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Schedule:
Friday, January 22, 2027
Union Station 19 (Hilton San Francisco Union Square)
* noted as presenting author
Background and purpose:
The experience of aging with neurodiversity is poorly understood within our society and health
and social service systems. Gaps in policies and services reflect this lack of understanding,
creating and reinforcing barriers to the social inclusion of neurodiverse older adults (NDOA).
This presentation aims to explore the experiences of NDOA by foregrounding their voices and
highlighting how controls are enacted and the consequences of these controls on NDOA. We
hope to inspire change that fosters agency and autonomy. This presentation sheds light on
the unintended harms that even well-meaning controls can cause and aims to provide a model
for power-sharing and co-creation.
Methods:
Our project (2020-2025) interviewed 63 participants in Montreal and Quebec City (Quebec,
Canada), including 21 NDOA, 15 family caregivers, and 27 care providers from community and
public sector services. The study used an intersectional life story narrative approach with
conversational interviewing and intersectional life/care line drawings. ‘Co-
creation’ was central to our research design with an emphasis on exploring how social context
shapes participants' lives. We foregrounded participants’ agency, resilience, and resistance to
oppression. Our reflexive thematic analysis cycled iteratively between data collection, data
reduction (into stories, vignettes), data display (presenting visual data and stories/
interpretations), and verifying our conclusions (through member-checking with participants and
input from our advisory group).
Results:
Interview data revealed restrictions on or control over various aspects of neurodiverse older
people’s daily lives including stories of how external control of their finances limited their ability
to participate in desired activities, how their relationships were constrained by caregivers’ and
care providers’ rules around who they could and could not see, the impact of forced transitions,
the denial of access to preferred foods, and restrictions on how they could dress, what
schedules they must follow, and what activities they could attend. Participants repeatedly noted
how their caregivers and care providers minimized their capacity to make decisions for
themselves – speaking to their frustration at always having to ask for permission and feeling
bound to rules established by others. Stories reflected the emotional toll of a lack of control
among NDOA and highlighted their desire for the freedom to direct their lives and seek
fulfillment in ways meaningful to them. Finally, NDOA gave examples of how they sometimes
resisted these controls and asserted themselves through their choices and actions.
Conclusion and Implications:
Findings highlight the importance of attending to NDOA preferences and recognizing their rights
to make decisions that affect their lives. Strategies rooted in relational autonomy are presented
to improve practices rooted in respect for dignity and choice. These findings have implications
for care partnerships across the continuum of care provision to neurodiverse older adults. This
study also demonstrates the value of community input and narratives to shed light on the
consequences of often normalized but problematic care dynamics, which can hinder self-
determination, agency, and voice.
The experience of aging with neurodiversity is poorly understood within our society and health
and social service systems. Gaps in policies and services reflect this lack of understanding,
creating and reinforcing barriers to the social inclusion of neurodiverse older adults (NDOA).
This presentation aims to explore the experiences of NDOA by foregrounding their voices and
highlighting how controls are enacted and the consequences of these controls on NDOA. We
hope to inspire change that fosters agency and autonomy. This presentation sheds light on
the unintended harms that even well-meaning controls can cause and aims to provide a model
for power-sharing and co-creation.
Methods:
Our project (2020-2025) interviewed 63 participants in Montreal and Quebec City (Quebec,
Canada), including 21 NDOA, 15 family caregivers, and 27 care providers from community and
public sector services. The study used an intersectional life story narrative approach with
conversational interviewing and intersectional life/care line drawings. ‘Co-
creation’ was central to our research design with an emphasis on exploring how social context
shapes participants' lives. We foregrounded participants’ agency, resilience, and resistance to
oppression. Our reflexive thematic analysis cycled iteratively between data collection, data
reduction (into stories, vignettes), data display (presenting visual data and stories/
interpretations), and verifying our conclusions (through member-checking with participants and
input from our advisory group).
Results:
Interview data revealed restrictions on or control over various aspects of neurodiverse older
people’s daily lives including stories of how external control of their finances limited their ability
to participate in desired activities, how their relationships were constrained by caregivers’ and
care providers’ rules around who they could and could not see, the impact of forced transitions,
the denial of access to preferred foods, and restrictions on how they could dress, what
schedules they must follow, and what activities they could attend. Participants repeatedly noted
how their caregivers and care providers minimized their capacity to make decisions for
themselves – speaking to their frustration at always having to ask for permission and feeling
bound to rules established by others. Stories reflected the emotional toll of a lack of control
among NDOA and highlighted their desire for the freedom to direct their lives and seek
fulfillment in ways meaningful to them. Finally, NDOA gave examples of how they sometimes
resisted these controls and asserted themselves through their choices and actions.
Conclusion and Implications:
Findings highlight the importance of attending to NDOA preferences and recognizing their rights
to make decisions that affect their lives. Strategies rooted in relational autonomy are presented
to improve practices rooted in respect for dignity and choice. These findings have implications
for care partnerships across the continuum of care provision to neurodiverse older adults. This
study also demonstrates the value of community input and narratives to shed light on the
consequences of often normalized but problematic care dynamics, which can hinder self-
determination, agency, and voice.