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:

Autism, Trauma, and Stress

This recent study on autism and PTSD offers some relatable paragraphs about stress and trauma.

It is well documented that individuals with Autism Spectrum Disorder (ASD) experience high rates of psychiatric co-occurrence, with other conditions—attention-deficit/hyperactivity disorder (ADHD), anxiety, and depression being the most commonly diagnosed (Joshi et al., 2012). Recently it has been suggested that individuals with ASD are at an increased risk of experiencing potentially traumatic events and being significantly affected by them (Haruvi-Lamdan et al., 2018; Kerns et al., 2015).

A review that examined trauma and PTSD among adults with intellectual impairments discussed the difficulty to differentiate between stressful life events and traumatic events, and argued for broadening the examination of different types of events and experiences that may potentially be perceived as traumatic (Martorell & Tsakanikos, 2008). Another review, by Kerns et al. (2015), indicated that individuals with ASD may experience a variety of stressful situations (e.g. intense sensory stimuli, changes in routine, medical ordeals) as traumatic. Various characteristics of sensation, perception, social awareness, and cognition, which are unique to individuals with ASD, may determine which events would be experienced by them as traumatic. A recent article discussed this issue and focused on traumatic subjective perception of three groups of patients who are at risk to developing PTSD, one being ASD (Brewin et al., 2019). The authors argued that these groups’ PTSS are often overlooked and suggested adding an “altered perception” subtype to PTSD criteria in the future. Specifically, it is possible that social stressors are a significant source of vulnerability for individuals with ASD (Haruvi-Lamdan et al., 2018; Hoover, 2015). Several studies suggest that social demands are more often appraised as stressful by individuals with ASD compared with typical individuals (Gillott & Standen, 2007; Jansen et al., 2003). Individuals with ASD experience greater social isolation and distress compared with their typical peers (Tani et al., 2012). Therefore, it is reasonable to assume that some social interactions are experienced as particularly stressful, and even traumatic, among this population.

Source: Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions – Nirit Haruvi-Lamdan, Danny Horesh, Shani Zohar, Meital Kraus, Ofer Golan, 2020

Via:

Glad to see a topic important to the community getting some research and validation.

Related:

In other words, autistic people are indeed traumatised by a wider range of things than the teams were expecting. And diagnostic teams should be considering PTSD after a wider list of possible triggering events.

Source: Ann’s Autism Blog: Autism, Bullying, Post Traumatic Stress Disorder and Behaviour. The links?

People who enter services are frequently society’s most vulnerable-people who have experienced extensive trauma, adversity, abuse, and oppression throughout their lives. At the same time, I struggle with the word “trauma” because it signifies some huge, overt event that needs to pass some arbitrary line of “bad enough” to count. I prefer the terms “stress” and “adversity.” In the book, I speak to the problem of language and how this insinuates differences that are not there, judgments, and assumptions that are untrue. Our brains and bodies don’t know the difference between “trauma” and “adversity”-a stressed fight/flight state is the same regardless of what words you use to describe the external environment. I’m tired of people saying “nothing bad ever happened to me” because they did not experience “trauma.” People suffer, and when they do, it’s for a reason.

Source: Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America

This scene is quite similar to how I experience an autism sensory overload. When sounds, lights, clothing or social interaction can become painful to me. When it goes on long enough it can create what is called a meltdown or activation of the “fight-flight-freeze-tend-befriend” (formerly known as “fight or flight”) response and activation of the HPA axis; a “there is a threat in the environment” adrenaline-cortisol surge.

This makes seemingly benign noises a threat to my well-being and quite possibly real physical danger to my physiology. Benign noises become painful, and if left unchecked, enough to trigger a system reaction reserved for severe dangers. This is what days can become like on a regular basis for myself and many on the spectrum.

“Let me stick a hot poker in your hand, ok? Now I want you to remain calm.”

That is the real rub of the experience of sensory meltdowns. The misunderstanding that someone with Autism is just behaving badly, spoiled or crazy. When the sensory overwhelm is an actual and very real painful experience. It seems absurd to most people that the noise of going to a grocery store could possibly be “painful” to anyone. So most people assume the adults or children just want attention, or they can’t control their behavior. In work situations I get accused of all kinds of things. And when I leave a noisy situation like a party to step out to take a break, people will notice that I’m “upset”. They will assume or worry that I must be upset at something or someone. And that’s just if I do take a break. If I can’t take a break or get my life out of proper oscillations and can’t avoid noise or sensory/emotional overload, then I can get snappy, defensive, irritated and under very unfortunate circumstances even hostile.

What the stress of noise means, in the autism’s world of an over-sensitive physiology and ramped up stress experiences, is that that pain is warning of us of real damage being created in our bodies. So this anxiety and reactivity isn’t necessarily just perceived but is actually happening. We are not being overly dramatic or a brat (what those with Autism are often accused of). Damage to our physiology is what noise can actually do.

Source: Autistic Traits and Experiences in “Love and Mercy” The Brian Wilson Story – The Peripheral Minds of Autism

Autistic Odes to Noise-cancelling Headphones

Parents and educators, check out these autistic odes to noise-cancelling headphones. They imply a lot about neurology and how misguided behaviorism is. In her thesis that introduced neurodiversity, Judy Singer called computers an essential prosthetic device for autistics. That they are. A decent set of noise-cancelling headphones is another essential device. I remember my first pair of noise cancellers. They were a revelation in sensory management. I wish they existed when I was in school. Normalize them in our classrooms, and get them to our autistic and sensory overloaded students.

The Sonic Bliss of Quintessential Autistic Gear: Noise Cancelling Headphones » The Aspergian

I’ve had AirPods Pro for a few weeks. They are pocketable and effective sensory regulation that is always with me. Noise-cancellation in such a portable package is a boon to my sensory management. Again, I wish I had them in my K-12 years. They would have changed my life and avoided some meltdowns and burnout.

Note: noise-cancelling headphones are not for everyone. They can aggravate hyperacusis and misophonia. If you can, try noise-cancellation from different manufacturers to see if one is more compatible with you. I’m fortunate to be compatible with the Sony, Sennheiser, and Apple noise-cancellation I’ve tried. They all work for me.