What if they knew?

I’m not shy about my autism these days. I tell people quite openly. It’s obvious they have absolutely no idea what it means. And sometimes I wonder, what would they say if they knew? What would they do?

I changed jobs a little while ago, and rather than arranging training or making things overly formal, I tried a new approach.  I disclosed, carefully, where and when I needed.  I told my new boss, in my interview, and mentioned it later in passing.  I kept things calm and low key.  No big deal.  I told someone arranging meetings, when I was asking for breaks, and not so much in a day.  And one day I told a trusted colleague, when I was breaking down and didn’t know what to do.  He said he knew.  He said he didn’t know how I did it.

Oddly enough, that calmed me down.  Not having to say anything, to make that disclosure when you’re so far gone you can barely talk.  It was just there, something in the background, comfortable between us.  And just that quiet acknowledgment, “I don’t know how you do it”, of the effort I make every day.  This was the whole point of disclosing more widely.  Wasn’t it?

It’s great to have it out there.  But sometimes I wonder: what if they knew.  There was a day last week, with meetings – many meetings.  They don’t know how stretched I knew I would be with the minimal schedule.  The didn’t see me swallow when I got the email: “we’re going to discuss some upcoming work at the end of this meeting – anyone with an interest, just stay after”.  They didn’t see me hold back tears when another half hour popped up, unexpected, right before the busy mid-day schedule.  It couldn’t be rearranged.  I had to go.

They saw me ask questions, in the discussion from 10:15 to 10:45.  They saw me talk animatedly about my work in the slot from 11:00-12:00.  They saw me engage with the upcoming project discussion from 12:00-12:30.  They saw me stay afterwards to dot the i’s and cross the t’s with a colleague I rarely see.  They saw me again at 14:00, energetic and opinionated, quizzical and curious.  But with an edge of aggression, a steamroller that’s out of control.  A frantic performance, continued far too long.  Cracks beginning to show.

They didn’t see me at 12:45.  Walk into the coffee shop like a zombie.  Wave at a friend in the corner.  They didn’t see me struggle to ask to join her, random, disjointed words falling out of me, mixed in with a sort of grotesque functional sign language of pointing at her, me, chair, until she understood and I sat down.  Didn’t talk.  Waited for speech to come back.

They didn’t see me at 13:15.  When my friend got up and asked if I wanted to join them for a walk.  When I knew it would do me good, but my body and mind cried out for me to stay where I was, and just stare.  Stare into space while the world continued to spin around me, without me.  Just step off for a while.

They didn’t see what was in my head when I smiled and gestured, engaged and questioned.  When the mask cracked, when I snapped at someone, only for a moment, they quietly corrected me – they didn’t see how close I was to breaking.  They didn’t see 15:15, a shattered haze.  The end of the day, walking home, so tired every step seemed an age.  And the next day, paying back the energy I borrowed.  They don’t see the tiredness, the incoherence, the inability to cope, with anything.  They don’t see me crying like a child because a child is how I feel, and it’s all that I can do.

My boss says he knows what overload looks like, after I’d mentioned it: that he’d seen it in me.  It made me feel safer than I’ve ever felt at work before, to know that he recognised and acted on that, without being told.  But I wonder if he really knows, what it’s like, what it means?

I wonder what would happen if they knew?

Anything to declare?

I’m thinking about applying for a new job. It’s technically a sideways move in my organisation, but it comes with opportunities to learn new skills, meet new people and work in new ways. I’m excited by the prospect, and I’m certainly ready for a change! (There: when did you last hear an Aspie say that?!)

But new opportunities come with new challenges. And job applications present their own, special problems. Right now, when I should be studying the work of my (potential!) new team, presenting my strengths in writing in the best possible light, and preparing for the likelihood of an interview, there’s that inevitable, distracting question dancing naked at the forefront of my mind.

Should I declare my disability?

Job applications, when you are autistic, are a bit of a minefield. First of all, they’re pretty much impossible to understand. Your average job description and application instructions are a mishmash of imprecision and context-dependent details the likes of which a schoolchild would quite possibly be failed for; and the system is unforgiving towards mistakes or misunderstandings. Filling in an application form or submitting a CV and cover letter then becomes an act of almost pure faith, and not without fear. But necessity dictates: and so straight out of university, I applied to dozens of jobs, and was interviewed for almost every one of them. On paper, I had excelled at every level. But at interview, I failed, repeatedly, and increasingly painfully, and I never could understand why. Now I know. It’s because I’m different. It’s because I’m naive. It’s because I intuitively answer the question as asked rather than the question meant. It’s because I look strange and nervous and I don’t make eye contact. It’s because people aren’t comfortable around me.

But now I know more than that. Autism isn’t just about interpersonal skills. I understand where lack of executive function can hurt me, placing me under unbearable stress and distress dealing with sometimes the simplest of tasks. I see that my “excellent” organisational skills have always been a function of careful control and painstaking self-discipline in every aspect of my life, to keep on top of the incomprehensible jumble of activities essential to independent adulthood. I read “essential” and “desirable” criteria and things jump out at me, warning flags that I’ve always noticed but learned to ignore, because there are simply no jobs that exist without them. Now I know what those flags mean, and exactly how I may fall short. I also know how to do a good job, given supports for those things. It’s certainly better to know. But that doesn’t make it easy.

So I sit here writing my application, and thinking. I haven’t been underperforming at work recently – but I haven’t been overperforming either. I know how much the issues of the past two years – an autism diagnosis, the journey that goes with that, and the “interpersonal problems” in my current team – have affected my output, and that they all resulted directly from my being autistic. What might my application look like if none of that had happened? How does it look now? For a hiring manager, would that make a difference? Enough that I won’t make the cut?

There’s a box on the application form I can tick to say I’m disabled, which will guarantee me an interview. Should I tick it? If I tick it and I don’t “need” it, maybe they’ll think I’m abusing the system, just trying to get ahead. But if I don’t tick it and I do…

Of course, an application form is just the beginning. What if I get an interview? I’ve done a lot of reading about how to make effective applications and prepare for interviews (particularly at Ask a Manager, which is honestly brilliant and has taught me so much!). I’ve thought about how to describe myself, how I work and how that might fit in well with the culture of the team. I’ve couched my differences in terms of strengths and weaknesses. But where does the line fall, between a “weakness” and disability? Should I mention my autism at all?

What if they ask about my “greatest weaknesses”, or bring up something I can’t do? I mean, there are things I can do, but not without certain supports. An employer of course is legally required to make reasonable adjustments, but when I’m trying to stand out against other candidates, how can I safely draw attention to an obvious “con” of employing me against a non-disabled person? To say that I am autistic, and to talk about how I would approach those tasks and what supports would need to be in place for me to achieve them, seems to me the best line to take. And I have practised in conversation mentioning my autism off-hand, as “business as usual”, without making a big deal of it. It’s just part of who I am. But there is always the fear that that’s not what the interviewers will see. I’ll be weighed in the balance, as it were, and found wanting.

But then, of course, there’s how to tackle the “appearance” of autism. The nervousness and inconsistent eye contact. The bits that my interviewers have so often read as “red flags”, although they couldn’t necessarily articulate why. I’ll do my best to play “normal” on the day, but there’s always the chance of something unexpected throwing off my plans. So on the one hand there’s danger in explicitly mentioning my disability. But on the other, can I realistically hide it? And if I did hide it, and then (heaven help me!) actually succeeded in getting an offer, what would my new manager be thinking if I brought such a crucial aspect of my personality and working style so “late” to the conversation? What would that do to the mutual trust so badly needed for the relationship to function?

I don’t think I will tick the box on the form. I can demonstrate to the essential criteria, enough that I ought to make the interview stage. Hopefully by then I will have decided. Do I have anything to declare?

Cycles of escalation

Every month, every year, I kid myself I’ve grown out of this. Every time, it comes back. Maybe less frequent, but no less intense.

It starts with a Morning. One of Those Mornings. You’ve slept through the night without waking – it might be the first time in months. A minor miracle! You should feel great. What you feel is awful.

But you’re up. You lose track of time in the shower. Coffee helps. A little.

Work through the day. Run at lunchtime. Drag your feet. Heavy. A little ball of something forms in your gut, unnoticed. An afternoon where everything resists.

Another morning. Another walk. Days pass. Those walks to work, they’re surreal: like flying; cased in a little bubble that skims the surface of the world but never quite to touch. There’s no contact with reality.

I don’t know what is important in this story. If I knew, I could stop it happening.

Too many people. Too many meetings. Tiny frustrations, building one after another after another with never the time to resolve. My mind, buzzing, overwhelmed. Angry. It feels like anger. And it’s clouding me, I can’t figure out the solutions. The moment I scream at a colleague and his eyebrows – his eyebrows, they must have hit the ceiling! – but it wasn’t that. It’s the bit where he says to the guy I’m sitting with: “help her”. And I’m sluggishly realising this is crazy, I’m acting crazy. So I make myself calm. I rein it in. If I can do that, it’s not real. It’s not a meltdown. I’m just undisciplined. I’m just emotional.

God help me I got through that day. And the next. I didn’t melt down. Right up until the minute I’m in my bosses office and I just randomly start crying. The minute I take him all the things that I know are tiny but they’re killing me and he has the answers. The minute I realise how far I’ve been bogged down in this mess of nothings and let it build up and up until my mind thinks I’m drowning, and it’s barely even real. It’s not even like I didn’t know – I knew. Intellectually, I knew. I just couldn’t defuse it emotionally. And now I’m crying at work all over again, all over, and the SHAME.

It’s the shame. Home now, looking back, I know it’s not OK to be that emotional – oh I do know. I know in the moment, but I can’t stop it. I have to be a grown up. I have to have constructive ways of using my frustration, diffusing my rage. It mustn’t come out sideways, the ranting or the tears, the exhaustion or frustration or relief – even the shame should be mine alone, but I can’t, I can’t hide it. However hard I’m trying to gain respect, to behave in a way that inspires trust, to be reliable, approachable, dependable – it doesn’t matter if they don’t know the next time I’m going to fall apart in front of them. It’s not someone you want to be working with. I’m just a child in an adult’s body. They can see it too.

Taking up space – more musings on meetings

I wanted to start this blog post with a link, but I can’t, because there are just too many of them. So I’ll start in my own voice and leave you to Google the rest.

The reason I wanted the link is because I’m starting from a concept that I’d heard before today only once, uniquely voiced. It’s around the issue of taking up space. I can’t remember where I read it and I wish I could, because I would love to have shared that post. But as I found out when searching for that link, this is a pretty well established thing. The idea that a certain type of person – that strangely indefinable “normal” person – has the implicit right to take up space. They don’t even need to ask. They just know.

As a person who is definitely not “normal”, I don’t honestly know what this person looks like. I know they exist – I have seen them and heard them and felt their impacts in the world – but in many cases my experience is not of individuals but of the faceless roar of “public opinion”, a surge of formless consensus that flows like the oncoming tide and cannot be pinned down. Who are these people, so many people, blessed with the implicit right to exist and the privilege not to know it? Probably, they are neurotypical. Probably, they are male. Possibly – at least if living in the “Western World” – they are white. And almost certainly, they are not disabled.

That’s not exactly what I’m here to write about, but I think it’s where to start. It seems to fit.

As a not-normal person, I have not the right to take up space. I can know this, although I cannot define “normal”. Like many in minority groups, I have learned the need to ask, rather than to expect any given space to suit my needs. For most of my life, I didn’t even know that I could ask. Often, even now, I am astounded by the number of options available to me that I’d assumed were simply “not allowed”. It’s simultaneously frustrating and liberating. To know that I can ask – and thus to be forced to take responsibility, constantly, for things that so many others can take as read.

But I digress. It’s not actually space that I wanted to talk about today. It’s time.

I have a lot of respect for people’s time, particularly at work. Perhaps it’s because of the difficulties I have with executive function and time management that I hate to interrupt my colleagues. I set high standards for the level of effort and time I should invest in tackling a problem before enlisting another’s aid, because I know how much those tiny tasks can cost. And in this way I make myself small. As if I have no right to take up time.

I believe my learned understanding that I don’t have a right to take up space translated into trying to minimise the amount of others’ time I “wasted”, by strictly limiting the amount of time I inflicted my presence upon them. I’m only just learning how many ways in which that is wrong! Not only the excessive quantities of my own time I’ve spent over the years struggling with problems that could have been solved in minutes, but in a wider strategic context: of ever getting any useful work done at all.

Which is where meetings come in.

I don’t like meetings. They are confusing, difficult to navigate, and can even be dangerous. But surprisingly, they do have their uses.

Traditionally, in the spirit of taking up as little space-time as possible, I’ve diligently avoided extended workplace face time. I’ve limited meetings to trying to communicate necessary information only, being focused and concise in my interactions to the point of extreme. I’ve felt fear at the lack of an agenda and struggled with the wasted hours spent repeating in circles what’s been discussed and decided innumerable times, and it seems to me will go on forever being discussed, never reaching a logical conclusion. And yet, eventually, it does. Which is the point I’ve been missing.

By restricting myself in this way, holding back from encroaching onto this precious sphere of time, I’ve lost out on some vital moments I could have learned from. I’m starting to realise that this slow, incremental progress is what makes things happen. Decisions aren’t made on the basis of evidence, considered clearly and openly and presented without guile. Decisions are made in the gut, by the inch. Innovative intentions to action are aired early, months before they are expected to take fruit. Results are drip-fed, subtly, constantly; like water carving a path through rock they gradually make a place for themselves in the shared consensus. By the time the final report is complete, the decision has already been made.

I’ve learned that I have to be much slower, less “efficient” and more expansive. I have to introduce people to an idea early on, and keep plugging it so that it stays in their mind. Practically speaking, this means arranging lots of meetings, and wasting a lot of time. But it’s time that others don’t seem to see as wasted. It’s the way we get things done.

I’m also finding out how much I can learn from what seems at first like a very inefficient use of company time. Counterintuitively, as long as a meeting has a goal, it doesn’t matter if the event becomes unfocused or the conversation strays. When arranging meetings myself I’ve found it’s a good idea to book a long slot for a small goal, as sometimes we want to discuss details or get off track. The extra time, instead of frustrating people, tends to ignite our imaginations – with less time pressure and the freedom to explore, we cover more ground. For science meetings, now, I always book a room for longer than we’ll need. Because it won’t be a waste when we use it.

Reflecting back on my “meetings” series a year ago: I’m learning. While I still struggle in meetings organised by other people, having used them myself to get things done I can understand a bit better now how they are supposed to work. Things don’t seem so hopeless as they did back then. As long as I’m looking after myself properly and have some resilience, I can adapt to make these traditionally NT-friendly spaces work for me. Which I could never have learned until I realised I had the right to exist. To take up space, and time.

Almost empathy

I had a conversation with someone a little while ago which got quite involved. We were discussing some very deep feelings about ourselves and each other; we’d covered some difficult ground and were getting pretty emotional. And then out of the blue, apparently I showed something that was “almost empathy”.

It’s been years since I bit someone’s head off like that in public. I’ve got so used to keeping my responses under wraps. But it happened.

I’m not usually so jumpy over precise choice of words – at least not in reciprocal conversation. Having my own issues with finding the right words in the moment, I don’t tend to attach significance to this sort of thing. But the word itself and the way it came out – it wasn’t even patronising. It was encouraging, even approving. But spoken as if it were obvious to everyone present just how big a deal it would be for someone like me to be showing empathy.

Actually, of course, it’s impossible for autistic people to show real empathy*. So it was only “almost empathy”.

Empathy is something that comes up a lot in the autism literature, good and bad. It’s not as all-pervasive as it has been in the past, and many organisations and individuals are now actively refuting the misconception that “lack of empathy” is an autistic trait. But it’s still out there. And it bites.

In many ways, I would say I’m more practised than most at putting myself into another’s shoes. I feel deeply what others feel. I can’t always respond at the same time as they’re talking to me, while I’m processing their words – but that’s a multitasking thing. Often I miss the opportunity to express my response in a “socially acceptable” way; and of course there is only that one brief chance, swiftly evolving into the dangerous territory of dwelling on the subject. This, of course, makes everyone feel awkward – and ironically, will probably get me accused of insensitivity for precisely that reason! When timing is important, should you make the expression late and risk further distress to the recipient, or let it pass?

As a rule, I don’t express sympathy or empathy in group settings. It seems to me the considerate thing is to respect the feelings of the distressed person, so withholding a response that might cause further discomfort seems natural. Even one-on-one I rarely risk responding outside the few people I know won’t be uncomfortable with my delayed processing speed. There’s the fear of not being able to communicate my feelings appropriately, stepping over some invisible line to trespass onto deeper, more personal terrain. But of course, never to be seen expressing empathy can lead more confident individuals to believe I do not feel. They cannot read or respond to me any better than I can read or respond to them. Yet their ability to feel, to take perspective and to empathise, is never called into question.

You may not see it. You may not feel it. But there is nothing “almost” about my empathy.

* Sarcasm implied

Finding my balance

My balance has always been terrible. I remember PE classes at school, when I was very small: those wooden benches they’d stand up for you to walk – or for the confident, run – along the top. When we got older sometimes they’d turn them upside down, so the narrow beam was at the top. Nobody ran then. I was the kid who tiptoed and wobbled, afraid of falling even from the broader topside. I couldn’t balance on the beams in play parks. I could fall off anything.

I don’t know why this is. I’ve read recently about the “seven senses” model, which might go some way to explaining it. The idea that in addition to the five senses – sight, sound, taste, touch and smell – there are another two: balance and proprioception. Since Aspies are known to experience differences in any or all of the five popularly-recognised senses, it stands to reason that the others might also pose some problems.

Proprioception is one I find really interesting. As I understand it, this describes an unconscious awareness (and presumably control) of where your limbs and body are currently located, in relation to themselves and to other objects around them. I say “as I understand it”, because I don’t fully recognise this concept as a thing. My limbs don’t place themselves unconsciously at rest, and I certainly don’t have any automatic awareness of where they are! Knowledge of where I am in relation to other objects is gained in a deliberate and conscious way – and when I’m not able to focus, such as when I’m very tired or have just toppled myself reluctantly out of bed in the morning, walking into walls or letting fragile items of crockery slip out of my hands are pretty everyday occurences. Clumsiness is a fact of life.

I can see how the senses of balance and proprioception could be quite intricately linked. Deficits in proprioception (as I’ve described it here) could certainly lead to problems in the balance area. The state of balance is a delicate one, attained only by precise placement of body and limbs in the posture most appropriate to the environment. In motion, balance is transient – the body flowing through a sequence of balanced or accurately unbalanced states to achieve the correct form of movement. If proprioception is impaired, then balance will not be automatically achieved. It becomes instead a conscious and deliberate act, requiring painstaking mental effort to maintain.

I’m pretty fit, but when I walk down a hill on uneven ground, I must be very slow. I have to look ahead, see the next stable foot placement, and make a conscious movement to achieve it. My legs don’t flow automatically into positions that will maintain a stable balance, and they won’t catch me reliably if I go wrong. It’s exhausting! Mountains are more tiring going down than going up!

There are both mental and physical aspects to balance. I suspect that the root of autistic issues with balance are mental, but the problems there have certainly interfered with me developing the physical ability to balance when consciously trying. (I don’t know whether this links into any of the observations about autistic people having “poor muscle tone”. Again, I could see how that might link with balance and proprioception issues, but that’s possibly over-extending the point.) The muscle tone and “memory” are developed through repeated activity – and if people without the mental issues are practising unconsciously throughout their lives, then those of us who need to focus consciously to achieve physical “flow” must necessarily fall behind.

On the flip side, small achievements here for me can feel like mountains conquered. It’s been a couple of years since I started attending semi-regularly a “stretching and balance” class at my gym after work. It took me SO long to get started. At first I was toppling within seconds, unable to hold my posture even with one foot only inches off the ground. But I persevered. And now I can hold the “tree” position, on a good day, for duration of the exercise.

I’m getting stronger. Intellectually, of course I see the numbers going up on the weights machines I started working with in January. But it’s a whole different thing when a whole body strength exercise that you simply couldn’t do before suddenly becomes possible. It makes the progress real.

Last weekend I met up with some university friends. Of the many things we visited, there was one with a jungle playground, surrounded by wooden balance beams just begging to be climbed. I waited until everyone was otherwise occupied before I dared to try. And I walked across them all. Eight inches wide and less than a foot off the ground, but I managed it without a wobble. I found my balance!

A sense of balance could be mental, or it could be physical. Most likely it’s a bit of both. I don’t really care. It feels good 🙂

Boundaries and buffer zones

Boundaries are difficult for autistic people. There’s a lot to process. First, you have to know what your body really needs – you have to interpret the signals. Then, you need to translate that into the physical reality of a solution. Although Aspies don’t necessarily lack imagination, deficits in “social imagination” – which I understand to mean some magical crystalisation in your brain of real potential situations and solutions pertaining to your actual physical and social environment – is one of the classic “triad of impairments” characterising Asperger syndrome. Ergo, you may struggle to work out what boundaries to set. And finally, of course, you have to communicate your boundaries to other people.

The act of setting and enforcing boundaries is covered fairly broadly over different areas of the “blogosphere”. Its relevance spans a vast array of contexts: anxiety (including the non-clinical sense), mental health, disability, women’s rights and the LBGTQA arena, and probably many more. The initial focus of such literature, particularly in relation to mental health, is often around giving oneself permission even to consider the subversive act of setting boundaries. (Subversive because, in a culture which prizes conformity, deviating visibly from the “normal” profile of assumed needs and preferences can be an uncomfortable act.) This is a helpful starting point for autistics as well, as it allows us to recognise explicitly the fact that we are individuals and that our feelings and selves, however different, deserve for that no less protection and respect. However, something that sometimes seems lacking in the literature for those literally-minded of us is: where exactly should those boundaries be set?

Identifying what you need and where your “red line” sits is part of this. But there’s a little more to it than that. One of the issues I had when first setting boundaries was that I tended to tell people exactly where they were. And in actual fact, you really don’t want to do that. If you tell someone where your boundary is, and they are in fact a boundary-crossing fucktard, you will get hurt. You don’t want that. Enter the concept of a “buffer zone”.

Setting up a buffer zone around your boundaries is hard. It’s even harder when you’re new to setting boundaries, and you haven’t quite got used to the idea that you deserve them. (You do. Everyone deserves to feel safe.) But it’s crucial. Here’s how it works.

You have a boundary. Say it makes you really uncomfortable to be touched – not uncommon for some of us with sensory sensitivities. You’re chatting with a new friend and they’re standing quite close by, you’re starting to feel a little anxious. If they move unexpectedly, you’re going to get hit. But you don’t say anything, because strictly speaking they haven’t crossed your boundary.

Just take a breath and feel it when their sleeve brushes your arm. Are you sure you want to risk that?

You could wait until you’re twitching. You can push it all the way to that point where fear is almost visibly seeping from your every pore. Sometimes I hum or squeak when I’m in that space. It’s obvious you’re scared, and your new friend doesn’t understand why.

Anxious you, twitching slightly: “It hurts me to get touched. Can you back off a little?”

Defensive them, offended by what looks like a massive over-reaction: “Don’t make such a fuss! I’m nowhere near touching you!” Houston, we have a problem!

Or instead, you could act now. “Hey, I have a personal space bubble and it’s this big!” You’re backing up a couple of steps to the required distance and waving your arms a bit to draw out your circle. You’re smiling at them, if you can. You’re making it low-stakes. You are literally drawing your very own buffer zone.

Maybe they’re defensive. Maybe they hold the distance and maybe they don’t. But here’s the thing: you made a buffer. So even if they do – accidentally or otherwise – cross the line you set, it doesn’t matter. You don’t get hurt. And by making a buffer, you can be less anxious – making them less defensive. You dial it down a notch. Everybody wins.

With friends you know well, maybe they don’t need a buffer. You’ve been around each other long enough to have a feel for how they’ll treat your boundaries. You’ve built up some trust. If they’ve treated your needs with respect, you can risk letting them in a little closer, one step at a time. But you don’t start with the red line. You don’t immediately show someone where the real boundaries lie.

Trust is hard. Boundaries are hard. Buffer zones make it easier. Even the mental image I’m conjuring of buffer zones right now is all squidgy and comforting. (This may be straying off track…)

Love yourself. Figure out what you need. Set your own boundaries. But don’t forget the buffer zone!

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.

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.