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.

Disconnect

Someone at work today asked how I was coping with the long nights. People are aware of my SAD. Offhand, I said I’d been OK up until about the last week or so, but I was getting a bit tired now. No big deal.

Then I thought for a minute about when time got away from me. Maybe it was a bit more than a week. Maybe two. Perhaps three.

I no longer have a sense of time.

I remember the moment I first felt panic that the minutes were slipping away. It was in the middle of a Saturday morning, on my way to the shops, when that afternoon I had somewhere to be. There was that horrible sinking feeling in my gut, chasing the hours that slid through my fingers, realising how completely I’d misjudged. I panicked. Rushed my shopping, called a taxi. Lost the taxi. Found the taxi moments before it pulled away, a breath away from being just one more no-show. Deep breaths, shaking, as we crawled through traffic on the interminable journey home.

I made my afternoon appointment, overloaded, but invisible. No one saw it: not for a moment; not the merest flicker. I passed, exquisitely. I paid with the Sunday. It wasn’t enough.

Three weeks ago.

In winter, I cannot cope with overload. In winter, I do not have the capacity to recover myself. There is not enough daylight, and not enough time. I cannot expose myself to the risk of uncertainty; I cannot allow myself to panic. I must be slow, quiet, centred. I must be calm.

On that Monday morning I went into survival mode. The plan had already lost the non-essentials several weeks before. But this was the morning when I drew a breath, and relaxed. I forced myself to slow down, to breathe. Not to stop, but to keep moving, no matter how slow. Don’t fight it; just be. It didn’t matter if I was late. It didn’t matter if I didn’t show. Nothing mattered, but to be calm. To keep moving. One step at a time.

It’s a curious feeling, to be centred in the eye of the storm. I am slow, while the world spins. I am quiet, while the world screams. I am; and somehow, strangely, the world is not. Steadily, methodically, I move through this madness without feeling. I am calm. I do not connect. Displaced from reality, I am serene.

I do not want. I do not feel. I am not hungry or thirsty. At night I wait passively for sleep that takes hours to come. The choice to begin each day is one I no longer allow myself to make; for if I allowed myself that choice, then I would choose wrong. I know this, without feeling sadness. I feel only the weight of my self as I sleepwalk, dreamlike, through the wild cold winter. I still know that the winter will end. I still remember what it was like to live.

I do not stop. I must not stop. Until it ends.

One step at a time.

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.

Depression and overload: what does self care look like today?

Overload is one of the easier autism-related concepts to explain to a non-autistic person. Basically, it’s what happens when you’re just too tired to cope. Strangely enough, the vast majority of people are familiar with this concept!

The difference with autism is the reason for the overload. Often because of sensory processing difficulties, such as hypersensitivity to sound, bright colours or smell, the wrong environment can put an autistic person in a perpetual state of overload and exhaustion.

My understanding of my own sensory sensitivities and triggers is still in its infancy. With the recognition of my autistic identity came the framework for realising that some things I find difficult might not actually be my being fussy or demanding, but because I actually experience the world in a different way. Even with that knowledge, though, deciphering my sensory environment and the aspects that can send me home practically incapable of changing my clothes, let alone cooking dinner for myself after work, is an ongoing process.

At some point I’ll write a bit more about overload, recovery and how I manage those risks in the workplace; but that’s not where I’m heading with this post. This post is about choosing the right self care at the right time, and how that’s not always as easy as it looks.

As well as sensory overload, I’ve also struggled throughout my life with depression. Although I didn’t seek help until early adulthood, looking back, I was an awfully depressed child! I spent some time at university not being depressed, but my life has really been arranged since junior school in bouts of relative mental “wellness” punctuating a background of depression, rather than the other way around.

Now the problem is that the symptoms of depression and overload, on the face of it, look identical. But they’re different.

Consider…

You have to stop. Stop now and curl up somewhere quiet. Your brain just wants to cry. It’s hard to think, even to move. So you move slowly: to protect yourself, to conserve your strength. You can’t cope with anything more.

You cancel social activities. You stop going out. You restrict exercise to the routes you know, because you just can’t cope with the unexpected right now. It’s almost too much effort just to go out the door. You don’t enjoy the things you love. You just need to stop. Stop now.

And at this point I ask myself: which is it? Depression or overload? Is there too much, or too little? Is there just too much of the wrong thing?

What does self care look like today? Is it a quiet night in with the lights on low, with a book and a blanket and a hot drink? Is it a choir rehearsal: immersion in music until you can feel the sound in your bones; keeping up with instructions; singing under bright lights? Or is it an evening run in the fresh air? Can I risk being up late, or do I need that sleep more than usual? Am I moving too slowly to keep to a schedule? Do I need to protect my senses tonight, or stimulate them?

What are the costs of choosing badly? What’s on at work tomorrow – what could go wrong if I’m having a bad day? Who am I meeting with? Can I afford to risk it? Or maybe there’s something I’ve been looking forward to on the weekend. Is it really worth jeopardising that?

What did self care look like last night; last week; the week before? How many choir rehearsals have I now missed? Are there real things in the medium term, whether necessary or just desirable, that will be jeopardised by my not doing something tonight? Does it matter whether I’m broken tomorrow if the alternative is unpaid bills, or not seeing a good friend for a holiday this year?

I’ll know if I chose wrong. Overloaded me can’t safely drive: she can’t process the visual signals quickly enough. Depressed me can, and probably should – she just doesn’t want to go out. Overloaded me will suffer in a choir rehearsal. Depressed me will suffer if left alone with her thoughts. All the me’s can enjoy a good book, but depressed me will be restless afterwards, and overloaded me might not even be able to focus on the page. If not allowed to recover, overloaded me will be exhausted at work the next morning. If left to fester, depressed me will struggle to get out of bed. But none of these signals come before the event.

Right now I’m overloaded. Last night I wrote a list of things I couldn’t currently do, when I’d last been able to do them, and when I anticipated being able to do them again. I looked at the list and realised I had bills piling up because I’d not been able to pull myself together to read the meters. I realised that the next time I expected to be able to make a financial decision involving more than a grocery shop wouldn’t be for another week or three. Not making that decision has implications, as does making the wrong one. So today I know that self care looks like clearing my schedule and asking nothing of myself but to fix up those bills, and maybe by the end of the day my head will be clear enough to think about finances. Sometimes it’s that easy. Sometimes it’s not.

It’s an interesting dilemma, when you’re not in the middle of it. I wonder: what would you do?