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.

Advertisements

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.