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:

The Sensory Hell of the Lunchroom

Needless to say, the dining hall, as well as being busy, crowded and a source of multiple odours, was also very noisy, as trays were picked up and clattered back down, cutlery jangled, and metal serving dishes clanged against metal hot plates. Meanwhile, the children, squeezed into rows of tiny seats bolted on to collapsible dining tables, grew louder and louder to make themselves heard over the racket. Indeed, the lunch queue alone can be the place where sensory problems ‘can turn into a nightmare’ (Sainsbury 2009, p.99). Perhaps unsurprisingly, therefore, all of the child contributors to this book – Grace, James, Rose and Zack – identified noise and crowds as being the most difficult aspects of school from a sensory point of view.

Indeed, the school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort (Ashburner, Ziviani and Rodger 2008; Caldwell 2008). There was also clear evidence from my own study that sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.

Source: Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

A recent discussion with neurodivergent coworkers brought up how overwhelming school lunch was for many of us, and likewise the group dining at our company meetups. I like to use the Brian Wilson biopic, “Love and Mercy”, to demonstrate how overwhelming dining at a crowded table can be. It has a very relatable dinner scene where Wilson is overwhelmed by the overlapping noises of utensils and conversation.

Getting lunch is a trip through “sensory hell” for many neurodivergent students.

Sensory Hell is the opposite of something being stimmy. It is utterly and totally unbearable.

Maybe you’re thinking of the classic scenario of the autistic person melting down in a busy grocery store, and it’s true that grocery stores are often considered tools of the devil by autistic people. But anything can be a sensory hell.

Source: 7 Cool Aspects of Autistic Culture | The Aspergian | A Neurodivergent Collective

Design for neurological pluralism. Let neurodivergent students eat without overloading them, melting them down, and burning them out.

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

See also: