On Being Both Autie and Addie

As those of you who follow me on the Book of Faces know, for some time now I have become more and more certain that I am not only autistic, but ADHD as well. It’s true that some things like sensory overload and the ability to hyperfocus can be common to both conditions, as is my quite atrocious Executive Dysfunction. But that doesn’t explain things a lot of other things I’ve noticed about myself.

 I used to think it wasn’t possible to be both, and a test or two I did initially suggested that I wasn’t. But then I found better tests, and some uncannily accurate videos, and began to think and explore more. And now? I’m fairly certain, and becoming more so the more I explore. I call it being both ‘Autie’ and ‘Addie’.

Among the things I’ve noticed so far – and there will probably be more, as this journey is really only just starting –

- my erratic attention span and high distractibility, leading to ‘daydreaming’

- my frequent restlessness, both physical and mental

- quick frustration or boredom, with people, conversations, tasks and even jobs

- my need for stimulation and variety interspersed with periods of rest

- difficulty following verbal instructions

- chronic disorganisation, with major panic if (when!) I lose something important

- difficulty with time-keeping/awareness

- impulsiveness, ‘snap’ (and often disastrous) decision-making

- frequent job-hopping in my younger years and changing my major at university several times…

you get the picture.

And yes, I have the classic DOOM piles (or boxes, or bags, or overflowing drawers or cupboards…) even though my flat is way too small to accommodate much clutter. Like the two big boxes of stuff that need to go into my underbed storage which have been clogging up my tiny living area for WAY too long… Or the mountains of clean laundry that sometimes go unfolded and put away for days… Or the books piled up ON TOP of the bookshelves because I keep acquiring more but have nowhere to put them... And I’m not even going to talk about the dishes. Let’s just say they’re not my strong point.

So, yeah. Quite a bit of Addie stuff going on here.

In my earlier years, before I even knew I was Autie let alone Addie, life was …pretty chaotic. Not just in terms of actual mess or disorganisation - and there was plenty of that! - but in terms of the emotional cost. Depression, self-hatred, shame and self-blame, constantly telling myself how worthless, useless and stupid I was, over and over. With tears running down my face, I would be convinced I was a waste of space and should just do away with myself. I managed to overcome some of this when I discovered my autism and the autistic community, but there’s always been another layer, and now I know what it is.

So how does being both work in practise? (And bear in mind, this understanding is still a work in progress, as more light gets shone on my life.)

Sometimes, they help each other out. For instance, if I have something important to go to the next day, my Autie self will see me prepare everything I need the previous night. Or if I’m going on holiday, the Autie self will start making a list days prior, and ironing, folding and packing the day before. Because I KNOW that if I don’t, my Addie self will panic and run amok at the last minute, forgetting things, being late, and arriving in a highly distressed state, if I arrive at all.

On the other hand, my Addie self gives my rather stodgy, rule-bound Autie self a lift, pushing me out the door or into doing something different – the novelty/stimulation thing, without which I’d be trapped into a very boring life indeed. It’s seen me move around the country, launch into new activities, go out to events I probably wouldn’t otherwise, and generally take risks my Autie self quails or quibbles at.

But frequently the two are just in conflict. My need for stimulation and variety clashes with the need for order and calm. My Autie perfectionism battles with Addie impatience. My Autie needs for tidiness and keeping stuff runs up against my Addie desire to just throw the annoying stuff out the window or into the rubbish. My Autie wish for cleanliness is confronted by my Addie inability to focus on household tasks until they’re done. My Autie self has evolved more-or-less functional routines that get at least some essentials done, but Addie self (or tired self) sometimes rebels against them. Sometimes I can find a way out of these impasses, but other times there’s no winning. I can end up frozen, confused, and overwhelmed, not knowing what to do.

Sometimes I don’t even know which is affecting me in any given moment. If I can’t seem to get out of my chair, is it Autie inertia, Addie paralysis, or simple tiredness? (Having Chronic Fatigue Syndrome doesn’t help.) If I don’t start a task, is it because of Autie perfectionism, or Addie dislike of chores, or my Executive Dysfunction? Sometimes if I know, I can overcome it, and other times it just doesn’t matter. I’m screwed, any which way.

And yet still other times, they converge with each other in the worst ways, eg when both my Autie and Addie selves become so overloaded that all I want to do is curl up in some safe, dark, quiet cocoon until my jangled nerves stop screaming.

There are ways they nullify each other’s effects, like the Autie orderliness I mentioned above that prevents Addie panic. But while my Autie self has helped me to overcome or prevent a lot of typical Addie problems, for instance I use a lot of helpful ‘tricks’ – multiple alarms, to-do lists, lists, notes, visualisations, etc, etc, etc, to stay organised - overall, it ain’t easy being both.

Being Addie is possibly having a stronger effect on my life right now than being Autie, because the realisation is far newer and to the forefront of my mind, not to mention I’m gradually stopping all the ways in which I suppressed it (I did the same thing with my autistic traits when I first realised I’m Autie). You have to adjust to a new knowledge of yourself, re-evaluate your mindset/approach to life, and I’ve largely done this around being Autie. But not for Addie, not yet. I don’t have a formal diagnosis either, it’s expensive and there are long waiting lists, especially for adults. So it’s still a work in progress.

But I’m getting there. And my life makes so much more sense now. Perhaps, finally, I can stop being ashamed of simply being me.

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.

That Executive Dysfunction Thing

Lately, I’ve noticed quite a few posts about executive dysfunction disorder in autistics. It’s caused me to think about my own. It’s not something I normally talk about much, and I think it’s the same for others on the spectrum, because why would you want to talk about something that makes you feel a failure?

But now it’s coming out of hiding, and I think this is good. The more we air our difficulties, the more we can accept it as part of our autistic nature, and learn to work with it rather than bash ourselves up for it. We can stop feeling like there’s something ‘wrong’ with us because we ‘can’t get our lives together’. It’s both a practical thing and a self-esteem thing, in other words.

For me, it was an issue long before I had any idea that I am autistic, or that there was a name for my disorganised state. Though my house is (usually) tidy, it being really clean is, shall we say, a less frequent occurrence. Dishes pile up, floors get grubby, the toilet needs cleaning, dust balls threaten to mutate into a different lifeform. Then I will have a sort of mad dash around, cleaning and scrubbing and washing and vacuuming, ending up exhausted, but feeling pretty virtuous!

In the past, however, these cleaning jags often meant I’d start cleaning one thing, say the bathroom sink, then I’d notice the mirror was dirty too, and start on that, and then think ‘Jeez, I should really do the bathroom cupboard’, and empty it out, but before I finished that, I’d see that the wall above was dirty… And then I’d go to fetch something for cleaning it, and notice that the wastepaper bins needed emptying, and while I was doing that, I’d see something else which needed doing, but in the middle of doing that, I’d wander by the bathroom and remember I hadn’t finished that either… before I knew it, hours would have gone by, and I’d have half a dozen incomplete tasks, stuff lying around everywhere, and be too drained to finish any of them.

I’d also often forget appointments, uni lectures, etc, or have a mad scramble to get to them on time. I would frequently arrive late, all sweaty and anxious, feeling like a fool, and never quite recovering my poise. Then I’d go home and crumble into tears, vowing to ‘do better next time’, without having the slightest idea how. I often felt like I was stumbling from one disaster to another, like a firefighter battling summer drought fires - as soon as you put one out, another starts.

And now? Over the years, I’ve learnt a lot about self-management. Appointments go on my calendar, hanging in a prominent place. I have a daily ‘to-do’ list whiteboard, another on the fridge for the shopping list, and I could really do with a third for the ‘weekly to-do’ list. I also have a whiteboard by my desk, for writing and other creative tasks. I have some fairly rigid routines around evening tidying-up, so that I don’t wake up to a mess. I use my cellphone or my bedside clock as an alarm, and a kitchen timer. I work hard on staying on track.

And yet. I sometimes still arrive at things late. I don’t necessarily get around to finishing my ‘to-do’ lists. Things get shoved to the next week’s list, and the next, and the next. I forget to use my various devices. And so on. Not to mention that I have CFS as well, and other health issues, that make cleaning even more difficult than it used to be.

And one thing I’ve never managed to do much about is erratic sleep patterns. Just last week, talking to the dietician (I’m pre-diabetic), she was talking about the importance of ‘getting back’ to regular sleep habits, so that my meals get regular too. I was too embarrassed to admit that I don’t really have regular sleep patterns to get ‘back’ to! I might be up till two am one night, sleep in till ten am, then crash early the next night. I force myself into ‘proper’ bedtimes when I have to, but I never seem to be able to keep to them for long.

On a daily basis, keeping myself ‘on task’ means, even now, with all the ‘box of tricks’ I’ve garnered, a constant jarring wrench of my attention back to that task, over and over. And, I must emphasise here, I don’t fit the criteria for ADHD/ADD. At all. It’s just that, well, I see things, or I think about things, the state of the nation, the state of the world, the future, or ooh look at the pretty butterfly, or the lovely pattern of the leaf shadows outside, or God that wall is grubby, and should I clean it now, or, or, or… and then I have to remind myself - hey! You’ve got a job to finish here! Pay attention! Repeatedly.

It’s rather like you’re trying to go for a walk, only you have a ‘gammy’ leg which means you keep staggering off the path. But a friend keeps dragging you back on. Except the friend is also you. Imagine how difficult your progress would be, or how little you’d make. That’s what it feels like.

But I’m not sharing all this for sympathy, or hints, or anything like that. No, the point of this post isn’t really any of that. It’s about my amazement at people who don’t have EF issues. I’ve been watching them my whole life, and I still don’t know how they do it.

You know the sort of person I mean. The flatmate whose room is always tidy, or the workmate who effortlessly completes their daily assignments. The neighbour doing garden work at ten am Sunday, chatting to a mate or his wife at the same time, then going out for the afternoon. The relative who goes shopping without even a list, and yet never seems to forget anything important. They just… do things. One task, after another. After another. All day. Every day. Without any seeming effort or trouble keeping themselves on task. With no jarring or dragging. Huh.

Sometimes I’ve seen such people complain about getting ‘distracted’ or feeling ‘scattered’, but as far as I can tell, it’s NOTHING like what we experience. (I’m sure that there must be some NTs who have serious EF issues. I just don’t know any.) (I’m sure there must be autistics who don’t have EF problems either.)

How DO they do it? How does it feel to be like that? I have no idea. I look at them and know I can never be like them, live like them, and it adds to my already strong sense of alienation from the vast bulk of humanity. As if I needed anything to increase that.

And given my age, and how long I’ve been working on this, I don’t think it will ever be any different. The only thing I can do is to continue to work on self-management, and on self-acceptance. Not to mention throwing off the judgements of others.

Because the judgements we place on ourselves are hard enough to shake off. We really don’t need more of that, from people who just don’t understand, as it only makes our lives even harder, and doesn’t solve ANY of our problems.