Autistic burnout

My experience of autistic burnout

Like many other late-diagnosed autistics, my diagnosis came as a result of experiencing burnout. I went from being a Superwoman to withdrawing—seeming to have increased autistic traits, as well as suicidal ideation. It happened when my children were old enough (14 and 19) to be largely self-sufficient, and were more interested in hanging out with friends than with their mom. My husband at the time was—and still is—a profoundly passionate, brilliant musician who spent the majority of his time working.

Suddenly, no one seemed to need me as desperately as they had my whole life. You know, I was the perfect mom, perfect wife, perfect daughter-in-law, perfect clinician—that at least was what people used to say about me. I worked so hard at the facade that, at times, people told me they were intimidated about being around me because they felt inadequate. But the truth is that it was I who felt deeply flawed.

I stopped attending family events and seeing friends; I just wanted to stay in my room and write about psychology. I tried to avoid coming down for dinner or seeing anyone. I did not know this was burnout at the time, but this was the beginning of getting diagnosed.

Just like my experience, it is common for autistic burnout to arise from us working very hard to fit in via camouflaging, and trying to be successful in family, career, and socializing. For many autistics, this is the cost we pay for forcing success in a neurotypical world and according to neurotypical standards.

Causes of autistic burnout

There is currently very little research focused on understanding autistic burnout. What we do know thus far, is that its causes can be distinguished from conditions like depression.^[1]“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout (Raymaker, 2020) Through interviewing autistics who experienced autistic burnout, Higgens et al. (2021) showed that it differed from depression in both its onset and treatment.^[2]Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout (Higgins, 2021)

In addition to clinical depression, research by Raymaker et al. (2020) tells us that autistic burnout is different from occupational burnout (i.e., burnout from work).^[3]“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout (Raymaker, 2020) Importantly, they found that autistic burnout originates from life stressors that added to their cumulative load. In their definition, autistic burnout occurs due to chronic life stress and a mismatch between (social) expectations and abilities. Therefore, unlike depression and occupational burnout, the onset of autistic burnout is a result of the social demands, masking, and fatigue associated with living in an unaccommodating society.

Looking back now, I realize that I had also struggled with this when I was 21 and living on my own, trying to manage university and working full time. I could not make it to some classes due to debilitating fatigue. I still passed the courses with an A by studying class notes from people who were kind enough to give them to me. Previously, I had always made one connection via shared classes, but in university, I had no idea how to navigate the social world, which had a significantly negative effect on my well-being.

Symptoms of autistic burnout

Because there is so little research on autistic burnout, most of the information we do have about what it looks like comes directly from autistic individuals who are sharing their lived experiences with burnout on social media. The online autistic community generally defines autistic burnout as a condition in which functioning is severely impacted. In addition, individuals may experience suicidal ideation. Anecdotally, autistic burnout reduces people’s daily living skills and can lead to suicide attempts.

Both my experiences of autistic burnout felt very much the way patients have described chronic fatigue to me. The difference is that given the right supports, I recovered in both cases within a few months. 

Importantly, autistic burnout differs from meltdowns, shutdowns, or depression attacks in duration and severity. Unlike meltdowns, shutdowns, and depression attacks, burnout can last from days to years rather than hours. These factors depend on factors such as how long the person has been masking. For example, my first stint lasted about five months, and my second roughly two years. I also suspect that I may currently be in a state of burnout that has lasted almost three years due to prolonged external stressors. Therefore, autistic burnout is less severe in intensity than a meltdown, shutdown, or depression attack, but the duration is significantly longer. In addition, individuals in the midst of burnout can experience brief energy bursts or periods of feeling better.

These anecdotal findings have been corroborated by recent research. Raymaker et al. (2020) found that during burnout, autistics experience a loss of function, exhaustion, and reduced tolerance to stimuli that persists for an extended time (typically 3+ months).^[4]“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout (Raymaker, 2020) This study also found that people experiencing autistic burnout described adverse effects on their health, their ability to live independently, and their quality of life, including suicidal behaviour.

Treatment for autistic burnout

The ideal scenario is to use prevention as a primary strategy for avoiding burnout. However, that can be hard to do if, like me at the time of my first episode, you do not know that you are autistic in the first place. Below are some helpful strategies for reducing your risk of burnout. These tips will work even if you aren’t sure if you are autistic. 

One concrete preventative practice that has been helpful for me is getting enough sleep—which has improved with biofeedback from my Oura ring and my blue light-blocking glasses. Read The harms of blue light & a solution for more information on that. In addition, my Oura ring lets me measure my moments of stress. Before using a heart monitor, my lowered interoception due to my autism and inaccurate interoception due to my alexithymia made it impossible to know when I was stressed.

Learning to unmask is another strategy for prevention and recovery. Although everyone (including non-autistics!) mask to some degree, with autistics in particular, marching to everyone else’s drum beat causes energy depletion. In fact, high levels of masking is a primary cause for poor mental health in autistics.^[5]Looking good but feeling bad: “Camouflaging” behaviors and mental health in women with autistic traits (Beck, Lundwall, & South, 2020) Thus forgoing masking (as much as possible) can have significant health benefits.

Other strategies that are helpful for prevention and recovery include increasing self-awareness of social capacity and sensory overload.^[6]A conceptual model of risk and protective factors for autistic burnout (Mantzalas, 2022) These are tough for me personally because I don’t know when I’ve reached my limit until I do not feel well. As a result, I end up having to retrace my steps in order to figure out what came before my stress. However, if you are an autistic who is able to monitor when a social interaction or a sensory stimuli is becoming overwhelming, practicing removing yourself from the sensory/social situation before you’ve reached your threshold can prevent a meltdown in the moment and autistic burnout in the long run. 

This means withdrawing from social and externally-imposed demands. I do this by staying in a concrete apartment with my 20-year-old dog—Mr. Pluts, where people rent short-term, so I don’t have to speak to neighbours, and the noise factor is low. In addition, I live without visual clutter, which significantly decreases my sensory overwhelm. I let myself nap and keep social interaction to a bare minimum. Spending time at home both reduces social pressure and sensory stimulation.

Keep in mind that treatment for autistic burnout includes social withdrawal, but not social isolation. Spending quality time with people you enjoy is essential. Personally, I changed all my friendships—beyond one long-term relationship; I am solely friends with autistics. Research shows that autistic women prefer friendships with other autistic women, as they understand each other much better; there is a complexity when interacting with neurotypicals that does not exist among autistics.^[7]‘I never realised everybody felt as happy as I do when I am around autistic people’: A thematic analysis of autistic adults’ relationships with autistic and neurotypical friends and family (Crompton et al., 2020)

Both times I was burnt out, I also experienced significant relationship challenges—the first with my mother and the second with my husband. So I wonder if navigating the difficulties of relationships could be one social demand that added significant stress to my life.

Notably, when it comes to interacting with neurotypicals, one study pointed to the lack of empathy shown by neurotypicals towards autistics experiencing burnout.^[8]“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout (Raymaker, 2020) This finding further emphasizes the need for autistic individuals to withdraw from social situations that may be harmful and instead connect with and accept social support from people we can relate to. 

Another way to promote recovery from burnout is by spending time on personal interests. For me, this includes competitive chess, walking my dog, and reading. 

One thing to keep in mind is that cognitive strategies are rarely effective for treating burnout. This is because autistic burnout is not a cognitive distortion but an overwhelming of the system. Learning mindfulness and other strategies for listening to our bodies’ needs is much more effective for identifying what is overwhelming us, and figuring out what we need to do to get away from the overwhelming situation.  

Despite all these strategies, preventing and recovering from burnout is hard. I still do too much and have not found a way to change that.

Autistic burnout is different from other forms of burnout

As an autistic individual dealing with burnout or a clinician supporting autistic people, it is crucial for recovery to recognize that autistic burnout is not the same as the burnout experienced by neurotypicals.

The bottom line is that autistic burnout is a result of perpetually masking our autistic traits, ignoring our autistic needs, and being denied accommodation and understanding in neurotypical spaces. Healing from autistic burnout therefore requires more than just rest and a vacation from work. It requires taking time off, reducing expectations and doing things in an autistic way. This means finding safe and supportive environments/people, unmasking, allowing ourselves to live authentically, and honouring our autistic needs. Unfortunately, this can be a privilege that not all of us have access to. One way to find support is through connecting with other autistics online. The hope is that through meeting other autistics, we can find helpful supports from people who think and operate like us.