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?

Advertisements

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.

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.

When I am disabled

Autism, including Aspergers, for better or worse, is classed as a disability. We could debate the rights and wrongs of that for a virtual eternity, and probably never arrive at a solution. A disability by the medical model: definitely no; although autism is often co-morbid with more physically disabling conditions. By the social model: yes. Yet by this argument it should be possible, in the right environment, for autism not to be disabling at all.

I am very fortunate. With increasing understanding of how my mind and senses work, and the things I need to stay healthy and functioning, I’ve been able to mould my life around those needs. I live alone, in a quiet area, which gives me enormous control over my home environment. And one of the most crucial benefits of my job is the autonomy I have over my working hours. With flexitime, as long as I put in the right number of hours per week, no one minds if I leave 2 hours early one day and make it up the next. Learning to use this for day-to-day self care and management has made a very positive difference to my life. I would go so far as to say flexitime is as important as any of the reasonable adjustments I’ve requested, possibly even essential for me to function effectively. And probably 90, 95, even 99% of the time now, I do function effectively. Day to day, I don’t feel “disabled”.

Sometimes, though, it strikes home.

I feel like I’m doing really well at the moment. Building on the things I learned over the past two years of crises, I’ve been picking up new challenges at work and pushing forward with my career aspirations. I’ve been overjoyed remembering the sheer satisfaction of working hard and being repaid in actual success! After those endless months of running as hard as I could just to stay where I was, sometimes it does seem too good to be true.

But this sort of thing has a cost. Using expensive social, professional and executive functioning abilities, even to have fun, drains my energy much faster than I’d like. And I’m still really bad at scheduling enough time off work or switching off when I’m busy and need down time. So inevitably, there was a meltdown. And unfortunately, it just kept giving.

The meltdown itself was fairly subdued. I knew it was going to happen halfway through the last choir rehearsal before our concert. The organ was too loud – so loud it hurt. I had to time my breathing, exhaling slowly through the pain, like pushing weights you’re struggling to lift. The hand drier in the ladies bathroom made me scream and cover my ears. In the two hours between the rehearsal and the concert, I didn’t talk. I hid in my coat, clinging to the passenger seat of my friend’s car as if my life depended on it, and cried. That was all. That night the organ didn’t hurt. We made something beautiful. The next day I didn’t do much. But it was still too much. I needed more time.

I went to work on Monday. I didn’t have to talk much. There weren’t any meetings in my calendar. I remember looking at the previous week and going, “my God, that’s why I had a meltdown”. I thought briefly about how to learn from that and see it coming in the future, but it felt like too much effort – I was too tired. I’d do it another day.

Tuesday came, and with it an opportunity: one of those small, everyday chances that when followed repeatedly add up to something that matters. I took it, ran with it, nailed it – boom! By 11am, I was wrecked. Wednesday didn’t look good. I caved in and booked the afternoon off. I couldn’t bring myself to take the day.

You know where this story goes.

On Friday morning I arrived at my first meeting of the day, a whole and complete autisticly overloaded wreck. It was classic “low-functioning” stuff. Rocking, avoiding eye contact, staring at the table or the floor. Muttered echolalia – lots of it. “Run, run, run”. My favourite word when I’m anxious, uncomfortable, embarassed; when I want to get out. “Run”.

I didn’t manage a full day at work that week. People saw things they shouldn’t have seen. Yet no matter what my echolalic mind was screaming at me, I couldn’t actually run. It just wasn’t a solution that occurred to me. Never mind that this is what paid sick leave is for – there’s no category, you see, for autistic overload, in the tick-boxes you have to choose from on why you’ve called in sick. So clearly I’m not allowed to go home sick if I can’t spell my own name. There’s no rule for that. It must not be allowed.

This is when I am disabled.

Next week I will have to explain to my colleagues why they saw what they saw. I will have to reassure them that this is a temporary thing – that it’s like being jet-lagged or having the flu. That even though I can be staring at a wall one day, crying, stumped by dilemmas that a five-year-old could overcome, that next week I can be even brighter than they are. That this is what it means to be autistic. I will have to swallow my pride, again, and trust that they will not judge me. And then I will talk to my manager and we will make a “rule” that I can follow, so that next time I will cope.

As long as next time is the same.

Team building: the working Aspie’s nightmare!

If there’s one certainty about working in an organisation with a reasonable budget, it’s that at some point, inevitably, someone will decide we’re just not working together effectively as a team. Maybe we don’t talk to each other enough, so information isn’t getting to people who need it. Maybe we’re not helping one another cover deadlines, so things are being missed. Maybe the attitude in the office is toxic and back-biting, with liberal helpings of aggression and defensive behaviour heaped out in steaming spades on innocent bystanders. It doesn’t matter what the cause. The solution is the always same. Clearly, we need to do team building!

Perceptible shudder.

So let’s talk about team building.

The traditional selling points of team building seem to be built around the following:

  • People are inhibited in the workplace! They need a different environment to show their true selves and learn to shine.
  • Destructive team and workplace habits are ingrained and reinforced by the working environment. The team needs to be shaken up to break those habits.
  • People need to get to know each other on a personal level to develop the trust they need to work together.
  • If people do something non work related together, it will show up their hidden strengths, which will build and improve the way they work together as a team.
  • Everybody here loves each other really; we just need to be somewhere other than work to show it. (OK, this one I may be paraphrasing slightly. But the essentials are valid!)

I won’t comment (at this point) on the validity of those particular assumptions and views. But what tends to result is something like this:

  • A team outing to an exciting new location
  • Doing a community service type activity together
  • Learning a new, non work related activity together
  • A consultant is brought in to do “psychological” team building exercises
  • Some element of “trust” in colleagues is at some point required

Which is all well and good from an able-bodied neurotypical perspective*. But let’s take a look at this from an autistic angle.

First, the exciting new location: how do I get there? Will I be able to drive? Can I get a lift – but then what if I have to leave early? I’ll be disoriented, I probably won’t be able to find my way around. Can I get a map or layout in advance? Where are the toilets? And the schedule will be different – can I get a copy of that? Will I know what to expect? When will I be able to find food? Will there be a quiet space? No? Whimpers quietly.

On community service: this is guaranteed to bring out the worst of all the above, and more. Simple activity? Think again. We need instructions – explicit instructions – and there’s 100% certainty here that we’re going to have to beg. No one can quite believe that a person would need guidance on how to do a litter pick – but believe me, if we’re asking, we do. And then there’s the endless hours of unstructured socialising in a work based hierarchy. It’s hard enough to develop our original “rules” on the differences between work and social interactions. Trying to apply “work social” rules out of context can be close to impossible.

How about learning or trying a new activity together – surely that’s OK? We’re breaking down the hierarchical structure, based around experience or expertise, to something where – in theory – we’re all starting from the same fresh slate.

Except that we’re not. Everyone “learns” at different rates. But I need quiet, isolation and the safety of a familiar environment in order to learn. I need to be prepared, to know basically what to expect. I can’t ask the right questions the first time around. Of course, giving me this information in advance wouldn’t be “fair” on everyone else. So this will be a day of quiet desperation, attempts to hide behind the rest of the team as I struggle to make sense of the simplest new concepts in an alien environment. Incredulous stares, pity and condescension as my “stupidity” is exposed. A day of being labelled and judged for things I can work around quite effectively whilst doing my job, yet stand out like blood blisters in isolation. That gutwrenching moment when I realise nothing will be the same after today. How will this impact my professional repuation? When will I be able to look my team in the eye again?

And the “trust-building exercises”, oh my! There are parts of me that I’ve learned to keep hidden. Things that make “normal” people uncomfortable; things that I’m rightly afraid of being judged for. Such exercises – based around the naive yet pervasive illusion that everyone shares the same basic comfortable “normality”, a common ground – are designed to draw these things out. Fear of humiliation and exposure are uppermost in my mind.

Lovers of team building, if you are working with anxious, autistic or otherwise “different” people, please consider the following:

  • Team building is the ultimate in terror for a productive (or quietly struggling) Aspie.
  • Unfamiliar places, new activities and disruption to routines are extremely difficult for us. We need to know things in advance that other people might not need, in order to cope.
  • There is a massive risk of meltdown or shutdown in traditional team building environments.
  • We don’t want our colleagues to see this! We’ve spent a lifetime building a professional demeanour, learning to deal with the unexpected as our job requires. We don’t want to damage that reputation.
  • You don’t want our colleagues to see this – especially yourself. Trust me. It’s ugly.

Team building lovers, I beg of you, show some sensitivity. Don’t make us do this. Allow us to retain our dignity and professionalism. Find some other way of building team trust and cohesion. But not like this. Please, not like this.

*Actually, I have it on reliable authority that “normal” people also hate team building. As well as suggestions on actually useful alternatives. But that’s another story 🙂

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.

Can we really be Disability Confident?

I’ve recently come across this scheme which the government is promoting to make businesses more “Disability Confident”. On the fact of it, and in fact to a certain depth, this is enormously positive. The webpages are not a gimmick: they state in clear language the benefits to the employer of having good disability related policies to employ and retain disabled staff, supported by facts and figures. In particular they emphasise the frequency with which this actually means retaining skilled staff who become disabled during their working lives. This is a huge selling point for employers, for whom recruitment of skilled workers can be an enormous expense.

There are three levels to the Disability Confident scheme: an employer can be committed, Disability Confident, or a Disability Confident Leader. The documentation is clear on what should be done at each stage to achieve and maintain the label of Disability Confident. The principles set out, in that they make good sense to me as a disabled person, are frankly above and beyond what I have come to expect from British culture today! If this means what it has the potential to mean, that we might be moving forward as a country from the Autism Act 2009, through the Equality Act 2010, to progressively stronger guidance and legislation to protect and support disabled people, it would give me real hope for my future. The kind of hope I haven’t seen since beginning to pursue a diagnosis, almost two years ago.

There’s only one thing that worries me about this scheme, and that’s the phrase “self-assessment”.

In the level 1 documentation, on becoming “committed” to Disability Confidence, only once is it suggested that disabled people should be part of the assessment process: to test that the employer’s interview process is accessible. The second level, of actually being Disability Confident, adds the requirement to “[value] and [listen] to feedback from disabled staff”, including taking appropriate follow up action. Things like “making reasonable adjustments” and “promoting a culture … where your employees feel safe to disclose” are positive statements of actions that a business can take in making itself a safe and secure environment for disabled people. The level 2 documentation, if adhered to, describes an environment in which I personally would feel valued, confident, and encouraged to work hard towards achieving my full potential. It’s all there. But it’s not until level 3, a “Disability Confident Leader”, that the employer’s culture and environment is subjected to any serious assessment by actual disabled people.

There are plenty of people I know – otherwise hardworking and decent people – who are nonetheless thoughtless and occasionally discriminatory on the grounds of disability. It is difficult, when the lived experience of disability is so different, and particularly in a culture that infantalises and persists in speaking for and over this “lesser” group, to learn to appreciate the perspective of a disabled friend or colleague. It is hard for non-disabled people to realise the urgency of “reasonable adjustments”, or the stark reality that not only is there such a word as “can’t”, but there are people they work with who are forced up against that “can’t” every single day of their lives. Until you know that – until you have felt it, through thoughtful empathy or lived experience – it is impossible to appreciate how demoralising that can be.

So I wonder how much, through self-assessment alone, this Disability Confident scheme will be able to achieve towards improving the experience of disabled people in the workplace today?

For any employers out there considering the Disability Confident accreditation, as a disabled person fully committed to the wellbeing of my own organisation, I would highly commend it to you. But I would encourage you also to ask some hard questions of yourselves that are perhaps not stressed enough in the documentation. I would ask you to engage actively with disabled individuals and any disabled communities within your organisation. Ask them what they need to do their jobs well. Ask them how easy it is to get reasonable adjustments, and to be fully confident that agreed supports will be in place when they need them. Ask them anonymously, and be prepared to hear their honest answers.

Because the truth is that, even with the best will in the world, you may not yet be Disability Confident. And if you want to become so, you will need to ask yourselves hard questions about the past. When a deaf employee requested an external palentypist, and you had to refuse because some information was “commercial in confidence”, did you take the time to explore possible alternatives? When a dyslexic employee asked for notes to be taken in meetings, because he struggles to parse verbal instructions, did you tell him that was just too much of an admin overhead? Did you consider the impact on the disabled employee: which parts of their job would become more difficult or even impossible to do without these supports? In the future, what would you like to change?

Disability Confident is a hugely positive step in a culture that undervalues disabled people and the work they do. But self-assessment, where any organisation can blithely state that they are already Disability Confident, is not enough. To become safe and secure places where disabled people can work and thrive, many employers will have to recognise harsh truths around where their processes are not currently working. An essential part of the process of becoming Disability Confident is inviting honest input from disabled employees, accepting criticism with humility, and being willing to change.

In the future, I look forward with hope to the example set by Disability Confident Leaders, and their efforts to make the working world safe and accessible for us all.

Scenes from childhood

Like many on the spectrum, I was not a happy child. Having supportive and loving parents, I was luckier than some. And I have seen some photos of me, as a very young child, smiling. But my abiding memory of the camera was always the gentle encouragement to stop frowning, to look happy. I was rarely happy.

My primary school years were a particular trial for me. Infant school is peppered with memories of solitary play, of watching from the corner of the playground or imagining wild jungle scenarios in my own little world. Quiet, strange, a little lonely, but mostly harmless. But in junior school, surrounded by peers becoming more and more aware of the social world, my strangeness could no longer pass unnoticed. Articulate on paper but slower in words, I was bullied mercilessly: first by older children, and then by my peers. The saying, oft quoted by my parents, that “words can never hurt me” provided no comfort. Sticks and stones I could have dealt with – those I could learn to fight – but somehow I could never get to grips with words. I remember my mother hugging me, telling me I had to try to be less sensitive: don’t let them see they’re hurting you and they’ll go away. I couldn’t hide it.

I was around 10 when I realised I could hit people to get them to stop. I learned it by accident one day: overwhelmed with the rage and shame of constant public humiliation, I just lashed out. This, I later found, was particularly effective against girls. Since I’d had a growth spurt by this point and was one of the tallest in my class, the verbal bullying I’d been defending myself against carried little weight with teachers faced with a cute little sobbing blonde pleading I’d hit her. But it was the only way to make them stop.

I don’t like to think about where this path would have taken me. Thankfully, my secondary school was focused on academic achievement and had an excellent anti-bullying culture. Having flared up a couple of times, and been met by peer behaviour of surprising emotional intelligence, the brutal lessons of junior school were quickly scrubbed out. But it’s sobering to realise the full impacts of being in an unsafe environment. However strong you are, eventually all you are left with is how to survive.

The lessons of childhood have a strange habit of popping up again in adult life. It’s easy to get cocky, thinking you’ve outgrown the vulnerability that pushed you to anger and violence. I thought that chapter of my life was over. I was wrong.

These past few months, I’ve been in a terrible place. From what is now a safer space, with hindsight, I can’t describe it as workplace bullying. But even though there was no conscious intent, the actions of this person and their treatment of me had pushed me into a place of desperate terror. Held ransom to social and communication abilities I did not have, there was nothing I could do to take control of my situation. Whatever I did, I couldn’t win.

As the months dragged on I grew to hate what I’d been turning into. I’d regressed into that space of desperation: of lashing out at the tiniest thing, seeing every challenge as a threat. On the surface I kept fighting patiently for support, trying not to scream the urgency while my self-care and home management abilities crumbled. But the constant performance took its toll. Work became the subject of my nightmares. With the threat of retaliation for autistic behaviours always poised over my head, fuelling the very distress that makes those attributes more difficult to mask, my position was precariously unstable. I felt – I was – unsafe. And all of the unhealthy attitudes and mechanisms I’d used as a child came back in full force. The positive lessons of my adolescence protected me in part: I didn’t hit, I didn’t shout. But I couldn’t sit still. I paced in meetings. I couldn’t make eye contact when the bully was in the room. I physically shook with adrenaline, with the effort of suppressing my anger and fear.

It’s been a few weeks now since the situation was diffused. This person and I no longer work closely together, and my line manager has been wonderful in helping me get back into a healthy routine. I’m no longer pacing and shaking in meetings. Things are settling down.

I’d like to say I’ve learned since I was 11 years old. And I have: I’ve learned many things. I’ve learned the importance of trusting my own lived experiences over the voices of authority. I’ve learned that nothing can be taken for granted. I’ve learned that patience through pain is the only way to get what you need. And the most powerful positive lesson of all: I’ve now learned that eventually, patience can work. Experiencing the outcome of patience and perseverence can only feed my confidence in pushing for future outcomes.

But I haven’t learned how not to be a monster in between.

Compassion, I think, is the main thing to take away from all of this. A deep understanding that behaviour and attitudes, of myself and of others, are often much less about the person and more about the environment they’re living in. A hostile environment makes monsters of us all.

Perilous meetings, part 3: is there another way?

I have to admit, I’ve been putting off writing this post for a while. As in, months. Maybe more. I don’t like to write about things until my understanding is complete. Perfectionism is a problem for me.

Sometimes in life, you can know you don’t have all the information, but you have to act on it anyway. Time doesn’t stop for me to make sense of what I’m doing. I am acting on this understanding now, incomplete or immature as it may be. So I will try not to be ashamed of sharing it with you.

The last two posts I’ve written were about the dangers of workplace meetings, and the methods I use to determine whether it’s worth the risk. Today’s post takes a more positive stance, asking: what’s good about meetings, and can I reap any of those benefits elsewhere?

And that quickly, I am out of my depth!

From my analytical standpoint I think there are two main reasons why meetings are, in principle, a good thing. Firstly, and quite simply, information exchange. A lot of things can be discussed in emails or reported in briefings, but neither of these quite matches the immediate efficiency of reciprocal conversation. My difficulties with speech are quite subtle – enough that I will be blamed for my “inappropriate word choice” as harshly as if the intention were to offend – and although I’ve thought about script cards I can’t quite bring myself to use them, for fear of being told I’m over-dramatising. So verbal, in person conversation does fill a unique niche for me – as for many people – that is very difficult to replace.

The other reason is really a variety of reasons, clustered weakly under a heading I could perhaps designate as “connection”. The very act of being visibly present and participating in discussions creates ripples: subtle effects on the interpersonal relationships of those involved. The nebulous concepts of approachability and trust seem to hinge on the contents of these reciprocal interactions. It’s about “staying in touch”, “maintaining an open dialogue”. If I were feeling cynical and utterly unsympathetic to human foibles, I might say it’s about reminding people you exist. But it’s an unfortunate reality that if you, like me, avoid group coffee breaks and water cooler small talk, you may find the only remaining option for connection hinges on an effective presence in team meetings.

Intellectually, I can see how it might be possible to achieve things in unstructured meetings. From what I’ve observed of social interactions, neurotypical people can and do select the focus, progress discussions and make firm decisions in conversation that they then act upon. But my experience as an autistic person is that I can’t do that. Not in social settings, and not in work meetings. I just can’t keep track. So I need to find another way.

There are a number of things I do at work to try to fill the gaps that “risk management” can create. Some of these are relatively easy. I keep on top of my emails and the news on our Intranet. If there’s something I’m aware of that I can’t find information on, I’ll email someone to find out more. Wherever possible I stay ahead of changes in policy or procedures by looking up the written documentation. I also have regular chats with my line manager, where I ask explicitly for updates on anything that might affect my work or job role. Such a proactive approach may seem like overkill, but it helps me to see straight away where I might need more information, and to avoid any unpleasant surprises.

But for reciprocal interactions, one-on-one meetings have been a complete revelation. I wrote about when I first discovered this, and have done my best since then to build on that insight. Now I keep up with some colleagues and contacts through coffee breaks, where I can practise handling the flow of conversation between work projects and outside interests. And while I can’t be completely confident in the attribution, I am starting to see a difference in how often those colleagues approach me, and the level of trust they show in my technical judgement. We’re working better together since I started experimenting with this form of connection.

Of course, one-on-one meetings can’t cover everything, and there are times when it really is essential to have everyone in the same room. I’ve noticed that people – including myself, when sufficiently relaxed – sometimes need the context of a wider conversation to bring the right thought to mind. And it’s not uncommon that, while one person might have most of the pieces to one particular puzzle, the different pieces others bring mean that sometimes you don’t quite know how the picture will look until everyone has had their say. Most of my team work quite independently on our projects, so it’s usually possible to slot extra pieces one by one into an already clear picture, but it doesn’t always happen that way.

These meetings are as risky and difficult to deal with as any other. But I find that by pacing myself, being aware of meeting goals and avoiding less constructive group settings, I can save myself to contribute more effectively to these essential interactions.

I’d like to say I’ve got the balance right, and it’s certainly true that I’m seeing improvements; but this is very much a work in progress. Recently workplace meetings have got harder and harder for me. Although there are many good reasons for this, it’s tricky to break out of the spiral of low confidence repeated “failures” can bring. The final piece of the puzzle, ironically, may be to ask for help from other members of my team. I’m not quite there yet, but I think I’m moving in the right direction! Until then I’ll keep pacing myself: building trust through one-to-ones, avoiding risky situations, and saving myself for those larger workshops where there really is no other way.

Baby steps 🙂