Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout

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Higgins, J. M., Arnold, S. R. C., Weise, J., Pellicano, E., & Trollor, J. (2021). Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout. Autism, 25(8), 2356-2369. https://doi.org/10.1177/13623613211019858

Publication date: 4 Jun 2021 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
5
Publication authors identified as autistic
1 / 5 (20.0%)
  1. Julianne M. Higgins *
  2. Samuel R. C. Arnold
  3. Janelle Weise
  4. Elizabeth Pellicano
  5. Julian Trollor

Abstract

Although commonly described on social media by autistic people, there is little recognition of autistic burnout in the academic literature. Anecdotally, autistic burnout is described as a debilitating condition that severely impacts functioning, is linked to suicidal ideation and is driven by the stress of masking and living in an unaccommodating neurotypical world. We sought to define autistic burnout using the Grounded Delphi method. Autistic adults, experts by the lived experience of autistic burnout (n = 23), co-produced and agreed to a definition intended for clinicians and the autistic and autism communities. A thick description and conceptual framework were developed from the open-ended round 1 survey, with a high majority of agreement reached in the round 3 survey. Autistic burnout was defined as a highly debilitating condition characterised by exhaustion, withdrawal, executive function problems and generally reduced functioning, with increased manifestation of autistic traits – and distinct from depression and non-autistic burnout. Further work is needed to differentiate autistic burnout from other conditions and to build clinician understanding of the accompanying complexity to be considered in treatment planning. Lay abstract Autistic burnout has been commonly described in social media by autistic people. There is little mention of autistic burnout in the academic literature. Only one recent study has used interviews and reviews of social media descriptions to try to understand autistic burnout. Anecdotally, autistic burnout is a very debilitating condition that reduced people’s daily living skills and can lead to suicide attempts. It is suggested that autistic burnout is caused by the stress of masking and living in an unaccommodating neurotypical world. We wanted to create a definition of autistic burnout that could be used by clinicians and the autism community. We used the Grounded Delphi method, which allowed autistic voice to lead the study. Autistic adults who had experienced autistic burnout were considered as experts on the topic, in the co-production of this definition. The definition describes autistic burnout as a condition involving exhaustion, withdrawal, problems with thinking, reduced daily living skills and increases in the manifestation of autistic traits. It is important for future research that there is a specific description of the condition. In practice, it is important for clinicians to be aware that autistic burnout is different from depression. Psychological treatments for depression potentially could make autistic burnout worse. Further awareness of autistic burnout is needed, as well as further research to prove this condition is separate from depression, chronic fatigue and non-autistic burnout.

Bibliography cited by this reference

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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: 2 Oct 2026 14:01.

Cited references
40
With a DOI
32
Without a DOI, from raw bibliography text
8
4 / 40 (10.0%) cited references include at least one author identified as autistic.
References with data to complete
5 / 40 (12.5%)
References with detected author names
36 / 40 (90.0%)
Without detected author names
4
Without a structured title
5
Without a stable identifier
8
References with raw author names still to review
4
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
115
From DOI or external metadata
115
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
6
42 / 115 (36.5%) names are linked to an author already present in AutiHub. 73 / 115 (63.5%) names are not yet linked.
Names linked to a person identified as autistic
8 / 115 (7.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 8 / 42 (19.0%). Distinct people identified as autistic: 6 / 104 (5.8%).
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