We Have Normality, I Repeat, We Have Normality
I just rediscovered the study ”‘Putting on My Best Normal’: Social Camouflaging in Adults with Autism Spectrum Conditions” in an app that lets you highlight on the web. I do not appear to have highlighted the entire thing, but it seems a close call. Here are some of the passages that really are popping out at me right now.
Camouflaging is likely to exist on a spectrum (similar to autistic traits) in those who have an ASC diagnosis and those who are subclinical. However, self-reported evidence suggests possible categorical differences between autistic and non-autistic camouflaging. For instance, camouflaging by ASC individuals has been reported as extremely effortful and challenging to one’s identity (Bargiela et al. 2016), unlike ordinary reputation management in typically developing individuals.
This is an important bit, and it reminds me of how I rankle when someone responds to me mentioning that I’m autistic by saying something along the lines of, “Well, it’s a spectrum, we’re all a little bit autistic.”
No, you aren’t. (Well, maybe you are, but that’s not what you’re saying when you say that.) Autistic camouflaging is not the same as the various masks and performances that people wear and engage in just to get through the realities of living in a world with billions of other people, all with their own inner lives and outer commotions. I can’t speak to whether or not any of the same psychological processes are involved, but autistic camouflaging, as opposed to “ordinary reputation management” is a kind of self-harm. It’s a kind of psychic violence.
What neurotypicals do on a day to day basis is like holding your breath underwater. What autistics do can be more like drowning while gasping for air. I’d agree, were it suggested, that much of neurotypical “reputation management” is superfluous and unnecessary. I just wouldn’t say it’s the same.
Camouflaging in certain settings may lead to the perception that individuals function well and do not experience any problems, even though those individuals still experience difficulties as a result of the interaction of their ASC and the context.
This is a huge one. Huge. It’s definitely a problem for the late-diagnosed, since years, decades, or a lifetime spent camouflaging in varying degrees and ways in varying contexts looks a lot to some medical, mental health, and social services professionals as evidence against a diagnosis.
Individuals with ASC also display significant variation in their outcomes across the lifespan, especially concerning their social functioning.
So it’s not just about the late-diagnosed, because even the early-diagnosed can find that the severity of difficulties interfacing the world around them can ebb and flow. It’s very easy for some people to take this as proof that we exaggerate the bad times, or argue that since we can have comparatively good periods we must not be trying hard enough in those other times.
(For me, this is going to be an issue when it comes to employment and/or disability benefits. The fact that sometimes in my life I’ve managed to work, say, six months instead of one—or two years because the job involved friends of mine and so a lot of the social and performance pressures I felt but didn’t know were autism were circumstantially mitigated—doesn’t necessarily mean I will ever again be able to work for more than six months, or even one, at a time. The entire process of Social Security benefits for the late-diagnosed autistic does not take this into account in any way whatsoever.)
Camouflaging was partly performed through suppressing, hiding, or otherwise controlling behaviours associated with ASC that were seen as inappropriate in the situation. The extent to which this happened could vary depending on who the person was with; camouflaging tended to occur less often with close friends and family members, although some respondents described camouflaging at all times.
In some ways this goes back to what I’ve said before about having had some social circles in my past where atypical or “quirky” behaviors and attitudes were more generally accepted, or at least endured, than is the case in the general population. Much like I’ve had two jobs that lasted around two years because friends recruited me and unknowingly lessened the social and performance pressures I feel, these social circles provided similar accommodations.
Respondents described attempting to minimise their self-soothing or ‘stimming’ behaviours, and their responses to sensory overstimulation, in order to make their condition less obvious to others. These techniques included using objects as ‘props’ to meet sensory needs in a subtle way, and giving themselves regular excuses to leave overstimulating environments and calm down.
Which fits nicely with my hindsight supposition that my two decades of smoking in fact functioned to mask any stimming behaviors I might otherwise have been engaged in during those years. Zippo lighters as the original fidget spinners? Gesturing with one’s cigarette in lieu of hand-flapping? (I don’t actually flap, but I do have other hand- and finger-oriented stims.)
However, it is important to emphasise that not all respondents developed such structured rules for conversation; some simply had the goal of speaking as little as possible in order to get out of the interaction quickly.
This, too, echoes things I’ve touched on before: my one-time use of a toolkit for introverts to manage aspects of what in fact was autism, and my recent realization that, especially in close-quarters with any figure possessed of some fashion of authority over me, I frequently will acquiesce and defer to their opinion of what I should do, just in order to “get out of the interaction quickly”—even if it means I’ve agreed to something that I know will be worse off for me in the longer term.
By far the most consistent consequence of camouflaging described by respondents was exhaustion. Camouflaging was frequently described as being mentally, physically, and emotionally draining; requiring intensive concentration, self-control, and management of discomfort. The longer a camouflaging session continued, the harder it became to maintain the intended level of camouflaging. Many respondents reported needing time to recover after camouflaging, where they could be alone and release all of the behaviours they had been suppressing.
Here is where, technically, we get the the matter of burnout. Imagine an early-diagnosed autistic person who is never given any true opportunities to be out in the world uncamouflaged, or a late-diagnosed autistic person who, subject to the society’s general background radiation of conformity, never even knew there was a “secret self” being trapped inside. If “the most consistent consequence of camouflaging described by respondents [is] exhaustion”, what happens if you’ve had to camouflage for most of your life?
Autistic burnout. (The real stuff, not the millennial branding opportunity.)
The situations in which respondents camouflaged were so extensive for some, they felt that they were losing sense of who they truly were. Respondents often felt they were playing so many different roles, it was hard to keep track of their authentic sense of identity. This increased the anxiety and stress associated with camouflaging, as individuals lost a sense of grounding and security in who they were.
I can’t speak to this dynamic in an early-diagnosed autistic and what camouflaging is like for them. I can say, as a late-diagnosed autistic, that there’s an intense period of both a real identity crisis and a kind of imposter syndrome, as the diagnosis throws your entire past life into psychic disarray. What parts of my life back then were really me? What parts of my life right now are really me? This crisis is exacerbated during times of seeking benefits or services, since the lateness of diagnosis effectively masks your lifetime of unmet support needs, and thereby presents you as not suffering a sufficient degree of impairment.
In the short term, camouflaging results in extreme exhaustion and anxiety; although the aims of camouflaging are often achieved, in the long-term there are also severe negative consequences affecting individuals’ mental health, self-perception, and access to support.
This does sum up the problem, and it’s important to underscore that “the aims of camouflaging” typically (no pun) are to assuage or avoid the discomfort of neurotypical society. When neurotypical social performances are no longer demanded, whither the exhaustion and anxiety of the actually autistic?