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.
Authors
- Gajewski Christian (ORCID: https://orcid.org/0009-0009-4863-2991)
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