Confirming the nature of autistic burnout / Samuel R.C. ARNOLD in Autism, 27-7 (October 2023)  

Public ISBD [article]  inAutism > 27-7 (October 2023) . - p.1906-1918 Titre : Confirming the nature of autistic burnout Type de document : texte imprimé Auteurs : Samuel R.C. ARNOLD, Auteur ; Julianne M. HIGGINS, Auteur ; Janelle WEISE, Auteur ; Aishani DESAI, Auteur ; Elizabeth PELLICANO, Auteur ; Julian N. TROLLOR, Auteur Article en page(s) : p.1906-1918 Langues : Anglais (eng) Mots-clés : autism  autistic burnout  burnout  camouflaging  double empathy  masking Index. décimale : PER Périodiques Résumé : Autistic burnout is an experience commonly described by autistic people (#AutBurnout and #AutisticBurnout on social media). Recently, two definitions of this syndrome have been published. Both describe debilitating exhaustion with onset related to various stressors including masking, though several differences exist, such as the characteristic of interpersonal withdrawal. We sought to explore the content validity of these definitions including duration and frequency criteria, using descriptive statistics, content analysis and reflexive thematic analysis. A co-produced survey of 141 autistic adults with experience of autistic burnout showed strong endorsement of the definition by Higgins et al., where exhaustion and interpersonal withdrawal occur alongside reduced functioning, executive functioning difficulties, and increased manifestation of autistic traits. Duration and frequency criteria were unresolved, with qualitative data highlighting varying (both acute and chronic) experiences. Autistic burnout is frequently misdiagnosed as depression, anxiety, bipolar disorder, borderline personality disorder or other conditions. Work is needed to increase community and clinician awareness, as well as initiatives to improve unaccommodating neurotypical environments. More research and validation are needed in larger samples not restricted to autistic adults who have experienced autistic burnout to determine prevalence and risk factors as well as duration and frequency.Lay abstractAutistic burnout is something autistic people have been talking about for a while (see #AutBurnout and #AutisticBurnout on social media). Recently, researchers published two different definitions of autistic burnout. We wanted to test these definitions. We wanted to confirm the duration and frequency of autistic burnout. That is, how long and how often do people get autistic burnout? We surveyed 141 autistic adults who had autistic burnout. We used descriptive statistics, content analysis and reflexive thematic analysis to analyse the survey responses. Autistic adults strongly agreed with the definition published by Higgins et al. How long and how often people get autistic burnout was not clear. Participants told us they have both short and long episodes. Participants told us that autistic burnout leads to exhaustion. They needed to withdraw from being with other people. They needed to stay away from autism unfriendly places. Many had been misdiagnosed as having depression, anxiety, bipolar disorder, borderline personality disorder or other conditions. We need increased awareness of autistic burnout. Autistic people need more help. More research is needed, we need to have bigger studies to understand autistic burnout. En ligne : http://dx.doi.org/10.1177/13623613221147410 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510 [article] Confirming the nature of autistic burnout [texte imprimé] / Samuel R.C. ARNOLD, Auteur ; Julianne M. HIGGINS, Auteur ; Janelle WEISE, Auteur ; Aishani DESAI, Auteur ; Elizabeth PELLICANO, Auteur ; Julian N. TROLLOR, Auteur . - p.1906-1918. Langues : Anglais (eng) in Autism > 27-7 (October 2023) . - p.1906-1918 Mots-clés : autism  autistic burnout  burnout  camouflaging  double empathy  masking Index. décimale : PER Périodiques Résumé : Autistic burnout is an experience commonly described by autistic people (#AutBurnout and #AutisticBurnout on social media). Recently, two definitions of this syndrome have been published. Both describe debilitating exhaustion with onset related to various stressors including masking, though several differences exist, such as the characteristic of interpersonal withdrawal. We sought to explore the content validity of these definitions including duration and frequency criteria, using descriptive statistics, content analysis and reflexive thematic analysis. A co-produced survey of 141 autistic adults with experience of autistic burnout showed strong endorsement of the definition by Higgins et al., where exhaustion and interpersonal withdrawal occur alongside reduced functioning, executive functioning difficulties, and increased manifestation of autistic traits. Duration and frequency criteria were unresolved, with qualitative data highlighting varying (both acute and chronic) experiences. Autistic burnout is frequently misdiagnosed as depression, anxiety, bipolar disorder, borderline personality disorder or other conditions. Work is needed to increase community and clinician awareness, as well as initiatives to improve unaccommodating neurotypical environments. More research and validation are needed in larger samples not restricted to autistic adults who have experienced autistic burnout to determine prevalence and risk factors as well as duration and frequency.Lay abstractAutistic burnout is something autistic people have been talking about for a while (see #AutBurnout and #AutisticBurnout on social media). Recently, researchers published two different definitions of autistic burnout. We wanted to test these definitions. We wanted to confirm the duration and frequency of autistic burnout. That is, how long and how often do people get autistic burnout? We surveyed 141 autistic adults who had autistic burnout. We used descriptive statistics, content analysis and reflexive thematic analysis to analyse the survey responses. Autistic adults strongly agreed with the definition published by Higgins et al. How long and how often people get autistic burnout was not clear. Participants told us they have both short and long episodes. Participants told us that autistic burnout leads to exhaustion. They needed to withdraw from being with other people. They needed to stay away from autism unfriendly places. Many had been misdiagnosed as having depression, anxiety, bipolar disorder, borderline personality disorder or other conditions. We need increased awareness of autistic burnout. Autistic people need more help. More research is needed, we need to have bigger studies to understand autistic burnout. En ligne : http://dx.doi.org/10.1177/13623613221147410 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510

Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout / Julianne M. HIGGINS in Autism, 25-8 (November 2021)  

Public ISBD [article]  inAutism > 25-8 (November 2021) . - p.2356-2369 Titre : Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout Type de document : texte imprimé Auteurs : Julianne M. HIGGINS, Auteur ; Samuel R.C. ARNOLD, Auteur ; Janelle WEISE, Auteur ; Elizabeth PELLICANO, Auteur ; Julian N. TROLLOR, Auteur Article en page(s) : p.2356-2369 Langues : Anglais (eng) Mots-clés : Adult  Autism Spectrum Disorder  Autistic Disorder  Burnout, Psychological  Humans  Delphi  autistic burnout  burnout  definition  grounded theory Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1177/13623613211019858 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451 [article] Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout [texte imprimé] / Julianne M. HIGGINS, Auteur ; Samuel R.C. ARNOLD, Auteur ; Janelle WEISE, Auteur ; Elizabeth PELLICANO, Auteur ; Julian N. TROLLOR, Auteur . - p.2356-2369. Langues : Anglais (eng) in Autism > 25-8 (November 2021) . - p.2356-2369 Mots-clés : Adult  Autism Spectrum Disorder  Autistic Disorder  Burnout, Psychological  Humans  Delphi  autistic burnout  burnout  definition  grounded theory Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1177/13623613211019858 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=451

'I'm not just a guinea pig': Academic and community perceptions of participatory autism research / Jacquiline DEN HOUTING in Autism, 25-1 (January 2021)  

Public ISBD [article]  inAutism > 25-1 (January 2021) . - p.148-163 Titre : 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research Type de document : texte imprimé Auteurs : Jacquiline DEN HOUTING, Auteur ; Julianne M. HIGGINS, Auteur ; Kathy ISAACS, Auteur ; Joanne MAHONY, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.148-163 Langues : Anglais (eng) Mots-clés : autism  co-production  community engagement  participatory research  patient and public involvement  stakeholders Index. décimale : PER Périodiques Résumé : Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well. En ligne : http://dx.doi.org/10.1177/1362361320951696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437 [article] 'I'm not just a guinea pig': Academic and community perceptions of participatory autism research [texte imprimé] / Jacquiline DEN HOUTING, Auteur ; Julianne M. HIGGINS, Auteur ; Kathy ISAACS, Auteur ; Joanne MAHONY, Auteur ; Elizabeth PELLICANO, Auteur . - p.148-163. Langues : Anglais (eng) in Autism > 25-1 (January 2021) . - p.148-163 Mots-clés : autism  co-production  community engagement  participatory research  patient and public involvement  stakeholders Index. décimale : PER Périodiques Résumé : Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well. En ligne : http://dx.doi.org/10.1177/1362361320951696 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437

Towards the measurement of autistic burnout / Samuel R.C. ARNOLD in Autism, 27-7 (October 2023)  

Public ISBD [article]  inAutism > 27-7 (October 2023) . - p.1933-1948 Titre : Towards the measurement of autistic burnout Type de document : texte imprimé Auteurs : Samuel R.C. ARNOLD, Auteur ; Julianne M. HIGGINS, Auteur ; Janelle WEISE, Auteur ; Aishani DESAI, Auteur ; Elizabeth PELLICANO, Auteur ; Julian N. TROLLOR, Auteur Article en page(s) : p.1933-1948 Langues : Anglais (eng) Mots-clés : autism  autistic burnout  burnout  camouflaging  double empathy  masking Index. décimale : PER Périodiques Résumé : Studies are emerging documenting the experience of fatigue, exhaustion and loss of functioning that has long been described by autistic adults as autistic burnout. New assessment tools are needed to enable identification and diagnosis. Here, we sought to identify factors associated with severity, develop an autistic burnout assessment and test the prepublication AASPIRE Autistic Burnout Measure tool. A co-produced survey of 141 autistic adults with experience of autistic burnout (98% above cut-off for depression) was subjected to exploratory factor analysis and scale reduction to identify a grouping of Autistic Burnout Severity Items. Autistic Burnout Severity Items showed strong overall internal consistency and acceptable internal consistency across four factors. Masking and depression were associated with the Autistic Burnout Severity Items, once variation in alexithymia, interoception, repetitive behaviours, sensory sensitivities and autism severity had been adjusted for. There is some suggestion that the Autistic Burnout Measure may not be as robust as the Autistic Burnout Severity Items, particularly as it showed a significant relationship with depression but not masking. Our findings alongside recent literature highlight a core phenomenon, comprising exhaustion, withdrawal and cognitive overload, associated with stressors potentially unique to autistic people. Further disambiguation from autistic shutdown and other conditions is needed in work towards the measurement of autistic burnout.Lay abstractAutistic burnout has been talked about by autistic adults for some time on blogs and in social media. Now, research describes fatigue, exhaustion and other related symptoms experienced by autistic people. We need new ways to help identify autistic burnout. In this study, we tested a new questionnaire called the AASPIRE Autistic Burnout Measure, and we investigated things that are linked to worse autistic burnout. We also trialled a group of Autistic Burnout Severity Items that we made. Working with an autistic researcher, we made the Autistic Burnout Severity Items based on published definitions of autistic burnout. Autistic adults (n=141) who had experienced autistic burnout completed an online survey. We found that autistic burnout was connected to masking and depression. The Autistic Burnout Measure tool was associated with depression but not with masking. It was not very accurate in telling apart participants who were currently experiencing burnout versus those who were reporting on their past experience. The Autistic Burnout Severity Items might have problems with subscales adding together to measure autistic burnout. More work is needed on how to measure autistic burnout. Our research and other recent studies show autistic people experience a combination of exhaustion, withdrawal and problems with their concentration and thinking. Burnout seems to be linked to the stress experienced by autistic people in their daily lives. We need more research to understand the difference between autistic burnout and other conditions and experiences. We need to develop assessment tools that can help identify this burnout. En ligne : http://dx.doi.org/10.1177/13623613221147401 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510 [article] Towards the measurement of autistic burnout [texte imprimé] / Samuel R.C. ARNOLD, Auteur ; Julianne M. HIGGINS, Auteur ; Janelle WEISE, Auteur ; Aishani DESAI, Auteur ; Elizabeth PELLICANO, Auteur ; Julian N. TROLLOR, Auteur . - p.1933-1948. Langues : Anglais (eng) in Autism > 27-7 (October 2023) . - p.1933-1948 Mots-clés : autism  autistic burnout  burnout  camouflaging  double empathy  masking Index. décimale : PER Périodiques Résumé : Studies are emerging documenting the experience of fatigue, exhaustion and loss of functioning that has long been described by autistic adults as autistic burnout. New assessment tools are needed to enable identification and diagnosis. Here, we sought to identify factors associated with severity, develop an autistic burnout assessment and test the prepublication AASPIRE Autistic Burnout Measure tool. A co-produced survey of 141 autistic adults with experience of autistic burnout (98% above cut-off for depression) was subjected to exploratory factor analysis and scale reduction to identify a grouping of Autistic Burnout Severity Items. Autistic Burnout Severity Items showed strong overall internal consistency and acceptable internal consistency across four factors. Masking and depression were associated with the Autistic Burnout Severity Items, once variation in alexithymia, interoception, repetitive behaviours, sensory sensitivities and autism severity had been adjusted for. There is some suggestion that the Autistic Burnout Measure may not be as robust as the Autistic Burnout Severity Items, particularly as it showed a significant relationship with depression but not masking. Our findings alongside recent literature highlight a core phenomenon, comprising exhaustion, withdrawal and cognitive overload, associated with stressors potentially unique to autistic people. Further disambiguation from autistic shutdown and other conditions is needed in work towards the measurement of autistic burnout.Lay abstractAutistic burnout has been talked about by autistic adults for some time on blogs and in social media. Now, research describes fatigue, exhaustion and other related symptoms experienced by autistic people. We need new ways to help identify autistic burnout. In this study, we tested a new questionnaire called the AASPIRE Autistic Burnout Measure, and we investigated things that are linked to worse autistic burnout. We also trialled a group of Autistic Burnout Severity Items that we made. Working with an autistic researcher, we made the Autistic Burnout Severity Items based on published definitions of autistic burnout. Autistic adults (n=141) who had experienced autistic burnout completed an online survey. We found that autistic burnout was connected to masking and depression. The Autistic Burnout Measure tool was associated with depression but not with masking. It was not very accurate in telling apart participants who were currently experiencing burnout versus those who were reporting on their past experience. The Autistic Burnout Severity Items might have problems with subscales adding together to measure autistic burnout. More work is needed on how to measure autistic burnout. Our research and other recent studies show autistic people experience a combination of exhaustion, withdrawal and problems with their concentration and thinking. Burnout seems to be linked to the stress experienced by autistic people in their daily lives. We need more research to understand the difference between autistic burnout and other conditions and experiences. We need to develop assessment tools that can help identify this burnout. En ligne : http://dx.doi.org/10.1177/13623613221147401 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510

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