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.

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.

Dealing with change

Change is hard. It’s hard for everyone, to a degree. But for an autistic person, dealing with change and disruption to routine is on a whole other level. The sheer level of confusion and disorientation is indescribable (at least for today). The elephant panics. A lot.

The organisation I work for has been implementing some big changes recently. I knew they would be hard on me, so I made a plan. Let me be clear: I planned my whole life for the affected period around navigating this change. I did some batch cooking and filled the freezer with healthy food, so I wouldn’t have to cook in the evenings. I scheduled my work tasks (with the permission of my manager) around the disruption. I pulled out all the CBT techniques I learned last year for maximising personal resilience. It didn’t work.

The advice I would give anyone on the spectrum preparing to navigate big changes in their life – especially at work, and definitely if the change is the biggest you’ve ever had to deal with – is as follows:

  • First and foremost: look after yourself. No, seriously. Make a list of all the things you need to be physically and mentally healthy (food, exercise, quiet time, sleep, special interests if you have them, etc), and prioritise them in your schedule. Plan ahead with the basics as much as you need (I have coloured pens and everything!). And if you have friends who understand, let them know what’s coming. They might be able to help.
  • At work: don’t underestimate the impact. If you think it’s going to be bad, talk to your manager at an early stage (or another manager, if your own line manager is unsympathetic) to see what options might be available to you. It’s always better to manage expectations than to have to explain yourself after the event.
  • Be proactive in asserting your needs. As soon as you become aware of the change, figure out what you need and make sure the right people know about it. Even if you don’t know exactly what you need, try to identify the people who might need to know and pave the way in advance for those conversation to happen.
  • If there is any risk of meltdown at work, you need to make plans with your line manager (and/or a trusted colleague) for what should happen if things get out of hand. I have anxiety issues, as well as an apparently chronic inability to look out for my own needs, that have brought me to the brink of meltdown in the workplace on multiple occasions. Tell your manager what you need them to do to diffuse the situation. Make sure the plan has space for them to enforce any consequences for unacceptable behaviour, but make it clear that they need to wait for you to calm down and recover before this will have any effect.
  • And finally: always know where your safe space is. You never know when you might need it!

Good luck!

Being thankful

On Saturday I wrote about building safe spaces. Today I want to talk about maintaining them.

Maintaining isolated safe spaces is easy. Living alone, I come home to an empty house where I can control of every aspect of my sensory environment. Struggling with visual processing? Turn the lights down, put on some soft music and close your eyes. Too much noise? Turn off the radio, put on slippers and carry a bubble of silence around you as you move. Completely overloaded and incapable? Curl up in a blanket and make sad noises, for as long as it takes. No one will judge you.

Some of my safe spaces were built with the help of allies. Finding out that other people could help me was a massive step in coming to terms with my autistic identity and embracing what that meant for my future. The help individuals have given me in building and maintaining safe spaces is something for which I am profoundly thankful.

Expressing emotions, including gratitude, is something I struggle with. But I’ve learned that it’s very important to let people know when they’ve done something special. It feels good when someone thanks me, and I know that’s not just an autistic thing! It doesn’t have to be complicated – you can write a template script for thanking someone. And it’s absolutely OK to email or write a “thank you” note if you (like me) struggle to approach individuals in person.

As well as making people feel good (which is only fair), a thank you reinforces the helpful action. A person reminded that they’ve done something good is more likely to remember and be willing to do the same thing next time. So as a mechanism for maintaining the sanctity of safe spaces, and sometimes for finding new allies, gratitude can be powerfully effective.

I don’t thank people indiscriminately. There’s a fine line between thanking someone for going out of their way, and thanking them for treating me (as an autistic person) with the basic dignity and acceptance they would afford to any human being. The line isn’t always clear, and varies for different people. But for me, here is what I aim to do:

I will thank someone for doing a particular bit of work, or for helping me with a task I was struggling with (whether or not due to my autism). We all have different strengths and weaknesses – maybe I will be helping them the next day. But I will not thank someone for working with me. Every person has a different working style; thanking someone for accommodating mine implies that mine has inherently less value than theirs.

I will thank someone for changing a planned activity, or going against the majority preference, to accommodate my needs. That might be choosing to go to a different pub for dinner because the first choice was too noisy or overwhelming. But I will not thank someone for being my friend. If I have to thank someone for tolerating my presence in a social environment, then they are not my friend.

I will thank someone for providing clear details in written format, whether after a meeting or in preparation for an event. That’s something most people don’t need and I do, so I’m always grateful when it’s accommodated. But I will not thank someone for listening to me and taking my words at face value. I say what I mean: nothing more, and (unfortunately!) nothing less. I don’t need to apologise for the words someone else has written in the gaps between my own.

I will thank someone for quietly explaining my body language or behaviour to avoid a misunderstanding. Particularly when I am stressed, it is very difficult for me to explain without making things worse. But I will not thank someone who knows me for letting me stim (rock or fidget) in a safe space without interruption. That’s a basic need, and they know that. I should not have to apologise for not masking in their presence.

But on a final, more positive note: one thing I will always thank a person for is if they have seen me in distress and done the right thing. Actually, I will thank anyone who has done their best to do helpful things, even if they got it wrong. The people who genuinely help you out when you’re melting down in a public place, or non-verbal, or shaking so hard you can’t sit still – the people who at that point still treat you as a person – are the people you want and need in your life. For those people, I am truly thankful.