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. N. (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 N 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.

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
40
Total cited references integrated for this publication.
Cited references with an identified autistic author
3 / 40 (7.5%)
Cited author occurrences identified as autistic
5 / 115 (4.3%)
Among occurrences linked to AutiHub author records: 5 / 38 (13.2%). Distinct cited authors identified as autistic: 4 / 104 (3.8%).
Cited author occurrences linked to AutiHub author records
38 / 115 (33.0%)
Distinct linked cited authors: 34 / 104 (32.7%)
Linked cited-author occurrences not identified as autistic
33 / 38 (86.8%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 33 / 115 (28.7%). Distinct linked cited authors not identified as autistic: 30 / 34 (88.2%).
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