(Full credit goes to Luna Lindsey for the inspiration behind this title.)
Merry Christmas (eve) everyone! And happy last night of Hanukkah. It’s not quite Kwanzaa yet, but happy Kwanzaa too.
After living in Massachusetts for so long, I’ve been spoiled by the expectation of snow for Christmas. This year, I’m living in New York City, and it’s warm and raining.
I’ve had this post finished and sitting around on my computer for over a month now. And the reason why it’s often so difficult for me to post regular updates happens to also be today’s topic!
As many an aspie already knows, breaking up a task into steps and then prioritizing those steps can be one of the most difficult aspects of any autistic undertaking. (Ironically—or suitably—I almost gave up writing this post weeks ago because I couldn’t think of a title, and felt I couldn’t start writing without one.)
Once those precious, illusive steps have started to materialize it can feel overwhelmingly important to keep and fulfill them in the “correct” order.
After all, if a step is delayed or skipped over it might vanish, and then the whole house of cards will tumble down and blow away, and you might as well give up entirely, because reassembling that task is simply going to take too much time and energy. And obviously that energy can’t be wasted on “non-essential” things—like writing, job hunting, chores, or hygiene—when what little remains is barely enough to take care of basic needs.
And thus we come to the heart of today’s topic…
Why in the world is it seemingly so difficult for autistics to get anything done?
To make a long story short: We’re running a complex indie operating system in a world of Windows PCs.
The struggle with task organization is something that every autistic experiences, yet it is one of the most difficult things about the autistic experience to explain properly to neurotypicals. I think this is in part because of the persistent (yet inaccurate) intuition that the autistic experience is just a slightly tweaked version of the neurotypical experience. We use these descriptions to simplify, to help NTs empathize and understand through the use of metaphor and analogy. But the processing and undertaking of tasks is entirely different for an autistic brain, and we are forced to use metaphors to inadequately explain ourselves to the neurotypicals in whose world we must live.
For example, the way I perceive sensory input is not really just a “more intense” version of the neurotypical perception. It’s impossible to truly simulate for a neurotypical what an autistic sensory process is like, in part because neurotypicals will unavoidably use their own sensory systems to perceive and assess these simulations. Another obstacle is that videos attempting to capture a semblance of the autistic experience are themselves constrained by the limitations of computer software.
Order of Operations
My partner can easily understand and accept that I have difficulties with sensory processing. When we go to a restaurant, he knows to find a table near the edge of the room, so I can sit with my back to a wall. While we wait in line at the airport, surrounded by people, light, and noise, he will squeeze my hands and arms to help center me. At a party, he will periodically check in to make sure I’m okay, or to see if I need to leave and take a walk to relax for a few minutes (which is amazingly helpful, considering I usually won’t realize that I need to take a break until he suggests it).
But it’s much harder for him to understand why, after a long trip, I can’t walk more than a few yards, let alone unload the dishwasher after we get home. While he cooks, cleans, and somehow stills finds time to do schoolwork after a weekend visit with family, I struggle to even brush my teeth (and I definitely can’t stand up while I do it).
I’m sure it’s also pretty frustrating to deal with the fact that the few things I am capable of doing—in fact, need to do in order to calm down—often involve perseverative obsessions that range from trivial to annoying, such as marathoning a TV show, or playing World of Warcraft.
And even harder to accept is that, even on a good day, vastly important and seemingly simple tasks are an enormous, uphill battle, if not an outright impossibility for me.
Making a phone call, mailing a package at the post office, or opening a bank account are things that come easily to most neurotypicals. These are things that could be described as singular tasks, individual bullet points on a daily to-do list.
But to me each of these things is a series of confusing and overwhelming tiny steps.
Not only that, I have no idea what all those steps are, what order they go in, or how to complete them.
New challenges, for me, can feel like being tasked with building a space shuttle—I often don’t even know where to begin gathering the necessary facts, let alone using the facts to engage in appropriate actions. This is why these simple tasks can take hours, days, or weeks of planning and preparation.
Autistics see the world in tiny pieces. We are detail-oriented by design, and we can’t really help missing the forest for the trees.
From observing and talking to neurotypicals, it seems that they deal with tasks like mailing a package by “just doing it.” Which reminds me of the advice I once got for how to speak when I couldn’t: “Just open your mouth and say something!”
Trying to get an average neurotypical to break down these kinds of tasks into steps for me is so foreign to them it’s almost laughable—“Just call and then ask to set up an appointment,” says my partner when I need to find a new doctor. I have no idea how a neurotypical brain structures these tasks, since the process is seemingly so effortless that no one has been able to explain it for me beyond, “it’s just easy for me,” or, “it’s not a big deal, just do it.”
But I do know the way my brain structures these kinds of tasks, and it’s definitely not effortless.
A phone call involves an almost infinite number of variables, and a floating, uncertain number of steps.
What time of day should I call?
Who is going to pick up?
Will the voice be too quiet, muffled, or accented to even understand them?
What exactly do I need to ask?
What information do I need to know and have ready before I call?
What do I do if I get an answering machine?
What information do I need to leave in a message, in what order?
And so on, ad nauseam.
Furthermore, these mental steps are not linear or easy to identify. Just coming up with the above list of examples took quite a lot of focused brainstorming effort (and I’m sure I’ve missed more than a few things).
Plus, just identifying the steps isn’t enough. I would still need to sit down and answer those questions, one at a time, before I could make the call, armed with my script and my notes.
I would also need a hefty block of time before the call to switch myself into phone-mode; in other words, to “boot up” the proper program.
Loading the Program
Every task requires a specific mindset, a certain way of thinking. A neurotypical brain can run on autopilot, flipping between these programs without even noticing what’s happening.
Because our lack of central coherence makes tasks so complex, performing an action can be akin to executing a massive, specialized computer program that takes up a huge chunk of our brain-computer’s working memory.
Taking a shower is a unique process that requires the loading of a unique program to execute. Taking a bath is another unique process, running off a similar software as taking a shower, but a slightly different program—and this difference is indeed significant! I once broke down in tears while trying to take a shower in an unfamiliar bathroom because I couldn’t figure out how to make water come out of the showerhead; if I wanted to get clean I would have to take a bath.
It wasn’t the concept of an activity switch that was the problem (I actually enjoy baths more than showers), it was the fact that I was forced to discard my carefully assembled shower program and do a complete “reboot.”
The autistic difficulty with change is merely a side effect of how taxing it is when a person has to manually construct and execute task programs. A change in an expected routine means deconstructing the already loaded program and building an entirely new one from the ground up. That takes an incredibly amount of mental energy!
The author Luna Lindsey recently coined a term she uses to refer to these chunks of information that must be assembled to run a task: she calls them “splines,” after the joke phrase in Maxis’ Sim game loading screens, “Reticulating splines…”
It takes energy and effort to reticulate those splines and write the mental code for those task programs.
On the plus side, our detail-oriented, manual transmission brains can see all those details that a cohesive, neurotypical brain cannot.
When we understand something, we understand it front to back, inside and out, because our brain types allow us to have massive libraries of information, stored in lossless, uncompressed format. But these complex programs with massive file sizes mean that preparing for an activity, or changing from one task to another takes much more time and energy.
And we autistics, with our gift and curse of heightened neuroplasticity, need to rebuild our task programs from the ground up almost every time we do something. This not only takes time and effort, but it takes a special kind of effort that the neurotypical and the typically-abled simply don’t need to worry about.
Christine Miserandino popularized the idea of this unique type of effort using an extended metaphor known as Spoon Theory.
Christine initially came up with the spoon model to describe her experience living with Lupus, but the metaphor holds for many other types of chronic illness and disability.
To summarize: Spoons are an analogy for capability.
Most people wake up each day with so many spoons that they don’t have to think about how many they use in a day, nor worry about conserving them. But someone with, for example, chronic pain, fatigue, depression, or autism will have a smaller, more limited supply of spoons.
Everyone gets tired, but spoons are a different kind of resource. Spoons cover the big stuff, but also the “little” things that most people don’t even think about. Taking medicine, getting dressed, refilling a water glass. Being low on spoons means having to choose between brushing your teeth and making dinner.
Say it takes me two spoons to shower. That’s workable on a normal day when I wake up with 12 spoons. But sometimes I don’t have enough. Sometimes I have only 3 spoons, and need to choose between taking a shower and cooking food. Other times I have none—like after a long vacation—and I can’t do anything but lie down and alternate between sleeping and focusing my eyes on a screen.
So if on an average day I wake up with 12 spoons, I can’t exactly make a phone call, visit the post office, and open a bank account on the same day. Simply planning and executing my visit to the post office could take anywhere from 5 to 10 spoons.
Something really big, like flying to California for a wedding (subway to taxi to airport to plane to taxi to hotel) is guaranteed to use an entire day’s worth of spoons, which is why traveling alone is an absolute nightmare for me. Even with my amazing, wonderful partner to follow around while I stare at the floor, earplugs in, trusting that he knows when and where to go and how to get there, I arrive exhausted, spoon drawer empty.
And every day is spent planning around potential spoon drains.
If the subway is full on my way home, that’s an extra spoon.
If it’s so full that I have to stand, that’s another spoon.
If I get a seat, but I’m pushed up against the person next to me the whole ride, that also costs a spoon.
The other night I was sitting with a person pressing into me on either side in a train car full of shouting commuters. The woman to my right wore a perfume so strong it stung the inside of my nose and mouth, and the man standing in front of me carried a nauseating bag of fried chicken. Combine all that with the standard pounding and rocking of the train, the thundering echoes bouncing off the tunnel walls, the screaming of the breaks, the glaring lights, and my empty, queasy stomach— that ride took all my remaining spoons. All I could do was come home, collapse, and order delivery food for dinner (using my favorite app that’s all click and no phone call).
It can be difficult for a typically-abled person who has a practically infinite number of spoons to empathize with how stressful it can be to worry about conserving them. After all, you never know what unexpected difficulties might pop up on any given day.
As Christine puts it, “you do not want to run low on ‘spoons’, because you never know when you truly will need them.”
Refilling the Spoon Drawer
I particularly like the “spoon” and “spline” analogies, because the two are so interconnected. For an autistic person, a huge part of the spoon budget comes from how many and how often programs need to be constructed, reconstructed, and loaded. After all, “reticulating splines” costs “spoons.”
A large part of my time is spent on coming up with ways to regenerate, recharge, and refill my spoon drawer.
I can’t even begin to think about reticulating splines if I don’t have enough spoons. While there is no real way to get spoons back once they are spent, I’ve developed many coping techniques for halting spoon leakage, and dealing with the fall-out of a spoon-depleting situation—increasing the likelihood that there will be a few spoons in my drawer when I wake up tomorrow.
Essentially, these are ways to deeply rest when casual relaxation just isn’t good enough.
The regenerating methods I’ve developed are those that work for me, but the key to any regeneration technique is to find things that,
- You can do regularly, even on your worst days;
- Take varying amounts of time (you won’t always have a whole day to recharge); and
- Aren’t “spoon thieves” in disguise!
A spoon thief in disguise is something that feels good now, but will hurt you later. We all have an intuitive radar for these, but sometimes we fall into the trap of engaging in them anyway when we mistake anything indulgent for something regenerative.
A few examples on which most people generally agree include: drinking too much alcohol, sleeping in so long you wake up dehydrated and bleary, eating until you feel hurt or sick, and watching TV until your eyes ache and your back is sore.
Like anyone, I often fall into the trap of over-indulging with the intent to regenerate.
Playing World of Warcraft is relaxing for me, and a great way to regenerate for the same reason as reading a fantasy novel or watching a Disney movie—it’s an immersive, visually stunning activity that clears my mind. But when I woke up yesterday without any spoons, after a particularly hard week, and spent an entire day playing World of Warcraft, I felt awful. I managed to regenerate some spoons, sure, but I also spent quite a few by being so hard on my body—in other words, by sitting still all day in uncomfortable positions, forgetting to eat meals or drink water, and not exercising any of my muscles.
A true regenerative practice is something that will always make you feel better, but more importantly, will generate more spoons than it costs to produce them. Regenerative practices are the only way to avoid getting hurt in the long term.
Here are a few of my regenerative techniques for restocking my spoon drawer, and/or recovering from an exhaustion meltdown:
Note: I’ve tried to include things that take time, as well as things that can be done quickly, or on the go. Several require spoons to get started, sort of like pulling the cord to get a chainsaw spinning, so if you are running dangerously low many of these will not be possible. I’ve bolded ones that are nearly always helpful.
- Take a bath (bonus: adding lavender essential oil, lighting candles, and bringing in a chair to hold my laptop so I can watch a movie or listen to an audiobook)
- Shower (if there isn’t time for a bath)
- Play dress up (if you need help getting started, play some music, and try to put together an outfit to suit each song; or design outfits that remind you of your favorite characters or fandoms)
- Take a nap
- Put on lotion everywhere (or just on face, or hands, if time is limited)
- Drink a full glass of water
- Put on nail polish
- Make tea
- Make lists (of whatever; think Sei Shonagon)
- Wikipedia surf
- Scribble on a piece of paper until the whole page is black
- Draw faces on fruits and vegetables
- Take a huge, deep breath and let it out light a sigh (repeat as desired)
- Raise your fists as high as you can for ten seconds (literally boosts happy hormones; longer is better)
- Play with a stim toy (examples: spinner ring, clicky thing, puffer balls, that tangle thing, chewable jewelry)
Have any suggestions for spoon-replenishing techniques?
Please share yours! We could all use more tools in our coping kits 🙂