Autism Acceptance Month: Executive Function - The Silent Burden

This week's post is a topic that hits very close to home for me, as it has only recently come to my attention: Executive Function. This is a very difficult subject for a lot of people on the spectrum, especially women, as it turns out, because issues with executive function are perhaps the least "glamorous" part of being autistic. For many of us, it is a source of shame, myself included, because these seem the simplest and most commonplace of human functions. So why do we have so much trouble with them?

What is Executive Function?

In brief, executive function is the administrative assistant part of your brain. It regulates organization, memory, and even emotions to some degree, with a little bit of drive to get things done. Executive function is the part that makes sure you get up on time, groom yourself, complete tasks in a timely fashion, don't have wild emotional swings, and all around stay motivated and productive.

What Does It Have To Do With Autism?

A lot, in point of fact. Diagnostic criteria lists impaired executive functions as one of the markers of someone on the spectrum. How this manifests in each individual may be vague, but the difficulty it causes for Autists (yet another moniker for someone on the spectrum) is no less real.

As if having these deficiencies is not enough, autistic people who exhibit executive dysfunction - particularly women and those generally considered to be high functioning - are often labeled lazy. I heard this term growing up, from parents and educators. I had no problem with tests, but had a terrible time keeping up with homework. Sometimes the difficulty of the assignment made me so anxious that I couldn't bring myself to look at it until the last minute. Sometimes, I simply found the work too boring. Other times, the conjunction of social and sensory overload combined to make any kind of motivation or productivity impossible. I was simply depleted at the end of each school day/week.

This didn't get better as I got older. In fact, it seemed to get worse. But I was determined not to be called lazy anymore. I came from farmers and military people, after all. I had no right to be lazy. I couldn't figure out why I just couldn't get my shit together.

So, I desperately pushed through the harrowing stress of jobs I didn't know were making my symptoms worse (customer service is not the best for many on the spectrum). I ignored my sensory issues because I didn't know what they were, and shoved them so deeply into a repressed state that I didn't realize they were making me sick and would turn into long-lasting illness. I felt enormous loads of guilt if I came home from working all day and ended up sitting on the couch, watching Netflix, because I couldn't muster the energy to work on homework, personal projects, or a simple task like putting away dishes. And if I had nervous breakdowns every few months and had to quit jobs out of boredom or the sense that I had outstayed my welcome, well...everyone went through that, didn't they? It was all in the service of reaching our goals...

Wasn't it?

Why Laziness Isn't the Problem

There is a difference between laziness and executive dysfunction.

Laziness is a choice, one that I can say I do make here and there, though I do not often have the time to spare, and I have to fight tooth and nail to carve it out of my day. You see, laziness is not the worst choice to make on occasion. In fact, it is said that a good dose of laziness from time to time is good for the body, mind, and spirit. So it's necessary, whether I find the opportunity for it or not.

However, there's a difference between choosing to watch Netflix because you want to that and not something else, and needing to watch four hours of Netflix before you can do anything else because your mind won't stop racing, or you've just come back from a long day of talking to people and trying to keep up a mask of "normalcy" for the sake of others that's made you mentally & physically exhausted, etc. There's a difference between making a choice and having one part of your brain or body completely hijack another part, sometimes without your awareness.

So, when you attempt to do a task and your brain and body seem to react like, "Nope, not happening," leaving you practically frozen, or it doesn't even register that it is something that needs to happen, that is executive dysfunction.

Now, you might be getting an uneasy feeling. This feeling like, "yeah, but you can't just not get stuff done." Believe me, you're not alone. Remember the farmer/military point I made above? Even writing this pokes at a long-ingrained aspect of my psyche that has to be doing something literally all of the time. It's one of the reasons I believe my executive dysfunction gets so bad. Does that sound lazy to you? Improperly motivated and poor allocation of resources, yes. Not lazy. Furthermore, shaming yourself or others over it is useless and harmful.

Executive Function & Burn Out

For those of us on the spectrum who use masks, filters, and other coping mechanisms to get by in daily life (especially if we were diagnosed late), we often find ourselves suffering from something called "burn out." Burn out often happens when you've been masking for too long, and you've depleted your reserves to the point that you simply can't do it anymore. Your executive function skills often decrease proportionally to this reserve depletion, too. Either way, it results in shut down. This can be a short-term shut down, or it may become permanent.

Discovering this literally dysfunctional relationship just over six months ago was a revelation: suddenly there were names for the inexplicable rashes of unconquerable motivation loss and the inevitable breakdowns. I wasn't lazy...well, except when I was actually being lazy...and I wasn't some asshole who didn't care that I might be a burden to co-workers, friends, and family members. You wouldn't think you would need verification of something you already know to be true, but there it is.

Knowing, in this case, however, is not half the battle. It's more like 5% of the battle. This is because unlike things like depression and anxiety, there's no specific pill or intervention that fixes this (not that depression or anxiety are all that fixable, either). The strategies and methods that autistic people can use to improve their executive functions are ones we have to create ourselves, through years of trial and error, enduring a creeping sense that our lives are getting away from us, that we could have gotten on track sooner, if there were already tools for us.

The point is that you don't go "Oh, okay, I'll just stop doing that." upon finding out about diagnosis and naming your executive dysfunction. If such tactics worked, then when people in my life said, "Just do it; don't think about it," it might have helped. It didn't. It only contributed to my sense of shame. I wanted someone to give me specific instructions on how to "just do" something that I was already having trouble completing. For that matter, I wanted clear directions for this whole "letting go" thing that people seem to think should be so simple.

In the end, executive function and burn out are deleterious because these conditions affect us in the long-term. It hits quite a few of us on the spectrum, and it gets worse as you get older, because those filters and masks and coping mechanisms you used don't work so well anymore, and they may have contributed to burn out in the first place.

In short, we didn't make the choice to be unable to do these things. It is not our fault that we're like this.

That still doesn't matter, though, and you want to know why?

We're Still Responsible

"Even if it's not your fault, it's still your responsibility."
~Terry Pratchett
This may be the hardest pill to swallow when it comes to life. Even if something regarding us happens that isn't our fault, even if it's done to us, we are, individually, still the ones who have to deal with it. That means that even if we have tried everything under the sun to make this part of our lives perform better and nothing works, society still expects us to pay our bills, and conduct ourselves in such a fashion as befits people in said society...even if it's killing us. Oftentimes we don't have the luxury of being lazy, because we're still catching up from the last involuntary episode.

That said, I don't believe in trying to fit a square peg in a round hole. It's bad for the peg; it's bad for the hole. Part of taking responsibility is acknowledging your challenges, knowing what you can and cannot cope with, and adjusting accordingly. As autistics, we don't have to do it everyone else's way; we can find our own. Give yourself breaks, and think outside that proverbial box. Whatever projects you take on to try and organize, memorize, or regulate any part of your life better, be gentle with yourself.

What We Can Do

Here's the tough part. Since we are all individually different in the way that our traits manifest on the spectrum, there's no silver bullet, no pat answer for everyone.

However, I have spent my entire adult life trying to game the system of my own deficiencies. I created my own systems, and have used them to consult others on organization tools. This didn't come quickly. This process was lengthy and included several tough personal growth practices, some major soul-searching, and a lot of trial and error with organization systems. Some of what I recommend may help people on or off the spectrum, but the efficacy of these strategies and tools will depend on a number of factors. I'm going to do a whole post (or set of posts) about this subject, because these techniques may help others, and I'd love to see us all reach dreams and potential creating tools which mainstream society has failed to provide. For now, I'm just going to share the latest app that I'm using and why I like it.

My New Task App - Tick Tick

I recently lost my go-to task app, in what was a poorly executed dismantling by its parent company. I will say nothing more on that subject.

As a result, I had to find something new, and fast. The app was deteriorating quickly, and I was afraid I would lose my carefully crafted tasks and have to start all over again from my master list (more on master lists in that upcoming post). I took to Facebook, asking my friends and my autistic women's group if they had suggestions. This was the criteria I set forth:
  • FREE - it's not even worth posting if it's not free. I already have machines telling me what to do most of my life, I'm certainly not paying for it.
  • Various organization options - previous app organized by project AND you could add tags. So, a task might look like this: "Pick up tax documents" - Project: Accounting; Tags: Errands, Administrative. 
  • Timing & Reminders - With previous app, I could set time and date, with a reminder option on the date, or some time earlier. Even better, I could set the task to repeat at the same time at just about any interval I wanted (daily, weekly, yearly, etc.).
  • Desktop & App options (preferably with a functional widget)
I received a number of responses, such as Trello, and a couple others I had heard of. Then I began to research those suggestions and other options I found along the way. Finally, I hit on Tick Tick.

Tick Tick operates a lot like the app I had, but it has a nicer UI to work with, is aesthetically sharper (which I really appreciate), and has a few more bells and whistles than I expected for the free version. The big con was that it only allows about seven folders/projects and up to 100 tasks before you have to get the paid version, so I've had to do a little streamlining, and using more tags, which appear to be limitless. I am going to try out the paid version for one year, which comes in at just under $30 for the year, and see if I like it.

I'll do a demonstration of how I use the app to make my life less cuckoo pants in that aforementioned post, but you can find it on the Android and Apple stores if you want to try it out. I'll also talk about other task apps and methods so you can compare and contrast what is meant for you. I'll try to have that post out by the end of May.

...and yes, "cuckoo pants" is a technical term.

Final Thoughts

I didn't mean for this post to get so long, considering that I only just learned about executive (dys)function and am still processing all that it has meant for my life until now and into the future. It's hard to talk about this because I want to focus more on the strengths autistics have, to show the world that we are not "broken humans". It's how I prefer to see my Asperger's, my autism. But it would be a disservice not to share our challenges...not to acknowledge and face challenges for myself. And this is a big one.

I will say this:

Executive dysfunction feels to me like the silent burden of autism. Where such things as learning limitations, sensory issues, social anxiety, stimming, and other more pronounced aspects of autism often take center stage, garnering empathy from those around us, executive dysfunction is almost like a spacy stage manager, the unseen crew of our lives, making mistakes and generally causing the production to run haphazardly. It can sometimes even feel like a jealous understudy fraying the ropes of sandbags to sabotage the entire theater troupe. Executive function is the part you don't see, but it's so integral to everything else, that when it collapses, the whole damn building falls down.

Worse yet, in our fast-paced, results-oriented world, executive dysfunction does not garner the same empathy as those other traits. People are rarely willing to give you a pass on what they like to call "reality". This means that those everyday things people just "deal with": paying bills & rent, maintaining jobs, remembering birthdays, keeping the house one is going to give you a pass on that, because it's all "just part of life" or "it's called being an adult," and they don't understand why you can't behave like one (lending credence to my assertion that "adult" should be reclassified a verb).

So, we have to find a way to work with it, mess or not. I do believe that it's possible to combine our executive function with some of our other autistic (and non-autistic) talents to find workarounds that will make our lives a bit easier. I also believe that it will never get 100% easier; it will never go away.

And for those wondering what they do when they feel no one understands this part of their lives?

I would ask anyone in my life to try their best to understand that while I do try every day, to please have compassion when I show empathy, to not try to fix it for me, to refrain from putting a negative or positive spin on it, and to not shun or berate me when I fail to live up to your expectations...and my own. Help me remember the awesome stuff I am/do, so I don't get lost thinking the deficiencies are all that I am.

That support means all the world.

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