Aspies are from Vulcan!

Who out there loves Star Trek?!

I love Star Trek. It was my “special interest” when I was at school. I think there must have been an aspect of the self-containedness that appealed to me: restricted to one ship, a military hierarchy (if in somewhat idealised form) with rankings to dictate the boundaries of relationships, and a limited number of people contributed to a social construct that – unlike most soaps and dramas – I could actually understand. Things evolved slowly, relationships unfolding in a wonderfully simple and idealistic fashion. Voyager was my favourite, with it’s almost entirely closed system: particularly good for consistency. (Also, Captain Janeway. Who doesn’t want to be her?) I don’t watch it so much any more, but there’s a lot that stayed with me.

One of the great things about Star Trek is its characters. They’re multicoloured. All of them are strong, in their own way; but it’s in the spectrum of their vulnerabilities that the real interest lies. There’s Tom Paris, with his chequered history and survivor guilt. There’s Harry Kim, just a little bit too young, idealistic and homesick: his naivety sits on the fence between invoking protectiveness or annoyance. The half-Klingon Torres fulfils what is in many ways an extension of Uhura’s role in the original series: a focus to challenge racial and cultural stereotyping, addressing closely and painfully the impacts of such divides.

And it doesn’t stop with race or gender. Dr “Bones” McCoy of the original series, grumpy but lovable; indignant, inflexible and abrasive; and yet somehow not weak. Seven of Nine, a grown up child, a mess of analytical genius and PTSD and contradictions. Tuvok. And the inevitable Mr Spock.

Comparing autistic people to Vulcans is something of a cliche: something you read on the internet in quirky, unrealistic pop news. Not something I ever expected to happen in real life. As it happens, it has – but that’s not really the point. It’s an analogy that, secretly, I quite like. Because it’s usually made by someone who knows nothing about Star Trek, and nothing about the very nuanced characters and characteristics of these fictional Vulcans. This is also roughly equivalent to their understanding of autism. They see the stereotypes, the surface behaviour – reliance on logic, the struggle to understand human social relationships – and they match. So they say “you remind me of Mr Spock”.

And inside, I laugh. Because I am, and I am not, like Mr Spock. Just like autistic people, there is more to Vulcans than first meets the eye.

Let’s take a look at some of the reasons autistic people might be compared to Vulcans:

  • Vulcans find human behaviour chaotic and unpredictable – “illogical”.
  • Vulcans have strong analytical skills, and place a high value on logic. (This is something seen particularly in autistic women, who often turn to logic to unpick complex social situations and problems.)
  • There is a tendency towards rigidity in rules and their enforcement.
  • Vulcans appear unemotional – but they can show both empathy and love. “I have been, and always shall be, your friend” (Spock, in The Wrath of Khan). Stilted, uncomfortable, painful to articulate – but it’s there.
  • They have hypersensitive hearing! (On any away mission, the Vulcan is always the first to sense approaching danger.)
  • Vulcans tend to be solitary and quiet. Rather than socialising, they spend a lot of time alone to meditate and recharge.
  • Some Vulcans understand analytically the importance of emotional communication to humans, but struggle to do it themselves.
  • Occasionally Vulcans struggle with outbursts of emotion.
  • They are all different! Mr Spock and Mr Tuvok, underneath all their logic, have very different histories and personalities.

Of course, there are differences between this fictional species and the reality of us as autistic humans. Emotions for Vulcans are a cultural taboo: one which they take pride within their species in learning to suppress. Autistic people in public may seem repressed or withdrawn – but in a safe environment, or among their own, can be emotionally expressive. There are references in Star Trek to a long distant past in which Vulcans could not control their emotions: an age of violence, chaos and fear. If not totally irrelevant, this may be intended as an analogy to autistic children learning to “control” meltdowns as they grow up. If so, it would be dangerously misleading. Autistic adults don’t “control” their meltdowns: they learn to avoid and manage the triggers leading to that level of sensory overload. But nonetheless, it’s easy to see how these two very different cores of being manage to generate almost identical surface behaviours.

So I laugh, secretly, because these people are both right and they are wrong – and it doesn’t matter. The underlying details of Vulcan and autistic people’s nature aren’t the same. But that’s not what these people see. They see behaviours that match. I see behaviours, accepted.

I laugh, secretly, because those people told me something they’ll never realise. They match my identity with a different species – something so odd it is not even human. But in that one thought, they show me how I can exist among others, as me. Star Trek paints a vivid picture of a society in which people like me are an intrinsic and valued part – not as some defective version of humans, but as Vulcans. Spock, Tuvok and many others are accepted by the people around them, who understand their differences, value their strengths, and learn to read the different ways they show their emotions and feelings. In the Star Trek universe, people who move like me can live full and complete lives, as themselves, without needing to change or conform.

A future world where I am not disabled: just different. Idealistic, maybe. But what a world to hope for.

Seeing myself

I’ve written about meetings before, and how they’re the stuff of nightmares. This wasn’t a meeting, per se. This was a briefing. This should have been safe.

We were talking about team cohesion. The nightmarish concept of team building dissected in detail – obliquely, not by name, but recognisable in full and terrifying form. But the everyday stuff got a mention too. How to encourage knowledge sharing, technical briefings; just talking to each other about what we’re doing, getting a feel for what’s going on in the department.

“I know”, says one smart guy, full of confidence and authority. We’ve been talking about people sharing their work in briefings, informally, chatting on stage or gathering the team around a plot. I can do this. I would enjoy this. “Let’s video the talks. We can save them on our internal website so people can share their knowledge”.

But no. No, this is not a thing. Chatting with my colleagues about a plot: every day, absolutely. But videoing; picturing; recording? That is something altogether more sinister. I almost bolted the room.

I know, you see, that I am wrong. My movements are clumsy, hands ceaselessly restless, legs pacing out of key. I have a crooked smile. My voice is too loud, too forceful. The pitch, often rising excitedly, is too low for the brightness and enthusiasm it means to convey – I’ve been told it’s intimidating. There is no music to the spoken tone, no phrasing to give the lines their depth of meaning. Speaking in words is a graceless act, stilted, all harsh lines and corners. Like a small child draws, with the pencil scrunched up in its fist, thick lines spreading from a blunted edge pushed too hard against the paper; and like that drawing, the finished product is artless, naive, painful to the ear and to the eye.

I exist each day knowing this about myself. I know how I look; how I sound; how awkward it must feel to be in my presence. Yet I hold my head high, having taught myself to believe that this does not matter. My talents are valuable, and they lie elsewhere. And this is completely true.

But that knowledge is fragile. The understanding is brittle. And seeing myself in image, speaking and moving in that way that does not fit, that does not flow – being so wrong – would shatter my confidence to the bone. To be recorded, this shattering of self-image branded onto physical media to be relived again and again and again, is merciless in its permanence. The humiliation forever and inescapable. I cannot bear to see myself.

It is strange to be faced, out of the blue, with the remembrance that normal life is not like this. That most competent adults are aware, confident and comfortable in themselves. This fear of self-awareness on a literal, physical level is not something that’s accepted in the professional world. My fear is unreasonable. It’s weakness. It’s unprofessional, and it will hold me back.

I do resent this. I resent that my professional life is governed by a system that demands conformity. It is not enough to be good – even sometimes to excel – at what I do. But I must look right. I must “be” right. I must smile, and move, and think, and feel, like everyone else. I must be open and willing share my inner self; but not as me: as some false, created inner self that looks like it’s supposed to. My work is not enough. I must have the courage and the confidence to show my “wrong” self to the world, to suffer judgment and humiliation, with only that tiny inner voice to remind me that the only person qualified to judge me is myself.

It’s hard, sometimes. Seeing myself.

Two years too long

I try not to let things get to me. I have a tendency towards strong emotional responses when faced with unfairness, injustice or blatant prejudice, regardless of whether it’s directed at me or others. I try to put that in a box. Unless I can take action to change the situation, I do my best to ignore realities that hurt me to feel. But still, every so often, something will set me on fire.

I saw this, from the NAS:

And it made me SCARY mad.

I’ll never forget the night I realised I was autistic. I was walking home from a concert I’d cried all the way through, with the friend that had kept quiet all that time. We walked three miles in the middle of the night because I said I couldn’t face the bus. I dropped a line about probably being “a little bit autistic”. And he said, “yeah”.

I got home and looked it up on the internet. Luckily I found the National Autistic Society, rather than anything more sinister. But still, it was about 2 weeks before I could really stop crying.

The concert was on a Friday. I spent half the night reading up on autism – seeing myself everywhere, my face reflected in the little things. I read about how to go about getting a diagnosis: what to tell the doctor and how to prepare. I made notes, volumes of notes, about how I fit the criteria. I wrote constantly. I cried, on and off. I slept in between.

There were people who scraped me up off the floor during that time. They could be on the phone, made sure that I ate. They came over when I needed them. Although I hadn’t even known myself before – I didn’t know how to be a friend – they were there for me. They were friends, good friends, even though I wasn’t. I didn’t deserve them, and I was so, so lucky I had them. They probably saved my life. But that’s not what this story is about.

I went to my GP the following Monday. I sat in the waiting room for an hour, holding everything in. Before I knew it didn’t matter if I rocked, it couldn’t hurt anyone, I held myself rigid. I clutched the printout I’d made: a bullet-pointed list under each criterion. I took it in with me, and burst into tears.

My GP was great. She took the printout to read. She didn’t let it faze her that I cried, that I was strangely calm and coherent while I cried. She took me seriously, and told me she didn’t know what the procedure was, but could she phone me. Then she phoned me that night after work, and said there was a form for referral. Since I knew myself best, would I like to fill it in and send it back to her? A couple of weeks later I got the letter from the NHS saying the waiting list was long, but I was on it. And things went quiet.

It was well over a year before I heard from them again. The diagnostic service was amazing. They treated me with compete dignity and lack of fuss, accommodated my anxieties as a matter of course, and gave me all the right information to feel comfortable. They knew what I needed without me even having to ask! But by the time I had an NHS diagnosis, bringing with it precious access to the local autism support group, it had been almost 18 months.

Two years is too long.

In the meantime, I’d been lucky. Incredibly, impossibly lucky. I was able to get funding for a private diagnosis. Within six months of everything falling apart, I had official recognition. I had documents that entitled me to support at work. I had access to some limited expertise. No longer stranded, with this glimmer of a safety net, I could begin to build from scratch for myself an identity that was real. Yet for those six months, I had nothing. I was nothing.

I kept my job. I kept my house and my car. My family supported me. The people around me, although they never knew it, kept me from suicide. I was given time and space to recover. I built a shell, a hollow of myself – and it somehow held. For six months. I would not have survived for two years.

Two years is too long.

My GP did everything right – more than right. She listened to me, read what I’d written, realised I knew what I was talking about, and made it easy for me. Not everyone has it that easy.

I have friends, now, seeking diagnoses. People I care about, stranded and struggling. You can’t hope to get a referral unless you’re struggling. One’s GP flat out says she can’t make a referral. Another can’t even get a face-to-face appointment with the GP: only a phone consultation. I couldn’t have had that conversation over the phone – how can they? Of course: they can’t. I walked into my GP surgery and had a referral within two weeks. They’ve been fighting these barriers for months. And that’s before the clock even starts.

Two years is too long.

This isn’t a political campaign from the NAS, in the sense that they’re supporting any one particular party, but it’s the first campaign that’s ever really hit me. If you’re in the UK: register to vote; then do. I’ll vote. It’s small. It’s all we can do.