Wednesday 12 January 2022

My Struggles With Executive Dysfunction

I’ve been thinking a lot about Executive Function Disorder. It’s mentioned frequently in the list of autistic co-occurring conditions, yet no-one really talks about it all that much. But it’s nonetheless one of the biggest problems for many of us.

Executive Function disorder (EFD for short) happens when there are differences in the chemicals in the brain which affect the frontal lobes, leading to problems with things like organisation, concentration, time and task management, prioritising attention, problem-solving, short-term memory, multi-tasking, impulsiveness and emotional regulation. It’s frequently linked to ADHD and autism, where we’re born with it, but it can also occur as the result of injury or illness which affects the same parts of the brain, eg stroke or Alzheimer’s.

This is me.

EFD is something I struggle with. Every. Single. Day. I work hard, every day - and I do mean hard - on Getting Things Done. My days are a constant wrenching process of me telling myself to do things, setting up reminders to do things, nudging, pushing and prodding myself to do things, even yelling at myself (usually silently, but yelling just the same) to do things. I make all kinds of prompts for myself – LOTS AND LOTS of lists, timers, alarms, notes in prominent places, scenarios in my head, etc, etc, etc - in my attempts to keep myself, my day, my house, my belongings, indeed my entire life, on track.

On good days, I’m moderately successful, complete at least some tasks, and feel reasonably okay about myself. I can give myself a pat on the back, and a breather at the end of the day. I feel like I’ve achieved something. Been something, or somebody. I’m okay. Sometimes I even have several good days in a row, and in the past, I would fool myself that I’d ‘changed’, ‘sorted myself out’, gotten rid of my ‘demons’. I was gonna be ‘all right now’. Not anymore.

Because, inevitably, come the bad days. The failure days. The days where I get out of bed only when something aches, or my body’s needs drive me. When I shower only when I can’t stand my stink anymore. When I eat only when my blood sugar plummets or I feel sick from not eating. When I feel stuck on the couch, looking at all the things that aren’t done, but somehow unable to get up, instead playing games on my phone, reading or just blobbing in front of the TV, or getting obsessed and spending hours online researching something. These are also the days when I tend to make it to appointments by the skin of my teeth, or go grocery shopping so late that half the perishables are gone, and all the sale bargains.

Often a reaction will set in, usually in the late afternoon or evening, when I become so angry and disgusted with myself and/or the state of my house that I rush around in a fury, trying to do as many tasks as possible, running my butt off till I collapse in exhaustion. But even once I do start a task, it’s all too easy to get side-tracked. I can end up with several jobs started, none finished, too tired to complete any, and feeling worse about myself than I did before. Some days, I even end up having a meltdown, or literally bursting out of the house for a walk, so that I can feel I’ve ‘done something’ with my day.

And of course I have to battle with myself to get any creative work done (even this blog post, which has been on the back burner for literally months), no matter how much I love doing it, no matter how much I *want* to do it, until the sheer pressure of both self-disgust and the images and words themselves force me into doing SOMETHING.

I could go on and on – there’s the whole thing, for example, of how once I set up a list, I won’t want to do anything on it, or how I’ve only achieved some measure of emotional regulation in the later stages of my life, or my always-irregular sleep patterns - but you get the picture, I’m sure.

 I’m a mess.

There are basically only four things that can propel me into action.

Firstly, dire physical need, like an achingly full bladder, extreme hunger or thirst, or being so tired I fall asleep on the couch.

Secondly, external impetus, eg a doctor’s appointment, occasions I need/want to attend, or needing to return books to the library before I gather fines. (And there’s usually A LOT of stress involved in all of these, as I check and double-check and triple-check EVERYTHING.)

Thirdly, my own disgust/anger/impatience with myself, as above.

And fourth, the urge to be creative, which has often been my saving grace, but which needs to surge up pretty strongly to overcome my natural inertia. Hence the weeks of creative inaction that are sadly all too common.

And that’s it. There is no ‘natural’ way of getting myself moving. No natural connections in the brain that enable me to ‘just do things’. I have to force myself, or be forced by external circumstances/demands. There is no other way.

It doesn’t help that my Chronic Fatigue Syndrome means I can’t keep on going once I start, I need frequent rests, but once I do stop, getting going again is, well, not easy. Ageing and related ailments also don’t help. I get more and more reluctant to start tasks that I know are going to be extra difficult. And of course, any change, any disruption or extra stress, just makes everything worse. I moved house last year, and to get back to even a degree of good habits has required an added effort.

I have improved over the years, and made progress in developing a more ‘organic’ way of responding to situations, as opposed to the harshness I used to punish myself with. But it’s still a struggle. Nothing ‘just happens’. I don’t know how other people just …get up and do stuff, going effortlessly and smoothly from one task to another. Why, I’ve always wondered, is it so easy for them, and so hard for me? I have absolutely NO – zero, zilch, nada, nix - natural impulses that keep me moving in this way, it’s an endless effort, and all too often, I still end up on the couch, telling myself to ‘get up now, get up now, NOW DAMMIT…’ Sigh.

In the old days, before I knew I am autistic, I never talked about any of this. I rarely mention it even now. It cuts too close to the bone, not surprisingly, as I’ve spent a lifetime feeling ashamed of ‘not being able to get myself together’, and going to great lengths to hide it. Some people have judged me ‘lazy’, ‘useless’ or ‘just not trying hard enough’, not realising how hard I’ve always had to work at keeping any order at all in my life. The worst part is that I believed it too, for too long, assuming I must be deficient or inferior for having to work so hard, and yet still not being able to be like other people.

And to be 100% honest, even now, it’s the one thing about my brain I would change, if I could. Other aspects of my autistic self, I’ve learnt to embrace or ameliorate, eg sensory issues. But this continues to be the biggest bugbear of my life, on a daily basis. So I will continue to wrestle with it, because, ya know, I want a life, I want to achieve things. Not to mention I don’t like living in filth.

But after 60+ years of trying, I’ve accepted that I can only manage it, not get rid of it, and I’m tired of living in shame, tired of hiding my ‘bad habits’, simply because my brain is different. This is how I’m built. On an online test for EFD, I scored 51 out of a possible 64. Not much I can do with that! I suspect that I would have scored even higher when I was younger.

But a frequent mantra of mine in recent times is ‘you are what you are. You can’t be other than what you are’. It applies to EVERYTHING that I am, including this. Learning about EFD, like learning about autism, has made all the difference to my self-esteem. I am what I am. I can be no other. I shouldn’t have to hide that true self.

And nor should any of you.