Psychometric Properties of the AASPIRE Autistic Burnout Measure – Revised
Background Autistic Chronic Energy Depletion Syndrome, commonly referred to as Autistic Burnout, is a debilitating condition characterized by exhaustion, loss of function, and reduced tolerance to stimuli. While several instruments attempt to measure it, validation studies have only used cross-sectional designs and/or convenience samples with low support needs, limiting understanding of their performance across heterogeneous, autistic populations and over time.
Methods Using a community-based participatory research (CBPR) approach, we revised the 27-item AASPIRE Autistic Burnout Measure (AABM) into a 14-item AASPIRE Autistic Burnout Measure-Revised (AABM-R) and tested it in a longitudinal study of 835 autistic adults recruited from healthcare systems, disability services, and the community. Participants completed surveys directly (with or without support) or via a caregiver. We assessed structural validity and measurement invariance using exploratory and confirmatory factor analysis, tested construct validity through a priori hypothesis testing, examined discriminant validity from depression using longitudinal factor analysis, and assessed criterion validity using ROC analysis.
Results The AABM-R demonstrated a clear single-factor structure among direct reporters, with and without support, and measurement invariance across these groups; findings were less conclusive for the smaller caregiver-report subsample. Autistic burnout correlated as hypothesized with stressors (e.g., discrimination, masking, adverse childhood experiences), supports (e.g., social support, receiving needed help with daily living activities), and broader outcomes (e.g., quality of life, depression, anxiety). Longitudinal modeling supported autistic burnout as empirically distinct from, though related to, depression. ROC analysis (AUC = 0.89) supported cut-offs distinguishing probable (33-56, LR 7.38), unsure, and unlikely (0-22, LR 0.15) burnout.
Conclusions The AABM-R is a brief, accessible, psychometrically sound measure of autistic burnout suitable for heterogeneous autistic populations, with preliminary clinical cut-offs to guide screening. Further research is needed on the caregiver-report version and on longitudinal predictors and outcomes of burnout.
Why is this an important issue? Autistic burnout makes people feel exhausted, and it makes it harder for them to function or deal with sensory sensitivities. It can be a very serious problem. The autistic community has recognized autistic burnout for a long time, but the science is only starting to catch up. We need good ways to measure burnout to better understand and treat it, but researchers haven’t yet fully tested survey measures in diverse groups of autistic adults.
What was the purpose of this study? To test a shortened, more accessible autistic burnout questionnaire called the AASPIRE Autistic Burnout Measure-Revised (AABM-R).
What did the researchers do? Our team of autistic community members and researchers worked together as equal partners throughout the project. We shortened an earlier version of the questionnaire from 27 to 14 questions and tried to make it easier to understand.
We tested this new questionnaire with 835 autistic adults. People in the sample had a wide range of abilities and experiences. Some people used the “direct report” version to answer questions themselves, with or without support. When that wasn’t possible, caregivers used the “caregiver report” version to answer questions for them. People took the same survey three times over about a year.
We used a lot of statistics to see if the burnout scale works well.
What were the results and conclusions of the study? 1) The direct report version of the AABM-R had good “structural validity.” That means it holds together well and it measures one single idea. The data was less clear for the caregiver report version.
2) For people using the direct report version, it worked the same way whether or not they needed help to take part in the study. (That’s called “measurement invariance.”)
3) The scale had good “construct validity.” That means that burnout scores were linked to stressors, supports, health, and quality of life in the ways we predicted.
4) The burnout scale measures something that is distinctly different from depression.
5) Scores of 0 to 22 on the AABM_R14 mean that burnout is less likely and scores of 33 to 56 mean that it is more likely. Scores in between don’t tell us much.
What is new or controversial about these findings? The findings give us more reason to believe that the direct report version of the AABM-R works well and they help us interpret scores. Our study included autistic people with a wider range of strengths and challenges than other studies.
What are potential weaknesses in the study? Not enough caregivers took part to see how well the caregiver-report version of the AABM-R works. We only measured masking with only one question, not a full questionnaire.
How will these findings help autistic adults now or in the future? The AABM-R gives people a short way to measure autistic burnout. That can help guide conversations with clinicians about burnout. In the future, it may also help researchers understand what causes burnout and whether services and supports actually help.
### Competing Interest Statement
The authors have declared no competing interest.
### Clinical Protocols
https://doi.org/10.31234/osf.io/4m3bf_v6
### Author Declarations
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The Institutional Review Board (IRB) at Portland State University (PSU) approved the project and served as the Single IRB (approval # 227674-18); Oregon Health & Science University, Vanderbilt University Medical Center, and San Diego State University waived authorization to the PSU IRB. Involvement by the Multnomah County Developmental Disability Services was subsumed under the PSU IRB. Participants or their legally authorized representatives gave written consent online or in-person.
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National Institute of Mental Health, https://ror.org/04xeg9z08, R01MH121407
National Center for Advancing Translational Sciences, https://ror.org/04pw6fb54, UL1TR002369