Titrating the Whelm: Perceptual Capacity and Autistic Burnout

This piece on “Doing More by Doing Less: Reducing Autistic Burnout” in Psychology Today has several relatable paragraphs. I particularly like this on perceptual capacity and titrating our “whelm” levels:

The divergent ways in which we process the world around us can also leave us fatigued and sapped of energy, as autistic people have “higher perceptual capacity” than our neurotypical counterparts, meaning that we process greater volumes of information from our environment. Autistic people commonly use the concept of ‘spoon theory‘ to conceptualize this experience of having limited energy resources. Initially theorized in the context of chronic illness, spoon theory can be explained as every task and activity (enjoyable or otherwise) requiring a certain number of ‘spoons’. Most people start their day with such an abundance of spoons that they can do whatever they choose, and rarely run low. We autistic folk start with a limited number of spoons, and when those spoons run dangerously low, we need to step back, rest, engage in self-care, and wait for our spoons to replenish.

Before our diagnoses of autism, we focused intently on trying to do more: to match the pace of our non-autistic peers; to fulfill our professional and personal obligations to the highest standard; to emulate the busy, full life that seemed so effortless for others around us. We ignored the signs of autistic burnout and continued to push ourselves because we lacked the framework to understand our experiences and to realize why seemingly simple tasks like attending a social gathering could leave us exhausted, unable to complete even basic tasks of daily living for days afterward. Post-diagnosis, and following a deep and thorough reframing of our life narratives, we now actively focus on doing less, which has helped titrate our “whelm” levels and reduce the frequency and intensity of autistic burnout, thus allowing us to do more.


I’m still recovering from my last and biggest burnout. Forty sevens years of existence in an intense world mainlined through a terrifying perceptual capacity has thoroughly burnt me out. I’ve spent my life feeling like a raw and vulnerable sensory attack surface. For forty of those forty seven years of existence, I had no tools for titrating the whelm. I had no vocabulary for the most important things about myself. I ignored the signs and continued to push because I lacked the framework to understand my experiences.

I pushed. I camouflaged. I burnt out.

We have developed skills and strategies to withstand the sensory, social, and executive functioning demands of working in non-autistic spaces at non-autistic paces. We have taught ourselves this neurotypical syllabus of behaviors to get through the day appearing “just like everyone else”. However, the hidden flip side of this well-crafted camouflage is that we regularly fall in a heap, utterly exhausted, once we are safely behind closed doors. The extra cognitive load and personal resources it takes to camouflage should not be underestimated or dismissed; the cost of camouflaging is immense. Just because we have developed skills to appear non-autistic doesn’t mean it is in our best interests to do so.

A recent study found that women with higher scores on a measure of camouflaging also experienced greater mental health challenges, suicidal thoughts, and-perhaps paradoxically-challenges with daily functioning. More strikingly, autistic traits were not positively correlated with psychological distress, but efforts to camouflage these traits were. This indicates that it is not the experience of being autistic that creates distress, but the pressure to conform, keep pace with our neurotypical peers, and hide our true selves that causes psychological distress. There are countless narratives of autistic adults that describe the act of camouflaging leading to periods of autistic burnout, which often incorporate extreme exhaustion, anxiety, depressive symptoms, and suicidal ideation, and are characterized by a drastic decline in capacity to function for days, months, or even years.

My drastic decline in capacity has lasted years. I went too long in ignorance. I now have the vocabulary and the framework to better titrate the whelm, thanks to other autistic people.

Related:

Social Compensation and the Costs of Masking and Passing

On social compensation and the costs of masking and passing:

Even for people with a diagnosis, a neurotypical appearance due to compensation might result in support needs being underestimated in educational and workplace settings. Additionally, compensation is thought to contribute to poor mental health in autism. Compensatory attempts are taxing, need to be sustained over time, and are often unsuccessful, resulting in a cost to wellbeing.

Despite potential negative consequences, compensation was still considered to be important for increasing life opportunities, and thereby having a role in society (subtheme). Compensation enabled individuals to perform daily tasks that involved communicating with others (eg, accessing services) and to seek employment. Some participants, however, stressed that although compensatory strategies facilitated gaining employment (eg, in interviews), they were not always sufficient to maintain employment and switching jobs was often necessary. Additionally, cognitive demands of using compensatory strategies throughout the working day were reported to affect participants’ ability to perform daily living tasks, so they incurred personal costs while pursuing a role in society.

Source: Compensatory strategies below the behavioral surface in autism: a qualitative study – The Lancet Psychiatry

The paper identifies 8 themes and 18 subthemes for why we engage in social compensation. I particularly relate to the “Costs vs benefits”, “Deep compensation”, “Cognitive tasking”, “Environmental demands”, “Behavioural masking”, “Interaction is two-way”, “Late diagnosis”, and “On ongoing challenge” subthemes. I’m curious if the folks in the “Things are better now” subtheme remain there later in life or if they finally experience burnout.

The paper uses the term “social compensation” instead of the autistic community colloquial term “masking”. It identifies “behavioral masking” as a theme of “social compensation”. Here’s the distinction:

Compensation was distinguishable from behavioural masking (theme). Whereas compensation generated new social behaviours, masking regulated existing behaviours, such as decreasing social behaviours thought by society to be undesirable (eg, talking too much) and increasing behaviours thought to be desirable (eg, smiling). Masking strategies were simple and often automatic, and allowed blending into the background, but were less effective in supporting social interaction. Masking was considered less autism-specific than compensation, given that neurotypical people show masking when required (eg, hiding controversial opinions).

To modulate compensatory efforts, many participants described compensating after logically assessing the costs versus benefits (subtheme). For example, compensation was considered worthwhile to make a positive impression towards a friendship, but not for interactions with inconsequential strangers. In superficial interactions, masking was preferred over compensatory strategies to conserve resources.

Thanks @HappeLab and team for doing this needed work.

Via:

See also: Autistic Burnout: The Cost of Masking and Passing

A Working Definition of Autistic Burnout

Here’s a working definition of autistic burnout from an autism researcher studying burnout and suicidal behavior:

“A state of pervasive exhaustion, loss of function, increase in autistic traits, and withdrawal from life that results from continuously expending more resources than one has coping with activities and environments ill-suited to one’s abilities and needs.” In other words, autistic burnout is the result of being asked to continuously do more than one is capable of without sufficient means for recovery.

Source: THINKING PERSON’S GUIDE TO AUTISM: Autistic Burnout: An Interview With Researcher Dora Raymaker

AASPIRE is currently running a pilot study on autistic burnout and suicidal behavior. Autistic people have often talked about burnout, and it emerged as a major theme in their previous study on autism and skilled employment, but up to now, it has received limited attention from researchers.

So glad AASPIRE is heeding autistic communities and doing this much needed research.

The piece links to a couple resources on avoiding and recovering from burnout:

Via: