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

Autistic adults without a stable support network sometimes permanently occupy two roles that caregiving research treats as belonging to separate people: providing care and receiving it. This conceptual analysis proposes self-caregiving under structural erasure (SCSE) to name that configuration. Two constitutive criteria define SCSE: role collapse, in which one person continuously performs the functions a care network would normally distribute across several actors, and non-transient structural isolation, the absence of a continuous human agent capable of detecting deterioration and coordinating a response. Neither criterion, on its own, requires the individual to be autistic; a non-autistic adult who independently manages a chronic condition beyond ordinary self-care could satisfy both. The article's specific contribution is 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 within the population SCSE already defines. 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 conceptual construct, not a diagnostic category, intended to make a previously unnamed configuration visible to research and to services organized around the presumed presence of a second caregiving body.

Authors

Publication Details

Journal
Zenodo (CERN European Organization for Nuclear Research)
Published
2026-08-21
DOI
https://doi.org/10.5281/zenodo.22018830
Primary Topic
Family and Disability Support Research
Type
preprint
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Self-Caregiving Under Structural Erasure: Role Collapse and Masking in Isolated 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 Masking in Isolated Autistic Adults

Gajewski Christian
preprint en

Abstract

Autistic adults without a stable support network sometimes permanently occupy two roles that caregiving research treats as belonging to separate people: providing care and receiving it. This conceptual analysis proposes self-caregiving under structural erasure (SCSE) to name that configuration. Two constitutive criteria define SCSE: role collapse, in which one person continuously performs the functions a care network would normally distribute across several actors, and non-transient structural isolation, the absence of a continuous human agent capable of detecting deterioration and coordinating a response. Neither criterion, on its own, requires the individual to be autistic; a non-autistic adult who independently manages a chronic condition beyond ordinary self-care could satisfy both. The article's specific contribution is 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 within the population SCSE already defines. 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 conceptual construct, not a diagnostic category, intended to make a previously unnamed configuration visible to research and to services organized around the presumed presence of a second caregiving body.

Zenodo (CERN European Organization for Nuclear Research)
Family and Disability Support Research
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Self-Caregiving Under Structural Erasure: Role Collapse and Masking in Isolated Autistic Adults — Gajewski Christian · Zenodo (CERN European Organization for Nuclear Research) (2026) | TGRS Research Map | TGRS