In this series, I dig a little deeper into the meaning of psychology-related terms. This week’s term is autistic burnout.
Autistic burnout is something I’d only heard of quite recently, and I was curious to learn more about it. It’s a concept that’s discussed a lot among autistic communities, but it hasn’t been well researched. A paper by autism researcher Dora Raymaker and colleagues drew on the experiences shared by study participants to develop this definition:
Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.
Raymaker et al., 2020
What autistic burnout looks like
Burnout occurs when expectations/demands outweigh the ability to meet them, and physical, mental, emotional, and/or social resources are depleted. Key characteristics of autistic burnout are chronic exhaustion, loss of skills, and reduced tolerance to sensory stimuli. Skills related to executive functioning are most often lost, and this particular element is sometimes described as autistic regression. Skills may not be fully regained afterwards, and the likelihood of that being the case increases with age.
While there’s some overlap with the fatigue that can occur as a symptom of depression, autistic burnout is believed to be a distinct concept. It’s also distinct from occupational burnout, which is characterized primarily by exhaustion and decreased self-efficacy.
Onset of burnout
Several factors can contribute to burnout, including life stressors like changes in routine, a cumulative load of demands, and sensory or emotional overload. Having to pass as neurotypical and suppress autistic traits is a major contributor. The ability to manage stress may be hindered by not getting support from others, difficulties establishing boundaries and saying no, and being unable to take sufficient rest time.
Warning signs that burnout may be coming on can include lack of motivation, problems with self-care, memory loss, loss of speech, being quicker than usual to have meltdowns or shutdowns, and decreased ability to pass as neurotypical.
As a result of autistic burnout, people with autism have reported compromises in their health, quality of life, and capacity for independent living. In some cases, burnout can trigger suicidality.
Themes related to autistic burnout
A study by Mantzalas and colleagues looked at posts by autistic adults on Twitter and an autism discussion forum and identified recurring themes in their descriptions of autistic burnout. These themes were:
- “Systemic and pervasive lack of autism awareness”, with a subtheme of lack of acceptance, discrimination, and stigma
- “Autistic burnout is a chronic or recurrent condition”: for many people, burnout lasted months or even years
- “Direct impact on health and well-being”, including reduced ability to produce speech, increased sensory sensitivity, loss of skills, increased difficulties with emotion regulation, and suicidal ideation
- “A life unlived”: burnout limited education and employment opportunities and contributed to relationship difficulties
- “A blessing in disguise?”: for some, burnout was the catalyst for getting a diagnosis
- “Self-awareness and personal control influence risk”: common factors that contributed to burnout included masking and overwhelming sensory or cognitive demands, and people who were able to recognize these and make changes to their environment were able to reduce burnout effects
- “Masking: damned if you do, damned if you don’t”: needing to mask was exhausting and led to burnout, but unmasking could be associated with ostracism and bullying, which also contributed to burnout
- “Ask the experts”: while there is a lack of knowledge and understanding of burnout outside of the autistic community, there is a lot of sharing of expertise within it, and sharing burnout experiences fostered a sense of connection and belonging
Recovery strategies
The National Autistic Society suggests energy accounting strategies (basically managing one’s spoons in spoon theory), building in time to rest and to go without masking, taking regular breaks at work, and addressing demands that aren’t manageable. Some of the suggestions from the Autistic Women & Nonbinary Network include stimming, a sensory diet, exercise, massage, solitude, and spending time on special interests. If you’re not familiar with stimming, this excellent Youtube video from Becoming Autism shows happy, unmasked stimming.
Mantzalas et al. identified rest, social and sensory avoidance, and engaging in special interests as commonly used techniques to manage burnout. Social support from people who understood the autistic person’s needs, such as others in online autistic communities, was also helpful.
The research gap
The concept of autistic burnout arose organically within the autistic community, and the clinical and research communities haven’t caught up yet. It’s essentially crickets if you search Google Scholar for journal articles on the subject. Dora Raymaker, who is autistic herself, is currently leading the charge in autistic burnout research. It was her research team that came up with the definition quoted above. If you want a more in-depth look at the findings of her research, this Youtube video on autistic burnout (albeit long and academic speak-y) features an interview with her.
Is autistic burnout something you were familiar with? I’m hoping some of my blogging friends who are on the spectrum can share their experiences in the comments.
References
- Autistic Women & Nonbinary Network: What is 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.
- National Autistic Society: Autistic fatigue – a guide for autistic adults
- Raymaker, D. M., Teo, A. R., Steckler, N. A., et al. (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), 132-143.
The Psychology Corner has an overview of terms covered in the What Is… series, along with a collection of scientifically validated psychological tests.
Ashley L. Peterson
BScPharm BSN MPN
Ashley is a former mental health nurse and pharmacist and the author of four books.