Twenty years asleep: On Masking for Half a Lifetime

I’ve been following the #TakeTheMaskOff series from the start, and found myself increasingly engaged by it.

First question, then: what exactly is Masking? In a nutshell, it’s a means by which some people on the autism spectrum try to hide their condition so that others will accept us. But that’s an extremely simplistic answer, and there’s a lot more that can (and should) be said about it, so I’d encourage you to explore the various articles, posts and videos that have been published as part of the series: #TakeTheMaskOff.

TThe #TakeTheMaskOff campaign is really good, honestly

So #TakeTheMaskOff has helped me realise an aspect of my personal experiences that I never wholly accepted, which is that until about two years ago, I had pretty much spent almost the entire time since I discovered I have an autism spectrum disorder actively masking it.

That’s a period of over twenty years. Hence the title. I’m logical like that.

Why? Why did I do something daft like that? What’s the explanation? Well, simply because it was fine. It wasn’t a problem (ish). It seemed entirely natural. Choosing to mask was never a planned, conscious or even a rational decision. It was just one of those things that happened, and that I did without ever even thinking about it. Simply a basic fact and facet of my life.

Then after two decades merrily Masking my way through existence, I unexpectedly found myself in a situation where I was in a position to Take The Mask Off — or perhaps it would be more accurate to say that I wasn’t in the right state of mind to consciously continue with the Masking — and I quickly discovered that I didn’t know what on earth to do with myself or how to behave. As a result, I felt entirely lost. To be absolutely honest, I still (maybe) feel at least a little lost.

But this is why I believe Masking is so damaging and why we should avoid it if at all possible — and if it’s practical to do so (which I appreciate isn’t always the case) — because when it does become time to live life without it, it can be increasingly difficult to achieve. Because by that point you’ve almost forgotten how to exist without the Mask.

Let’s take a step back. I was 23 years old when I received my autism diagnosis. It was the mid-1990s and I had recently graduated from university. A tutor with whom I was quite friendly, and with whom I enjoyed many long chats about almost everything (which sometimes even included the subject I was supposed to be studying), had over time noticed some unusual behaviour on my part in classes and in our conversations. One day, completely out of the blue, he suggested I should speak to a friend of his who was an expert in autism. As an eager young student with distinctly swot-like tendencies, I dashed to the library and feverishly read up all there was to know about the condition (and let’s not forget this was pretty much entirely without the internet at the time). While the scales didn’t instantly fall from my eyes, what the books said certainly made sense. As a child, I’d always been the rather odd and solitary podgy kid with obsessive tendencies, prone to coldly displaying either no reaction to events or, conversely, a fit of screaming and borderline hysterical tantrums. Frankly, however, I’d always put such behaviour down to a combination of my general character and the effects of a rather traumatic and tumultuous home life (I won’t go into tedious details, but let’s just say that All The Bad Things That Could Possibly Happen Always Did Happen, And Then Some).

A few weeks after my various consultations, an unassuming envelope arrived containing an official letter confirming it — I’d been diagnosed as having Aspergers Syndrome (though I was disappointed not to get a special badge). “Oh well, there you go, that’s nice,” I remember thinking. And from that point on I pretty much just continued with my life, in the same way I had before. No advice and no support, partly because I foolishly didn’t seek any (though a few years later I did get some help and advice via Cognitive Behavioural Therapy). The clouds did not suddenly part and permit me a deep and new understanding of myself and the world. I was most definitely not Autistic And Proud, more just Autistic And Somewhat Befuddled (which wouldn’t have fitted so neatly on the desired badge, to be honest).

At the time, I was in a perhaps familiar post-university situation — though I clearly recall thinking that I was uniquely and unquestionably an abject failure who had no idea what he was going to do with his life. I’d returned home from university and was living with my mother in an unfamiliar city, to which we’d only relocated a few years before after I had spent the first nineteen years of my life growing up in a none more rural idyll. Overnight, we’d moved from a dull country town of just 4,000 people to a teeming city of well over 8 million inhabitants. Though my mother and I got on, we retained a lot of the history of that difficult home life I previously mentioned, so we didn’t really talk much about stuff. I’d just (and really, it was only just) failed to get the necessary degree result to allow me to stay on at university and study for a higher degree with vital funding, which I desperately wanted, so I was trying to start my Ph.D via distance learning— and failing abysmally. The friends I’d acquired at university, usually with some difficulty and self-obsessed agonising, had all disappeared to various points of the UK and across the world, and internet communication wasn’t yet in everyone’s home, so I was largely alone and left to entertaining myself, wandering the streets of London and feeling like the ultimate friendless oddball. Work-wise, I had periods of signing on the dole, plus a succession of odd jobs that bored me to tears and where I also failed to make any friends. As.a result, I didn’t really have anyone I felt I could tell about my diagnosis. Or even anyone I felt I needed to tell. So I didn’t. I just kept it to myself. I guess it was Masking — but it wasn’t deliberate, methodical, conscious Masking.

In 1998, I finally got a decent job with a prestigious employer for whom I’d always wanted to work. I didn’t mention my ASD because I told myself that it didn’t really affect me unduly beyond making me a little shy and awkward (though it did rather more than that, in truth), and I didn’t want to give any possible reason for the employer to reject me. Although the working environment was busy and frequently frenetic with lots of people bustling around, because of the way my career within the organisation progressed slowly and steadily from department to department I never really felt like I was drowning or that my autistic condition was holding me back. I even made a few friends there. And so, through various roles, I spent 15 years there without ever mentioning that I was on the spectrum because, well, I just didn’t need to.

After taking redundancy from that employer — a sadly necessary move that I was rather unwilling to commit to because, like a lot of people on the spectrum, I don’t like change and uncertainty — life somewhat returned to how it had been after university all those years before. Remember “I clearly recall thinking that I was uniquely and unquestionably an abject failure who had no idea what he was going to do with his life”? Well, I was back there again — the difference this time being that I was now in my early forties, an age when you’re supposed to have your life ‘sorted’. I didn’t really know anyone, there were some temporary jobs (where I found I couldn’t settle because suddenly the office environment I’d grown so familiar with at my old employer was new and unsettling: all excessive noise, incomprehensible buzzwords, endlessly bewildering meetings, unsettling bright lights and so so many people, argh). At that point I decided to turn the work I had always enjoyed doing into a freelance career based in my own environment where I could feel relatively safe and secure, and concentrate on it to the point that it became yet another obsession through which I gradually worked myself into the ground.

Then, in 2016, after a long, debilitating and worsening illness, my mother died. Even though she had never known about my ASD — and towards the end when I thought of confessing all to her I decided not to because I didn’t want to cause her undue anxiety while she was in such a fragile state— she had still always been my friend and someone whom I could chat with freely. It sounds awful to say it now in retrospect, but during the last couple of years of her life she was so weak and breathless that we frequently conducted our chats via lengthy iMessage conversations: me on my laptop or iPhone, her on her iPad. And that method of communication suited me perfectly.

My mother’s passing wasn’t exactly unexpected, and initially her death didn’t really appear to have had any great impact on me. I’ve learned that such numbness around bereavement isn’t so unusual for people on the spectrum.

Suddenly, however, although I’d done this previously to a very limited extent, it was at that point I chose to start making people aware that I had Asperger Syndrome, and that I’d actually been affected by it for the past twenty years or so. I mentioned it in a very unassuming way, just letting the information slip out without any grand announcements: “Can you pass the ketchup? Thanks. Oh, by the way, you might like to know…” I don’t know why. Was it a release? Maybe. Was it just a bout of overall confusion after the death of my mother, combined with an uncertainty about where my life was going in my forties? Much more likely. A few friends were told (mostly social media acquaintances of the kind I rarely, if ever, see face to face). My sister, with whom I’ve never been at all close since our childhood, learned of it when I told her shortly after our mother’s death. She was … well, even now I’m unsure of her reaction. Nonplussed would probably describe it best. During an autistic meltdown I suffered while enduring a particularly awkward and monosyllabic phone conversation with my estranged father, whom I haven’t seen for over 25 years, I revealed the news to him too. His reaction was similar, though he’d “read something in a book somewhere” and immediately wanted to know the names of any antidepressants I was taking. So that was less than helpful and undertanding, to say the least.

I wish I could say that I felt a burden suddenly being lifted after revealing my autism and thus no longer needing to mask the whole time. But I didn’t and I still don’t, not really. Because — like many people on the spectrum — I don’t have many close friends or confidants, I’m not really sure what they make of it, and what they make of me now. And I don’t have the nerve to ask. Are they thinking: “Oh, so that explains why he’s like that. It all makes sense now”? Do they fully understand what the condition means, or are they just waiting for me to make like Rain Man and perform amazing mathematical or date-related feats as if I’m just a party game for their entertainment? (I’m utterly crap at maths, incidentally).

What I do feel is: very tired. Exhausted. Weary of all that masking I went through. I know it’s pointless to look back, but I sometimes can’t help but wish that I’d spent the past twenty years telling people I was on the spectrum, right from the moment I got that official letter. That same day, I should have sat my mother down in her living-room and told her that I had some news. I wish the rest of my family had known too — well, those I was on speaking terms with at the time, which was rarely all of them. I wish I’d told the few friends I’ve made over the years, almost from the moment of being introduced to them. I wish I’d told my employers from the outset, in my very first nervous and stuttering interview, even on the application form. If I’d been more comfortable and stable in myself there, I can’t help but think that my career development during those 15 years — which rather stalled towards the end — might have progressed more successfully.

I was never going to be a crusader for the Autism Community — that’s just not my way, and to be honest I’ve never felt a particular connection with any community, either online or offline. I was never going to be an Autistic Advocate like, er, The Autistic Advocate — I barely have the nerve to speak for myself, let alone for other people with Autism. But I wish I’d been more fully myself, and possessed the necessary nerve to be myself from the outset, to admit who I am. I think my life might have turned out rather differently — maybe not substantially, but a little.

One thing I’ve heard from some of the few people I’ve known over the years, even from a former partner, is that I’m a difficult person to get to know and thus they’re never entirely sure what to make of me. One person, whose name I no longer recall, memorably called me a “strange fish”. I suspect I was so inured to living with my mask intact, bolted firmly in every corner — to the extent that I didn’t even have to think about it or decide each morning to put on that mask before I left the house — that it made me impermeable, made me cover up my feelings until (on a few rather frightening and utterly disastrous occasions) I just snapped, unable to cope with the world anymore, unable to accept how it wanted me to be and how it wanted me to behave. I’m sure I don’t need to completely spell out what those incidents involved.

My Fidget Cube is my new favourite way to avert Autistic Meltdowns

Now, in my late 40s, I find myself trying to build a new identity. An identity called Me. An identity where I am on the Autistic Spectrum and where, if I meet anyone new, they’re going to know about it. Not immediately, no, but eventually.

I’m not going to start shouting it from the rooftops or wearing an “I Am Autistic!” t-shirt, and I’m not about to explain it all in exhaustive detail. If people want to know more, I’ll give them the basics. I’ll tell them how it affects me as an individual — not how it affects and appears for everyone else because (a helpful tip for the media here) there is no single Typical Autistic Person. I’ll explain to them that I most likely won’t be looking them straight in the eye while I tell them these things, because the corner of the room over there that I’m diligently focusing on is really far more interesting, honestly. I’ll explain to them that I’ll likely talk about a particular arcane subject for ages until they’re probably bored beyond belief. I’ll explain to them that I would much rather just quietly sit with them in a calming environment, chatting about everything and nothing, rather than go somewhere noisy and bustling where all that’ll happen is I’ll experience a sensory overload leading to an Autistic Meltdown in which I’ll be holding my hands to my head and inwardly screaming that I want everything to just stop now, please. I’ll explain to them, however, that I’m not being rude or impolite by not engaging in inane small talk that’ll make me chew the insides of my mouth in exasperation. I’ll explain to them that no, sorry, I can’t be “normal”— whatever they class normal to be — but if they’re prepared to put up with that small inconvenience then they’ll find I can be a good, kind, genuine, warmhearted person.

Even if I am a bit of a strange fish at times.

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