Autistic burnout is a chronic condition characterized by extreme exhaustion, reduced functioning, and heightened sensitivity to stimuli. It results from the ongoing stress of navigating a world not designed for autistic ways of thinking and being, compounded by lack of support and understanding.
Autistic people have identified burnout as a significant, pervasive mental health challenge that can impact their quality of life and lead to worse outcomes.
Understanding autistic burnout is crucial for helping individuals manage and prevent autistic burnout.
Mantzalas, J., Richdale, A. L., Adikari, A., Lowe, J., & Dissanayake, C. (2022). What is autistic burnout? A thematic analysis of posts on two online platforms. Autism in Adulthood, 4(1), 52-65. https://doi.org/10.1089/aut.2021.0021
Key Points
- Autistic burnout is a chronic condition resulting from a mismatch of expectations and abilities without adequate support, characterized by long-term exhaustion, reduced functioning, and heightened sensitivity to stimuli.
- Factors like masking autistic traits, stigma and discrimination, lack of awareness and acceptance of autism significantly contribute to autistic burnout.
- The research, while enlightening, has limitations such as lack of demographic information about participants and only including perspectives of autistic adults who communicate in writing online.
- Understanding autistic burnout is crucial for improving mental health outcomes and quality of life for autistic individuals.
Rationale
Autistic adults experience poorer mental health outcomes compared to the general population, including increased risk of suicidal ideation, self-harm and death by suicide (Cassidy et al., 2018; Hedley & Uljarević, 2018; Hirvikoski et al., 2016).
The autistic community has identified autistic burnout as a significant mental health risk. However, to date only one study has been published on the topic (Raymaker et al., 2020).
Early research highlights the harmful impact of autistic burnout and the urgent need to better understand this phenomenon to inform prevention and support.
Method
This study used qualitative data analysis, specifically reflexive thematic analysis, to examine 1127 public posts about autistic burnout shared on two online platforms, Twitter and Wrong Planet, between 2005-2019.
An inductive, “bottom-up” approach was used to identify patterns of meaning across the data.
Two autistic researchers with self-reported experience of autistic burnout reviewed the themes and provided insight.
Sample
The sample comprised 683 individuals – 612 self-identified autistic adults and 71 non-autistic individuals, including researchers, advocates, parents, and friends of autistic people whose posts addressed the research objectives.
Demographic information was only available for the 124 Wrong Planet users.
Results
Eight primary themes and three subthemes about autistic burnout were identified:
1. Systemic, pervasive lack of autism awareness (overarching theme)
The overarching theme identified was a systemic and pervasive lack of awareness and acceptance of autism, which underlies the occurrence and perpetuation of autistic burnout.
“People who don’t understand Autism are seeing behaviours that they assume are mental health problems. Confusing Burnout for depression, seeing meltdowns & only seeing it as inappropriate negative behaviour, not sensory overwhelm.” (T290)
1.1 Discrimination and stigma
Participants experienced discrimination and stigma related to their autism, which contributed to burnout. Many felt pressure to mask their autistic traits to avoid negative consequences.
“I’m #ActuallyAutistic and I view Autism as a mental health issue, but not a mental illness. Lack of accommodation, stigma, & burnout all affect my MH” (T260)
2. A chronic or recurrent condition
Autistic burnout was described as a chronic or recurring condition, often first experienced in adolescence and recurring throughout adulthood, with recovery taking months or years.
“In burnout now and going on Month 15. No end in sight. Experienced it maybe 4 times now. I crashed and burned hard.” (T386)
3. Direct impact on health and well-being
Autistic burnout had a significant direct impact on participants’ physical and mental health, cognitive abilities, capacity to function, and overall well-being.
“I am so low on energy, I can’t cope with anything right now. I shut down after only little stimuli…I shut down so badly I don’t dare to drive anymore (too dangerous). I don’t enjoy my special interests anymore, and feel mentally stupid” (WP59)
4. A life unlived
Autistic burnout indirectly impacted participants’ lives by limiting educational and employment opportunities, leading to a sense of lost potential and “failure to launch.”
“Oh and good luck breaking into a different field if you succumb to autistic burnout. [..] goodbye income goodbye lifestyle goodbye independence” (T280)
5. A blessing in disguise?
Some participants reported positive outcomes from autistic burnout, such as receiving an autism diagnosis, finding the autistic community, and making beneficial life changes.
“Burnout […] was huge. 39 months later and my life is very different but much more sustainable.” (T476)
Self-awareness and personal control influence risk
Participants’ ability to identify and manage stressors and energy levels influenced their vulnerability to burnout. Lack of control over environments and competing demands increased risk.
“[…] the only thing that would help me is beyond my control […] I have nowhere to go where I’d avoid being overwhelmed.” (WP98)
6.1. “You need enough balloons to manage the weight of the rocks”
Participants used various strategies to manage their energy levels and stressors to prevent or recover from burnout, such as stimming, pursuing special interests, and resting.
“Autism only gives me so much energy to work with and if I overstretch myself, I’ll be prone to meltdown and burnout” (T427)
7. Masking: Damned if you do, damned if you don’t
Masking or camouflaging autistic traits was a double-edged sword – it allowed participants to fit in and access opportunities but was exhausting and often led to burnout. Unmasking, while necessary, also led to negative social consequences.
“I get told by everyone that I seem to be managing my autism well […] but the constant masking at work is exhausting and I ended up in burnout this weekend.” (T349)
8. Ask the experts
Participants positioned themselves as experts on autistic burnout and generously shared knowledge and resources with each other. The findings reinforce the importance of learning directly from autistic people’s lived experiences.
“The autistic community has been saying burnout is a medical problem forever” (T90)
8.1. Stronger together
Online communities provided a sense of belonging, mutual support and understanding for participants, which was especially valuable during burnout episodes.
“As an #ActuallyAutistic woman who did not get diagnosed until age 41. this thread made me cry multiple times because of how SEEN I felt. Particularly the section about Autism Burnout.” (T477)
Insight and Depth
This study provides a comprehensive understanding of autistic burnout directly from lived experience accounts spanning over a decade.
It identifies 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 across the lifespan.
Importantly, it positions autistic people as experts and partners in research.
Strengths
Below are some of the strengths of this study:
- Large sample size with data spanning 12 years
- Inclusion of autistic people as researchers
- Builds upon and extends the limited existing research
- Identifies risk and protective factors to inform future research
Limitations
Below are some of the possible limitations of this study:
- Lack of diversity – the majority of participants were English-speaking autistic adults who communicate in writing and have access to online platforms. Perspectives of non-English speakers, those with higher communication needs, and additional marginalized identities are missing.
- Retrospective data prevented follow-up questioning.
- Study was not co-designed with autistic people despite the topic being a high priority for the autistic community.
The findings may not be generalizable to the wider autistic population, especially those with intersecting minority identities and higher support needs. More inclusive and participatory research is needed.
Implications
The findings suggest that increased awareness and acceptance of autism could be key to burnout prevention and recovery.
Educating families, health professionals, and the wider public to recognize autism and burnout, especially in adolescence, is vital.
Societies and institutions should examine how they can better support autistic inclusion and participation. At an individual level, learning effective coping, energy management, and self-awareness skills may protect against burnout.
Autistic people were able to communicate online during burnout, offering possibilities for delivering remote support. More research is needed on prevalence, screening tools, and links between burnout and suicidality.
Conclusion
This study reinforces the serious impact of autistic burnout on mental health and quality of life. It provides a foundation for raising awareness and acceptance of autism to prevent the harmful cycle of autistic burnout.
The findings position autistic adults as experts and partners in developing solutions. However, the complexity of autistic burnout and intersectionality of people’s experiences means further research, especially with more diverse samples, is essential.
Continuing to amplify and learn from autistic voices is key to supporting wellbeing across the lifespan.
References
Primary reference
Mantzalas, J., Richdale, A. L., Adikari, A., Lowe, J., & Dissanayake, C. (2022). What is autistic burnout? A thematic analysis of posts on two online platforms. Autism in Adulthood, 4(1), 52-65. https://doi.org/10.1089/aut.2021.0021
Other references
Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular Autism, 9(42), 1–14. https://doi.org/10.1186/s13229-018-0226-4
Hedley, D., & Uljarević, M. (2018). Systematic review of suicide in autism spectrum disorder: Current trends and implications. Current Developmental Disorders Reports, 5, 65–76. https://doi.org/10.1007/s40474-018-0133-6
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. British Journal of Psychiatry, 208, 232–238. https://doi.org/10.1192/bjp.bp.114.160192
Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., 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, 2(2), 1–12. https://doi.org/10.1089/aut.2019.0079
Keep Learning
Here are some potential discussion questions for a college class on this paper:
- How does the lack of awareness and acceptance of autism contribute to the occurrence of autistic burnout? What changes in society might help prevent autistic burnout?
- In what ways does masking or camouflaging autistic traits impact mental health and risk of autistic burnout? How can we support autistic people to unmask safely?
- Why is it important that autistic adults were positioned as experts in this research? How can we amplify autistic voices and make autism research more inclusive?
- The study found that autistic burnout often first occurs in adolescence. What unique challenges might autistic teenagers face and how can we better support them through this transition period?
- How might the experience of autistic burnout differ for people with additional marginalized identities, such as autistic people of color or LGBTQIA+ autistic people? What steps can we take to understand and support these intersectional experiences?
