“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Santos, A. D., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout. Autism in Adulthood, 2(2), 132-143. https://doi.org/10.1089/aut.2019.0079

Publication date: 7 Apr 2020 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
OpenAlex source Publisher source (DOI) Full text

This publication is integrated into AutiHub through:

Authors

Publication authors
10
Publication authors identified as autistic
3 / 10 (30.0%)
  1. Dora M Raymaker *
  2. Alan R. Teo
  3. Nicole A. Steckler
  4. Brandy Lentz
  5. Mirah Scharer
  1. Austin Delos Santos
  2. Steven K. Kapp *
  3. Morrigan Hunter *
  4. Andee Joyce
  5. Christina Nicolaidis

Abstract

Background: Although autistic adults often discuss experiencing “autistic burnout” and attribute serious negative outcomes to it, the concept is almost completely absent from the academic and clinical literature. Methods: We used a community-based participatory research approach to conduct a thematic analysis of 19 interviews and 19 public Internet sources to understand and characterize autistic burnout. Interview participants were autistic adults who identified as having been professionally diagnosed with an autism spectrum condition. We conducted a thematic analysis, using a hybrid inductive–deductive approach, at semantic and latent levels, through a critical paradigm. We addressed trustworthiness through multiple coders, peer debriefing, and examination of contradictions. Results: Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout. Conclusions: Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability. Lay summary Why was this study done? Autistic burnout is talked about a lot by autistic people but has not been formally addressed by researchers. It is an important issue for the autistic community because it is described as leading to distress; loss of work, school, health, and quality of life; and even suicidal behavior. What was the purpose of this study? This study aimed to characterize autistic burnout, understand what it is like, what people think causes it, and what helps people recover from or prevent it. It is a first step in starting to understand autistic burnout well enough to address it. What did the researchers do? Our research group—the Academic Autism Spectrum Partnership in Research and Education—used a community-based participatory research approach with the autistic community in all stages of the study. We analyzed 9 interviews from our study on employment, 10 interviews about autistic burnout, and 19 public Internet sources (five in-depth). We recruited in the United States by publicizing on social media, by word of mouth, and through community connections. When analyzing interviews, we took what people said at face value and in deeper social context, and looked for strong themes across data. What were the results of the study? The primary characteristics of autistic burnout were chronic exhaustion, loss of skills, and reduced tolerance to stimulus. Participants described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. From this we created a definition: Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus. Participants described negative impacts on their lives, including health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people. People had ideas for recovering from autistic burnout including acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking. How do these findings add to what was already known? We now have data that autistic burnout refers to a clear set of characteristics, and is different from workplace burnout and clinical depression. We have the start of a model for why autistic burnout might happen. We know that people have been able to recover from autistic burnout and have some insights into how. What are the potential weaknesses in the study? This was a small exploratory study with a convenience sample. Although we were able to bring in some diversity by using three data sources, future work would benefit from interviewing a wider range of participants, especially those who are not white, have higher support needs, and have either very high or very low educational attainment. More research is needed to understand how to measure, prevent, and treat autistic burnout. How will these findings help autistic adults now or in the future? These findings validate the experience of autistic adults. Understanding autistic burnout could lead to ways to help relieve it or prevent it. The findings may help therapists and other practitioners recognize autistic burnout, and the potential dangers of teaching autistic people to mask autistic traits. Suicide prevention programs should consider the potential role of burnout. These findings highlight the need to reduce discrimination and stigma around autism and disability.

Bibliography cited by this reference

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

Bibliography inclusion overview

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
36
Total cited references integrated for this publication.
Cited references with an identified autistic author
6 / 36 (16.7%)
Cited author occurrences identified as autistic
16 / 121 (13.2%)
Among occurrences linked to AutiHub author records: 16 / 59 (27.1%). Distinct cited authors identified as autistic: 7 / 98 (7.1%).
Cited author occurrences linked to AutiHub author records
59 / 121 (48.8%)
Distinct linked cited authors: 36 / 98 (36.7%)
Linked cited-author occurrences not identified as autistic
43 / 59 (72.9%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 43 / 121 (35.5%). Distinct linked cited authors not identified as autistic: 29 / 36 (80.6%).
  1. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex OpenCitations
  2. (n.d.). Rose K. An autistic burnout. In: The Autistic Advocate: Autistic People Have a Voice. Vol. 2018. https://theautisticadvocate.com/2018/05/an-autistic-burnout/ (accessed April3 2020).
    Type: Other
    Crossref
  3. Sarah Cassidy , Paul Bradley , Janine Robinson , Carrie Allison , Meghan McHugh , Simon Baron-Cohen (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study . The Lancet Psychiatry, 1(2), 142-147. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(14)70248-2 OpenAlex: https://openalex.org/W2126021938
    Crossref OpenAlex OpenCitations
  4. Ying Zhang , Qiong Xu , Jing Liu , She-chang Li , Xiu Xu (2012). Risk Factors for Autistic Regression . Journal of Child Neurology, 27(8), 975-981. SAGE Publications.
    Type: Article DOI: 10.1177/0883073811430163 OpenAlex: https://openalex.org/W2039595499
    Crossref OpenAlex OpenCitations
  5. (n.d.). Boren R. Autistic burnout: The Cost of Coping and Passing. In: Ryan Boren: Non-compliant neurodivergent. Vol. 2018. 2017; https://boren.blog/2017/01/26/autistic-burnout-the-cost-of-coping-and-passing/ (accessed April3 2020).
    Type: Other
    Crossref
  6. Will Mandy (2019). Social camouflaging in autism: Is it time to lose the mask? Autism, 23(8), 1879-1881. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319878559 OpenAlex: https://openalex.org/W2975468007
    Crossref OpenAlex OpenCitations
  7. Emily Werner , Géraldine Dawson (2005). Validation of the Phenomenon of Autistic Regression Using Home Videotapes . Archives of General Psychiatry, 62(8), 889. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archpsyc.62.8.889 OpenAlex: https://openalex.org/W2041232497
    Crossref OpenAlex OpenCitations
  8. Eric Galam , Camille Vauloup Soupault , Lucie Bunge , Céline Buffel du Vaure , Emilie Boujut , Philippe Jaury (2017). ‘Intern life’: a longitudinal study of burnout, empathy, and coping strategies used by French GPs in training . BJGP Open, 1(2), bjgpopen17X100773. Royal College of General Practitioners.
    Type: Article DOI: 10.3399/bjgpopen17x100773 OpenAlex: https://openalex.org/W2625564593
    Crossref OpenAlex OpenCitations
  10. M Catherine Sargent , Wayne Sotile , Mary O Sotile , Harry Rubash , Robert L Barrack (2009). Quality of Life During Orthopaedic Training and Academic Practice . The Journal of Bone and Joint Surgery-American Volume, 91(10), 2395-2405. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.2106/jbjs.h.00665 OpenAlex: https://openalex.org/W2046033182
    Crossref OpenAlex OpenCitations
  11. Pierre Gérain , Emmanuelle Zech (2018). Does Informal Caregiving Lead to Parental Burnout? Comparing Parents Having (or Not) Children With Mental and Physical Issues . Frontiers in Psychology, 9, 884-884. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2018.00884 OpenAlex: https://openalex.org/W2803458150
    Crossref OpenAlex OpenCitations
  12. Christina Maslach (1998). A Multidimensional Theory of Burnout . In Theories of Organizational Stress (pp. 68-85). Oxford University PressOxford.
    Type: Book chapter DOI: 10.1093/oso/9780198522799.003.0004 OpenAlex: https://openalex.org/W4388167950
    Crossref OpenAlex OpenCitations
  13. Emily D. Dolan , David Mohr , Michele Lempa , Sandra Joos , Stephan D. Fihn , Karin M. Nelson et al. (2015). Using a Single Item to Measure Burnout in Primary Care Staff: A Psychometric Evaluation . Journal of General Internal Medicine, 30(5), 582-587. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11606-014-3112-6 OpenAlex: https://openalex.org/W2083946992
    Crossref OpenAlex OpenCitations
  14. Alistair D Merrick , Alan Grieve , Nicola Cogan (2017). Psychological impacts of challenging behaviour and motivational orientation in staff supporting individuals with autistic spectrum conditions . Autism, 21(7), 872-880. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316654857 OpenAlex: https://openalex.org/W2419024437
    Crossref OpenAlex OpenCitations
  15. Meng-Chuan Lai , Michael Lombardo , Amber Ruigrok , Bhismadev Chakrabarti , Bonnie Auyeung , Péter Szatmári et al. (2017). Quantifying and exploring camouflaging in men and women with autism . Autism, 21(6), 690-702. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316671012 OpenAlex: https://openalex.org/W2543847144
    Crossref OpenAlex OpenCitations
  16. Hu Qiao , Wilmar B. Schaufeli (2011). The Convergent Validity of Four Burnout Measures in a Chinese Sample: A Confirmatory Factor‐Analytic Approach . Applied Psychology, 60(1), 87-111. Wiley.
    Type: Article DOI: 10.1111/j.1464-0597.2010.00428.x OpenAlex: https://openalex.org/W2106146413
    Crossref OpenAlex OpenCitations
  17. Shunit Reiter , Taly Vitani (2007). Inclusion of pupils with autism . Autism, 11(4), 321-333. SAGE Publications.
    Type: Article DOI: 10.1177/1362361307078130 OpenAlex: https://openalex.org/W2158268798
    Crossref OpenAlex OpenCitations
  18. Kyle M. Frost , Kathryn M. Bailey , Brooke R. Ingersoll (2019). “I Just Want Them to See Me As…Me”: Identity, Community, and Disclosure Practices Among College Students on the Autism Spectrum . Autism in Adulthood, 1(4), 268-275. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0057 OpenAlex: https://openalex.org/W2976484598
    Crossref OpenAlex OpenCitations
  20. Dori Zener (2019). Helping autistic women thrive . Advances in Autism, 5(3), 143-156. Emerald.
    Type: Article DOI: 10.1108/aia-10-2018-0042 OpenAlex: https://openalex.org/W2922882923
    Crossref OpenAlex OpenCitations
  21. Dori Zener (2019). Journey to diagnosis for women with autism . Advances in Autism, 5(1), 2-13. Emerald.
    Type: Article DOI: 10.1108/aia-10-2018-0041 OpenAlex: https://openalex.org/W2918185263
    Crossref OpenAlex OpenCitations
  23. Lucy Anne Livingston , Punit Shah , Francesca Happé (2019). Compensatory strategies below the behavioural surface in autism: a qualitative study . The Lancet Psychiatry, 6(9), 766-777. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(19)30224-x OpenAlex: https://openalex.org/W2963462665
    Crossref OpenAlex OpenCitations
  24. Meredith Minkler , Nina Wallerstein (2002). Community-Based Participatory Research for Health .
    Type: Book OpenAlex: https://openalex.org/W2168815104
    OpenAlex
  25. Dora M Raymaker * (2019). Reclaiming Research for the Autistic Adult Community . Autism in Adulthood, 1(3), 160-161. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2019.29005.dra OpenAlex: https://openalex.org/W2973108583
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  26. Sarah Cassidy , Louise Bradley , Rebecca Shaw , Simon Baron-Cohen (2018). Risk markers for suicidality in autistic adults . Molecular Autism, 9(1), 42. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-018-0226-4 OpenAlex: https://openalex.org/W2887488849
    Crossref OpenAlex OpenCitations
  27. Christian Otte , Stefan M. Gold , Brenda W. Penninx , Carmine M. Pariante , Amit Etkin , Maurizio Fava et al. (2016). Major depressive disorder . Nature Reviews Disease Primers, 2(1), 16065-16065. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nrdp.2016.65 OpenAlex: https://openalex.org/W2519531315
    Crossref OpenAlex OpenCitations
  28. Eilidh Cage , Zoe Troxell-Whitman (2019). Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults . Journal of Autism and Developmental Disorders, 49(5), 1899-1911. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-03878-x OpenAlex: https://openalex.org/W2909219349
    Crossref OpenAlex OpenCitations
  29. Laura Hull , K. V. Petrides , Carrie Allison , Paula Smith , Simon Baron-Cohen , Meng-Chuan Lai et al. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions . Journal of Autism and Developmental Disorders, 47(8), 2519-2534. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3166-5 OpenAlex: https://openalex.org/W2616560149
    Crossref OpenAlex OpenCitations
  30. Israel BA (2003). Community-Based Participatory Research for Health . Community Based Participatory Research for Health, 53.
    Type: Other
    Crossref
  31. Eilidh Cage , Jessica Di Monaco , Victoria Newell (2018). Experiences of Autism Acceptance and Mental Health in Autistic Adults . Journal of Autism and Developmental Disorders, 48(2), 473-484. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3342-7 OpenAlex: https://openalex.org/W2766434912
    Crossref OpenAlex OpenCitations
  34. (n.d.). ATLAS.ti. ATLAS.ti: Qualitative data analysis. https://atlasti.com . Published 2018. Accessed October14 2018.
    Type: Other
    Crossref
  35. (n.d.). World Health Organization. International classification of diseases for mortality and morbidity statistics. https://icd.who.int/browse11/l-m/en . Published 2018. Accessed October18 2019.
    Type: Other
    Crossref
  36. (n.d.). Baggs M. Help! I seem to be getting more autistic! http://web.archive.org/web/20061207172126/ http://www.autistics.org/library/more-autistic.html . Published 2005. Accessed October11 2019.
    Type: Other
    Crossref