This month, there is a #TakeTheMaskOff social media campaign, about the role of masking in autistic lives (and the harm it can cause), so I thought I'd write a quick post about my own personal experience.
A quick definition, in case anyone needs: masking, or camouflaging, is affecting learned social behaviours in order to not appear autistic. Its importance as a social and medical issue has been significantly raised recently, following an extensive and thorough study by Sarah Cassidy, Louise Bradley, Rebecca Shaw and Simon Baron-Cohen that assessed risk factors leading to suicide amongst autistic adults (https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0226-4).
As I've said in previous posts, I was diagnosed aged 36. Like, I'm sure, many other late-diagnosed autistic adults, the diagnosis didn't come as a shock, didn't sneak up out of the blue after decades of thinking I was 'normal'. I had never been terribly good at fitting in, was always weird, different, outside, other. So I adapted (or tried to); I had no reason not to, no social indication that I was okay being myself.
It seems, as far as memory goes, that I start adding learned behaviours for fitting in around the age of fourteen. And then carried on adding... well, for the next twenty-odd years, but primarily during my teens, those critical years for learning how to be a human in adult society. So many distinct and frequently contradictory behaviours were piled on, often little more than a mirror of the person I was talking to at that point in time; by the time I reached twenty, I can distinctly remember realising that I had no idea who I was, other than a constantly shifting pile of arbitrarily adopted performances, differently arranged for every new situation.
I still have no idea who I am. My diagnosis has not helped me reach a definable me. Even now, sitting alone, typing into the void, it still feels like a performance - every day does, every minute, even in my dreams. Like Moira Shearer in The Red Shoes, albeit with far less elegance, performance and existence are inseparable. It is exhausting and debilitating and emotionally overwhelming.
Consequently, I'm afraid I can't take the mask off. There's just another mask below, and another, and another. Masks all the way down. But that doesn't mean I think ill of the campaign. On the contrary, public discussion of masking- and not just within the autistic community, but across society as a whole - hugely valuable.
Not least because, for all the people who feel they can shed their mask this month, and all the people like me for whom that's no longer possible, there are also a great many autistic people whose mask is the only way they can safely and securely live through each day. There is a terrible irony in the increased risk of suicide associated with masking, when for an appallingly large proportion of autistics, it is also an essential protection against dire threat. As a white man in a wealthy country, I'm shielded from that; countless other autistics have no such advantage.
So if you can safely and freely take the mask off, then do so with my best wishes. The most important thing that could be bequeathed to future autistics, however, would be a world in which a mask is never required, by anyone, anywhere, in which it's acceptable for a person to be themselves, even if they don't fit into that box marked 'normal'.
(Unfortunately, that would also be a world in which we're not treated as a disease or an injury, and that seems an awfully long way off. The catastrophic harm associated with masking is constantly exacerbated by antivaxers and their like. This is why it is so critical that they be stopped, rather than encouraged as they too often are today. Their poison is killing autistic people.)
A quick definition, in case anyone needs: masking, or camouflaging, is affecting learned social behaviours in order to not appear autistic. Its importance as a social and medical issue has been significantly raised recently, following an extensive and thorough study by Sarah Cassidy, Louise Bradley, Rebecca Shaw and Simon Baron-Cohen that assessed risk factors leading to suicide amongst autistic adults (https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0226-4).
As I've said in previous posts, I was diagnosed aged 36. Like, I'm sure, many other late-diagnosed autistic adults, the diagnosis didn't come as a shock, didn't sneak up out of the blue after decades of thinking I was 'normal'. I had never been terribly good at fitting in, was always weird, different, outside, other. So I adapted (or tried to); I had no reason not to, no social indication that I was okay being myself.
It seems, as far as memory goes, that I start adding learned behaviours for fitting in around the age of fourteen. And then carried on adding... well, for the next twenty-odd years, but primarily during my teens, those critical years for learning how to be a human in adult society. So many distinct and frequently contradictory behaviours were piled on, often little more than a mirror of the person I was talking to at that point in time; by the time I reached twenty, I can distinctly remember realising that I had no idea who I was, other than a constantly shifting pile of arbitrarily adopted performances, differently arranged for every new situation.
I still have no idea who I am. My diagnosis has not helped me reach a definable me. Even now, sitting alone, typing into the void, it still feels like a performance - every day does, every minute, even in my dreams. Like Moira Shearer in The Red Shoes, albeit with far less elegance, performance and existence are inseparable. It is exhausting and debilitating and emotionally overwhelming.
Consequently, I'm afraid I can't take the mask off. There's just another mask below, and another, and another. Masks all the way down. But that doesn't mean I think ill of the campaign. On the contrary, public discussion of masking- and not just within the autistic community, but across society as a whole - hugely valuable.
Not least because, for all the people who feel they can shed their mask this month, and all the people like me for whom that's no longer possible, there are also a great many autistic people whose mask is the only way they can safely and securely live through each day. There is a terrible irony in the increased risk of suicide associated with masking, when for an appallingly large proportion of autistics, it is also an essential protection against dire threat. As a white man in a wealthy country, I'm shielded from that; countless other autistics have no such advantage.
So if you can safely and freely take the mask off, then do so with my best wishes. The most important thing that could be bequeathed to future autistics, however, would be a world in which a mask is never required, by anyone, anywhere, in which it's acceptable for a person to be themselves, even if they don't fit into that box marked 'normal'.
(Unfortunately, that would also be a world in which we're not treated as a disease or an injury, and that seems an awfully long way off. The catastrophic harm associated with masking is constantly exacerbated by antivaxers and their like. This is why it is so critical that they be stopped, rather than encouraged as they too often are today. Their poison is killing autistic people.)
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