Autistic burnout is very different from the work-related burnout that non-autistics experience. In this episode, I cover the official definition of autistic burnout, how autistic burnout differs from non-autistic burnout, the latest research on this topic, how burnout relates to shutdown and social hangover, and more. I also discuss my own experiences with burnout and some strategies for avoiding it.
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If you'd like to know more about topics discussed in this episode, check out:
"Risk Markers for Suicidality in Autistic Adults" by Sarah Cassidy et al.
"Autistic Burnout Explained" by Sarah Deweerdt
"Defining Autistic Burnout Through Experts by Lived Experience: Grounded Delphi Method Investigating Autistic Burnout" by Julianne M. Higgins et al.
"'Having All of Your Internal Resources Exhausted Beyond Measure and Being Left With No Clean-Up Crew': Defining Autistic Burnout" by Dora M. Raymaker et al.
Episode outro music: "This Time Around" by oomiee
Theme music: "Everything Feels New" by Evgeny Bardyuzha.
All episodes written and produced by Kristen Hovet.
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Today we're talking about a kind of burnout that many autistic individuals experience and that's different than non-autistic burnout. But before I get into it, I'd like to thank Kashmiri for your generous one-time show of support to The Other Autism podcast. Kashmiri used the Buy Me a Coffee link to send in a donation. If you find this podcast informative and helpful in any way and would like to do the same to help keep this podcast going and growing, please check out the link in the show notes that says Buy Me a Coffee. To start with this topic, I will say that, anecdotally, burnout tends to decrease after identification of autism, as once we know about our neurotype, the majority of us become a bit gentler with ourselves and take steps to reduce factors that can lead to burnout. Given the amount of burnout I've experienced and the amount of pretty dramatic traumas in my life ever since childhood, I think I've developed a pretty strict approach to reducing factors leading to burnout. I can't wait to tell you what this looks like for me. But I'd like to start with a formal definition of autistic burnout. While the formal definition is still getting ironed out in autism scholarship, here are a couple from two recent research papers, all about autistic burnout, which I will link to in the show notes. Autistic burnout is defined by Dora M Raymaker and their team as, quote, a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities, without adequate supports. It's characterized by pervasive, long-term (typically three or more months) exhaustion, loss of function and reduced tolerance to stimulus. End quote. And that part about reduced tolerance to stimulus has to do with any environmental stimuli or information coming in from one's surroundings. The researchers went on to say that autistic burnout can have serious detrimental impacts on health, daily living, employment, relationships and pretty much every area of life. I know I've had burnout in university that interrupted my university career, that was exacerbated by the suicide of someone I was getting to know at the time and just different life stresses happening. I've also had burnout as a result of medical trauma, most recently that included cancer, but I've also had burnout related to chronic conditions that I live with, that I've spoken of in previous episodes, if you want to give those a listen. Severity of autistic burnout can vary from person to person, depending on their circumstances, but each case of autistic burnout is challenging and leads to significant suffering. These researchers, led by Raymaker, note that autistic burnout is caused by life stressors and barriers to support. Life stressors in this context can include masking, unrealistic expectations from family, society, school or work, and major life transitions, such as moving, someone in the family passing away, starting school, leaving school, starting a new job, having a child, getting married, getting divorced, and so on. Barriers to support can include gaslighting or dismissal from others, having poor boundaries and lack of external resources or supports. Julianne M Higgins and their research team define autistic burnout as, quote... Sorry, there was just like a bug that flew, flew up. Oh, they like my lights. Julianne M Higgins and their research team define autistic burnout as, quote, a highly debilitating condition. Sorry. Condition characterized by... this is no laughing matter... A highly debilitating condition characterized by exhaustion, withdrawal, executive function problems and generally reduced functioning, with increased manifestation of autistic traits and distinct from depression and non-autistic burnout. End quote. Anecdotal accounts of autistic burnout often describe worsening of medical conditions, suicide ideation and suicide attempts as part of the experience of the phenomenon. Autistic burnout, the researchers also state, is almost always linked with having to mask or camouflage autistic traits. In an article for Spectrum, Sarah Deweerdt writes that autistic burnout appears to primarily impact autistic adults who have strong cognitive and language abilities and who work or go to school. Specifically, their work and or school environments, Deweerdt writes, include having to interact with neurotypical people. I think Deweerdt's use of language here indicates that they're referring to autistic individuals commonly diagnosed as level one autistics. I'm not sure if that's ultimately correct, but it does appear to be what the research has suggested thus far and, to be honest, there isn't much research on autistic burnout, so that's not saying much. It's a fairly recent topic in the realm of academia. However, we know from the definitions of autistic burnout given earlier that a major contributing factor to the condition is masking or camouflaging, which are sets of behaviors typically associated with what's been called level one or high masking autism. I want to point out that not everyone diagnosed as level one autistic is high masking, especially if they've grown up in particularly supportive and enriched environments, largely free from bullying, mocking, abuse and other interpersonal toxicity. Sadly, however, very few of us have had the privilege of experiencing such a world and such an upbringing. I love how the study by Higgins and their team starts with a description and brief history of non-autistic burnout, so we can see a real difference between the two conditions. Non-autistic burnout was first described by Freudenberger in 1974 as, quote, becoming exhausted by making excessive demands on energy, strength or resources in the workplace. End quote. Since then, there's been a great deal of research on this form of non-autistic or mainstream burnout. While non-autistic burnout does not appear in the DSM-5, it is in the ICD-10 and the ICD-11 as an occupational phenomenon, and ICD here is short for International Classification of Diseases. The ICD-11 describes burnout as being the result of unmanaged work-related stress leading to exhaustion or fatigue, cynicism or increased suspicion of others and reduced professional or work capacity. Interestingly, there's actually an ongoing debate in the medical literature and medical community about whether non-autistic burnout isn't actually just a specific presentation of depression. For example, a couple of large studies published in 2020 found that there's no distinction between depression and non-autistic burnout, with one study by Verkuilen and team finding that, quote, burnout lacked discriminant validity and recommended clinicians assess for depression when individuals present with a complaint about burnout. End quote. The Higgins-led research makes some interesting distinctions between autistic and non-autistic burnout. For one, non-autistic burnout does not come with an increase in autistic traits such as sensory overwhelm or challenges with speech, sometimes referred to as loss of speech, going nonverbal or becoming nonverbal. Additionally, protective factors are very different for autistics and non-autistics, in the context of burnout. For example, increased social interaction is deemed as both a protective factor and a requirement for faster recovery in non-autistic burnout. But in autistics, probably unsurprisingly, increased social interaction can itself lead to burnout or greatly exacerbate it and definitely get in the way of recovery, I would say. The Higgins-led team also brought up a potentially confusing discrepancy. You may have noted it. Many study participants explained that one main sign of burnout for them was increased social withdrawal or isolation, but then many participants also noted that social withdrawal or isolation was actually needed for recovery from burnout. I actually think this makes total sense and is all about the type of socializing and the context. Social withdrawal can be negative if we're not following our normal social routines or spending time with supportive loved ones in our life. This can definitely be a sign of negatively impacted mental health, for example. But social withdrawal can be positive if we're keeping away from unsupportive people or social environments or if we're only limiting socializing to those who are loving and supportive and people we don't need to mask around constantly. Additionally, it's really about choice. When you're in autistic burnout, you don't have choice. You start isolating or socially withdrawing out of necessity. On the other hand, when not in autistic burnout, isolating or socially withdrawing is a choice. There's a huge distinction or difference there. Unfortunately, telling non-autistic people that you're experiencing burnout is often met with misunderstanding, dismissal or total apathy. And actually, if you think about it, they'll probably compare what you're talking about to run-of-the-mill or non-autistic burnout, which is usually associated with work and is usually something I would say not as debilitating. If you read about standard burnout, suicide does not come up as often as it does when you're reading about autistic burnout. Autistic burnout seems to be more debilitating, and that's not dismissing the seriousness of mainstream or non-autistic burnout. It's still definitely something you want to avoid. It's definitely something that's not healthy. It's definitely something that you want to have prevented in the workplace, but there's a huge difference. So back to what I was saying, when you're talking to non-autistic people about this, often it's not taken seriously, mostly because it's just not well understood yet at the collective or societal level. As mentioned, work on autistic burnout is still new in the world of research, and so it'll take a long while for awareness about this topic to spread. Hence we need to be talking about it when and where we can and, more importantly, when and where it's safe to do so. For me, the way I've described autistic burnout is that it feels a bit like the worst case of shutdown you can possibly imagine, but lasts much, much longer. Whereas shutdown can last a few hours to a few days for me, I've experienced burnout that's gone on for many weeks or months. And really shutdown's marked by so many of the same features of autistic burnout, but it's temporally much shorter and much less severe. I've also experienced depression not accompanied by burnout, so I know that the feeling of depression is quite different than burnout. The reason I mention this is because a lot of autistic study participants have talked about the strong overlap between their experience of burnout and depression, but they also, like me, note a distinct difference between the two. There are some overlaps, of course, as there are with many mental health-related phenomena, but they're definitely more different than they are similar. I've experienced burnout with depression and burnout without depression. Burnout with depression is, in my opinion, particularly dangerous and marks some of the lowest periods in my life, of the suicide ideation variety. This is just a hunch, but I'm going to share it. So we already know, and have discussed in previous episodes, that autistic people have a particularly high risk for suicide, and this risk increases when we have co-occurring mental health conditions such as depression or anxiety. It's my hunch that many autistic adults who are diagnosed with depression, anxiety and or other conditions are also, or maybe even only, suffering from burnout, but it's being caught by different assessment instruments as these other conditions, so it's kind of like burnout masquerading as a variety of mental health conditions. I also think that autistic burnout makes any current or existing mental health condition more severe and potentially more deadly. This is why I think autistic burnout needs to rise to the top of research priorities when it comes to autistic mental health and mental health supports. I'll add that this hunch isn't coming out of nowhere. I'm thinking of research by Sarah Cassidy and their team, where chronic masking or camouflaging and having unmet support needs predicted risk of suicide. These are some of the top risk factors for the construct that we're calling autistic burnout. So it definitely needs more attention, as work to prevent and treat autistic burnout could prevent a great deal of suicide ideation and suicide attempts in the autistic population. That's just my opinion. I want to make that very clear. So what are some solutions or strategies for recovery in the context of autistic burnout? Raymaker and their team state that the following may help: Meaningful support from others and from the community, sensory breaks, unmasking, accommodations, therapy, spiritual retreats, time off, reduced social interaction, setting boundaries, asking for help, regular exercise, meditation, learning to recognize early signs of burnout, and working on increased self-advocacy and self-knowledge. Higgins and their team make an important note when it comes to psychological or mental health interventions for autistic burnout, stating, quote, routine treatments for depression, such as cognitive behavior therapy and behavioral activation, may be contraindicated within autistic burnout, even though these conditions may coexist. Our experts described the need for withdrawal and downtime for recovery, somewhat antithetic to behavioral activation. With cognitive overload being described as a key precursor of autistic burnout, cognitive- focused therapies could be counterproductive. End quote. And it should be noted that this research team referred to their autistic participants as experts, short for experts by way of lived experience. I'd also like to point out that, while some study participants in the research I spoke of said that they had experienced burnout that lasted only a few hours or a few days, I personally would not classify those cases as burnout. I don't want to deny these participants' experience of burnout, and most autistic people have had multiple experiences with burnout, so I absolutely think these people knew what they were describing when they added their feedback about the construct of autistic burnout. But when it's only a few hours or a few days, I define that, as I've mentioned earlier, as shutdown. I think prolonged shutdown is what precedes burnout, in the same way that acute stress disorder precedes post-traumatic stress disorder. This is just a hypothesis, but I think that if a shutdown can be reversed in a matter of a week or less, burnout could potentially be avoided in that particular situation. I think saying that burnout lasts for only a few hours or days doesn't do the phenomenon justice. Burnout is intense, it's serious and, to my understanding, marked exactly by the inability to move away from or pull oneself out of that state of burnout. If it can resolve in a few hours, it's not really that serious. That's a passing state. I would really like to see future research on autistic burnout be more careful in defining it and more careful in their interview and survey questions to make that distinction. I think this will help more precisely differentiate between contributing factors and the main serious condition or mental health phenomenon that is autistic burnout. Another phenomenon that is again similar, in my mind, to shutdown is what's been called autistic social hangover. This is not at all a clinical or official term and I don't think there's been any research that looked solely at this construct, but it's used a lot in the autistic community. While a shutdown can accompany a social hangover, a shutdown isn't always caused by social interaction, but a social hangover, in line with its name, is always the result of some kind of social interaction. Descriptions of social hangovers are all over the internet and all over the autistic community and can include feeling particularly tired, more tired than usual, mentally drained, foggy brained, even physically in pain. Social hangovers for me usually include some amount of fatigue or low energy, increased light sensitivity, lower mood than normal, irritability and just feeling not like myself. When I'm feeling socially hungover, I'll do everything in my power to avoid seeing anyone else. I'll need to be in a room by myself, ideally with the lights off or very low, I'll need to not have many distractions in order to work through social hangover. Lastly, I promised I would talk about my relatively new strict approach when it comes to reducing factors that lead to burnout for me. I advocated for myself to be able to work almost entirely from home. That was kind of step number one. Aside from going into work every couple months, I have the ability to do most of my work from home. This has been a real game changer when it comes to the severity of burnout and the incidence of burnout in my life. In other words, I have way less burnout these days, and when I do have it, I tend to recover more quickly. This doesn't mean my life is suddenly easy- peasy or free of the risk of burnout. I still have to deal with the effects of masking, I still have to deal with the effects of living in a neurotypical world, socializing... I want to make it clear that I love socializing and so do many autistic people, but we often require a long recovery period after socializing. Actually, I'd change often to nearly all the time. This, of course, looks different from one autistic to another, but we all need some amount of time where we can decompress and process after social interactions. Some other strategies I have include working out quite often, I would say minimum three times a week, sometimes more. It just helps my body to move. It helps my brain. Another big one is when there's a toxic person in my life that I recognize as toxic, I don't stick around, I just leave the situation. I don't have any tolerance. It's not fair to my health. I've already struggled enough with the results of crappy people doing crappy things. And so I've just like, you know, one time you mess up, depending on what it is, okay, I'll give you a second chance. Second time? You're out, you're gone, like I can't. And that's just what I've had to do to protect myself. It might sound harsh, it might sound unreasonable, but I don't think it is. I think we're worth taking care of, we're worth protecting ourselves. So there it is. That's a huge one. What are some other ones? I pursue as much as I can because obviously I have to make a living, I have to work, but as much as I can I pursue the things I want to do, the things that make me happy, that give me joy. And to others that can look pretty intense. I have a lot of varied interests and I pursue them shamelessly, with great enthusiasm, and I love the things I'm working on and I don't care what anyone else thinks. I used to care quite a bit. I think a lot of high-masking autistics do. We grow up caring because when we don't fit in, that's when we get the most crap, that's when we get mistreated the most. But I don't know. I don't know if it's just getting older, getting wiser, I don't know. Influence of others, reading books, I don't know, but I just don't care anymore. So if someone's going to go like, oh my gosh, you're doing this and also this, aren't you so busy, aren't you? I don't care, I don't care. It can maybe look like that to you, but to me I'm just doing my life, I'm doing the things I like to do, and that's... It reduces my anxiety, it reduces and prevents burnout and symptoms of those things. So you know what? I'm just going to keep on doing what I do. And I hope this inspires you all to do the same, as much as you can, as much as you have capacity to do so, like do the things. Do the things you love, whatever that may be, and who gives a crap what anyone else thinks? As long as you're not hurting anyone, as long as you're not hurting yourself, do the things. So I'd love to hear your stories about autistic burnout and I'm particularly interested in hearing your strategies that helped you recover from burnout because I think that's really gonna be of interest to listeners. They might be in burnout right now, so many people are coming out of burnout or working through burnout. What are some strategies that you've used to recover and prevent going back into burnout? Would you like to be a guest on The Other Autism podcast to talk about this? If so, please reach out. My email address is, as always, in the show notes. Well, that's all I have for you today. Thank you so much for being here. Until next time, bye.