When Participation is Not Wellbeing: Hidden Effort, Masking and the Sustainability of Autistic Functioning

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Wheeler, M. (2026). When Participation is Not Wellbeing: Hidden Effort, Masking and the Sustainability of Autistic Functioning. Neurodiversity, 4, Article 27546330261497301. https://doi.org/10.1177/27546330261497301

Publication date: 1 Sep 2026 Added to AutiHub: 26 Oct 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
1
Publication authors identified as autistic
1 / 1 (100.0%)
  1. Marc Wheeler *

Abstract

This document-informed autoethnographic study examines the relationship between visible participation, hidden regulatory effort, masking, wellbeing and sustainable functioning in autism. Drawing on an unusually extensive and detailed longitudinal corpus of personal, educational, clinical and professional records spanning 1993 to 2026, the study analyses contemporaneous diary material alongside medical correspondence, statement-related paperwork, educational psychology evidence, clinical psychology reviews, psychiatric reports, occupational therapy reports and diagnostic documentation. Data were analysed using a theory-informed thematic approach combining inductive coding with deductive mapping against the sustainability model of participation. Findings indicate that participation was not absent, and was often externally successful, but was frequently achieved through disproportionate regulatory labour, masking, environmental dependence and sustained compensatory self-regulation, rather than voluntary or freely chosen self-management. Across contexts, visible competence masked exhaustion, withdrawal, reduced tolerance, sensory overload and post-participation collapse. The paper argues that autistic functioning cannot be inferred from visible participation alone. Functioning is conceptualised as a relational and temporally situated construct: the capacity to participate in a given context over time without disproportionate regulatory cost, loss of wellbeing or functional collapse. The sustainability model of participation offers a framework for shifting assessment from momentary performance to sustainable participation.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 27 Oct 2026 09:28.

Cited references
28
With a DOI
24
Without a DOI, from raw bibliography text
4
6 / 28 (21.4%) cited references include at least one author identified as autistic.
References with data to complete
0 / 28 (0.0%)
References with detected author names
28 / 28 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
4
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
92
From DOI or external metadata
92
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
63 / 92 (68.5%) names are linked to an author already present in AutiHub. 29 / 92 (31.5%) names are not yet linked.
Names linked to a person identified as autistic
10 / 92 (10.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 10 / 63 (15.9%). Distinct people identified as autistic: 9 / 64 (14.1%).
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