Measuring and validating autistic burnout.

Researchers have begun to explore the characteristics and risk factors for autistic burnout, but assessment tools are lacking. Our study comprehensively examined and compared the psychometric properties of the unpublished 27-item AASPIRE Autistic Burnout Measure (ABM), and personal and work scales of the Copenhagen Burnout Inventory (CBI) to evaluate their efficacy as screening measures for autistic burnout, with a group of 238 autistic adults. Exploratory factor analyses (EFA) revealed a 4-factor structure for the ABM and a 2-factor structure for the CBI personal scale (CBI-P). Factorial validity and dimensionality were examined with four exploratory models which indicated a unidimensional structure for the ABM with an overarching 'Autistic Burnout' construct, and multidimensional CBI-P structure comprising two subscales and overarching 'Personal Burnout' construct. Other reliability and validity indicators included Spearman correlations, analysis of variance, receiver operating characteristics, sensitivity, specificity, and intra-class correlations (ICC). The ABM and CBI-P were strongly correlated with depression, anxiety, stress, and fatigue. Unexpectedly, correlations between the burnout measures and camouflaging, and wellbeing measures were moderate. Potential overlap between burnout and depression and fatigue was examined through EFA, which supported convergent validity of the ABM and depression measure, while correlations and ICC analyses revealed mixed results. We concluded that the ABM and the CBI-P Emotional Exhaustion subscale were valid preliminary screening tools for autistic burnout. Testing with larger and more diverse autistic samples is required to further examine the psychometric properties of the ABM, and to understand the relationships between autistic burnout and depression, and masking.

Examining subjective understandings of autistic burnout using Q methodology: A study protocol.

BACKGROUND: Early research indicates that autistic burnout is a chronic, debilitating condition experienced by many autistic people across the lifespan that can have severe consequences for their mental health, wellbeing, and quality of life. To date, studies have focused on the lived experiences of autistic adults, and findings suggest that a lack of support, understanding, and acceptance by others can contribute to the risk of autistic burnout. The study outlined in this protocol will investigate how autistic people with and without experience of autistic burnout, their families, friends, healthcare professionals and non-autistic people understand the construct of autistic burnout to identify commonalities and gaps in knowledge. STUDY AND DESIGN: Q methodology will be used to investigate participants' subjective understandings of autistic burnout. Q methodology is a mixed-methods design that is well-suited to exploratory research and can elucidate a holistic and comprehensive representation of multiple perspectives about a topic. Participants will complete a card sorting activity to rank how strongly they agree or disagree with a set of statements about autistic burnout and participate in a semi-structured interview to discuss their responses. A first-order factor analysis will be conducted for each participant group, followed by second-order factor analysis to compare the groups' viewpoints. The interview data will provide additional insights into the factors. CONCLUSION: Q methodology has not previously been used to examine autistic and non-autistic people's perspectives about autistic burnout. Projected study outcomes include enhanced understanding of the characteristics, risks, and protective factors of autistic burnout. The findings will have practical implications for improving detection of autistic burnout and identifying strategies to support autistic adults with prevention and recovery. The results may also inform the development of a screening protocol and identify potential avenues for future research.

A conceptual model of risk and protective factors for autistic burnout.

Early qualitative research indicates that autistic burnout is commonly experienced by autistic people and is associated with significant, negative consequences for their mental health, wellbeing, and quality of life, including suicidality. Findings to date suggest that factors associated with being autistic and the widespread lack of autism awareness and acceptance within society contribute to the onset and recurrence of autistic burnout. Based on autistic adults' descriptions of their lived experiences, a Conceptual Model of Autistic Burnout (CMAB) is proposed, which describes a series of hypothesized relationships between identified risk and protective factors that may contribute to, or buffer against, autistic burnout. The theoretical framework for the CMAB is based on the Social-Relational model of disability and neurodiversity paradigm, and the Job Demands-Resources model of burnout, and Conservation of Resources theory. The CMAB offers a holistic perspective for understanding individual, social, and environmental factors that can influence autistic burnout via various direct and indirect pathways. Autistic burnout research is in its infancy and the CMAB provides a foundation for future investigations about this condition. LAY SUMMARY: Although many autistic people describe experiencing autistic burnout, there has been little research on this topic. Based on descriptions of autistic peoples' lived experiences, we developed a conceptual model to explore how various risk and protective factors may interact to contribute to, or prevent, autistic burnout.

What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms.

Background: Compared with adults in the general population, autistic adults are more likely to experience poor mental health, which can contribute to increased suicidality. While the autistic community has long identified autistic burnout as a significant mental health risk, to date, only one study has been published. Early research has highlighted the harmful impact of autistic burnout among autistic adults and the urgent need to better understand this phenomenon. Methods: To understand the lived experiences of autistic adults, we used data scraping to extract public posts about autistic burnout from 2 online platforms shared between 2005 and 2019, which yielded 1127 posts. Using reflexive thematic analysis and an inductive "bottom-up" approach, we sought to understand the etiology, symptoms, and impact of autistic burnout, as well as prevention and recovery strategies. Two autistic researchers with self-reported experience of autistic burnout reviewed the themes and provided insight and feedback. Results: We identified eight primary themes and three subthemes across the data. (1) Systemic, pervasive lack of autism awareness. (1.1) Discrimination and stigma. (2) A chronic or recurrent condition. (3) Direct impact on health and well-being. (4) A life unlived. (5) A blessing in disguise? (6) Self-awareness and personal control influence risk. (6.1) "You need enough balloons to manage the weight of the rocks." (7) Masking: Damned if you do, damned if you don't. (8) Ask the experts. (8.1) Stronger together. The overarching theme was that a pervasive lack of awareness and stigma about autism underlie autistic burnout. Conclusions: We identified a set of distinct yet interrelated factors that characterize autistic burnout as a recurring condition that can, directly and indirectly, impact autistic people's functioning, mental health, quality of life, and well-being. The findings suggest that increased awareness and acceptance of autism could be key to burnout prevention and recovery.

What was the purpose of this study?: Although the autistic community has talked about autistic burnout for a long time, there has not been much research about the topic. This study aimed to investigate autistic burnout from the perspective of autistic adults to understand what they think causes it, the symptoms and impact on their lives, and what can be done to assist prevention and recovery. Why is this an important issue?: This issue is important because autistic people have said that autistic burnout can severely affect their quality of life and well-being and contribute to poor mental health, including the risk of suicide. What did the researchers do?: We used a computer program to collect public posts from two online platforms to look at how autistic adults described autistic burnout. We collected 1127 posts shared over a 12-year period by 683 users. To understand the adults' lived experiences, we analyzed their language at the surface level and looked for common themes across the data. What were the results of the study?: The adults in this study said that autistic burnout was often first experienced during adolescence, lasted months or years, and was hard to recover from. They described severe direct and indirect consequences for their physical and mental health, capacity to function, and ability to achieve personal goals. They described a general lack of knowledge about autism, especially among health care professionals, which led to misdiagnosis and inadequate or inappropriate treatment. Masking or "camouflaging" to pass as nonautistic was the most common reason participants gave for autistic burnout. Many used strategies to manage energy levels to avoid burnout. The autistic community was an essential source of information and support for participants. Overall, stigma, discrimination, and low awareness and acceptance of autism were responsible for the cycle of autistic burnout. How do these findings add to what was already known?: As one of the first studies about autistic burnout, we learned that it happens because of factors associated with being autistic and poor autism awareness and acceptance within society. We now know that autistic people often first experience autistic burnout when they are young, but it usually recurs, which can stop autistic people leading fulfilling lives. We learned that difficulty identifying emotions may be a risk factor and that online communication may help autistic people during recovery. We found that some positive consequences of autistic burnout include autism diagnosis in adulthood, finding the autistic community, and making empowering lifestyle changes. What are the potential weaknesses in the study?: We had limited demographic information, so we do not know how diverse the sample was or how factors such as gender, age, race, or identifying as LGBTQI may have influenced some people's experience of autistic burnout. The adults in this study had access to online platforms and could communicate in writing, and so, people with higher communication support needs may not have been included. How will these recommendations help autistic adults now or in the future?: The findings reinforce the personal stories of autistic people and show that autistic burnout is a common, consistent, and harmful experience. The findings show it is vital for health professionals to recognize autistic burnout to provide appropriate care and support because prevention and early detection could help stop the harmful cycle of autistic burnout. The findings underscore the importance of reducing discrimination and stigma against autistic people and increased acceptance.