Veiled chameleon, Chamaeleo calyptratus, changes colour mainly in relation to mood and for signalling. By Chiswick Chap - Own work, CC BY-SA 3.0
When autism was finally identified as something that looked like a coherent set of characteristics distributed along a spectrum, it was believed to be highly predominant among men. Simon Barron-Cohen’s extreme male brain theory of autism was informed by the high male:female ratio and drove research in this direction.
It turns out that the proportion of males is much less pronounced. So why weren’t the autistic women identified then? One of the hypotheses is that we, “aspie gals”, are better at passing for normal. This behavior is called “camouflage” and it consists of “putting on your best normal”.
Camouflage is a set of behavioral strategies adopted by autistic people to cope with the neurotypically formatted society. The objective is to hide the most visible aspects of our neurodiverse behavior during social interaction with neurotypicals. These strategies can be as simple as making eye contact or smiling when neurotypicals expect eye contact and a smile, and as complex as a detailed and rehearsed masked “best normal” behavior, achieved through careful study of others’ mannerisms, vocabulary, intonation and body language.
Most high functioning autistic adults are aware of the existence of “social games”, or interactions with hidden agendas and meanings. Social games necessarily involve deceptive behavior and “mind reading”, something autistic people are particularly unequipped for. It’s impossible to mask a role in a social game.
Camouflage has an immense cost to the autistic person since most behaviors during social interactions have to be transferred from the spontaneous or automatic sphere into the overly self-regulated field. It is exhausting and eventually leads to depression and even suicide.
It’s no wonder that autistic people have higher quality interactions among themselves and tend to withdraw from situations in which they must interact intensively.
Hours of social interaction make me feel as if I ran a marathon. Bad analogy: when I participated in street races I finished a 10K track, for example, tired but invigorated. Interacting with people makes me feel drained, bled, empty like a balloon the day after a kid’s party.
Not all social interactions are draining, though. Teaching, for example, is not. I take pride in being a good teacher. No: I’m a great teacher. In the universities that had mandatory students’ evaluation I always had stellar scores. My students keep in touch with me until today, some of them for decades. I’ve been principal investigator of several research projects and except for accounting, in which I suck, I do just fine. Even the eventual and rare conflicts between my students weren’t stressful for me and I believe I handled them in ways that avoided damage to all parties involved.
Completing assignments and following orders is also easy-peasy. As long as the orders and expectations are clear, it’s a smooth ride.
No camouflage is necessary when teaching or when completing assignments. When I teach, I am being a teacher. I’m not pretending to be anything because that’s what I am: a teacher. It’s a structured social interaction with clear expectations.
When is camouflage necessary and social interactions become a glimpse into hell? In all other situations. All of them. In family interactions, when in almost six decades of my life I have never been able to fulfill my mother’s expectations because they were never explicit. First, she would claim three items when in fact there were about ten. Second, frequently the three items she claimed to expect were not what she actually expected. Third, she expected me to guess (mind reading) which were the hidden expectations, “like everybody else”. Yes: neurotypicals expect you to read non-verbal cues. Does that sound obvious to you? Not for us. It makes no sense to us to say or signal something and mean something else.
As I said, autistic people are aware of the existence of these perverse social games but they can’t play them.
A trip to the grocery store, to the bank, to a clinic, to a gym - these are all potential horror stories. I had to travel most of my life, both nationally and internationally. It didn’t get easier with time: it got worse. To the point that my last trips took weeks to prepare, days to pack up and lots of diazepam to handle interacting with the cab driver, the random people at the airport entrance, the lady at the counter, the lounge, the boarding process, customs and immigration, more lines, more random people and finally the hotel counter. When I finally reached my bed at a hotel, I felt I could just stay there, curled up, forever.
At 57, some camouflage rituals are automatic for me. However, anyone who pays attention, like the people I get closer to or work longer with, in different social settings, realizes my act is just not right. That’s what it is: an act.
In the last newsletter/article, I commented on the smile challenge. If I have to smile, I usually contract the corners of my mouth, nod and hope for the best. That doesn’t cost much. When someone echoes my mother’s insistent coaxing for me to smile, then I immediately resent them and become unable to fake any semblance of a smile. Honestly, it’s easier (and a lot more fun) if it’s completely fake. In 2007 I was squatting with two friends at a gym that didn’t have an adequate rack or floor. I was in full lifting gear, including knee wraps and the person who wrapped me did it in the wrong way. Long story short, I broke my leg (complete fracture of the fibula) while at the squatted position with about 330lbs on my back. Suddenly, the leg felt strange and weak.
- Guys, help me up… something’s not right…
I said. As one of my friends unwrapped me, he said:
- I think I know what happened. This is a general population gym: just smile and let’s go to the hospital.
The friend supported me on the right side and I flashed some smile at the many people who were looking at us. They looked very interested and I was determined not to indulge them. That smile was easy: they wanted emotion, entertainment, I gave them none. Just a creepy fake smile and then I enjoyed their intimidated embarrassment.
Social niceties were drilled into my brain from early childhood but they are frequently misplaced. Yesterday my husband was leaving for work and I said “good night”. It was early morning and the right nicety would be “have a nice day”. I was told that my dad said “my condolences” to someone offering him appetizers at his engagement party. My father is autistic too.
I always hated parties. I have blurred memories of hiding away from others in kids’ parties because it was all too loud and boring. I didn’t have a best normal then and things could get ugly if some kid tried to bully me. I’ve always been violent when provoked. I hated when I had to beat up some kid because I knew I’d get an earful from my mother, who was embarrassed by my lack of social skills.
As an adult, I usually got drunk or high at parties or any social gatherings. I loved drugs (still do). Downers made things less unbearable but then there was vomiting and depressing hangovers. Once someone took me to a night club and in five minutes I needed to leave. There was a long line that didn’t move, I sat down on the floor and started to cry, security came because they thought that I was dangerously intoxicated - ironically, I was not because there wasn’t enough time - , there was confusion, screaming, and somehow I found myself outside.
I managed to excuse myself from weddings, birthday parties and other such situations little by little and it always involved some tension. After all, I don’t know how to lie. My lies are worse than my smiles. From saying nothing, and then avoiding the questions about why I didn’t go, to actually saying “I’m sorry, I won’t go because I hate parties”, it took a while and it didn’t get less awkward.
Until one day I managed to tell a neurotypical friend that I not only hated but could not possibly understand anyone enjoying that shit. That it made no sense whatsoever to go to a place where the background noise was so loud that all conversations required screaming and were just plain stupid; that parties always looked filthy, the loud sound horrendous, and the music selection was trashy; that drinks were invariably cheap and not cold enough, food was greasy and gross and bathrooms were impossible to use.
I don’t remember their reaction but I remember mine: big relief. The moment I stopped “wearing my best normal” and admitted what I really thought or felt, there was this incredibly pleasant sense of freedom of not giving a damn about whatever the other person thought or felt.
It would take decades to expand this territory of freedom into more serious realms of social interaction. Until then, I kept wearing my best normal in committees, teams, in conversations with directors, with the Health Ministry secretary, at public service divisions, and in application cover letters. The results were frustrating at best, and frequently disastrous.
Last week I read that an organization I really admire was hiring a manager or director. I may be educationally qualified (or even a bit overqualified) for the position but I am dramatically underqualified in what really matters: social skills. So I wrote to the colleague who announced the position and I openly said “I would love to work with you guys but I’m autistic and I have no clue about what goes on in the minds of people in non-hierarchical teams. I know how to command and I know how to follow orders, that’s it. I’m oblivious to all the sub-textual conversation between people and it only confuses me”. Why did I do that? After all, I wasn’t going to apply. I couldn’t. But I knew the person who posted the position, I like him and I truly respect that organization.
The response surprised me. He thanked me for being so blunt and asked me whether I’d be available for consultancy.
And on this day, a link in the chains that have constrained me since forever was broken. I finally came out of the closet in the sacred overqualified professional environment, that scary thing you don’t want to upset at all. What happens if I make a habit out of this? Let’s try.
I’m affiliated with a couple of organizations and in two of them I am very active. Recently, the number of Zoom calls crossed the threshold of my social interaction limit. At first the faces, all those strange faces, just confused me. To be honest, they also created anxiety. I don’t have any idea what their expressions mean, if what they said has one, two or five indirect speech layers and if my response was appropriate or not. They are overwhelming. It’s too much social information to process. When that reaches an unmanageable point, a switch turns off and I don’t process anything anymore. It’s just boring. The next stage is “irritating as hell”, followed by “I’m out of here”.
But I like those organizations. A lot. If I belong anywhere, I belong with them, at least for now. So I wrote to both groups, an open communication, something on this line:
“I’m excited with what we are doing and the course that the [Institute/Organization] is taking. There is one thing I need to disclose, otherwise it will seem like I’m avoiding responsibility. I’m autistic and Zoom calls are a challenge for people like me. First, there are too many faces with facial expressions to be interpreted. We don’t do well in facial expression interpretation so I don’t know if you are happy, annoyed, insulted or just bored. Second: you speak. I don’t know how many levels of indirect speech underlie your speech. I don’t do indirect speech - many of us don’t. Third, there’s the sensory hypersensitivity issue: the noise (especially the crackling background noise), the light, and the colors are too much for me (and for many others like me). Forgive me if I do skip the meetings and just read the reports but that’s the truth.”
Both groups welcomed the disclosure with enthusiasm. One of them actually took steps towards creating alternative/inclusive participation frameworks for neurodiverse members.
We’re at this point now and I hope to have news for you soon. There’s a lot about horizontal/unstructured X hierarchical/structured social interaction frameworks involved here. I expect several neurotypical assumptions to be challenged. I also expect the more mature and critical-thinking colleagues to welcome the challenge while others will become defensive or even hostile.
Not only I don’t care about those who will react defensively but I decided that introducing the subject, as well as identifying myself as an autistic person, is my default setting from now on. Part of the mission.
Adopting inclusiveness for neurodiverse members in organizations is not about adapting to our deficiency. It’s acknowledging that we have difficulty with certain social procedures but we also bring unique abilities to the table. Advocacy means showcasing how much an organization or a society has to gain by including us, going beyond the necessary, basic social justice argument.
I guess part of the larger agenda on neurodiversity involves these little steps, one of which is stripping ourselves off the camouflage.