Understanding autistic burnout from experts with lived experience
Abstract
Autistic burnout is commonly described by autistic people but is widely neglected in academic research. An autistic self-advocate wrote, “Burnout is an integral part of the life of an Autistic person … Yet nobody, apart from Autistic people, seem to know about it” (Rose, 2018). Anecdotally, autistic burnout has been described as a debilitating condition linked to suicidal ideation and driven by the stress of living in an unaccommodating neurotypical world. However, the dearth of research means little is known about its causes or consequences.
The Investigating Autistic Burnout Project (#AutBurnout) conceptualized and defined autistic burnout by positioning autistic adults as experts by lived experience. The project produced the first definition of autistic burnout, confirmed the nature of autistic burnout in a new sample, and developed and trialed a measurement tool.
Introduction
Dr Samuel Arnold is a non-autistic psychologist and researcher. Working on the Australian Longitudinal Study of Autism in Adulthood (ALSAA) and talking with the ALSAA Research Advisory Network, Samuel formed a friendship with Julianne Higgins, a passionate autistic advocate. Julianne’s drive to instigate more inclusive research led to discussions of pursuing a co-designed project on an unmet need of the autistic community: autistic burnout.
Samuel and Julianne worked closely together throughout the research process, from conceptualization, drafting the grant, and applying for ethics, to analysis, interpretation, and dissemination. Julianne identified the Grounded Delphi Method as the ideal approach for their first study. They were successful in obtaining competitive funding from the Autism CRC, the world’s first national cooperative research effort focused on autism.
Using the data analysis software NVivo, Samuel and Julianne were able to successfully balance autistic approaches with the traditions of science. Their team included autism and disability experts, as well as the largest autism-focused service provider in Australia: Aspect. Aspect assisted with recruitment and dissemination and invited Samuel and Julianne to co-present at the 2021 Autism Research to Practice Conference.
Who should benefit?
The prevalence of autism is increasing. The latest US data suggests 1 in 44 children are on the autism spectrum. Although autism occurs in all racial, ethnic, and socioeconomic groups, rates vary across the world - mainly due to differences in diagnosis. Autistic adults experience poorer outcomes across a range of indicators that are too often unrecognized and under-reported. In Australia, the Disability Royal Commission stated people with cognitive disability (including autistic adults and people with intellectual disability) experience “systemic neglect” in healthcare. Therefore, projects like the Autistic Burnout Project are important for both the local and global community.
Several studies have confirmed a high burden of co-occurring mental illnesses within autistic adults. In the ALSAA study, over 50% of autistic participants met criteria for clinically significant depression and clinically significant anxiety. This frequency of mental illness is compounded by difficulties accessing and navigating mental health supports. The Autistic Burnout Project’s work showed that autistic individuals were misunderstood: their needs are often discounted, and they are often misdiagnosed with a variety of psychiatric conditions. To date, autistic burnout has been relatively unexplored by the scientific community. Based on anecdotal reports, researchers suspect autistic burnout is prevalent and emerging evidence confirms its significantly debilitating effects. It has been suggested autistic burnout comes from individuals needing to “mask" autistic behaviors to function in a largely neurotypical society. The resultant stress leads to cascading effects on an individual’s social, cognitive, linguistic, and adaptive skills.
Despite being such a pervasive issue for the autistic community, there was only one other research study on this topic when the Autistic Burnout Project commenced their work. Currently, there are four studies on autistic burnout in total, with the Burnout Project scheduled to publish further work on validation and measurement. The Project aims to understand and validate autistic burnout as reported by autistic adults, promote an understanding of autistic burnout to clinicians working in the area, and work towards diagnostic criteria and measurement tools that can be used in clinical practice. Strategies described by participants to manage and recover from burnout are being shared with the autistic community in the hopes that building awareness of autistic burnout in the lives of autistic adults will encourage the broader community to respond with attitudinal and practical changes, affording autistics an accessible, accommodating, and productive place in society.
Engagement
The research positions autistic adults as subject matter experts. Autistic voices co-developed and defined the meaning of ‘autistic burnout’. The project used a participatory research approach, people with lived experience of the focus issue involved in directing and conducting the research. Dr Samuel Arnold and autistic peer researcher Julianne Higgins worked closely throughout the project, conceptualizing the research, drafting the grant application, developing study materials, analyzing data, and interpreting and disseminating findings. Using mixed methods, Julianne led the qualitative data analysis while Samuel led the quantitative analysis. They then worked together to combine and interpret results, supported by colleagues Professor Julian Trollor, Dr Janelle Weise and Professor Liz Pellicano.
Co-production was not easy; Samuel and Julianne would meet regularly via video conferencing to progress the work, edit documents, and collaboratively make decisions. Materials had to be edited to an accessible format for Julianne, and sensitivity was needed to reduce the stress that results from inadequate research timelines and last-minute requests.
The first phase of the project sought to define autistic burnout. It was autistic adults with lived experience of autistic burnout, not non-autistic clinicians, who co-created and approved the consensus definition. Julianne identified the Grounded Delphi Method as particularly suited to the project’s aims, combining Grounded Theory - useful for theory building - with Delphi consensus approaches, useful for areas where there is little established research evidence. Delphi normally positions experienced clinicians as the expert participants. In this project, autistic adults with lived experience of autistic burnout were uniquely positioned as the experts. Central to the project’s process was teaching and supporting Julianne to lead the qualitative analyses, her lived experience critical to understanding the experiences of other autistic adults. In the second phase, Julianne identified the theme of ‘perspective disconnect’, describing the difficulties and differences in understanding and seeing the world between autistic and non-autistic people, and how both groups have difficulties understanding each other – similar to Milton’s (2012) double empathy problem. As such, this work could not be done by non-autistic researchers alone.
Research
The Investigating Autistic Burnout Project co-produced two studies to define autistic burnout and explore its risk factors – a topic identified by our autistic peer researcher, to date neglected by science. A Grounded Delphi Method study developed a consensus definition, which was then validated and trialed with measurement tools in a second survey.
The Grounded Delphi Method is useful for areas where academic literature is lacking. It enabled the “autistic voice” to frame the research and the definition of autistic burnout. Over three rounds of online surveys, autistic adults (experts by lived experience), related their experiences from which a definition was drafted, and consensus reached. Whilst designing the second study (‘Confirming the nature of autistic burnout’), an alternate definition of autistic burnout was published by Raymaker et al. (2020). Accordingly, a large survey was developed to explore the content of the new definitions and to check the frequency and duration of autistic burnout episodes. The study also trialed the new AASPIRE Autistic Burnout Measure (AABM) developed by Raymaker and colleagues and developed a new measure of autistic burnout, the Autistic Burnout Severity Items (ABSI).
Fatigue from masking autism, social interactions, overload of cognitive or sensory input, or other stressors can lead to autistic burnout which involves significant mental and physical exhaustion and interpersonal withdrawal. This was further associated with one or more of the following characteristics: reduced functioning (i.e., performance) in work, education, social or other areas of life; confusion, having problems thinking or losing touch with reality (i.e., dissociation); and/or increased intensity of autistic traits or reduced ability to mask autistic traits. This definition was validated in the second study, with participants strongly agreeing exhaustion and interpersonal withdrawal were key characteristics. While a clear pattern of the duration and frequency of autistic burnout was not found, participants indicated these episodes could be classified as chronic or acute. Both masking and depression were strongly associated with the consensus definition, though only depression was associated with the AABM measure.
