What I Wish You Knew: Insights on Burnout, Inertia, Meltdown, and Shutdown From Autistic Youth

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

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Phung, J., Penner, M., Pirlot, C., & Welch, C. (2021). What I Wish You Knew: Insights on Burnout, Inertia, Meltdown, and Shutdown From Autistic Youth. Frontiers in Psychology, 12, 741421-741421. https://doi.org/10.3389/fpsyg.2021.741421

Publication date: 3 Nov 2021 Added to AutiHub: 25 Sep 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)
  1. Jasmine Phung
  2. Melanie Penner
  3. Clémentine Pirlot *
  4. Christie Welch

Abstract

Introduction: Burnout, inertia, meltdown, and shutdown (BIMS) have been identified as important parts of some autistic people’s lives. This study builds on our previous work that offered early academic descriptions of these phenomena, based on the perspectives of autistic adults. Objectives: This study aimed to explore the unique knowledge and insights of eight autistic children and youth to extend and refine our earlier description of burnout, i nertia, and meltdown, with additional exploration of shutdown. We also aimed to explore how these youth cope with these phenomena and what others around them do that make things better or worse, with a hope to glean knowledge to design better supports. Methods: One-to-one interviews were conducted with eight children and youth, who shared their experience with BIMS. To match individual communication strengths of children and youth, we took a flexible approach to interviews, allowing for augmentative communication systems and use of visual images to support verbal interviews, as needed. We conducted a reflexive, inductive thematic analysis, using an iterative process of coding, collating, reviewing, and mapping themes. Findings: Our analysis has identified that these youth describe BIMS as a multi-faceted experience involving emotional, cognitive and physical components. Moreover, these multifaceted experiences are often misunderstood by neurotypical adults, which contributes to inadequate support in managing BIMS. Of the four experiences, these youth identified meltdowns as most common. Conclusion: By gaining first-hand perspectives, we have identified novel insights into BIMS and developed a more holistic understanding of these phenomena. These youths’ descriptions of supportive strategies for BIMS stress the importance of compassion and collaboration from trusted adults. This new knowledge will provide a foundation for how to better support autistic children and youth. Further research is required to develop an understanding of BIMS, especially with respect to how it is experienced by children and youth. Future research should leverage the insights and experiential knowledge of autistic children and youth to co-design support tool(s) for BIMS.

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: 2 Oct 2026 02:39.

Cited references
36
With a DOI
29
Without a DOI, from raw bibliography text
7
9 / 36 (25.0%) cited references include at least one author identified as autistic.
References with data to complete
6 / 36 (16.7%)
References with detected author names
35 / 36 (97.2%)
Without detected author names
1
Without a structured title
6
Without a stable identifier
6
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
98
From DOI or external metadata
98
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
42 / 98 (42.9%) names are linked to an author already present in AutiHub. 56 / 98 (57.1%) names are not yet linked.
Names linked to a person identified as autistic
15 / 98 (15.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 15 / 42 (35.7%). Distinct people identified as autistic: 12 / 91 (13.2%).
  1. Damian Milton * , Lyte Moon (2012). The normalisation agenda and the psycho-emotional disablement of autistic people. Autonomy Crit. J. Interdiscip. Autism Stud., 1(1), 1.
    Type: Article OpenAlex: https://openalex.org/W1892279485
    Crossref OpenAlex
  2. Merilyn Annells (1996). Grounded Theory Method: Philosophical Perspectives, Paradigm of Inquiry, and Postmodernism . Qualitative Health Research, 6(3), 379-393. SAGE Publications.
    Type: Article DOI: 10.1177/104973239600600306 OpenAlex: https://openalex.org/W2127288864
    Crossref OpenAlex OpenCitations
  3. Parisa Ghanouni , Tal Jarus , Jill G. Zwicker , Joseph Lucyshyn , Stephanie Chauhan , Chelsea Moir (2019). Perceived Barriers and Existing Challenges in Participation of Children with Autism Spectrum Disorders: “He Did Not Understand and No One Else Seemed to Understand Him” . Journal of Autism and Developmental Disorders, 49(8), 3136-3145. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04036-7 OpenAlex: https://openalex.org/W2943047139
    Crossref OpenAlex OpenCitations
  5. Ben Belek (2019). Articulating Sensory Sensitivity: From Bodies with Autism to Autistic Bodies . Medical Anthropology, 38(1), 30-43. Informa UK Limited.
    Type: Article DOI: 10.1080/01459740.2018.1460750 OpenAlex: https://openalex.org/W2801826397
    Crossref OpenAlex OpenCitations
  6. Christie Welch , Deb Cameron , Margaret Fitch , Helene Polatajko (2021). Living in autistic bodies: bloggers discuss movement control and arousal regulation . Disability and Rehabilitation, 43(22), 3159-3167. Informa UK Limited.
    Type: Article DOI: 10.1080/09638288.2020.1729872 OpenAlex: https://openalex.org/W3008924182
    Crossref OpenAlex OpenCitations
  7. 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
  9. Kristen L. Hess , Michael J. Morrier , L. Juane Heflin , Michelle L. Ivey (2008). Autism Treatment Survey: Services Received by Children with Autism Spectrum Disorders in Public School Classrooms . Journal of Autism and Developmental Disorders, 38(5), 961-971. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-007-0470-5 OpenAlex: https://openalex.org/W1997184755
    Crossref OpenAlex OpenCitations
  10. Virginia Braun , Victoria Clarke (2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328-352. Informa UK Limited.
    Type: Article DOI: 10.1080/14780887.2020.1769238 OpenAlex: https://openalex.org/W3048560297
    Crossref OpenAlex OpenCitations
  11. Mike Oliver (2013). The social model of disability: thirty years on . Disability & Society, 28(7), 1024-1026. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2013.818773 OpenAlex: https://openalex.org/W2087269573
    Crossref OpenAlex OpenCitations
  12. Eric L. Olofson , Drew Casey , Olufemi A. Oluyedun , Jo Van Herwegen , Adam Becerra , Gabriella Rundblad (2014). Youth with Autism Spectrum Disorder Comprehend Lexicalized and Novel Primary Conceptual Metaphors . Journal of Autism and Developmental Disorders, 44(10), 2568-2583. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-014-2129-3 OpenAlex: https://openalex.org/W2058304759
    Crossref OpenAlex OpenCitations
  15. Courtenay Norbury (2005). The relationship between theory of mind and metaphor: Evidence from children with language impairment and autistic spectrum disorder . British Journal of Developmental Psychology, 23(3), 383-399. Wiley.
    Type: Article DOI: 10.1348/026151005x26732 OpenAlex: https://openalex.org/W2132085184
    Crossref OpenAlex OpenCitations
  16. Casey Hoffman , Keith A. Crnic , Jason K. Baker (2006). Maternal Depression and Parenting: Implications for Children's Emergent Emotion Regulation and Behavioral Functioning . Parenting, 6(4), 271-295. Informa UK Limited.
    Type: Article DOI: 10.1207/s15327922par0604_1 OpenAlex: https://openalex.org/W2095346262
    Crossref OpenAlex OpenCitations
  17. Charmaz (2006). B7 Constructing Grounded Theory: a Practical Guide through Qualitative Analysis..
    Type: Other
    Crossref
  18. Gail Teachman , Barbara E. Gibson (2013). Children and Youth With Disabilities . Qualitative Health Research, 23(2), 264-274. SAGE Publications.
    Type: Article DOI: 10.1177/1049732312468063 OpenAlex: https://openalex.org/W2100647467
    Crossref OpenAlex OpenCitations
  19. Stacey Crane , Marion E. Broome (2017). Understanding Ethical Issues of Research Participation From the Perspective of Participating Children and Adolescents: A Systematic Review . Worldviews on Evidence-Based Nursing, 14(3), 200-209. Wiley.
    Type: Article DOI: 10.1111/wvn.12209 OpenAlex: https://openalex.org/W2591038002
    Crossref OpenAlex OpenCitations
  20. Georgia Pavlopoulou (2020). A Good Night’s Sleep: Learning About Sleep From Autistic Adolescents’ Personal Accounts . Frontiers in Psychology, 11(2020), 583868. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2020.583868 OpenAlex: https://openalex.org/W3115088354
    Crossref OpenAlex OpenCitations
  21. Meng-Chuan Lai , Peter Szatmari (2019). Resilience in autism: Research and practice prospects . Autism, 23(3), 539-541. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319842964 OpenAlex: https://openalex.org/W2937802461
    Crossref OpenAlex OpenCitations
  22. Amanda C. Gulsrud , Laudan B. Jahromi , CONNIE KASARI (2010). The Co-Regulation of Emotions Between Mothers and their Children with Autism . Journal of Autism and Developmental Disorders, 40(2), 227-237. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-009-0861-x OpenAlex: https://openalex.org/W2136435361
    Crossref OpenAlex OpenCitations
  23. Victoria Ting , Jonathan Weiss (2017). Emotion Regulation and Parent Co-Regulation in Children with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 47(3), 680-689. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-3009-9 OpenAlex: https://openalex.org/W2570618194
    Crossref OpenAlex OpenCitations
  25. Lorelli S. Nowell , Jill M. Norris , Deborah E. White , Nancy J. Moules (2017). Thematic Analysis . International Journal of Qualitative Methods, 16(1), 1. SAGE Publications.
    Type: Article DOI: 10.1177/1609406917733847 OpenAlex: https://openalex.org/W2763766763
    Crossref OpenAlex OpenCitations
  26. Chris Boyle , Andy Barker (2006). Constructing Grounded Theory. A Practical Guide Through Qualitative Analysis . QMiP Bulletin, 1(2), 36-38. British Psychological Society.
    Type: Article DOI: 10.53841/bpsqmip.2006.1.2.36 OpenAlex: https://openalex.org/W2608014122
    OpenAlex
  27. Iemmi (2017). B14 Why the project is needed. The Autism Dividend. National Autism Project..
    Type: Other
    Crossref
  29. Sarah Lonbay , Amy Pearson * , Emma Hamilton , Pat Higgins , Emma Foulkes , Michelle Glascott (2021). Trauma informed participatory research: Reflections on co-producing a research proposal . Gateways: International Journal of Community Research and Engagement, 14(1), 1. University of Technology, Sydney (UTS).
    Type: Article DOI: 10.5130/ijcre.v14i1.7728 OpenAlex: https://openalex.org/W3182814370
    Crossref OpenAlex OpenCitations
  30. (2019). B20 An independent guide to quality care for autistic people..
    Type: Other
    Crossref
  31. Christie Welch , Deb Cameron , Margaret Fitch , Helene Polatajko (2022). From “since” to “if”: using blogs to explore an insider-informed framing of autism . Disability & Society, 37(4), 638-661. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2020.1836479 OpenAlex: https://openalex.org/W3093514897
    Crossref OpenAlex OpenCitations
  33. Philip Burnard (2006). Constructing Grounded Theory: A practical guide through qualitative analysis Kathy Charmaz Constructing Grounded Theory: A practical guide through qualitative analysis Sage 224 £19.99 0761973532 0761973532 . Nurse Researcher, 13(4), 84-84. RCN Publishing Ltd..
    Type: Article DOI: 10.7748/nr.13.4.84.s4
    OpenCitations
  34. Glenn Robert (2013). B28 Self-regulation strategies for students with autism spectrum disorder in Interventions for Autism Spectrum Disorders: translating Science into Practice., 257.
    Type: Other
    Crossref
  35. Schaber (2014). B29 Ask an autistic #20- What are autistic shutdowns? Youtube..
    Type: Other
    Crossref
  36. Townsend (2013). B32 Enabling Occupation II: advancing An Occupational Therapy Vision For Health, Well-Being And Justice Through Occupation..
    Type: Other
    Crossref