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 the complex social situations and problems they’re expected to understand.)
  • 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 reflect.
  • 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.

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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.

Unashamed

April is coming, and my Facebook feed is full of articles. Autistic friends, begging their connections not to “light it up blue” this coming month. And this cover of a huge step forward in autism acceptance from BBC, welcoming Julia onto Sesame Street. A muppet with autism.

Julia isn’t “a muppet with autism”, though. Julia is autistic.

For the first time, today, I mind.

A little background. It’s been a turbulent couple of years. When I first crashed into the autistic community, bruised, alone and frightened, the “person-first” debate didn’t much interest me. Why would I care what people called me? I was still grappling with the monumental implications of this diagnosis for my life, my future, my prospects for growth and happiness in this world. What did it matter whether I “had Aspergers” or “was autistic”? The earth-shattering, devastating reality was the same. Words, gone with a careless breath, were less than wind.

But now. Now I am more than I was. Now I know what autism means, for me. Now I know that my autism does not limit what I can achieve – only influences the methods by which I can progress. That it is not the characteristics of autism itself that stand between me and what I want from my life. What stands in my way, as an autistic person, is so often the attitudes of other people. Always intimidating, and sometimes insurmountable, I know now that these barriers are not of my own making. I have weaknesses, and I have strengths; not because I am autistic. But because I am human.

Autism describes me. Autism is a part of me. Autism is my strength and my sensitivity, my empathy, and the strange inability to express those feelings. Autism is the laughter and the tears that bubble up inside me when I need to show my love. Autism is why I spin and why I sing and why it gives me joy. Why would I want to disown that? Why would I want to separate that from me?

I am autistic. Unashamed.

Pacing

On Friday I shut down at work. When my boss saw me, he asked how bad it was, and if I needed to go home. I did need to go home. So – somehow! – I said yes.

It was a very strange moment. I’ve spent the past year or two trying to set up safety mechanisms to cater for happenings just like this. Talking about accommodations. Making creative use of flexitime. Skirting around the issue of “bad days”, delicately, never quite committing myself to describing what it looks like when I am incapable, completely, of existing in company. They’ve seen the irritability, the frustration when I can’t find words, but they’ve never seen the end point. How I can stare at a plate of food and not make the connection to actually eat. When I just switch off and fade out, staring into space. How my system shuts off everything, refusing to process what I see or hear without conscious effort. How everything is an instinctive response. Decision-making is impossible. Something I can no longer force.

Until recently, I would have said no. I would have felt guilty, berated myself for what I am and the decisions that led to this point. I would have sat at my desk all afternoon, struggling through the simplest of tasks. That was the instinct: to hide. A deeply held belief that my identity is shameful, that I do not deserve supports, even those I invested and risked so much to build. But this time, I said yes.

I’ve changed.

Coming out of those places, of shutdowns and meltdowns and overloads, I can’t help but overthink. It’s what drives me to write. Although I am rarely asked, I want to find the words, to paint a picture for people who don’t share these experiences. I want them to know what it’s like for me, why I disappear from the world. I wanted to explore, for myself, why I no longer felt guilty for the sorts of mistakes that led to this shutdown.

The thing is, this week was challenging. A lot of non-routine things were going to happen. The plan was complex in places; the schedule was busy. No red flags jumped out at me, but several – if I had been looking – were distinctly orange. And I was tired going in. Perhaps I should have seen it.

Let’s take a look at those flags. A long evening straight from work: 2 events in a row, buffered by dinner in an unfamiliar pub. Cycling out in unexpected, driving rain. A 9 o’clock meeting the next day. Two. Doable, I thought. Then a nagging headache all morning, artificial meeting room lights too bright to countenance; the sweet, soft relief of Anadin at lunch time, and the feel of my body relaxing, losing tension in quantities I hadn’t recognised I’d carried. Every warning light suddenly flashing. Looking at my schedule for the next morning. Another 9am. And a 10, and an 11. And somewhere to be at 12. Maybe I should reschedule the 10 o’clock. But I had the evening free. I’d be OK.

And that’s where I failed. Because after several weeks of things going right, I’d forgotten my limits. I’d forgotten how too many things, even simple things, can make me fall over so completely. I’d forgotten that one evening to myself, given where I was, wouldn’t be enough to set me up for the next day.

Those orange flags weren’t red. For most people, they probably wouldn’t even be orange. Three meetings in a morning probably wouldn’t even raise a flag in most people’s eyes. But for me, that’s a challenge. And in combination with too many other challenges, that’s a red flag. The guilt isn’t that I fell down. The guilt is that I didn’t act to avert things when I had the chance. The guilt is that I got over-confident. It was going to be OK. I’d been doing fine. But I’m still autistic.

For most people, there is slack in the schedule. A bad day is recoverable. But for me, a week at work can be like running a race.

Picture a distance: the furthest you can run. (Or walk. Or, if you can’t walk, I expect you won’t need this analogy to understand.) Picture yourself at the start of the distance, taking a breath. You’re prepared. You know your pace. You know what you can take. You’ll stride out long, slow, easy. If there’s a hill, you’ll slow down. But you’ll keep going.

It takes some mental effort, pacing that race. You want to finish in a good time. But at the same time, you know exactly how hard you can push. You know if you go too hard, you’ll run out too early. You’ve done it in training, when you were still exploring your limits. You’ve felt that burning in your legs, the weakness, the whole-body exhaustion, wanting nothing more than to drop and curl up on the pavement. You’ve walked home in your running kit, shivering as the sweat cools off your back. Avoiding eye contact with anyone you pass. Wondering what they’re thinking of you. But today is the day you’ve been waiting for. And you’re going to get it right.

Imagine each week starting like that race. You know you can do the distance. You feel confident: in control. But you have to be prepared. You have to carb-load. You have to get enough sleep the night before. And if the route changes at the last minute – a diversion, a longer or steeper road – there’s always the risk that you’ll flake out before the end.

Anyone can screw up a race. You feel bad. It’s one stand-out event, you’ve prepared forever, and you let yourself down. It’s your own fault.

But there’s no need for guilt. Because you pushed yourself. You tried. You misjudged. There was shame; but there was also understanding. It taught you something. You’ll try again next time.

Every time I fall, I feel guilt. But every time I fail, I remind myself that everybody fails. Everybody makes mistakes. I’ll try again next week. And I’ll make it right.

Fat shaming, gender roles, and becoming a woman with autism

Those of you who were diagnosed autistic as adults will probably understand when I say it takes a while to grow into the identity. There’s the tearing down, sudden or incremental, of the person you’ve built on lies of neurotypicality; the grief; the acceptance; and the beginnings of real life.

The process isn’t steady: it comes in fits and starts. Against a smooth background of progress, I encounter every so often those single jolts of realisation, “eureka” moments that seem like a physical leap forward from where I’ve been.

I’ve known for a long time that the images we see and the views we read in the media, online and on television, can have a strong influence on our unconscious biases. The constant bombardment of idealised female physiologies, the skewed representation of women towards youth and a specific body type, twists the self image of girls from early in childhood: that if they do not fit this trope, they are a failure. There are further, deeper issues around “thinspo” and “fitspo”: online media specifically designed to encourage disordered and self-damaging behaviours around eating and exercise. These issues are well covered in the more progressive online literature, as well as, ironically, by much of the same media that perpetuates the problem. But something I read recently cast this type of media message, for me, into a different frame.

The piece from Beauty Redefined, which very eloquently and sensitively explores the benefits of a “media fast”, doesn’t strictly cover anything I didn’t know. But it sets out the problem in a slightly different light. Instead of just telling me again that these messages towards women are wrong and harmful, it suggests tools I can use to choose which media messages are safe to consume. I was intrigued: it made me think. And considering those tools for a while brought home to me a new understanding on why being an autistic woman, in this world, can feel so dreadfully wrong.

The narrow, idealised pictures we see of women in the media aren’t just physical: they’re personal. The few roles available for women in books and films paint them as social creatures, valued by society for their prettiness, but also for their “traditional values” of kindness and sensitivity. They have many friends. They organise parties. They answer the telephone late at night and babysit their siblings’ children. When a friend is in trouble, they always know the right thing to say. The role of this comfortingly conventional woman is defined entirely by her interactions, not with the world, but with people: who she knows; who she supports; who she loves.

This picture of women painted by society as we know it is distorted enough from a neurotypical perspective. From an autistic one, it is almost unendurable. In my darkest moments it was to this impossible stereotype that I compared myself, doomed to failure and shame. To be autistic was to diverge from every part of the societally accepted female identity. A lifetime of niggling doubts had coalesced overnight into something monstrous; and I suddenly saw myself marked, judged all my life by something that everyone but me could see. My lack of social skills had me constantly labelled as aggressive; insensitive; uncaring; I’d learned not to listen, to try not to be hurt by what I could not understand. But now I knew of those people accusing me: that they were right, and I was so, so wrong. It didn’t matter that I didn’t feel or mean those things. It mattered how they saw me. How I looked.

When first I realised I had autism I forced myself to read on and on, no matter how much it hurt. I read about how I was different, how I was less, in order to learn to be more. Endless reams of well-meaning advice for the parents of young boys; myself described in such condescending terms, a million miles from where I had learned I should be. And it wasn’t just the popular media, by any means. There was autism psychology, emotional maturity and developmental trajectories: bald statements in print, coldly enumerating the skills I lacked at each level of my childhood and adolescence. The tone of pity – or not even pity, but pragmatic acceptance that people like me just need to be cared for and tolerated. Like we couldn’t ever have value as autonomous adults, or command respect as our own selves.

When I read about autism, even now, it makes me want to change. Sometimes that change is about learning and growing, but mostly it’s not. I don’t feel encouraged by what I read to reach out, to connect with others and learn new social skills. I feel obligated not to inflict my naivity on the world. I don’t feel eager to develop my appreciation of the wider picture: I feel ashamed of the narrowness of my focus. What I see written about us entreats a primarily non-autistic audience to tolerate and accept our limitations, but never to encourage, accommodate or seek out our strengths. It paints autism as an embarassment. It tells other people about me, that I am less. It tells me I’m not good enough the way I am.

But back then, when I was at my most vulnerable, I had to read; I had to learn to be a better person. If I didn’t read and absorb and accommodate the world’s expectations, it meant I was lazy. And worse than that, it meant I didn’t care about the people around me. I had to protect them from the horrible impacts of autism. From me.

The parallels between this thinking about personalities and the distorted body images encouraged by fitspo and thinspo are closer than a breath. What’s written about autism is meant for non-autistic people – as if we didn’t exist – with no regard to the damage it can do. Like thinspo, coverage of autism is all about looking a certain way for other people. It’s never about being and feeling a certain way, interacting with people authentically, as myself. Even the labels, conjoured by disordered thinking from these caricatures of reality, are aligned. “Lazy”, “selfish”, “undisciplined”? These are all traits that the body-shaming media silently attribute to “fat” people – and particularly fat women – by implication, for not trying hard enough not to be who they are. “I just feel sorry for them – think of [ how much healthier they’d be / how many more friends they’d have ] if they [ weren’t so fat / acted more normal ]?” Wrapped up in the guise of caring, people who just want you to be healthy, to be happy. Keeping your failures hidden from the world. Helping you to change who you are.

I don’t need to change who I am to be happy. I don’t need to become invisible to be loved.

I do need some support and accommodations at work. I need guidance to navigate office politics and clarification of what’s expected of me. I have a lot to learn about many things, for which I will need time and patience and acceptance, just like anyone else. But I don’t need the guilt. I don’t need to feel bad every time I ask a question, that I haven’t “developed the skills” to be completely autonomous. I don’t need to force myself through social interactions that drain the life out of me and give nothing in return. I don’t need to ration the supports I request for fear of being seen as lazy or undisciplined. I help other people with the things I’m good at, and they help me. I am not worthless because I think and socialise differently.

I’ve grown as a person since my diagnosis. I’m becoming more comfortable with this identity. But sometimes I still need reminding of the benefits of a media fast, to clear my mind and remind me who I am.

Serenity

“God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.”
(Reinhold Niebuhr)

In the small bedroom I slept in when visiting my grandmother’s house, at the foot of the bed, was a wooden panel inscribed with these words. Simply carved, decorated only with the raised image of a pair of hands, clasped in prayer. The simultaneous simplicity and depth of those few, short words has never failed to astound me.

I’ve been thinking a lot lately about what it means to be autistic, and to be me. Which parts of me are immutable, and cannot change? Which parts of me are not? And even if I could change those parts of myself, would I want to?

There are things about me that make other people uncomfortable. The way I speak. The tone of my voice. The way I use my hands. These things are different, alien, and open to misinterpretation, but they are not in themselves harmful.

The language of autism is not something I would ever wish to change. It is beautiful, emotional and expressive. It does not tend naturally to hide or manipulate. Rather than change myself, where I can, I seek to ensure that those I interact with regularly have the correct understanding of these mannerisms. Then I can express myself safely, comfortably and freely in my own language.

There are other parts of myself that I would seek to change. The defensive barrier that rises in response to constant anxiety. The ever-deepening need to protect myself from criticism, moving gradually from legitimate dismissal of unreasoned negativity, to refusal to accept any form of feedback that challenges my fragile self-esteem. The relentless erosion of ability to take risks, learn or grow for fear of destroying the tiny, brittle, frightened thing that I have somehow become.

In changing this part of myself – this figment, whittled down by fear – I need a strength that it does not have. But it is not the only part of me. My autism is my strength. I need to stand up for myself, to challenge the inevitable pressure to conform to a pattern that is not me. My autism can do this, and will not be ashamed. The power to fix myself is already inside me.

Looking back at those words tells me I am not broken. I know myself as I am now: accepting the parts of me that are mine and beautiful, and looking to change what I can. Things will not always be this way – couched in this quiet place where everything is clear. But for today, I am serene. I am courageous. And perhaps, if only in this, I am wise.