Between May 9-12th I spent an inordinate amount of time glued to Twitter, where several people I follow were tweeting from the annual meeting of INSAR (International Society for Autism Research). Having presented at a different conference a fortnight ago, I was more than happy to read about the interesting bits without having to deal with the socialising, so I was really appreciative of attendees’ reporting efforts. One of the studies which prompted the most discussion on Twitter was on suicidality in autistic people; the result treated as the headline was that masking autistic traits emerged as a significant predictor of suicidal thoughts and self injury. This surprised precisely none of the people I follow, but it was good to see the autistic community’s suspicions confirmed by research.
Masking is something I’ve been thinking about a lot recently. I first came across the idea that autistic people might camouflage their traits in early 2016, when I started to suspect I might be autistic. As I’ve said before, my initial reaction to this idea was an immediate counter-reaction along the lines of: well, I’ve been very obsessive since I was tiny, in many ways that don’t match the description of OCD, and I am very sensitive to all kinds of sensory stimuli…but I don’t have any problems with socialising other than being shy, surely. This seems to demonstrate an impressive lack of self awareness in retrospect, but was actually a sign of how thoroughly I’d been ‘taught’ to hide my differences, even from myself. The scare quotes are in aid of the fact that I don’t think the people I remember ‘teaching’ me were any more aware of what they were doing than I was: they were most likely just reinforcing their own unconscious social/cultural norms around appropriate behaviour. Because this process was so subliminal, it took a while for me to tune into it, but the more I paid attention to my behaviour in social situations, the more I noticed. The missed beats in conversational turn taking; the confabulatory responses I gave when I hadn’t yet processed what the other person had asked me in the expected time; the fact that I frequently didn’t even notice that I had answered without understanding until an hour later; the lengths I went to in order to make it look like I was making appropriate eye contact; the effort of arranging my face to match the expressions conventionally held to correspond with polite interest or sympathy or whatever else the occasion asked for; the immense tension I felt whenever I was talking to anyone other than my wife.
People refer to different levels of intent when they talk about masking. It also seems sensible to note here that masking isn’t the whole story: some of what professionals talk about in terms of masking are just behaviours that they don’t think of as typical of autistic people, because of autism stereotypes and a history of research based on prepubescent boys who fit those stereotypes. However, masking is a concept that many autistic people seem to relate to, including me. Some can do it deliberately, in order to pass as neurotypical in certain situations. Channel Four’s recent documentary Are You Autistic (no longer available on catch up, but shh…I bet it’s on YouTube somewhere 😉 ) showed an interesting demonstration of this, in which a group of autistic women masked through several rounds of speed dating, leaving the men who took part incredulous when it was revealed that their conversational partners were autistic. I was awed by this despite my knowledge that masking is harmful, as I can’t pass as a ‘good’ neurotypical however hard I try. Although people don’t peg me as autistic, they do often see me as unfriendly, arrogant, or standoffish. In fact, I think trying to suppress my autistic traits actually makes things worse in this respect, because trying to guess what the other people in a group will respond to, positively or negatively, makes me so tired and anxious that I shut down and stop trying to make friends. That’s where prior impressions of me as standoffish tend to come from. That, and my innate tendency to talk like I’ve swallowed a dictionary.
I personally don’t believe that my experience of masking originated as a purposeful set of behaviours that I could roll out to get through certain situations, but as something much less within my conscious awareness. When I try to think of how I interacted with the world until the age of 8 or so, I don’t remember feeling that tension at school, or at home. I remember being told not to rock by mum, and I remember being extremely sensitive to criticism, because I had no awareness of how other people saw and responded to me, so from my perspective, criticism always came out of nowhere. Mostly, however, I was resolutely myself. Monologing about dogs; planning a secret party when I calculated that my best friend would be 100 months old and being confused when no one else found this interesting; reading everything I could get my hands on, from the backs of cereal packets to the encyclopaedia; completely ignoring other children who called me weird, because I didn’t care as long as I had my two friends; and being endlessly in motion – dancing down the street, shredding tissues and twigs in ignorance of adults’ disapproval, swinging until I was hit by motion sickness. And because I was academically able, the biggest pushback I experienced came not from teachers or even my parents, but from the parents of friends. There were comments about me being bossy and big headed and tactless that I initially brushed off, but which mounted into a real attempt to mould my behaviour into something more acceptable to them. Coming out of my first recorder exam, age 9, full of my 94% and desperate to tell my dad, I had a real experience of shame when my best friend’s father loudly muttered “her head will never fit through the door back home”, instantly crushing me. Around that age, I suddenly lost my happy oblivion, and became constantly aware of how everything I did and said was Wrong. Too much – too excitable, too loud, too weird. Why did I have to be so weird? Obviously, being bullied over the next four years just compounded this: by the end of middle school, I was hyper-aware of the potential reactions of others to every word I spoke, every movement I made, and I longed to become invisible. That was my training in social skills.
I was gradually shamed into masking my stims as well. For those of you unfamiliar with the term (since this didn’t start out as an autism blog!), stims are behaviours that involve seeking specific forms of sensory input in order to regulate levels of arousal, deal with being overwhelmed, or just because they feel good. Some autistic people use repetitive movements like rocking, flapping, or spinning; some seek out patterns or lights or colours; you can find examples for any sense. On top of rocking, swinging, and shredding things, which I slowly realised were ‘weird’, I had a lot of stims which revolved around music. That recorder exam came six months after my primary school class had started learning the recorder en masse. Perpetually curious, I took the book of exercises home with me, and learned the entire thing one Saturday morning because I liked the patterns the tunes made. By my mid-teens I was also singing in multiple choirs, playing the flute in my school concert band, and I listened to the radio constantly; most of the enjoyment of these came from positioning myself the middle of complex harmonies, whether literally in my choirs and band, or using stereo earphones. All came under fire. The recorder was not cool, and I was teased mercilessly at school for continuing to play into my teens. The concert band wasn’t much more highly regarded. One of my favourite stims was singing a third above whatever was playing on the radio, and this was consistently misinterpreted as showing off. I loved the harmonics, not the sound of my own voice, but I was so scared of the concept of showing off as an extension of being too much that I started silencing myself whenever I could. I was also drawn to various bands because of the sensory aspects of their music, rather than whether they were technically ‘good’ or popular. I absolutely rhapsodised over Muse’s Unintended when it came out, I was glued to the TV the first time I heard it on TOTP, age 14; one adult (who shall remain nameless) in my life at the time joked that my enthusiasm suggested I was wanking over the lead singer. Right into my 20s, people were policing my taste in music, insisting that whatsisface couldn’t really play the piano or soandso was manufactured or that only hipsters loved whoever. When something made it into my music collection, it was because the rhythm or the bass or the harmonies resonated with my nervous system – but I was also desperate to please and easily led, and all sorts of sensory pleasures were thrown away because they were ‘uncool’. Thinking about it now, I’d rather like a time machine in order to go back to those moments, cover my younger self’s ears, and proceed to give a thorough bollocking to each culprit in turn.
On a less rageful note, the final nail in the stimming coffin was my counselling training. I find it incredibly difficult to sit still, in a chair, with my feet on the floor, but when you are dealing with other people in distress, you have to be a calm, relaxed presence, because any sign of stress ends up mirrored by your client. So when I started working, I began spending hours every week purposefully but painfully ignoring this immense pressure to move. Because I can’t ignore it completely, what this usually results in is picking the skin around my fingers, or digging my nails into my palm, or something else mildly self destructive. I’ve only recently noticed this, and I have literally no idea how to deal with it. Is there any way I could stim openly in front of clients without them misinterpreting this as anxiety or boredom or lack of attention? When you’re diagnosed, no one gives you the guide to not losing your mind as an autistic adult in a world that doesn’t get autism, let alone how to accomplish this when you work in a helping profession.
If I had to summarise the problem masking causes in my life, that would be the best example. All that pent up energy doesn’t just disappear into the ether – it takes a greater amount of energy to contain it, and at some point there is a demand for release that arrives in a far more destructive and explosive form. The harder I try to suppress my autism, the more likely I am to start struggling with the compulsion to self harm. The reason that urge didn’t lessen after I learned typical emotion regulation strategies or processed traumatic memories is because its number one function is as an emergency pressure valve – it’s basically a self destructive stim that I developed as more and more of my natural outlets were taken away from me.
The compulsion to self harm and the ever-present threat of burn out are my personal costs of masking, and the more I tune into my body, the more I understand why. Whenever I interact with anyone other than my wife, I feel like I’m screaming internally, desperate for it to end. Not because I’m scared of the person I’m talking to, or have social anxiety over being judged, but because masking behaviours hold my real self rigid in pain, and I can’t explain it to you any better than that. It hurts me to talk to strangers and friends, at conferences or cafes, on the phone or in person, and I even catch myself holding my breath when replying to emails sometimes. It’s inescapable and makes me wish I never had to open my front door again. Bracing yourself for and talking yourself down from every single interaction, every single day, is exhausting.
It’s really difficult trying to figure out a less exhausting way of being in the world when you’re talking about behaviours that are deeply ingrained and almost unconsciously regulated, but there are some cracks in the mask. When I’m with my wife, my masking is probably reduced by 80%. I still put a fair amount of cognitive effort into interpreting things she says and responding in a conventionally sensitive way, but I will also rock, flap, play with my hair, deconstruct my food or other fun shreddable things, sit cross-legged or with my feet curled under me (“standing on the sofa”, as A calls it), stare anywhere but her eyes when I’m concentrating and at her eyes when I want to look at the pretty patterns, and generally behave in a drastically more sensory-seeking manner than I do in public. Because she loves me for who I am, not who I seem to be when I’m trying to blend in. If only the rest of the world felt the same way.