Knowing What To Do and When To Stop.

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Imagine that the Autism spectrum is a cluster of one-thousand random stars.

Imagine that each star represents a part of Autism, and that all of those stars are connected inside the brain of somebody who is Autistic.

Not everyone is ‘on the spectrum somewhere.’ That is a misunderstanding. Those that are, experience all of the parts of Autism to varying degrees. You cannot be ‘a little bit autistic’: all autistic people have their dimmer stars and their brighter stars.

Some are more apparent to ‘neuro-typical’ people than others. But some of the most debilitating traits of Autism are completely invisible.

Executive functioning is one of those one-thousand stars. It is something I am bad at when I am tired, anxious or hyper-focussed: it is an admission that I never dreamed I would share; it is something that I still do not fully understand.

***

Executive function refers to all the thinking skills that help you cope in your daily life and get things done. It is the ability to make a decision, change a plan, multi-task, stop a task, regulate emotion, filter-out unnecessary sensory information, remember a full set of instructions, carry-out a task in order and create a sensible ‘balance,’ etc.

Having poor executive functioning is a bit like being an Alexa-robot: you respond well to direction and can carry out clear instructions with speed and precision, but without those instructions you don’t really function at all.

It was one of the first indicators that pointed towards Autism in me.

I was thriving at work having been promoted: I would finish my jobs and then do someone else’s. I was obsessed with progression. I was fast and thorough. I was obsessed with intricate marking, data analysis, grades, inspiring planning, inventing new initiatives, delivering the best-lessons-ever, aiming for beyond-outstanding, creative-contexts, innovative coaching, and perfection. Addicted to making everyone’s lives easier and frightened-to-death of letting somebody down.

I was giving my robotic brain work-related instructions constantly. I was wholeheartedly devoted to my career: married to it: the children, their education, their wellbeing. It became irrational. I was striving for unrealistic goals. Feeling somehow responsible for everything that went wrong.

I could not stop.

Consequently, in the weeks building up to my 31st birthday I ate nothing. I drank a bottle of wine every night whilst working in my one-bedroomed flat. The heating was broken and, with no double-glazing, I was freezing cold. All of the light-bulbs needed replacing. I hadn’t slept in my bed for seven months, choosing to work on the sofa by candlelight where I would accidently-occasionally fall asleep. I spent a lot of time checking the flat, alert to every sound: scared of fires, burglars and tiny muffled creaks. I acquired (and ignored) six parking-tickets, because somebody was parking in my allocated space and I didn’t have the social skills to challenge it, nor could I overcome my ‘uncertainty anxiety’ in order to give myself a full set-of-instructions to pay the fines.

That is probably why they did it.

Then it was my 31st birthday and everything crashed.

I could not cope with the thought of Jack coming into my flat but he insisted.

He, nor anybody, had been allowed inside it for months.

To the left was the bathroom, the cleanest room in the flat, save for the dogged-mould coming in from the roof-hatch and developing beneath the laminate flooring. Straight ahead, my bed room door remained firmly shut, as it had been for weeks. We walked into the lounge. A chill licked our legs and there was dampness.

It was desperately cold.

I looked around as if seeing it all for the first time.

The sofa, where I had been sleeping and working for the past seven months, was covered in blankets, a perfumed-pillow and a king-sized brushed-cotton, winter duvet. My hot water bottle was there, waiting to be filled, and Jack went to fill it up in the kitchen. My heart sank as he neared the sink. He didn’t flinch when he saw the pile of neglected washing-up, the tea-stained work tops or the collection of empty wine bottles that had filled a whole cupboard, and were now overflowing onto the floor and the preparation space beside the sink.

Don’t tell anyone that this is what I have become.

I was struggling to understand money. My car needed fixing. My car had been clamped because it wasn’t taxed. I had lost contact with nearly all of my friends. I had a list of jobs to sort out with the bank. I wasn’t repeating my prescriptions. Things that were not part of my plan-for-the-day couldn’t be processed, and my priorities never included myself. I had to fight my own brain to do simple, every-day tasks like open-the-curtains, wash-my-clothes, and answer-a-text. I could not find the flexibility in my mind to deal with unexpected traffic, weather, phone-calls. I couldn’t do anything outside of my ‘focus’ unless it was instructed, and nobody was instructing me about my money, my health, my car, my routines, my housework: it was all a secret-mountain.

I beat myself up in the mirror.

You are alazy, useless, broken, odd, selfish, difficult, lonely, disconnected, fake, burdensome accident.

I didn’t know then that I am Autistic.

My inflexible-brain ‘hyper-focusses’ on one thing at a time. It doesn’t know when to stop. It won’t stop. It doesn’t know when I am tired. I have associated obsessive-compulsive disorder. My day must be carefully planned from start-to-finish so that ordinary things get done, and any ‘extras’ or tiny-little changes or differences cause anxiety or cannot be processed at all. I zone-in on one-thing when I am getting ill. I work harder: I am working on this. Interestingly, on my best days, I can adapt to the unpredictability of life a little easier. But I cannot change my brain.

Try and get some sleep,” Jack said, “and I’ll watch over the flat tonight.”

I will never not be autistic, but I have learned a lot since my diagnosis. I know that I am a bit like a robot and I need short, clear instructions: but there are many things that I can instruct myself to do for the hours, days and weeks ahead, now that I am finally getting to know my brain.

That is my limited understanding of executive functioning.

Alexa, dim the lights.

2 thoughts on “Knowing What To Do and When To Stop.

  1. Aw…this part made me want to cry

    “I beat myself up in the mirror.
    You are a lazy, useless, broken, odd, selfish, difficult, lonely, disconnected, fake, burdensome accident.
    I didn’t know then that I am Autistic.”

    I am still blown over when I read things like this because I could have written it myself – I HAVE written it. But when we’re in it and don’t understand why, it feels like we’re the only person on the planet that feels this bad – that is this bad. I hate that we felt and feel this way. It doesn’t seem fair.

    And can I ever relate to this too:
    “My inflexible-brain ‘hyper-focusses’ on one thing at a time. It doesn’t know when to stop. It won’t stop. It doesn’t know when I am tired.”
    Yes, our brains catch fire and nothing will put them out until the fire is finished burning. Sometimes it goes out abruptly but sometimes it burns and burns and all we can do is wait.

    Thanks for sharing. You are making a difference 🙂

    Liked by 1 person

  2. Wow! Heart wrenching stuff. I do hope that things are getting better for you Claire as you are learning how to navigate your way through the world of Autism. I’m sure you must be finding the writing really cathartic. I’m finding it so interesting and very inspirational. Hats off to you for your unbridled honesty. X

    Liked by 1 person

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