Little Things

Photo purely for decoration. This is Florence.

When I'm low on spoons, it's the tiny little things that are hard. This week I'm low on spoons. The end of the school year, the end of my 11 year old's time in his amazing Autism Resource in primary school, school trips left right and centre, endless migraines.

So it's the smallest things that are hardest. Why? I don't know. I just made myself a cup of coffee, but I was almost out of skimmed milk. There's a new bottle of skimmed milk on the top shelf of the fridge, but getting it down and breaking the seal is just too much. Physically I could lift it down, I could break the seal - but mentally I can't. Mentally I'm unable to reach out and start a new thing, to move on from the old bottle to the new. I can walk into the kitchen, fill the kettle, get a mug, and put instant coffee in it. (Thank god I didn't have to open a new can. Sometimes I can't have coffee if I need to open a new packet, because it requires finding a packet, finding scissors, finding a peg to put on the open packet afterwards.) I can pour on the boiling water, open the fridge, add the milk. But I can't open that new bottle of milk. Sitting here, writing about it, I don't understand myself.

Outside, the rain is tumbling down. The world is irritating me, from the very large to the very small. The band of my fitbit, no tighter than usual, is cutting into my wrist so much I almost can't bear it - but I can't take it off because it won't track my steps, and I will feel as if I have no control over my day. The carpet before me is sprinkled with dirt, but cleaning it would require going and getting the vacuum cleaner from where it lives, attaching the tubes, plugging it in, and exposing myself to that awful drone. I can't do it.

My bra strap is irritating me. My dressing gown is irritating me. I lack the ability to go and change my clothes. It's not laziness. It's a kind of mental paralysis that perhaps you can't understand if you haven't experienced it. My hair is irritating me. I've managed to brush it, after a week, but it's still catching on the chair behind me. I'm more likely to throw something than move the thing it's catching on. Why? Who knows.

But I can write a blog post. What's that all about? I have no way to explain why I can write a blog post but I can't open a new bottle of milk. Why I can write a blog post but I can't engage in online conversations. If I can't understand it, I don't know why anyone else should be able to. If you can't understand the reasoning, at least try to understand the effect.

You Probably Don't Know I'm Stimming

Stimming is that weird thing autistic people do, isn't it? Maybe you don't know what it's called, but you know what it looks like. Hand flapping. Oh, yes, those weird autistic people, they go around flapping their hands like a frustrated seagull?

"WARNING: JAZZ HANDS" by waldopepper, licensed under CC BY-NC 2.0 

No. Well, yes. Yes, some autistic people flap, and it's not a bad thing. It's just a way of stimming. In fact, flapping is so identified with autistic people that in the early days of getting diagnoses for myself and my children I thought that we wouldn't be diagnosed, because we didn't flap. News flash: you can be autistic without hand flapping and lining up your toy cars. You can be autistic with these things too, but it's not an entry requirement for the club.

I didn't even know that I stimmed, yet I have stimmed all my life. Basically, stimming is self-stimulating with a sound, a texture, a sight, anything sensory, in a way that helps you focus and ground yourself. It helps you concentrate. It helps you calm down. When I walk past an iron railing fence brushing my fingers almost painfully along the rails, I'm stimming. The more worked up I feel, the more anxious, the harder I press my fingers, until the pain pushes away the anxiety. When I brush my fingers over velvet or corduroy, I'm stimming. When I bury my nose in a flower and inhale, I'm stimming. When I find myself repeating a particular phrase or song lyric over and over, or listening to the same song again and again, I'm stimming.

You can buy stim toys to fiddle with. You can buy rings that turn on your finger, fidget spinners, clickers, all sorts. But a lot of us - especially women, I'm guessing, who learn more to mask - do these things so subtly you'd never know it was happening. I've never bought a stim toy but I will run my fingers repeatedly over my phone case or repeat song lyrics in my head. If I'm fiddling with my phone while you're talking to me, I'm probably stimming so I can stay focussed. I'm not being rude.

When I'm walking along holding my thumb so tightly inside my fist that it aches, I'm stimming. It's the most frequent way I stim. Sometimes I have to do that to relax enough to fall asleep at night. It's like a tiny hug for your thumb. And if I'm walking along the street hugging my thumb because urban streets are overwhelming, you probably won't notice, unless you're really observant. I don't 'look autistic,' but there I am, out in public, subverting your expectations with my secret stims. I don't look autistic, but there I am.

The Repeat Prescription

It’s one of those days where I wake feeling so low, so anxious, I feel dizzy. The feeling of it is like a poisonous flower blooming in my chest, somewhere just under my ribs, pushing up into my throat. Everything is hard. Decisions are hard. I leave lights off because the decision to press the switch is too much. I go into my routine, put the coffee on the stove, start to make my lunch. Although I’ve been awake for an hour it’s been impossible to get out of bed until now. Now I’m up, I’m clumsy and things spill. I forget which spices I always put in my lunch. I forget where I am in the process, and find myself staring into an open cupboard when I’ve already got the bowl I need.

The cover of one of my books*

I have three antidepressant pills left. I should have organised my repeat prescription a week ago. But that’s another mountain to climb. You’re not allowed to phone the doctor for repeat prescriptions. But I live five miles away from the surgery, I don’t drive, the bus is a mile and a half away, infrequent, and a whole social challenge of its own. I could post my prescription, but the post box is further away than the bus. The post office to buy the stamp is further still. And I haven’t mentioned the problems I have with posting things. It’s some kind of autistic issue. An executive function issue, the crippling problem with communication. That old thing. But I can’t phone for the prescription because even if I explain that I am autistic, I have problems with executive function, I don’t drive, it won’t be enough. Explaining will be excruciating; and I’d have to explain every time I phoned. Using the phone is an excruciating experience in itself.

I have three days of antidepressants left, and yet again I’m going to have to rely on a family member with their own crippling problems to sort it out for me; to physically drop off the prescription and then pick it up in a few days. I’m going to run out of tablets. I’ll feel this crush of anxiety and depression even more strongly, and sorting out the problem will become even harder. Taking the walks which help me feel less depressed will be harder. It will be harder to make the decision to get out of bed, to switch on a light, to speak, let alone to organise the impossible task of getting the prescription I need.

This is being an autistic adult, a woman with a Masters degree, a writer of novels, a woman who is bringing up three beautiful children, who can be eloquent and persuasive and can turn her hand to many things. It is running out of antidepressants, because communication is so damn hard.

* re the photo. I don't have the wherewithal today to search for representative photos, creative commons rights, and so on. Nor to work out how to write this as a picture caption that doesn't mess up the formatting of the entire post. So this is the cover of one of my novels, instead. It's a good book. It's available on Amazon.