A couple of edits as of September 19, 2006:
1. If you’re coming here in a link from an essay by Dinah Murray, be aware that I don’t subscribe to a view of autism that hinges on having a one-track mind. I don’t think that one-track minds are bad (someone in comments asked me what’s wrong with them — nothing), but I don’t think we necessarily have one. I don’t think our processing resources are necessarily any more limited, I suspect they’re just, if anything, more swamped.
2. My post Storks has an analogy that I’m more satisfied with than this one.
Anyway, on to the original post:
Someone’s linked to The Spoon Theory again, and I really need to get my act, and spoons, together, to explain my version of the spoon theory. This won’t make much sense until you read the link, but be aware I don’t necessarily attach the emotions to spoonlessness that the author of that link does. (Nor do I think this analogy is perfect even when I extend it the way I have in this post, it’s an analogy, analogies are inherently problematic.)
One thing a friend with an unspecified autoimmune disease (been speculated as rheumatoid arthritis and then as Sjogren’s, but it’s unclear what exactly it is) pointed out, first off, is that you can be going through a day with nine spoons, and then suddenly you’re down to no spoons a few minutes later with no warning or ability to prepare yourself. She said there is an element of total randomness that the spoon theory doesn’t adequately capture.
Something I find that it doesn’t capture, is that not all spoons are the same.
I have (in my interactions with a world set up for non-disabled, non-autistic people) spoons for overall energy (probably most similar to the “spoons” in the original article), spoons for language and symbol, spoons for processing input, spoons for deliberate movement, spoons for abstraction, spoons for deliberate remembering, and so forth. These spoons are all different colors.
Any given activity is going to require several kinds of spoons. There is sometimes a “spoon bank” at which certain colors of spoons can be exchanged for other colors, but the exchange rates vary wildly from moment to moment and can get so extreme as to be effectively non-existent.
For that matter, there are certain kinds of spoons that are just going to be drained even if I do nothing all day. Spoons for processing input are under a constant drain during all of my waking hours. Certain kinds of input make them disappear faster, and certain kinds make them disappear slower. Some kinds of input can make them disappear altogether.
And then doing certain things is going to cause different rates of spoon-drainage. If I want to hear a voice as just background equivalent to the sound of water flowing, it’s going to cost fewer spoons than if I want to hear a voice as words, and it’s going to cost even more spoons to discern what the words actually are, still more to put them in context as meaning something, and so forth. (And it also begins to involve more and more spoons of different colors, in that case.)
As far as the spoon bank goes, a frequent usage of it is to trade off between moving and perceiving. My brain can exchange all my movement spoons to allow me to perceive more about my surroundings. This renders me totally incapable of voluntary movement until and unless other spoons can take their place. Sometimes it gets exchanged back, and suddenly there is little to no abstraction and little to no understanding of my surroundings while my body is walking into walls or something. And around and around all that goes.
And sometimes I’m extremely able to do one thing and not at all able to do another that everyone else seems to think is related. More spoon stuff.
So a good chunk of my time goes to figuring out ways of doing things that minimize the amount of spoons necessary to do something. Lest anyone claim I am incapable of multitasking, dealing with change, and so forth, look at all those spoons I’m juggling all the time and all the flux this is constantly in. That I have to juggle them for much smaller activities than most people do, including probably smaller than the author of the Spoon Theory is dealing with, does not mean that I’m not in a constant state of change and flux and multitasking. And keep in mind the randomness my friend described, and multiply that by all kinds of different spoons.
This is why I frequently say that were it possible to take a non-disabled, non-autistic person and stick them into my body, they’d be totally unable to do or understand anything. I have 25 years in this body, I have evolved a very streamlined and efficient way of doing things over that time, and I make use of everything I can conceivably make use of.
Which actually brings me to a book I read relatively recently. (No, not the one I mentioned in my previous post. Still haven’t got all the spoons up for that one.) It’s called Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism by Temple Grandin and Sean Barron.
I find books like this interesting. Not just this one, but ones that are targeted at least partially at autistic people, and aim to teach us codes of social behavior. I don’t think that these are bad codes to know, and they can be very interesting and useful to find out about. But I think there’s a danger in assuming that everyone should follow them, or that everyone should follow the same social codes. Or even that everyone can follow them. I’m all for informed choice, which includes the informed part, but imposing these as standards on everyone would not work. I find it far more important and feasible to, where possible, be considerate of other people, than to be considerate of them in a specific way according to a specific code. If I’m very much up to it, I might follow a specific code, but it simply can’t be counted on.
I’m going to use some examples from the book:
Don’t spit, burp, belch or pass gas in public settings.
Okay… I was shocked when I found out that most people view burping, belching, and passing gas as volitional behaviors that can be stopped and started at will. Most people must be able to pay all kinds of attention to their digestive systems, and then clench them or something, in ways that just aren’t possible for me. I’ve gotten yelled at or chastised for all of the above (except spitting, which I don’t really do) many times and it has not helped me one bit to figure out how I’m supposed to stop my body from doing whatever it has to to expel gas.
Aside from that, I suspect my body has higher priorities in public. Like making sure I’m moving in the right direction. No spoons left over for constant monitoring of unpredictable gases in my body.
Don’t eat with your hands (unless it’s ‘finger food’ or things like hot dogs, burgers, etc.).
And this one is a coordination issue.
I can’t always get utensils to obey me. When utensils fail, hands have to do. This is another thing that I’ve been chastised for, even put on behavior programs for, and it still hasn’t magically made me capable of getting everything onto a fork that people assume I should be able to get onto a fork. Nor of always remembering what a fork is for to begin with.
Don’t stare at other people.
This one, of course, requires differentiating people from all other objects in the room, and then remembering an abstract rule about not staring at them.
Don’t scratch your private parts in public.
If I have an itch, I’m not generally going to remember abstractions about whether or not scratching is a good idea, and I’m not likely to remember abstractions about which parts of the body are private, either. I’m going to be too busy hunting it down and trying to get my hand to wherever it is. I have breast eczema so I’m aware in general that I do a lot of scratching in what’s considered a private area, but the only thing I can do about this is stop the itching.
Say “please” and “thank you.”
Okay, this one is a matter of remembering an abstract rule at a given time. I do sometimes say these words, but they’re by no means a given, and their absence doesn’t mean anything.
Interestingly, the book also says something where I come down on the opposite side:
You can’t control your feelings, but you can control your responses.
Actually, I think it is possible to control feelings. Controlling responses is good, but it’s also possible to control feelings, which are after all an internal response.
Autism isn’t an excuse for being dirty or smelly. If sensory issues are involved, there are all sorts of grooming products now to get around them: dry shampoos, soap towelettes, different flavored/textured toothpastes. Even if you wear the same three outfits all the time, keeping them clean is just a matter of soap and water and a little effort.
Okay. Autism not being an excuse for not getting these things done, might explain why I need someone to assist me in the shower as well as to be handed the implements to brush my teeth if I’m going to do it every day. It might also explain why my friend had such bad sores from lack of hygiene that she was getting dangerous infections. It must, at any rate, be why the person who first talked to her about it tried to claim it was a lifestyle choice, and delayed her ability to get services for some time on that subjective judgement.
Later in the book, Temple Grandin writes a section that has me totally confused:
Interestingly enough (and mirroring the black-and-white thinking patterns that are characteristic of the disorder), there are Aspies who feel “everyone else” should do the conforming and changing, and that people with autism and Asperger’s are just fine the way they are — no changes needed, no intervention required. This is an extreme perspective that in my opinion does not take into account the entire spectrum of individuals with autism, and especially disregards the needs of those who function on the lower end of the autism spectrum.
I suppose I should restate that I’ve never had this belief, although it’s often attributed to me. As I said, I juggle spoons for all it’s worth, which means I’m constantly adapting to a fairly hostile society. I don’t make it nearly as close to Temple Grandin’s level of adaptation in that regard (even as described at my age), and in her eyes that probably makes me on a “lower” end of the “spectrum” than she is, even though I don’t make distinctions like that.
But, okay, if I am constantly growing and adapting to the best of my ability, and the best of my ability falls this short of expectation, doesn’t Grandin’s view kind of disregard me? I would think that other people need to adapt to me to the best of their abilities as well, and especially so if my adaptation to them falls as short as it apparently does in their eyes. I would think, in fact, that the less able to adapt to the typical world (as it stands now) someone is, the more the typical world needs to adapt to that person.
I’m not trying to say that these things aren’t useful to know about, or that the book isn’t useful in that regard, at least for knowing a particular segment of American culture’s unwritten rules. But most of the autistic people I know, are not in a position to do many of these things, despite the fact that they are presented in absolutes as our responsibility to somehow do Or Else. And apparently autism is merely an excuse in these matters, not to try doing them.
Back to the colored spoons.
Many autistic people, like me, are busy juggling a lot of spoons of a lot of colors just to do some of the really basic stuff. A lot of the things covered in this book seem frankly well over my head. I may be able to understand them in the abstract, but it would be very difficult to put many of them into practice. Not because I’m a lazy, unmotivated slacker, but because of this whole thing about spoon conservation:
I’m using a fair amount of spoons just understanding (for some senses of “understanding”) my surroundings, moving my body around, and avoiding some of the absolute most destructive, dangerous, or inconsiderate things I could do: Hitting my head, physically hurting other people, screaming, taking my clothes off, or urinating in public.
Telling my eyes or ears to scan around for human beings takes a large number of spoons. Telling my abstraction and memory to call up a long list of rules for being around human beings costs even more.
These things are not sustainable. They’re not always even possible. As the song goes, “It’s a nice idea… in theory.” In reality, I’m going to walk past people without noticing that they’re people at all. In reality, if I’m walking on foot, I’m going to possibly walk straight into people and be unable to avoid it. In reality, I’m not going to necessarily recognize and respond to a “familiar” voice calling my name in the midst of chaos.
I’ve seen a lot of emphasis lately not just in this book, on learning social graces of various kinds. Aside from being a very culture-specific thing to learn in many instances, the practical application of these social graces is an impossibility or only partial possibility for many people. I can understand learning to apply them if you’re capable and willing to apply them, and I don’t think there’s anything wrong with knowing them. But I do worry about the situation of the many people who won’t be able to apply them. Are people who to the best of our ability juggle tons of spoons for little increments of typical activities, going to be simply the rude, lazy, inconsiderate kinds of auties, who won’t accept responsibility and use autism as an excuse?
I know that’s not what I am, at any rate, because I know that I am always learning and growing, and I know that I am doing my best at the spoon-juggling, being as efficient and frugal with my spoons as I can. But I wonder what attitudes towards people like me are going to be. Are they going to be simply dismissal, or will there be some understanding there of the fact that many of us are going to look at books like this and go “Wow, uh, I’m too busy juggling the basics to have nearly enough abstraction-spoons for this”? Is there going to be some hierarchy where people who can do all these things are better? I hope not.