The perils of workplace meetings

The statistics for autistic adults in employment in the UK are bleak. Despite the similarity in distribution of intelligences on and off the spectrum, a mere 15% of adults with autism are in full time paid employment, compared to around a 75% employment rate for the total population of the UK. This factor of five difference in employability is widely attributed to the difficulties autistic people have, not with work itself, but with the social and political expectations of the workplace. I suspect that executive function and time management / perception issues may also play a role here. But in the socio-political arena, not least of the pitfalls awaiting us is the workplace meeting.

The issue of workplace meetings is huge for me, and much too large to deal with in one post! I’ll make a start here by sketching out the intricate, inconvenient little details that add up to explain why meetings can be such a tricky environment for autistic people – and the equally intricate little workarounds I use to chip away at the problem.

Meetings can be difficult for a variety of reasons. First, verbal dialogue. Some autistics (including me) have difficulty with short term memory, and struggle to hold verbal information in mind. This is a characteristic we share with others in the neurodiverse community, notably dyslexics. In offices with a culture of unstructured meetings, often lacking an agenda or minuted actions, it is easy for us to miss or misunderstand what is going on and what we are required to do.

Secondly, processing speed. The nature of conversation is to flow, sometimes rapidly, from one person and one topic to the next. Many of us on the spectrum need time to assimilate and consider the facts as they come in. Again, particularly in unstructured meetings, I often find my responses or questions arise too late, when the group has moved on to another thing. If I interrupt then, I disrupt the conversation; but if I don’t, I cannot contribute, and decisions are made without me.

Thirdly, when and how to speak. This is an area of immediate risk – for me, at least. It’s well recognised that the natural language of autistics is literal and direct, and that many of us don’t automatically modulate our vocal tone. To speak up quickly and avoid missing what is often the only opportunity – after insufficient processing time and with the anxiety of not completely assimilating the verbal dialogue – is to risk accusations of rudeness, insensitivity or disrespect. But not speaking carries the more insidious risk: of not understanding, not executing the correct actions, and ultimately of losing trust and underperforming professionally. Not forgetting that remaining silent prevents us from making our own, valuable contributions to these conversations.

I decided some time ago to choose the immediate risk of speaking in meetings. Accumulating experience, I began to recognise that my insights and experience could be important, even crucial to success. I’ve come to understand and believe very strongly that everyone on the team has something to contribute toward improving our products and processes; and that by not contributing myself, I would not be fulfilling one of the key responsibilities of my role.

Having said that: on a daily basis, maintaining confidence in meetings is one of the most difficult things I ever have to do. My style of communication is quite direct, honest and upfront, and I don’t hesitate to ask questions if unclear. The combination of being young and relatively intelligent, and of outwardly taking people at face value rather than on reputation, leads certain individuals to interpret this as a personal affront. (I suspect the fact that I am also female only compounds this issue, given the jarring disconnect between the stereotypical submissive young woman and the competent, questioning scientist that I like to project.) There is always the risk, therefore, especially in meetings with particularly well-established or tender egos, that I will be judged on the lack of soft edges in these interactions rather than the content of my message. Having confidence misinterpreted as arrogance and straightforwardness as lack of respect causes the sort of unquantifiable damage that can lead to the end of a career. So there is always pressure, and there is always fear.

There are a few tricks I can use to reduce the risk of workplace meetings. I have an agreement with my manager to get an agenda or “goal statement” in advance of each meeting, to help me follow the changes in topic. If I need to, I can ask for actions to be summarised in writing, at the end of or after the meeting. But it’s rarely enough to deal with the issues of tone and “word choice” – using the straightforward language that comes naturally to me.

I’ve had to accept, reluctantly, that the likely prognosis for any given meeting I’m invited to will be negative. But there are methods I can use to swing those odds back in my favour. In later posts I’ll describe parts of the wider, strategic approach I’m using to navigate the meeting culture in my organisation, and the benefits I’m starting to see in my performance and wellbeing over the longer term.

Nice people

I’m struck sometimes by the cognitive dissonance there seems to be in the heads of a very specific breed of “nice people”. Nice people know how you feel. Nice people sympathise with you. Nice people make soothing noises when you break down and cry, and tell you that everything is going to be OK. But tomorrow those nice people will do sweet F.A. to make it so.

Nice people, you see, don’t need to change. Their sympathy is enough. They know how good they are with people – they’ve been told so all their lives. They couldn’t possibly be part of the problem.

The problem with these “nice people” is their pride. Whether or not unconsciously, they are proud of being nice. Their natural way of being makes others feel comfortable. It’s a role they know from heroes in stories and leaders in films, the aspiration of many. They share others’ pleasure and soothe their pain; and they draw what is a perfectly innocent satisfaction from their social value.

Honestly, I do understand. It’s rewarding beyond measure to know that you can help or inspire another person. There is a deep, quiet joy in being able to support a friend or loved one, in the everyday things of life as well as the crises. I can imagine how that situation being normal, and not the beautiful exception, might shape a person’s self image; and might shape what they come to expect from the world.

Nice people know, with quiet certainty, that their value is intrinsic. This is their gift. They always know what to do and what to say. They’ve never had to think about the impact of their actions. That impact has never – to their knowledge – been anything other than good.

And then they meet me.

Actually, it’s not only me. It’s anyone they meet from the Other Side: poor, frail, depressed, sick, disabled. Anyone whom the system does not support. Anyone from whom, in fear or in pain or through simple lack of ability, the social niceties in just one of many crises might slip away.

Nice people are hurt when you snap at them to STOP causing you pain. Nice people feel pressured when you beg for their help. Nice people know the best way do things is gently, with trust and with patience. They’ve never had to step out of their own heads to feel what you feel. And that’s the danger, right there: that they’ll treat their own passing sadness with more urgency than your desperate, existential need.

Nice people are used to feeling respected. They’re not used to holding back their feelings when someone is rude to them. They’re not used to thinking about the “why” before they complain. They don’t know your pain. They don’t mean to hurt you. But they do.

Nice people are wonderful when things are going well. When you’re passing and functioning and ready to have fun. And nice people can be great at propping you up for a while, just until you get back on your feet. They can be there for you. They know all the sorts of crises that normal people go through – losing friends, breaking up, divorce, bereavement – and they really do mean well. They want to be able to use their skills to help you. But they are so sad, so disappointed, when you can’t be fixed.

What those nice people don’t realise is that we can’t all be like that. Some of us have lives where being on your feet and fully alive is the transitory thing. Some of us can’t rely on being there for others, not at just any time. Some of us save ourselves in anticipation of those glorious days when we’re not sad, frightened, confused or in pain. Some of us mourn those selves that barely see the light of day.

Some of us need “nice people” to be different. Some of us need them to realise that speaking up, again and again, when your basic needs aren’t being met isn’t selfishness: it’s survival. That being in constant exhaustion or confusion can preclude giving away parts of ourselves to support others. That making one choice between being realistic about our capabilities or chronically unreliable doesn’t make us bad people. It’s just that we didn’t have the choice you had. To be nice.

Dipping my toes in the water…

Too much has been going on so I’ve been hiding away from the world for a while. It’s been difficult to keep up with reading blogs and news stories, let alone writing. I suspect many people find this, but when I’m struggling I need to save my emotional energy for my own problems. Reading about other people’s pain and how many things are wrong in this world, which I am helpless to resolve, just makes me want to cry.

I think I’m back now🙂

I thought about putting together a post for this week, but then I looked through my reader pane and realised I really don’t need to! It’s incredible to see such a lot of amazing stuff all out at once. So it might seem like a cop-out, but today I’d really like just to share a few links to pieces that made me feel hopeful.

Firstly there’s Progress Not Perfection. Taking a refreshingly impatient view of the “grumbles” on social media, she’s running a series of posts on things that go well in mental health services. While there’s definitely a place for grumbles – it helps us all to be able to vent or just share our experiences with people who understand – these stories definitely perked me up. You can find the first post in the series here.

Then I read this post from AutiWomanDifferentBox. It’s a big commitment to seek out an adult diagnosis, and as far as I can tell everyone has a pretty unique experience of the whole process. Adult autism services are improving in the UK, but there are still huge gaps by region, and GPs seem to know very little about diagnosis and support. The National Autistic Society has lots of information. This was also a good post to remind me I should write about my experiences so far of seeking an NHS diagnosis…

Finally there are a couple of good posts at Michelle Sutton Writes about dealing with “challenging” behaviours in neurodiverse children. I’ve learned a lot from this blog, largely about self-acceptance. It’s not cushy or sentimental, but offers practical strategies about how to just get on with life when your needs, and those of your children, aren’t automatically met. Her piece here is a reminder that making “difficult” children feel safe is an absolute prerequisite to teaching “acceptable” behaviours in a safe and meaningful way. I love to read this because it reminds me that even when things are difficult I am not just a naughty child (yes, I know I’m in my late twenties…), and that as a first step, just focusing on meeting my own basic needs will make everything else start to flow more easily. (And also, if I were ever a parent, I would want to do it like this.)

And then there’s this. Which needs nothing more!

That’s all for tonight folks. Happy reading🙂

Serenity

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

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

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

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

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

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

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

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

Negotiating power

Very soon I will have to have a difficult conversation. I have to negotiate with someone whose current position is so diametrically opposed to mine that the two of us seem to be overreaching ourselves just trying to meet in the middle. I need that person on my side.

In the past, I’ve rarely bothered to negotiate for my needs. In my experience, just battling through a difficult problem or situation is usually easier than trying to get help from someone else. In terms of emotional input, it’s certainly less costly, although it can have unfortunate consequences for my wellbeing in the short term.

There are a few reasons I tend to deal with my problems independently. The main issue is the difficulty I have in approaching people and starting conversations. Often a problem seems self-contained – perhaps time-limited to just a week or two. I might feel that, within those constraints, I have a good chance of keeping things under control. Then especially if the best person to speak to is someone I’ve never met, or someone I know I find difficult to connect with, just the stress of approaching them is a huge investment that might not be worth the benefits. Perverse as it sounds, there’s also the added uncertainty. Sometimes it’s easier to commit upfront to a bad situation than it is to hope for better, and risk being crushed.

There are other, rarer occasions, when I do look for allies. When my time-limited problem has unexpectedly extended itself, or the immediate effects are just too dire. At that point, the problem is translation. Sometimes the person understands what I’m trying to tell them; and honestly, when everything suddenly and magically gets better (and it’s amazing how often that is the case), I wonder why I don’t do this more often. But if they’re not immediately supportive, I’m still more likely to back away into my shell than to try to bring them around to my point of view.

Over the past year I’ve been building a clearer, more strategic picture of my personal needs and vulnerabilities, so that I can anticipate where and how certain things are likely to go wrong. The idea was that if I knew when a situation was heading south, I could talk to the people involved, try to manage expectations, and maybe even get some help. It only half worked. I’ve learned a lot about situations that might go wrong for me, and am developing increasingly effective tools and workarounds to maintain my own personal wellbeing. But I can’t manage expectations, and I don’t have available in conversation the flexible emotional vocabulary required to persuade others to help me. So despite my efforts, and to my increasing frustration, those little everyday disasters that could so easily have been avoided just keep on happening.

Enter “difficult conversation”, looming ominously on the approaching horizon.

I’m very aware of the skills I lack which are crucial in real time negotiation. I struggle with self-confidence and assertiveness in articulating my needs. I don’t have the ability to think quickly and flexibly in real time. Under pressure, losing verbal fluency and desperate not to antagonise others, I will agree to almost anything rather than incurring judgement on my increasingly autistic communication style. Only later will I realise I can’t deliver on what I’ve promised.

The main things I’m thinking about to prepare myself for this conversation are as follows:

  1. Preparation. Preparation is key. I’ve spent a lot of time thinking about the parameters of this conversation and what I’ll need in order to communicate effectively. That’s before even thinking about the position I’m trying to negotiate for the longer term.
  2. Time. I almost certainly won’t be able to process all the necessary information in real time, in a way that allows us to move constructively towards a compromise. The fear of not getting what I need, reinforced by repeated experience of signing up to things I can’t achieve, will make me dig in my heels – and that kind of stubbornness could go badly for me. I’ve already requested to have more than one meeting, to follow up the issues and give me time to absorb the information before we commit to any kind of agreement.
  3. Expressing my needs. Communication is hard; emotional communication is harder. I’m thinking about how to use scripts or alternative forms of communication to indicate when I need a break or processing time. A friend suggested I could write some scripts on little coloured cards, like the ones you can get for exam revision or as presentation prompts. I’ll need to make sure the messages are agreed and understood in advance, as I won’t have words to explain them at the time.
  4. Self care. This meeting is utterly, unavoidably essential, but it’s going to exhaust me. I’ve arranged to take some leave and work flexibly around the negotiations themselves, so that I can focus all of my attention where it’s needed without worrying about working productively, operating sustainably or avoiding overload. There’s easy food for if (ok: “when”) I get home struggling to untie my own shoelaces. I’ll try not to get run over on the way!

Negotiation is complex; but as a helpful professional reminded me recently, I won’t get anywhere if I don’t ask. I don’t know whether any of this is going to work. I’ll let you know.

Hate

I get most of my news off the radio. So it was on Sunday morning, over breakfast, that I heard about the mass shooting at an LBGT nightclub in Orlando, Florida, USA.

The obvious explanation that sprung immediately to mind was that this was a hate crime. A horrible attack on gay people, in a deeply Christian culture that quietly tolerates the intolerance of any relationship not strictly classed as heterosexual. A clear, stomach-churning example of the way that quietly letting everyday injustices pass can nurture the attitudes that eventually lead to such brutal, horrific acts of violence.

The reporting journalist, however, had other ideas. I was shocked a second time by the rushed inevitability of her quick and eager report: that no, there was as yet no conclusive evidence on whether or not this was an act of Islamic terrorism.

No acknowledgement of any alternative motivation. No mention, beyond the nightclub’s identity, of the LGBT connection, or even the possibility of a hate crime. Muslims are so inherently violent, it seems, Islamic terrorism so rife, as to be simply assumed. The first person I heard to intimate that homophobia might have motivated the attack, later on in the afternoon news, was the gunman’s father. The media, however, denied the issue, or were silent.

How elegantly the marginalisation of two separately stigmatised groups is reinforced. How subtly the discrimination that LBGT people experience throughout the Western world is trivialised. How neatly the blame is shifted onto another culture, another religion, another type of person. Someone else. Not like us. That could never happen here.

Except that it does happen here. It happens every day. I remember the case fought and won by a gay couple who were refused entry by the Christian owners of a B&B. Yet even winning that case couldn’t suppress media coverage disgustingly sympathetic to the guilty, and has not stopped other bigots considering it acceptable to repeat the offence. Closer to home, I’ve seen my own gay friends being subject to derogatory street abuse by an elderly white man, in all other respects the picture of stately gentility, making his steady way towards the corner shop. These aren’t the isolated acts of terrorist radicals. These are the everyday aggressions perpetuated by “respectable people”. The people we worship with in church. Our neighbours. The people who live next door.

I’m not for a moment implying that the majority of people would take an assault rifle into a nightclub and gun down over a hundred people. It doesn’t matter. The majority of LBGT people didn’t die in that assault. That doesn’t make this any less the expression of a hatred many in our society still choose to accept. That doesn’t take away the fact that somebody singled out those hundred people, of whom at least fifty have died, specifically because they were part of the LBGT community. That doesn’t make this any less their pain.

Why is it so hard to acknowledge others’ pain? Why do we struggle so much, collectively, to empathise with perspectives different from our own? Is it because we feel ashamed? Is it because we know, deep down, that we are a part of the society that collectively accepts the discrimination and tacit oppression of anyone different from ourselves? Does it feel safer to express outrage at anti-gay laws in Uganda, the very strength of our indignation protesting the alienness of it all – as if somehow this abuse were confined to strange foreign lands, separated from us by thousands of miles, instead of happening right outside our doors?

We need to be able to accept the pain of others. We need to acknowlege their suffering. We need to validate their fear. Even if there is nothing more we can do, no support we can offer, we cannot but take that first step, and stand beside them.

Updated: because this atrocity isn’t mine to own. These are the posts you should really be reading:

Breathe

Time is contracting around me at the moment. To say I don’t know what prompted this would be a lie, but the suddenness and sheer intensity of the reaction never fail to catch me off guard. One moment I’m fine. The next I stall just trying to say the words: “I need to go home”.

Overload, stubbornly unremitting, has been the theme for this week. It started with a weekend all to myself, full of enthusiasm for clearing the inevitable backlog of mundane, everyday tasks. A whirlwind of activity, I almost succeeded. Then two nights I came home from work and I couldn’t stop. Sitting down quietly and clearing my head in time to sleep – just didn’t happen. So the next two days, in an office full of people? Crash and burn.

Experience tells me I need to try harder to slow down. A combination of really wanting to exploit the productivity (“aw, but I’m getting stuff done!”), along with something that lies partway between false confidence and wishful thinking (“I’ve learned to deal with this – it’ll be fine”), lead me time and again not to do what I know I need. It’s not easy to make that conscious decision to stop – stop making progress with this time and start to relax, right now. Because if you don’t, there will be no time tomorrow.

“No time” in this context seems like a strange way of putting it, particularly in a society where time is so fixedly absolute. Conventional wisdom – indeed, all reasonable logic – says that the more time I spend doing useful things tonight, the more time I will have tomorrow to spend as I please. But that is only true up to a certain point. Past that point, the more time I use today, the less is left over for tomorrow.

Like money, time in itself isn’t really important. What’s important is what it buys. Poverty and wealth aren’t defined by a simple threshold in annual income – however hard the media may try! The value of money is measured in the food it buys, the heating it pays for, and – when we are lucky – the opportunities it affords. In a suburb 50 miles from London, a 3 bedroom house can be bought for what it costs to rent a bedsit in the city. Money is relative. So is time.

My time isn’t measured in hours, minutes and seconds. It’s measured in fresh dinners cooked and casseroles bulk-frozen. It’s measured in shirts ironed. It’s measured in miles walked, cycled or driven to get to where I need to be. The units of time are activity. So for me, having “no time” literally means not being able to complete, between fixed commitments, the necessary activities to remain healthy and functional.

When I walk home overloaded, if I look up from the pavement, I will be lost. I know the route by heart, and must walk it as if in my sleep, because the conscious me does not know where I am. My mind overflows, making nonsense of the signs and signals around me. Just crossing the road is a dangerous adventure, and unreal – I could walk straight out into traffic that I hadn’t even seen. Bizarrely, these times when I run such concrete risks to my own physical safety are one of the very few times I do not feel fear. With such incredible volumes spilling over in my head, there is no abstract or spontaneous feeling. I feel everything that is real, from the visual and auditory and other sensory stimuli that I cannot at that moment process; and yet emotionally, I feel nothing.

When every step seems an age, and a half hour journey lasts a lifetime, the concept of time as an objective construct appears as it truly is: meaningless. When finally I arrive home, nothing will be done that night. In assembling dinner, I will sacrifice the next night – if I didn’t eat I might lose several more. On the third night, I will wake dimly from the haze with three nights worth of things to do. I will do two, in a panic, and cancel my weekend plans. Because although there was the same amount of time that week there always is, there wasn’t time.

Weeks are lost to these monstrous fluctuations, this constant uncertainty. Planning becomes impossible. Life becomes small, strung out and struggling. Isolation and focus become the only way to survive.

Of course, the flexibility of time has a flip side. The weekend hours are longer than those on weekday evenings. Freed of commitments, weekends can loosen the hours that have mercilessly constricted around my working days. Relaxing the schedule to drift between tasks, with no one to answer to, I can be safely and happily disoriented to focus on the important things at hand.

For now, another weekend has come. Precious time to spend reinflating the hours, so that next week, I can breathe.

Fear of time

When I was younger I had a recurring nightmare about being chased by clocks.

They weren’t real clocks. Not as such. I just never had the right words. I was walking down the corridors at school in the early morning, through the music department, where I used to go to practise before registration. There was always something behind me. I didn’t know what it was, but I started to walk faster. It didn’t go away. There were people and movements and abstract things that told me that time was running out of my control. I ran to class, but it didn’t make a difference. The day was over. The time was gone.

The dream went away, but the feeling stays with me. I can’t put a name to it. Reading tells me that this is what most people call “anxiety”. The word seems shallow compared to the depth of the emotion. It’s like seeing the tracing of a brilliant painting, the colours translucent shadows of reality. It doesn’t come close to describing what I feel.

I wonder about time. I wonder, as something to which society so rigidly clings, at how little it is absolute, and how much only perceived. A great rippling canvas stretching out into the distance: but coloured, folded, warped and stretched by each of our individual sensory perceptions. Some autistic people describe having no sense of objective time, hours passing without note – a luxury occasionally afforded by my beautiful empty days. There are those people who always seem to be lost, showing up late to everything or not at all. Sometimes I feel like one of them. But the virtues of punctuality in social settings, it seems, so inextricably linked to the dreadful sin of rule-breaking, were deeply ingrained in me.

I lived with the feeling for so long it all but faded into the background. Over the years, it became a part of me. It would build up inside me like the invisible coiling of a spring, tightening, squeezing into smaller and deeper spaces day by day as I held it at bay. As I balanced and juggled an ever more complex schedule, with dates and hours and deadlines and people, so many people; until I didn’t know where I was or what day it was or where I was supposed to be. Until I didn’t know who I was apart from this feeling.

And then one day it would release. Suddenly. Cathartically. I would be alone one night when it broke: a storm of crying, words and tears and noises spilling out of me like a forgotton stockpot bursting its lid off the boil. No one saw or heard those moments. Cradled carefully away from the world, they spilled out intermittently into those rare, precious, and ever-narrowing spaces where I was safe.

These days, I recognise the signs. I trained myself to see the slow changes in reaction and ability, responding to the quiet buildup of ever-suppressed anguish. I can predict, sometimes, when a situation will make things worse. And then time speeds up around me and I know that I am lost.

I can’t tap the feeling once it’s bottled. I can’t siphon it off. The tears won’t come. Sometimes I hear a song and it bubbles up, just for a moment, and I wish for that sweet relief – the still, deep sleep that follows hours of crying – but it won’t come. To keep something so deeply buried gives the illusion of power; as if I could possibly control something so primal, so powerful. So many years spent hiding this from everyone, bricking up every outlet, so afraid for this side of me to be seen, that now there is no outlet at all. Nothing but this violent breaking apart, spewing the poison from inside of me, leaving me empty and clean. The heartbreaking relief every time I don’t damage anything in this outpouring, that now I’m safe again. The hope that I can rebuild myself. Remember who I am. Who I was.

There are no more clocks, but the nightmare is here. It is me.

Writing less; running more

A short post today as it’s all I have in me.

The title says it, mostly. Not completely.

Life feels somewhat precarious, and has for a while. Recently I had a very bad experience at work. Once the dust had cleared, among other things, it made me realise I have to start standing up for myself and being clear about my needs. For someone with anxiety issues, limited emotional vocabulary and absolutely zero confidence in her negotiating capabilities, this is a big deal. It’s taking a lot out of me.

For the first time in my life, over the past few weeks, I’ve started losing speech. Not be able to find the right words, or having to make several attempts, isn’t new for me – but not being able to get any words out at all, is. It’s an anxiety thing: I think it’s what Tony Attwood calls “selective mutism”. It’s very frightening. Objectively, it’s not happening often; but it’s enough now and in certain very public contexts that I need to have workarounds.

I’m currently balancing various parallel processes to protect my wellbeing, advocate for myself and stabilise my position. All of them involve communication, some with strangers (although, thankfully, I’ve managed to kick everything off without using a telephone. Small mercies). Being pretty awful at initiating contacts, executive function, planning and multi-tasking, and with the additional fear of losing my words, this is a significant challenge.

While the weather is good, running is a great way to escape from all that. I’m needing that a lot lately.

In the meantime, words are expensive. Meaningful words, doubly so. I’d dearly love to be posting something every week, but I’m not sure I’ll have it in me; and if I do it probably won’t be of the standard I’d like. So this is an apology for fewer (or bad quality) words, but also an assurance that this won’t go on forever. Hopefully I’ll be back with you soon!

Communication: taking the risk

Autism is a wonderfully complex thing. The word incorporates a spectrum of differences, abilities and disabilities so broad that if asked “what is autism”, I wouldn’t even know where to start. It’s a difference in perspective so vast that you have to break down the whole other reality to build a new picture, right from the bottom up.

In amongst the stinking miasma of misinformation, oversimplification and stereotype surrounding autism, non-autistic experts have grasped a few grains of truth. One is that many autistics genuinely struggle with verbal (spoken and written) communication. In my opinion the experts understate this problem, particularly with Asperger syndrome. Despite being articulate on a number of unusual topics, words in general do not come easily to me.

Coupled with an inability to multi-task, struggling to put concepts into words presents some very real and complex problems. When dealing with human interactions, realistically, I have three options available to me. I can communicate a message using clear and direct words. I can speak in indirect words, engaging in small talk and surface emotional processing. Or I can mirror the body language that is expected of me in a social situation, and which also does not come naturally.

In practise, I never mirror body language. This is because I will always need to use words at some point to interact, and so am never in the situation where neither communication nor indirect words need to take place. I know some of the theory around body language, but it was never really worth learning as when it comes down to it, I cannot apply that knowledge in real time.

I do speak in indirect words. This is because I recognise the importance of others’ feelings. In its most mercenary form, putting effort into making people feel comfortable makes them more likely to approach me for help, with offers of inclusion or of information – all of which are things I like and want to encourage. But further than that, I don’t want people to be uncomfortable around me. I genuinely care about fulfilling others’ emotional needs.

Speaking indirectly comes at a cost. Think of it in terms of learning a language. Normally when you learn a foreign language, the first stage is passive: the listening. That doesn’t mean you can’t say words. When babies learn to talk, they start by echoing a few words. But everybody understands that the actual words used are meaningless. (In autism this manifests in a behaviour called echolalia. This can be extremely subtle and difficult to detect, and I use it probably more than I realise. But that’s a whole other post!)

Learning to say words – starting with those that are easiest to articulate – comes before the stage where those words are used for communication. To communicate, you have to know the meaning. You learn the meaning much more gradually, by hearing how others use words, and in what contexts. You have to understand how that language is used before you can start to use it.

Autistics like me notoriously have problems understanding normal language. The problem manifests around things like implication and context, and is often described in terms of the autistic person taking things too literally. Sometimes this is characterised as a “delay” in “language skills”. I don’t know whether this is true – I probably won’t know until I am old enough to have waited out the delay – but what I do know is that to us, language comes differently. We use the same words, but in a very different way. And when you don’t phrase things clearly and unambiguously, we don’t always understand what you are saying.

When you consider this fact, it makes a lot of sense that autistic people actually cannot use words in an indirect way reliably to communicate a message. If we can’t interpret indirect language reliably as it was meant (although many of us do get better at this over our lifetimes), then how could we possibly use it?

Think about it another way: as a code. Non-autistic people don’t use words according to their literal meaning. Instead, they communicate in code. First, they translate their literal meaning into some different words. It looks like evasion to me, because I don’t understand it, but it has a clear meaning to them. When another non-autistic person hears the code, they have the right key to translate it back into meaning. I don’t have the key – so I have to ask for clarification. Then when I make my own indirect messages, with words that I hope will help others feel comfortable, I don’t do the translation right, and the recipient might not get the message. It can take several trial-and-error attempts for the message to get through.

A lot of the time, this is OK. With technical communications, for example, I’ve learned it’s worth following up conversations in writing anyway. In that format people seem a lot more comfortable being direct, so we can make sure the information has been correctly exchanged. At other times, delay can be a frustrating but necessary price to pay for maintaining good working relationships. But there are also times, when the personal or professional cost of miscommunication is high, when my scattergun approach of using random indirect words is incapable of meeting the immediate need.

And therein lies the rub. Because if I communicate efficiently, using the only reliable tools I have available to me, this is not socially acceptable.

It would be easy for me at this point to rant and rave about the social expectations of a majority non-autistic society and how they must be deliberately marginalising me for my differences. But it’s more complicated than that. I know that in tricky situations, where the concepts are nuanced and hard to articulate, I will appear at best blunt, and at worse outright offensive. The effort it takes me to put those concepts into words – any words – is phenomenal. So when the words come out of me there is no flexibility to soften the message. It would be a lie to say I have no control over my vocal tone, but it’s certainly not automatic – I have to concentrate on phrasing a line. When the message is that complex, my tone is all over the place. It’s rude; it’s arrogant; it’s aggressive; it’s any random word that triggers some past contextual experience in the mind of my conversation partner. No matter that in terms of intention, it means less than nothing. That tone is literally whatever default my vocal cords settle on when my whole attention is focused on the words. But what it says to my companion makes the conversation, for them, a genuinely unpleasant experience.

Reconciling my care for others’ feelings with the occasional genuine need for urgent communication is something I struggle with. Until very recently, I have always erred on the side of caution. Better to delay, and make sure the recipient is happy, than to force the message through and risk alienation. But sometimes the risk has to be taken. When the need is pressing; when, for whatever reason, my increasingly elaborate and creative attempts to use indirect methods are not getting through. When the message can’t be crafted fully in an email, but requires reciprocal interaction; discussion; negotiation. When lack of understanding on the part of that other person could have real, long term effects on my future and wellbeing.

I am learning to take the risk. It has been a painful start. I hope very much that things will get better from here.