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.

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