"Doing less" can unlock capacity and increase well-being for many autistic people.
Source: Andrea Piacquadio/Pexels

Historically, in both the clinical setting and in terms of societal perceptions, autism has been conceptualized as a list of skills, behaviors, and observable traits that mark the differences between autistic and non-autistic people. This understanding has been presented for decades in a way that implies that we can simply add or subtract said attributes from any given human to create either an autistic or non-autistic person. In light of this, and in a world where the majority of people are non-autistic, it is unsurprising that many autistic folk have learned to perform non-autistic ways of being in the world. While researchers and clinicians have led the way in this endeavor with interventions that aim to make autistic people indistinguishable from their neurotypical peers,1 many autistic people under pressure to conform to societal norms have also developed their own ways to appear non-autistic via a process called ‘camouflaging’.

When talking about camouflaging, we most often think of ‘social camouflaging’, which involves both the performance of socio-culturally expected behaviors (such as making eye contact and engaging in standard greetings) and the suppression of autistic traits during social interactions.2 In the authors’ experience, camouflaging also includes emulating other socio-cultural expectations, such as the organization, planning, and pacing of tasks in work and home environments.

Through the process of developing camouflaging practices, many autistic people have built skills independently throughout their lives, both consciously and subconsciously. Many of us have taught ourselves social skills in accordance with prevailing norms by observing others, building layers of social scripts, memorizing socially acceptable responses, and practicing acceptable facial expressions. 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.3

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.4 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.5

The impact of autistic camouflaging should not be underestimated.
Source: Valeria Ushakova/Pexels

Camouflaging is tiring in and of itself. Additionally, we live in a world that is not built for us; a world brimming with social expectations, quick transitions, and unpredictability. 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,6 meaning that we process greater volumes of information from our environment.7 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.

While this may sound counterintuitive and counterproductive, “doing less” fosters greater productivity in our professional lives and more meaningful personal relationships. This has involved a triaging, of sorts. Where possible, we have disengaged from socio-cultural expectations and taken stock of the core tasks, activities, and responsibilities of daily life fundamental to our survival and/or wellbeing. We have scheduled rest periods to punctuate our time—be it hourly, daily, weekly, or monthly—to fulfill our need for rest before we reach burnout. We have determined tasks that can be partially or completely outsourced, and found ways to relieve ourselves of tasks that consume energy better spent on more important matters. The process of paring our daily lives down to the most essential and important tasks has unlocked the energy, resources, and capacity to better and more consistently engage in those activities. Where our capacity was previously spread too thin to allow us to function optimally and consistently, we now have greater capacity to engage in the parts of our lives that matter the most.

We are fortunate to live in Australia where funding to support daily living and access to services is allocated for some disabled people, including autistic people. While this system is not without its faults, we acknowledge our privilege as many of our international autistic peers cannot access such resources. In spite of this, the focus around capacity building in governmental, educational, and clinical contexts remains firmly fixed on building skills. For example, there is often a resistance to the idea of meal delivery services for autistic adults, with a preference for teaching cookery to increase skills of daily living. While such an approach is not without merit, in our experience, the ability to complete a task in isolation isn’t always the issue; it is completing the task amongst the other competing demands of daily living that proves impossible. Toast for dinner again, anyone?

For many of us, capacity building isn’t about learning how to do more, it’s about learning how to shed parts of our daily lives that don’t serve or suit us; it’s about finding practical supports that allow us to do less, so that we can function with greater capacity, be more productive, and live healthier, more balanced lives. In a society that focuses on doing more, staying busy, and being productive, stepping back and doing less is an important skill to develop in and of itself. Doing less is harder than it sounds, and it is all too easy to find oneself overwhelmed by work deadlines, household chores, and social events. It is not just about prioritizing what matters, but about discovering what matters the most.

References

[1] Lovaas, O. I. (1987). Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children. Journal of Consulting and Clinical Psychology, 55(1), 3-9. https://doi.org/10.1037/0022-006X.55.1.3

[2] Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M., & Mandy, W. (2017). "Putting on My Best Normal": Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders, 47(8), 2519-2534. https://doi.org/10.1007/s10803-017-3166-5

[3] Cage, E., & Troxell-Whitman, Z. (2019). Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults. Journal of Autism and Developmental Disorders, 49(5), 1899-1911. https://doi.org/10.1007/s10803-018-03878-x

[4] Beck, J. S., Lundwall, R. A., Gabrielsen, T., Cox, J. C., & South, M. (2020). Looking good but feeling bad: “Camouflaging” behaviors and mental health in women with autistic traits. Autism, 24(4), 809-821. https://doi.org/10.1177/1362361320912147

[5] Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (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. https://doi.org/10.1089/aut.2019.0079

[6] Remington, A. (2018), cited in Wilson, C. (2018, 14 July). The Autistic Advantage. New Scientist, 32-33.

[7] Remington, A., Swettenham, J., & Lavie, N. (2012). Lightening the Load: Perceptual load impairs visual detection in typical adults but not in autism. Journal of Abnormal Psychology, 121(2), 544-551. https://doi.org/10.1037/a0027670