Measuring And Validating Autistic Burnout

Autistic burnout is a state of intense physical, mental, and emotional exhaustion experienced by autistic individuals.

It is often caused by the cumulative stress of navigating a world designed for neurotypical people, facing social challenges, sensory overload, and the pressure to mask autistic traits.

Burnout can manifest as a loss of skills, reduced executive functioning, and increased difficulty managing daily life. Autistic individuals experiencing burnout may feel overwhelmed, disconnected, and unable to meet expectations.

The impact of burnout can be severe, leading to a decline in overall well-being, mental health issues, and a decreased ability to engage in activities that were previously manageable.

Recognizing and understanding autistic burnout is crucial for providing appropriate support and accommodations to improve the quality of life for autistic individuals. Ultimately it can help with recovering from or preventing autistic burnout.

Mantzalas, J., Richdale, A. L., Li, X., & Dissanayake, C. (2024). Measuring and validating autistic burnout. Autism Research. Advance online publication. https://doi.org/10.1002/aur.3129

Key Points

• Researchers examined the psychometric properties of the 27-item AASPIRE Autistic Burnout Measure (ABM) and the personal and work scales of the Copenhagen Burnout Inventory (CBI) to evaluate their efficacy as screening measures for autistic burnout in a group of 238 autistic adults.
• Exploratory factor analysis revealed a 4-factor structure for the ABM, indicating a unidimensional structure with an overarching ‘Autistic Burnout’ construct and a 2-factor multidimensional structure for the CBI personal scale (CBI-P) comprising two subscales and an overarching ‘Personal Burnout’ construct.
• The ABM and CBI-P were strongly correlated with depression, anxiety, stress, and fatigue. Unexpectedly, correlations between the burnout measures and camouflaging and well-being measures were moderate.
• Potential overlap between burnout and depression and fatigue was examined. Analysis supported convergent validity of the ABM and depression measure, while correlations and intra-class correlation analyses revealed mixed results.
• The ABM and the CBI-P Emotional Exhaustion subscale were concluded to be valid preliminary screening tools for autistic burnout. More testing is needed with larger and more diverse autistic samples.

Rationale

Autistic burnout, characterized by debilitating mental, physical, and emotional exhaustion, occurs because autistic people experience more difficulties in everyday life than non-autistic people (Gillott & Standen, 2007; Moseley et al., 2021).

Factors contributing to burnout risk include social communication difficulties between autistic and non-autistic people leading to frustration, loss of agency, and unmet needs (Donaldson et al., 2022; Sarrett, 2018); overwhelming sensory stimuli; unexpected routine changes; lack of control over one’s environment (Muniandy et al., 2022); and masking behaviors to suppress autistic traits and pass as non-autistic (Han et al., 2021; Pearson & Rose, 2021).

Preliminary studies suggest masking and other stressors can lead to autistic burnout (Higgins et al., 2021; Mantzalas et al., 2021; Raymaker et al., 2020), with consequences including inability to function, brain fog, dissociation, reduced executive functioning and emotion regulation, loss of skills, and increased suicidal ideation (Cook et al., 2021).

Despite informal discussion of autistic burnout in the autistic community since at least 2008 (Mantzalas et al., 2021), research is in its infancy.

Assessment tools are lacking, so this study comprehensively examined the psychometric properties of the ABM and CBI to evaluate their efficacy as screening measures for autistic burnout.

Method

This study examined the psychometric properties of the 27-item AASPIRE Autistic Burnout Measure (ABM) and the Copenhagen Burnout Inventory personal and work scales (CBI-P and CBI-W) in autistic adults.

Sample

The sample included 238 autistic adults (specific demographics not provided).

Measures

• AASPIRE Autistic Burnout Measure (ABM) – 27 items: The ABM is a self-report questionnaire specifically designed to assess the unique characteristics and severity of burnout among autistic individuals, encompassing aspects such as exhaustion, loss of skills, and reduced tolerance for stimuli.
• Copenhagen Burnout Inventory personal scale (CBI-P): The CBI-P is a subscale of the Copenhagen Burnout Inventory that focuses on measuring personal burnout, which refers to the degree of physical and psychological fatigue and exhaustion experienced by an individual in their personal life outside of work.
• Copenhagen Burnout Inventory work scale (CBI-W): The CBI-W is another subscale of the Copenhagen Burnout Inventory that assesses work-related burnout, evaluating the level of physical and psychological fatigue and exhaustion that an individual experiences as a result of their work or occupation.
• Measures of depression, anxiety, stress, fatigue, camouflaging, and wellbeing (not specified)

Procedure

Participants completed the ABM, CBI-P, CBI-W, and measures of depression, anxiety, stress, fatigue, camouflaging, and wellbeing in an online survey.

Statistical Measures

Exploratory factor analysis, Spearman correlations, analysis of variance, receiver operating characteristics, sensitivity, specificity, and intra-class correlations were conducted.

Results

• The ABM had a 4-factor structure indicating a unidimensional ‘Autistic Burnout’ construct.
• The CBI-P had a 2-factor multidimensional structure with an overarching ‘Personal Burnout’ construct.
• The ABM and CBI-P strongly correlated with depression, anxiety, stress and fatigue.
• Correlations between burnout measures and camouflaging/wellbeing were unexpectedly moderate.
• Analysis supported convergent validity of the ABM and depression, while correlations and ICC revealed mixed results regarding overlap of burnout with depression/fatigue.

Insight

This study provides preliminary evidence that the ABM and CBI-P Emotional Exhaustion subscale are valid screening tools for detecting autistic burnout.

The strong correlations of the ABM and CBI-P with depression, anxiety, stress, and fatigue align with previous research characterizing the major features of autistic burnout (Raymaker et al., 2020).

The unexpected moderate correlations with camouflaging/masking and wellbeing warrant further investigation, as masking is considered a major risk factor for autistic burnout (Mantzalas et al., 2021).

The overlap between burnout and depression also requires clarification in future studies with larger samples.

Overall, this research makes an important contribution by validating potential screening tools that could help healthcare providers identify autistic burnout.

Next steps should focus on testing the measures in larger, more diverse autistic populations, especially those with higher support needs who may be most vulnerable to burnout. Exploring early warning signs and preventive strategies is also critical.

Strengths

• Addressed an important under-researched issue affecting autistic wellbeing
• Compared multiple burnout measures and examined relationships to key constructs like depression, anxiety, camouflaging
• Used appropriate statistical methods for evaluating psychometric properties
• Provided preliminary validation of two potential screening tools for clinical use

Limitations

• Modest sample size limits generalizability, especially to more diverse autistic populations
• Convenience sampling may have biased toward autistic adults with lower support needs
• Full sample demographics not reported
• Did not include non-autistic participants to compare factor structures and correlations
• Some analyses (e.g., ROC curves) not fully described in results
• Causality between variables cannot be determined due to correlational design

Implications

Validating accessible screening tools for autistic burnout is a crucial step toward improving mental health care for autistic individuals.

Having ways to reliably detect burnout symptoms can help clinicians intervene earlier and develop personalized support plans. This could significantly enhance well-being and quality of life by preventing loss of functioning.

However, the overlap between burnout and conditions like depression points to the need for comprehensive assessment. Burnout may increase risk for depression and anxiety, which are already more prevalent in autism (Hollocks et al., 2019). Routine screening for burnout could help predict and preempt deteriorating mental health.

More research is needed on how camouflaging contributes to burnout, as this may require tailored interventions to target social pressures and internalized stigma. Investigating resilience factors is also important for a strengths-based approach.

References

Primary reference

Mantzalas, J., Richdale, A. L., Li, X., & Dissanayake, C. (2024). Measuring and validating autistic burnout. Autism Research. Advance online publication. https://doi.org/10.1002/aur.3129

Other references

Gillott, A., & Standen, P. J. (2007). Levels of anxiety and sources of stress in adults with autism. Journal of Intellectual Disabilities, 11(4), 359–370. https://doi.org/10.1177/1744629507083585

Hollocks, M.J., Lerh, J.W., Magiati, I., Meiser-Stedman, R., & Brugha, T.S. (2019). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis. Psychological Medicine, 49(4), 559-572. https://doi.org/10.1017/S0033291718002283

Mantzalas, J., Richdale, A. L., Adikari, A., Lowe, J., & Dissanayake, C. (2021). What is autistic burnout? A thematic analysis of posts on two online platforms. Autism in Adulthood. https://doi.org/10.1089/aut.2021.0021

Moseley, R. L., Turner-Cobb, J. M., Spahr, C. M., Shields, G. S., & Slavich, G. M. (2021). Lifetime and perceived stress, social support, loneliness, and health in autistic adults. Health Psychology, 40(8), 556. https://doi.org/10.1037/hea0001108

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Santos, A. D., 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 Adulthood, ahead of print. https://doi.org/10.1089/aut.2019.0079

Keep Learning

Here are some potential discussion questions for a college class on this paper:

1. How might the experience of autistic burnout differ across the lifespan or intersect with other identities (e.g. gender, race, culture)? What unique challenges might these individuals face in accessing support?
2. The authors note that more research is needed on early warning signs of autistic burnout. What factors do you think might predict increased burnout risk? How could this knowledge inform preventive strategies?
3. Given the potential overlap between autistic burnout and mental health conditions like depression, what considerations should clinicians keep in mind when assessing autistic individuals? How can we ensure burnout is not misdiagnosed or untreated?
4. Discuss the societal factors that contribute to autistic people feeling pressured to camouflage or mask their autistic traits. What changes could help reduce this burden and promote acceptance of autistic ways of being?
5. Brainstorm some ideas for interventions or coping strategies that could help alleviate autistic burnout on both an individual and systemic level. Consider practical supports, accommodations, social networks, and shifts in societal attitudes.