& 2024-04-16 Defining autistic burnout through experts by lived experience Grounded Delphi method investigating AutisticBurnout

> [!link] > zotero_link:: [Higgins et al_2021_Defining autistic burnout through experts by lived experience.pdf](zotero://select/library/items/JNBB47XD) > [!cite] > citekey:: higginsDefiningAutisticBurnout2021 > [!abstract] > 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. > [!abstract] Lay Abstract > 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. > [!keywords] > keywords:: 📂️, autistic burnout, burnout, Delphi, grounded theory > [!authors] > authors:: Julianne M Higgins, Samuel Rc Arnold, Janelle Weise, Elizabeth Pellicano, Julian N Trollor > [!meta] > url:: http://journals.sagepub.com/doi/10.1177/13623613211019858 > doi:: 10.1177/13623613211019858 > [!related] > related:: raymakerHavingAllYour2020 ```dataview TABLE created, updated as modified, tags, type FROM "" WHERE related != null AND contains(related, "higginsDefiningAutisticBurnout2021") ``` > [!hypothesis] > hypothesis:: > [!methodology] > methodology:: > [!result] Result(s) > results:: > [!summary] Summary of Key Points > summary:: ## Notes | Highlight Color | Meaning | | ---------------------------------------------- | ----------------------------- | | Red | Disagree with Author | | Orange | Important Point By Author | | Yellow | Interesting Point | | Green | Important To Me | | Blue | Notes After Initial Iteration | | Purple | Literary Note To Lookup Later | - "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.” [Page 1](zotero://open-pdf/library/items/JNBB47XD?page=1&annotation=PFEW536C) - "Psychological treatments for depression potentially could make autistic burnout worse.” [Page 1](zotero://open-pdf/library/items/JNBB47XD?page=1&annotation=BV6IR77P) - "According to autistic advocates, burnout can involve the progressive loss of speech, social skills, memory capacity, executive function, self-care capabilities and a reduced ability to cope with sensory overload (Boren, 2017; Rose, 2018)” [Page 2](zotero://open-pdf/library/items/JNBB47XD?page=2&annotation=UCAQE8ZT) - "Although there may be a withdrawal or distancing from occupation in non-autistic burnout, there is a more complete social isolation for many experiencing autistic burnout. Non-autistic burnout does not appear to include the cognitive disruption that many of our experts reported.” [Page 9](zotero://open-pdf/library/items/JNBB47XD?page=9&annotation=2DC6SCXF) - "Boren, R. (2017, January 26). Autistic burnout: The cost of masking and passing. Ryan Boren. https://boren.blog/2017/01/26/ autistic-burnout-the-cost-of-coping-and-passing/” [Page 13](zotero://open-pdf/library/items/JNBB47XD?page=13&annotation=24XCPQQP) - "Cage, E., & Troxell-Whitman, Z. (2019). Understanding the reasons, contexts and costs of camouflaging for autistic adults. Journal of Autism and Developmental Disorders, 49(5), 1899–1911. https://doi.org/10.1007/s10803-018-03878-x” [Page 13](zotero://open-pdf/library/items/JNBB47XD?page=13&annotation=TDKV6G79) - "Milton, D. (2012). On the ontological status of autism: The ‘double empathy problem’.. Disability & Society, 27(6), 883887. https://doi.org/10.1080/09687599.2012.710008” [Page 13](zotero://open-pdf/library/items/JNBB47XD?page=13&annotation=QWNP2MZX) - "Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., 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 Adult” [Page 13](zotero://open-pdf/library/items/JNBB47XD?page=13&annotation=CI4ZSQRA) > [!context] > ==(How this article relates to other work in the field; how it ties in with key issues and findings by others, including yourself)== > context:: > [!significance] > ==(to the field; in relation to your own work)== > significance::