Self-Caregiving Under Structural Erasure: Role Collapse and Structural Isolation in Autistic Adults

Some adults permanently occupy two roles that caregiving research treats as belonging to separate people: providing care and receiving it, in the absence of a stable support network able to detect deterioration and coordinate a response. This conceptual analysis proposes self-caregiving under structural erasure (SCSE) to name that general configuration, defined by two constitutive criteria: role collapse and non-transient structural isolation. The article develops SCSE within the population of autistic adults, the context in which the phenomenon prompted this analysis and in which the surrounding literature shows the clearest gaps. Within this context, the article proposes a hypothesis, not a third criterion: that residual masking, an audience-directed strategy that may persist after its original audience disappears, could moderate the gap between independently assessed support need and self-perceived need. The article synthesizes three otherwise disconnected literatures, caregiver burnout, autistic burnout, and masking, positions SCSE against its closest conceptual precedents (compound caregiving, elder orphans, and general autistic burnout), and outlines implications for measurement, clinical practice, and a falsifiable research agenda. SCSE is proposed as a general conceptual construct, not a diagnostic category and not specific to autism by definition, applicable in principle beyond the population studied here.

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Publication Details

Journal
Zenodo (CERN European Organization for Nuclear Research)
Published
2026-08-28
DOI
https://doi.org/10.5281/zenodo.22145334
Primary Topic
Family and Disability Support Research
Type
preprint
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preprint

Self-Caregiving Under Structural Erasure: Role Collapse and Structural Isolation in Autistic Adults

Gajewski Christian
Zenodo (CERN European Organization for Nuclear Research)
Family and Disability Support Research
preprint

Self-Caregiving Under Structural Erasure: Role Collapse and Structural Isolation in Autistic Adults

Gajewski Christian
preprint en

Abstract

Some adults permanently occupy two roles that caregiving research treats as belonging to separate people: providing care and receiving it, in the absence of a stable support network able to detect deterioration and coordinate a response. This conceptual analysis proposes self-caregiving under structural erasure (SCSE) to name that general configuration, defined by two constitutive criteria: role collapse and non-transient structural isolation. The article develops SCSE within the population of autistic adults, the context in which the phenomenon prompted this analysis and in which the surrounding literature shows the clearest gaps. Within this context, the article proposes a hypothesis, not a third criterion: that residual masking, an audience-directed strategy that may persist after its original audience disappears, could moderate the gap between independently assessed support need and self-perceived need. The article synthesizes three otherwise disconnected literatures, caregiver burnout, autistic burnout, and masking, positions SCSE against its closest conceptual precedents (compound caregiving, elder orphans, and general autistic burnout), and outlines implications for measurement, clinical practice, and a falsifiable research agenda. SCSE is proposed as a general conceptual construct, not a diagnostic category and not specific to autism by definition, applicable in principle beyond the population studied here.

Zenodo (CERN European Organization for Nuclear Research)
Family and Disability Support Research
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