice, in order to help shape our design, process, and analysis, and to ensure that the dignity and rights of our Indigenous participants were honoured. We hope to collaboratively publish our learnings and challenges in a future writing project.
Infographics
PROJECT RECOMMENDATIONS
The Experiences of Social Exclusion and Inclusion Among People Aging with Neurodiversity and Their Families
Download: English version | French version
Infographic Booklet
Infographic Booklet Summary
In short, easy to read paragraphs, this summary document describes the content of the Infographics in our Infographic Booklet.
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: How to draw a life line or care line
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.
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 an animated podcast version.
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 an animated podcast version of the story.
Monsieur X's Story
Monsieur X is a research participant aging with neurodiversity. Click here to read Monsieur X’s story, or click the image at left to listen to an animated podcast version of his story.
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 an animated podcast version of the story.
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 an animated podcast version of her story.
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.
To find the Life Stories video podcasts, check out the Life Stories section above.
Midis-Multi webinar, presented by the Directorate of Rehabilitation and Multidisciplinary Services at Santé Québec West‑Central Montreal Health and Social Services University Network
Neurodiverse older adults (NDOA) and their aging family caregivers face significant social exclusion throughout their lives. Multiple forms of discrimination create inequitable conditions that negatively affect their health and well-being, social inclusion, and agency. NDOA and their aging family caregivers have diverse identities which are important to acknowledge, honour, and understand in order to ensure that discrimination shaping their life experiences are confronted and redressed in our services, policies, and relationships. This presentation reflects upon the many stories shared by NDOA and family caregiver participants in our recent study (2020-2025) about the significant gaps and challenges in the health and social care service system across sites and sectors of care and makes important recommendations for change at both practice and policy levels.
This short video presents definitions of key terms and concepts used in our research.
At the end of the research carried out under the Fonds de recherche du Québec (FRQ)’s Actions concertées program, its partners organize knowledge transfer activities with the aim of helping user communities to benefit from the research findings. The following is a presentation of the project The Experiences of Social Exclusion and Inclusion Among People Aging with Neurodiversity and Their Families. Available in French only.
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.
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.
Position Papers
SQDI | Mémoire : La politique nationale sur les soins et les services de soutien à domicile
Collaboration with our community partners the Société québécoise de la déficience intellectuelle (SQDI) and the Fédération québécoise de l’autisme on a policy brief about policies related to home care and support services that was submitted to the Ministry of Health and Social Services of Quebec (available in French only).
-
- Related: Check out SQDI’s “I Belong” campaign.
CREGÉS | Mémoire présenté dans le cadre de la consultation sur la Politique nationale sur les soins et les services de soutien à domicile
Several CREGÉS members and collaborators contributed to the drafting of this position paper as part of the consultation on the Politique nationale sur les soins et les services de soutien à domicile (SSSAD), led by the Direction du soutien à domicile, part of the Direction générale des aînés et des proches aidants of the Ministère de la Santé et des Services sociaux (MSSS). The authors of this report raise important issues that need to be taken into account in this new national policy. They also present a series of reflections and recommendations on the home care and support services (available in French only).
List of publications
Ragot, S., Mastrostefano, A., Deshaies, M-H., Brotman, S., Pacheco, L. (2026). Fostering well-being in later life among neurodiverse older adults: A call for inclusive policy and relational care. Salute e Società, 1, 59-84. https://doi.org/10.3280/SES2026-001005
Demers, C. & Mastrostefano, A. (2026). Vieillir en situation de neurodiversite : 10 resultats cles d’un projet de recherche.Magazine Express, 19, 26-31. https://www.autisme.qc.ca/wp-content/uploads/2026/03/MagazineExpress_2026.pdf#page=26
Brotman, S., Pacheco, L., Deshaies, M.-H., Mastrostefano, A., & Demers, C. (2026). Moving Beyond “Inclusion” and Towards “Transformation”: Intersectional Life Story Narrative Research on Aging and Neurodiversity. International Review of Qualitative Research, 0(0). https://journals.sagepub.com/doi/10.1177/19408447261416926
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.
Charette, A., Marier, P., Arsenault-Lapierre, G., Brotman, S., Durivage, P., Freitas, Z., Lafontaine, C., Lessard, S., Pouliot, M., Ragot, S., Smele, S., Sawchuk, K., Van Pevenage, I. (2025). Memoire presenté dans le cadre de la consultation Nationale sur les soins et les services de soutien a domicile. CREGES.
https://creges.ca/wp-content/uploads/2025/04/Memoire_CREGES_SSSAD_Final_2025-04-14__rev.pdf
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
Koestner, S., Brotman, S., Pacheco, L., Mastrostefano, A., Deshaies, MH., Demers, C., Dickson, D., Ragot, S. (2024, July). Exploring tensions between food as identity metaphor and social control mechanism amongst neurodiverse older adults. Journal of Intellectual Disability Research 68(7), 670-671. https://doi/10.1111/1316
Pacheco, L., Brotman, S., Deshaies, M.H., Mastrostefano, A., Tanguay-Sela, E., Mackenzie, R., Sussman, T., Dickson, D., Lach, L., Raymond, E., Milot, E., Freitas, Z. (2023). Stories of everyday resilience and resistance among older neurodiverse people in Quebec. Journal of Intellectual Disability Research 67(10), 941. https://doi.org/10.1111/jir.13085
Rancourt, JF. et Plourde, L. [en collaboration avec Brotman, S. et Freitas, Z.]. (2025) Memoire commun : La politique nationale sur les soins et les services de soutien a domicile. FQA et SQDI. Biliotheque et archives nationale du Quebec. ISBN 978-2-921037-64-8. www.sqdi.ca/wp-content/uploads/2025/01/Memoire_Soutien_Domicile.pdf
Presentations
Pacheco, L., Brotman, S. (2026). Learning from the experiences of social exclusion among neurodiverse older adult adults and their family caregivers: Lessons for the development of meaningfully inclusive policies and practices within health and social care services. CIUSSS Centre-Ouest-de-l’ile-de-Montréal. March 18, 2026.
Mastrostefano, A., Demers, C. (2026). Building inclusive community practices for neurodiverse older adults and family caregivers. Cummings Centre for Seniors. April 30, 2026.
Koestner, S., Brotman, S., Pacheco, L., Demers, C., Deshaies, M.H., Dickson, D. (2025) Autonomy as conveyed by food environments: Experiences of nourishment vs restriction among neurodiverse older adults. Gerontological Society of America. Annual Scientific Meeting. Boston, MA, November 12-15, 2025.
Pacheco, L., Brotman, S., Allan-Côté, J., Demers, C., Deshaies, M.H., Mastrostefano, A., Ragot, S. (2025). Disability justice in storytelling research with neurodiverse older adults: Using theatre to drive change. Council on Social Work Education Annual Conference, Denver, CO. October 23, 2025.
Mastrostefano, A., Brotman, S., Pacheco, L, Ragot, S., Deshaies, M.H. (2025). When deinstitutionalization rhymes with isolation. Stories of struggle, resilience, and resistance across the life course of neurodiverse individuals with co-occurring mental health challenges. European Congress on Mental Health in Intellectual Disability. Gent, Belgium. September 18-20, 2025.
Leblanc, M.A., Mastrostefano, A., Brotman, S., Pacheco, L, Ragot, S., Deshaies, M.H. (2025). Until next time: The Recurring struggles of neurodiverse adults coming in and out of the criminal justice and forensic psychiatric systems. European Congress on Mental Health in Intellectual Disability. Gent, Belgium. September 18-20, 2025.
SQDI et McGill (Pilon, K., Brotman, S., Ragot, S. Coordonateures) (2025). Colloque Vieillir ensemble, agir ensemble : le partenariat communautaire comme levier pour soutenir l’inclusion des personnes vieillissantes neurodivergentes et de leurs proches. 92e congres de l’ACFAS. Montreal, Quebec, le 7 mai 2025.
Mastrostefano, A. (2025). Vieillir dans les craques du système: récits d’obstacles, résilience et résistance de personnes neurodivergentes vivant avec des difficultés de santé mentale. ACFAS. Montreal, Quebec, le 7 mai, 2025.
Ragot, S. (2025). Vieillissement et habitation : portrait de la situation en DI-TSA. ACFAS. Montreal, Quebec, le 7 mai, 2025.
Brotman, S. and Mastrostefano, A. (2024). The experiences of aging with co-occurring neurodiversity and mental health challenges: Stories of challenge and resilience.Neurodivergent affirming mental health care: Innovative approaches and practices, Centre for Dreams and Hopes. Montreal, Quebec, November 8, 2024.
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., , 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.