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.
🙂 Thank you for bringing this to my attention. This is the first time that I have heard of the term, “Autistic Burnout.”
Do enjoy the rest of your day, Ashley.
Thank you! I hope you have a good day as well.
Thank you so much for writing this, you explain it so well.
I honestly think this is what has happened to me, I used to cope so much better than I am at present. I believe I had my first burnout 3 years ago, when I was trying to gain my qualifications and I have struggled to gain my abilities to cope with things since then.
I seem to have lost the ability to hold it all in. To talk and coping socially became depleted more than it ever has.
Autistic burnout, and really autism in adults in general, really needs to be better recognized so people can get appropriate support.
I hope you don’t mind, but i shared it in a womens autistic group on Facebook. I think it could help many on there
Oh good!
I think some of my depressive episodes were partially or completely autistic burnout. I also experience more minor, short-lived, fatigue from everyday activities such as masking and social interactions. This is not really recognised as autistic burnout, but I definitely feel it is real. I feel it is specifically autistic rather than everyday fatigue as it can come from a day with no work or physical exertion, but some (not necessarily many) social interactions, and can persist after sleep and physical recovery. As I say, this is not really recognised, but I would love to put a label on it, if only so I would be less inclined to call myself “lazy” as a result of it.
Hopefully more research on autistic burnout will happen and shed some light on the different ways it can present.
I’m fighting the word lazy too, thanks for mentioning that it helps me feel better about myself.
I lost all my coping mechanisms when I started the menopause. It’s been 8 years now and the only way I can cope is to live as a solitary. The shortest conversation can leave me exhausted and anxious about what I may have said and how I came across to the other person. Some people I can cope with more than others. People who constantly use irony cause me the greatest anxiety. It’s not that I can’t get irony but the way it’s delivered.
Thanks for discussing this Ashley xx
That sounds tough. My depression has made me pretty much a hermit, and while it’s not ideal, it’s what I can manage 💕
It’s pretty much a balancing act I find, and remembering to be kind and forgiving to oneself.
That’s so important.
Thank you for this! I got my late diagnosis at the age of 31 and now, 10 years later, I’ve learned something new. I do believe I’ve been down this road shortly after I got hit with a divorce and my whole world just fell apart.
I’ve reblogged this on my own site as I found it very interesting, so I felt I should spread the wisdom. 😊
It sounds like it’s a pretty common phenomenon that really needs to be more widely recognized.
Yes that would be terribly helpful. When you feel you’ve lost all connection to the world, to what you thought you had and knew… I think it’s devastating for people not on the spectrum, but these huge life changes turned into awfully big challenges and it was so hard to get the right help for it…
I can imagine. It sounds like appropriate services and supports for autistic adults are next to impossible to access even at the best of times, much less when going through a massive stressor.
Getting my late diagnosis ten years ago really helped me to understand myself better. But most help here is aimed at kids, unfortunately… Like you grow out of it when you reach adulthood… So many sites and services all aiming for helping kids. Which, of course, is good. But if you get a late diagnosis, you will still need that support to learn yourself better and know where and how you can ask for help with things you struggle with. I really struggle with finances. I barely get by. And if I want professional help with that, I need to pay a monthly fee… Which of course I cannot afford due to the situation I’m in. I think I’m doing rather well on other aspects, but the money struggles are really hard on me. I’m ashamed every time I need to ask for help when I cannot afford groceries. And it’s not like I spend way too much on gadgets or other unnecessary things…. 😕 Even though I would love to be able to afford them all 😇
I hate that access to health care and therapy depends on how much money people have.
Same! But when you’re on disability income, it’s harder to get the best help as they mostly consist of external instances that don’t work for the health care providers, so if you want that help, you need to have money… I guess it’s a struggle I’m most countries to get good care. Especially mentally. Physical health care is a wee bit better here but again, with long waiting lists, unfortunately.
Same here in Canada.
Sorry to read that… Was hoping it might be a wee bit better there 😊