Christine Miserandino wrote an article about a metaphor she used to explain her chronic illness (Lupus) to a friend. The metaphor was called The Spoon Theory. You should read it if you haven’t already. Please, go read it. It is interesting and eye-opening, and it will shed a lot of light on the rest of this post, too.
As I read Christine’s article, I was surprised how much I felt my own eyes were being opened. At first I thought, yeah, she’s ill, and she’s fatigued, and she has to think more about things that much of the world takes for granted. I knew that. I didn’t think I’d be learning too much, but I really wanted to see how the spoons came into play. As she got into the metaphor/comparison/whatever, I started to feel a little twinge of guilt. I thought I knew it all, but some of those things were catching me off-guard. It brought up emotions I didn’t expect to feel. It surprised me. I came away with a deeper understanding and sympathy, and I also began to form an idea for how I might be able to explain at least one aspect of Asperger’s to those who don’t have any experience with it.
I thought about changing the name and the metaphor around more, but I want to stick with Christine’s idea of the spoon theory because she should really get the credit for the creativity. I don’t want to change it to forks and distance myself from her original thought. Or whatever. So here we have The Reverse Spoon Theory – Too Many Spoons.
Here’s the background: you have an Autism spectrum disorder, but you are considered “high-functioning.” You work from home, you live alone with your cat, and you’re going through a stressful time. You can pick the stressor. Maybe you just found out you’re pregnant. Maybe you’re separated from your spouse. Maybe a friend or parent is terminally ill. Maybe you are about to lose your apartment and you have to move right away.
Yesterday was a bad day for you, and you got to bed late. You were exhausted and stressed, so you didn’t sleep well, and you had bad dreams. Come this morning, you wake up to your alarm tired and grumpy, and you have six spoons in your hand already. You know that every action you take today could land you with another (one or more) spoon(s), so you must choose wisely what you will do.
You shut off your alarm and throw back the covers and manage to get out of bed. Maybe the first thing you do once you’re up is get dressed. A blue button-up shirt catches your eye, and you put that on. It has a big brown stain right in the middle, and you know you have a video call this morning for work and a trip to the store to make later, so that won’t do. There’s another spoon for you to hold on to. Stinks because it was a comfy shirt, too. You throw it on your bed and search the closet. Two more spoons in hand because you can’t seem to decide which outfit to wear. Finally, you throw on another outfit. As soon as you get it on, you know it was a mistake, because the way the collar is rubbing on your neck is driving you crazy and you feel so constrained that you can’t even move. You’re holding on to 10 spoons now as you try to undo the tiny buttons, but you’re getting anxious so it takes much longer than it should. Now, you throw that shirt on the bed and start the process all over. Eleven spoons. twelve spoons. The longer you stand there, the more spoons you get. You find a comfortable t-shirt and throw it on, deciding you can always change later – at least you’re dressed.
Leaving the discarded outfits on the bed, you move on with your morning. It’s just about time to get to work, which simply means getting your computer running. Hopefully, it will be a good day. An easy day. You could use an easy day.
Fifteen spoons now jingle in your pockets as you sit down at the computer and find a grumpy email from a client that gets you down. Then you have to make a phone call where you get stuck on hold, passed around to 4 different representatives, and finally end up with someone who refuses to help and says there’s no supervisor for you to speak with and eventually hangs up on you because you accidentally started to yell because you have a hard time controlling your voice. By the time you hang up, you have 20 spoons altogether, and what’s more you’re shaking and your face is red and you realize, suddenly, that you forgot to eat anything for breakfast.
As lunch time approaches, you’re starting to feel a bit sick, and you have 20 spoons in your pockets and 5 more in your hands. Simple things start to become more difficult. They require more concentration and effort. Lunch time arrives, but you can’t cook lunch. You can’t cook because the frying pans are all dirty and the sink is full so you can’t wash them and there are no clean bowls so you can’t eat cereal or soup and the sink is full so you can’t wash any bowls and you’re so hungry you feel sick but you can’t wash any dishes but you’re hungry and you can’t cook lunch or prepare anything because the sink is full and all the counters and tables are full.and on and on. For each time you think the same loop, you gain a spoon or two, until both your pockets and your hands are full, and you know you can’t take much more.
Don’t think. Whatever you do, don’t think about the clothes on the bed or the dirty litter box. One thing at a time.
Just before you lose it, instinct kicks in, and you start to stim. You start flapping your hands and pacing around on tiptoe. A few spoons disappear, to your relief, and you are finally realizing that you simply have to clean some dishes or you’ll be stuck forever.
You get in to the dirty sink and rearrange some dishes, getting your hands dirty but managing to get just enough space cleared out so you can wash a pot and make some ramen for lunch. You eat it, and you lose another few spoons. You can breathe again, even though you gain back a couple spoons when you go to put the bowl in the sink and catch sight of the pile of dirty dishes that you know you can’t tackle right now.
What will you do with the rest of your day? You still have over 20 spoons, and you can only hold so many. The problem is that any number of things can add spoons:
- a messy environment
- an annoying “feeling” (from your clothes, hair on your neck, moistness, light touch, grit underfoot, the button on your pants)
- certain sounds (types of music, a piercing voice, snoring, ticking clocks, someone clearing his throat, coughing, too much bass)
- bright lights
- not enough light
- forgetting something simple
- getting stuck in a loop (like the lunch situation)
- being hungry
- having to repeat yourself
- having to ask others to repeat themselves
- being in a crowd
- going shopping
- making decisions
- trying on clothes
- chaotic environments
If you get into enough bad situations, you will end up with simply more spoons than you can carry. Then it just takes one more. A wrong look, a complaint from someone, a stray thought. You may be home alone, or walking the dog, or at Walmart, or in front of your parents / kids / spouse / friends / strangers.
If just one more spoon appears, you drop them all. Your pockets rip apart. You lose it, and you are suddenly unable to see or focus on anything but your spoons. You know where each on e came from, and they’re all laid out in front of you. You will very likely lose the ability to form sentences or even words, so forget trying to explain to anyone around why you’re freaking out. For the duration of your meltdown, you’re pretty much incapable of doing anything productive. If you’re like me, you’ll be bawling the whole time, but it’s slightly different for everyone. There do not need to be tears for it to be a meltdown.
Meltdowns feel a little like what I imagine a panic attack to feel like. A little. Anyway, it’s terrible, especially if you’re in public.
You may think you’re free & clear after a meltdown since you dropped all your spoons – not so. It has a lasting effect, and you come away with a lot of spoons back in hand. Not quite as many, but you’re already well on your way to the next meltdown. Spoons multiply like that.
Christina, who wrote the original spoon theory, has a trick for dealing with a spoon shortage: she always keeps a spare tucked away. For me, the problem is an abundance, and the trick I have had to learn in that situation is to keep the numbers down consistently. I’ve got to recognize if I’m on an upward trend and catch myself long before I reach the breaking point. If I wait too long, it will be too late. I’ve got to find things to do and ways to think that break the trend and bring the number of spoons down to a manageable handful. I may need to “veg out” in front of the TV, nap, vent, or have some time with my current “special interest.” I may need to stim or do something creative or change my environment. None of these will work every time, so I also have to know when to do which thing to manage my spoons.
It’s a challenge, and this is far from the perfect way to explain it. but I thought I’d try, anyway. I’d LOVE to hear your thoughts on the matter, so please share them in the comments section below.