Colored spoons… and social codes.

Standard

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.

a white spoon

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.

a red spoon

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.

an orange spoon

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.)

a yellow spoon

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.

a green spoon

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.

a blue spoon

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.

a purple spoon

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.

me holding a spoon

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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

34 responses »

  1. I find it nigh impossible with nary a spoon to remember any rules in the presence of other people. I know all the rules when I’m on an errand to recite all the ones I know. I crawl the links in my mind, and there they are. In the split second I’m asked to act out all these rules live…not being as natural to me… (it would be like asking someone else to juggle potatos when they are in my presence while beating eggs and mowing my lawn simultaneously perhaps by magnitude of performability)…(and rules are often suited for the typical’s preferences)… and do them or else and recall every one of them. I can’t do random access mentally on all these rules right when appropriate. Sure, there is the trigger system but I have one trigger and some things never pull it. I can be an event based computer but after a while, I run low on spoons or “memory” or I’ve cached all the responses to these events that I can handle and have no more capacity. To someone told not to pass gas in public. Perhaps it’s easy for someone who has a nicely working schincter, perfectly under a voluntary muscle’s control, someone who has a functioning digestive system, someone who isn’t wearing clothes that fits them, having eaten the perfect foods and able to walk by the planter and drop a silent one and then go about toasting the party guests. There are people who have no need or have all the tricks down. I figure everyone has spoons but many live in a world of ice cream where for me it is a world of steak. Sure, I can cut the steak with the spoon.

    This reminds me of my experience as a dishwasher and the manager who yelled at me (and was intending to threatingly scare me (which worked at the time) by breaking all the dishes on my counter) to stop crossing my hands as I fed dishes from the silvery counters (which were horrible enough for me and no one else) into the Hobart® (a 140* degree dishwashing system (*when the Board of Health sent by our competitors were around)). I couldn’t explain that I was left handed at the time. Others in my situation could have. It is just one minor situation that is simple enough for me to describe where the “odds” were literally “stacked against me”. I little more efficiency was what he wanted. I was faster than most dishwashers there by the way but he looked at me and saw “inefficient” because I find out later, someone complained that I was being “inefficient”. I was actually faster because I had timed myself. It didn’t matter. The perception of being a perfect employee matters than actually being one, let alone the perception of needing accomodation. The perception turns into labels like “whiner” and “drag” etc etc. Sometimes, I do so just to earn my labels. I try not to anymore but these days, my spoon drawer is about empty. I have one spoon left and now I can’t do most of the things I used to be able to do.

  2. My brother (who’s better at the social thing than I am, in terms of following those kinds of rules anyway, although there are aspects of things that I’m better at as well) was once asked not to come back to a job site, not because there was any problem with his actual performance, but because he “didn’t look like he knew what he was doing”. He never figured out what that one meant.

    With regard to spoons and remembering all that social stuff, exactly. Learning that social stuff often has the effect of making me nervous and little more (at least until I realize it’s pointless wasting spoons on nervousness). Because it means, “Okay, I know I’m not going to do this and other people are going to judge me on the fact that I’m not doing it.” Like I almost never even say hello or goodbye to people. I’m not meaning to be rude, I just am generally too busy dealing with several other aspects of a person coming or leaving to remember some abstract rule and then link it to language.

    I’m trying to figure out another analogy for the social stuff. I almost want to say it’s like being expected to remember higher mathematics and all its rules and so forth at the exact same moment as sitting there ponderously figuring out complex arithmetic. But then I know a lot of people who can do calculus or topology or geometry but not “simple” arithmetic. ;-)

    Unfortunately it seems to run both ways at times. I knew a very nice non-autistic person who apparently was busy remembering a whole lot of stuff about how a lot of what I did that violated assorted social rules was not actual rudeness but often an artifact of the way I processed the world. At one point that person was very overloaded (yes non-autistic people get overloaded, it just looks different) herself. I utterly failed to differentiate her voice from someone else’s (both were telling me to do totally opposite things), and she got angry with me about it. I couldn’t do anything about it, because it was really at that basic level of perception. But she was hurt and offended at that moment that I had not by then somehow gotten her voice into my head as something I’d understand even if I understood nothing else on the level she was expecting understanding on. Normally she’d have been able to think it through, but her mind was busy with other things (including being really sick), and thus she processed my reactions as if I were not autistic, and even got angry with the suggestion that my being autistic had anything to do with it.  When, at the time of course, I was surprised I’d even parsed the instructions, let alone figured out anything else about them.

  3. >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.

    Exactly! Well put. I can assume by your post that your support staff don’t follow you around endlessly reminding you to say ‘please’ and ‘thank you’. I have worked with people in their 70’s that *still* after like 66 years of being ‘reminded’ to say please and thank you- clearly have trouble remembering to tack on the anticipated abstract phrases. People 3x their age who have had young 20-something support workers tirelessly doing their duty to teach them those oh so essential manners (groan) The irony is that I have met many more 20-something support staff that lack basic courtesy than autistics who I find are usually more courteous, kind and respectful of others than the norm.

  4. Actually, I have had staff do that. Fortunately, the last time it really became an issue, I had a roommate in the room, who had worked as staff in the past, and who pretty much set the person straight on what was and was not acceptable to do to someone as staff.

    Afterwards, she said of that person, “How can someone so young manage to have picked up being that patronizing already?” (The person was younger than I am, and I’m fairly young.)

    I think that I actually am, when capable of it, very courteous, in the sense of consideration for other people. I go out of my way, in fact, to be considerate. It doesn’t always mean following the social codes though — I can act from principles towards other people (and believe it’s necessary to do so where possible), but I can’t memorize a bunch of rules, so I go for the spirit of courtesy rather than the letter as it were, when I can.

    And the woman who was so insistent about correcting my manners without being asked to, managed to be possibly following the letter but definitely not the spirit of courtesy.

  5. Lest anyone claim I am incapable of multitasking…

    Who was it that decided that multitasking capability was a fundamental measure of a person’s worth? Please share if you know so I can program the address into the rock I’m ready to pitch.

    As you make clear in your subsequent comments, many of these standards–from spoon juggling to passing gas to courtesy–are routinely broken by NTs. Lucky for them their freedom to live ‘in the world’ is not conditional on their meeting the standards.

    Though NT, I have other impairments mental & physical. I have never found the spoon analogy helpful for precisely the reason you enumerate: how can I know how many spoons are available that day? sometimes task X is a half-spooner, sometimes it’s a dozen.

  6. I think non-autistic people don’t understand the concept of “the spirit of courtesy”, they want the “letter of courtesy” the please and thank you and stuff. Again this is a lack of creativity and patience on their part. I have stored those responses in my head and sometimes it’s not hard for me to spit them out when necessary but if I am preoccupied with something else, then I have to be reminded or else I’ll forget. As for going out of your way to be considerate, I do too, sometimes, when I get a sensation inside that someone may be upset that I am not making eye contact (because its hard and scary) I try and say a few extra nice things at the end of the conversation. This is usually when I am out buying something. Your elaboration on the spoon theory and how it relates to you, was very well written and made a lot of sense.

    ai

  7. oh and something else I forgot:
    this isn’t really scratching in private areas though I used to do that quite a lot, and sometimes I still do. I pull on my bra strap at the back when I’m walking around outside, because it calms me down. Being around so many people can be quite unnerving. I also “bear-hug” myself….and maybe that gives me a rather stern appearance. But I need to do it for anxiety reduction.

    ai

  8. Jesse: I have no idea. I just noticed that autistic people are often described as “incapable of multitasking,” which would be fine if it were true, but I’m not so sure it’s true, even when I’ve used that sort of language, I have had trouble believing it somehow, given the amount of multitasking I’m always doing. I think we might just have more to multitask to begin with, and in smaller increments.

  9. I think it’s pretty rude to correct one’s elder’s manners. *Maybe* it might be OK to do if one were the object of rudeness, but certainly not OK, generally.

    Besides, she was your helper, not your Mommy.

  10. I agree that it is innapropriate manners wise to correct your elders. So – in their effort to enforce politeness they themselves are doing what they should not. Politeness is about affording a person a certain amount of respect – so that involves trying to teach children the please and thank you stuff – but more so by setting an example. But I often see this kind of double talk in regards to manners. Please and thank you are just words afterall – and they mean nothing if the person saying them is not sincere. I would rather see a smile or a nod from someone who cares than a rote thanks because they are expected to.

  11. ballastexistenz: re: multi-tasking. That seems about right about how we might have more to multitask to begin with. My mind is busy sorting volumes of social data sometimes while performing some tasks. To the natural at this task, this is a simple tasks that may require less analysis as they received more inputs or have some extra heuristics that reduce these tasks. I find the computer model sometimes very good at description even though it too can suffer the weakness of the analogy. I think I relate to computers because the detail of a computer matches much of the complexity I’ve had to go through to adjust my mind to the world. It seems my mind has had to go through processing the social threads in the background extensively and so this multi-tasking is really just like the multi-tasking of a computer. I have one “perseveration thread” and a few “worry or analysis” threads running if someone walks by and a few threads dedicated to the background noise and what that could mean. The visuals around me etc etc. The subconscious CPU multithreader feels closer but the database feels farther in the difficult situation. When I’m allowed to focus, I can access the disk with more threads or more resources on that single thread. ;-) Hopefully, there are a few powerusers/computer hacks reading that understand this. I don’t want to emphasize though that computers are anything like a “perfect occupation”. They have the capacity as well to wear me out as well albeit, I don’t have to analyze their social unpredictabilities as much. It’s a simple convenience for those who’ve had to adjust the mind ever so logically to the real world to get by when it appears others can run more on autopiloted instincts.

  12. The culture I am currently living in places a good deal of emphasis on “social codes” for acceptance. The irony of it when confronted by “why do you demand this” is total denial. Oh but we dont!!! I think the whole idea of “social codes” is to “put people in their proper place”. If you dont follow “the code” therefore I/we have a right to determine that you dont belong. Because if you followed the code (and of course we aren’t going to TELL you -you have to figure it out on your own) that would show that you want to be a part of the group. But I love the spoon theory. If nothing else it shows that some of us determine our behaviour/lifestyle by priorities. Is it worth it ? rather than ” I have to do such and such so everyone will love me”. And i think THAT is what irritates nondisabled people the most. That we expect to get away with not worrying about what everyone else thinks and expect not to get the same consequences. . Mainly what I am trying to say is
    Following “the code” grants immediate acceptance and inclusion. NOT following the code means that its perfectly ok to reject and ostracize you. After all SOMEONE has to be on the lowest rung of the ladder otherwise we wouldn’t have anyone to step on on our way to the top! Horrors that would mean that we are all equal in terms of contributing to the world around us !!! If I dont have anyone to despise and look down on then I can’t feel good about myself right !!
    just a little sarcasm there . smile.

  13. LOL Ann, I agree completely.
    Lordalfredhenry: I am not very computer literate but I understand what you mean about computers being easier to deal with.
    And we DO multitask, but in ways that are not always visible to others. In fact more often than not, no one but us, sees our efforts to “connect” with what’s going on. I can “split myself in half” mentally and thus I have “two minds” to deal with one problem. And even then it can take me longer to solve than the average nonautistic person.

    ai

  14. I think that using a social code to “put people in their place” (as Ann says) is an abuse of the power of social conventions. Ideally, the purpose of social codes should be to provide a framework for people to get along without making one another *unnecessarily* uncomfortable. (Unfortunately, there is no universal agreement across time, space, religion and philosophy about the definition of “unnecessary”. Today, most people will agree (at least in theory) that discomfort caused by another person’s skin colour is unnecessary. Fewer will agree as to whether discomfort caused by another’s sexual orientation should be unecessary. Some people will be uncomfortable with too much eye contact, some with too little. (Not to mention the arbitrary nature (to me anyway) of telling people that “eye contact” is important, but “staring” is bad.))

    Interesting question about when/whether it is appropriate to “correct elders”. This seems like just another presumptive social convention that is (or should be) sometimes applicable and sometimes not. I don’t see why age, particularly relatively small differences, should be used as an arbitrary determination of power. Perhaps it comes from the idea that older people would tend to be more experienced and therefore wiser, but that presumes that the older person’s experiences are applicable to the younger person’s situation.

  15. 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 don’t understand this, either. Surely everyone adapts, ‘conforms’ and ‘changes’. Short of becoming a hermit, one doesn’t get a choice about that; and, those considered ‘lower’ on the spectrum probably get least choice, and therefore have to devote most energy to conforming, as it is. Institutions, invisible institutions, staff of all types…

    I wonder whose definition of ‘the needs of those who function on the lower end of the autism spectrum’ Grandin’s using – and whose needs are really served by it.

  16. Thank you.

    I have found the basic spoon analogy useful up to a point, but it really does focus more on physical energy and physical pain tolerance, which are different from mental functionality.

    I also think this inadequacy may just be a function of the limitations of analogies in general.

  17. Baba Yaga: I didn’t actually get the impression in her latest several books and some of her public comments recently that Grandin had the needs of what she considers the lower end of the spectrum at heart. She seems to believe that this grouping (whatever it means) is kind of useless or at least kind of not worth having around and therefore might be better off prevented so that people on her end of the spectrum (whatever that means) can go on being the actually useful ones.

    So part of her view of what those needs are apparently is that “they” whoever “they” are, not exist to begin with if possible. Which surely doesn’t serve “their” needs very well.

  18. Lifestyle choice – ugh! That’s the lazy social worker’s buzz phrase to get out of doing any work. I’ve worked with too many children who are victims of their parents’ dysfunctional lifestyle, but CPS says its a lifestyle choice. BS. I’m so sorry your friend was refused supports based on a superficial and unconcerned social worker’s proclamation.

  19. …Temple Grandin often writes things in general that leave me totally confused. Or simply disgusted.

    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.

    American/Western squeamishness about bodily functions is, I think, a luxury we can afford only because most of us have the privilege of being able to keep some body functions hidden away behind closed doors, in “sanitary” conditions, etc. We’re supposed to do them as needed and yet see them as gross nonetheless, and pretend in mixed company that we don’t, or that our poop doesn’t smell bad, or whatever, and then judge those who remind us that they also exist outside of their “proper” context.

    It’s funny, really, because some Americans react with surprise when told about what things are considered publically improper in some other cultures– such as coughing, blowing one’s nose, scratching one’s head, etc– and say “Well, how do you keep from doing those things? What do you do when you need to do them?” When, in fact, the same could be said about all the things our culture declares taboo in public. The truth is that sometimes you can close your mouth, but you can’t stop yourself from burping. (And what is the difference between a burp and a belch, anyway? I was always under the impression that they were synonymous.) I mean, you can try to mitigate the sound by swallowing, but sometimes things happen, and then some people will act as if they somehow think less of you because your body performed a function that theirs performs all the time.

    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.

    I think the reason why I don’t put much stock by ‘standard phrases of politeness’ is because it’s so easy to repeat them mechanically, whether or not it’s what you’re feeling. Someone can say “thank you” when they don’t feel thankful at all; “normal” people do it all the time if presented with a gift that’s not to their tastes. It’s like the tendency of some people in this system to mechanically repeat “I’m sorry” every time unpleasantness or conflict occurs– not necessarily because we believe it’s our fault and are repenting for it, but because past experience set a precedent for our expecting to have it taken out on us.

    Temple Grandin sounds as though she’s just rehashing the old straw man argument of “You high-functioning autistics who don’t need any help think everyone should be left alone and nobody should ever be helped. You’re going to make the low-functioning people like my child suffer, blah blah blah blah…” Really, the only “black-and-white thinking patterns” I see here are Grandin’s, in that she’s obviously caricaturing a position on a subject where members of this supposedly monolithic group hold varied and diverse views.

  20. This was (yet another) excellent post. So much of your expansion on Spoon Theory – including some of the effects on social functioning – applies to non-autistic people with limited energy.

  21. Your expansion applies beautifully to me, as well. I’m deaf, and conveying the difficulty of talking (verbally) with people in various different situations or settings is best explained through this version of the spoons theory. I’d read the original last year and thought it interesting, but didn’t apply it to myself, since my disability is sensory, not physical or mental.

  22. As someone with lupus, and possibly RA, I am familiar with the spoon theory, and I have a son with Asperger’s, and strongly suspect I have Asperger’s as well. This explanation explains so much. Thank you. I never linked the two ideas before, but it so explains why I get so drained in social situations, and why my son, nine, is so wiped out after a day of school. Thank you.

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  24. Pingback: What is ethnography, and why I want to use it in researching disability support systems « AD&D (Alterity, Discourse, Dis/ability)

  25. Hi!,
    Okay, first, I’m not autistic (at least not that I’ve ever been diagnosed, so far.) A lot of people — some doctors included, have almost kinda speculated that I might be somewhere near Asberger’s syndrome in some way, but the “professionals” have never really tried to lump me into that diagnostic catagory.

    In MY particular case (because they were the two most blatantly obvious “deficits” in relation to “normality”), I was/am designated as follows: 20/200 visually-impaired, and “Attention-deficit-hyperactivity-disorder”.

    Basically, what this always meant — and still means in my case, is that I am severely nearsighted, and have WAY “too much” energy/stamina/focus/etc. in relation to other people. I am far more “normal”-seeming than you, probably (don’t take that as a slur), so I tend to really end up seeing things from a different perspective than either you, or the fully “normal” folk around me.

    Here’s some observations from my point of view:

    1. There’s a vast — and fundamental — difference between getting a level of personal functionality, maximizing your personal abilities, whatever, and being trained in “social skills” so that your nonconformity to majority standards doesn’t freak people out. Trust me, I know this — they inflicted TONS of that sort of bullshit on me…everything from if I held my fork the “wrong” way, to if I didn’t mouth the correct (meaningless) platitudes at the “correct” time.

    Temple Grandin is NOT a particularly valuable role-model or “spokesperson” for the autie/Asperger’s populace. For one thing, she seems really obsessed with how cool she is for having gained the ability to “pass” in ‘normal’ circles. She seems to recognize that being a “little different” is acceptable, but she also places vast amounts of importance on conformity as being a positive attribute.

    Add to that the fact that her whole gambit is essentially to be a “closeted” autistic who seems to specialize in “training” other autistic folk to “fit in”, and you have a poisonous mixture.

    Keep up the good work…

  26. As far as I can tell, a belch is a particularly loud burp.
    Another thing is that people who are visibly disabled (I know this is imprecise but I can’t get any more precise without seriously going off topic) often get certain allowance to act weird. Of course, there’s other bad stuff that invisibly disabled people are spared, but I suspect people are less offended by someone breaking social conventions if they look or act weird enough to be considered disabled (or if the context indicates they are disabled, for example if a staffy person is following them and bossing them around).

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  28. As an Aspie woman who also has a disabling chronic pain condition, I can assure you that no, your concept of spoons is not all that different from mine – or Christine’s, I think. I can have a good day where I can go out and meet people, or I can stay at home and play a video game and be able to cook my own dinner later. I can’t do both. Mental spoons and physical spoons aren’t as disparate, at least for some of us, as you appear to be saying in this article.

    Funnily enough, some people in my life actually seem to GIVE me spoons – when they visit, I have a slightly higher energy level than if I had spent the day alone, and I can do some small housecleaning things while they’re there and talking to me. It helps distract from the pain and fatigue, sometimes. Other people, I can’t see on bad days at all, and I have no way of explaining to them the difference in their energy that they can understand without being hurt.

    I am also bipolar. Mania and physical exhaustion so bad you can’t move? Not a good mix…

  29. I’ve experienced the thing with people who seem to give you spoons too. As well as people who deplete them at an incredible rate, such that I can lose all of my spoons in a certain area just by being in a room with one of them for very long. Though I should probably add that for me, that usually seems to involve the kinds of spoons that have to do with lining up and directing various kinds of skills in my head to do certain things– not so much the kinds of spoons that refer to pure physical fatigue. (But there is also a difference, to me anyway, between that kind of movement spoon, and the kind of movement spoons you have to budget if you have a movement disorder, even a usually-mild one like mine.)

    I’ve also experienced people who could somehow cue me in ways that gave me more spoons when I shouldn’t have been trying to use them– when I didn’t feel it at the time, but it resulted in a long-term “overdrawing” over time and eventually led to burnout. I’m not completely sure how that works either (though I’m not claiming that it’s anything psychic or anything, just that I don’t understand it; it could probably be easily explained by subtle kinds of cueing, and triggering me into authority-pleasing response patterns). I’m still trying to figure out how to recognize those kinds of people and avoid them, and tell the difference between good spoon-adding situations and people and bad ones.

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  31. “I knew a very nice non-autistic person who apparently was busy remembering a whole lot of stuff about how a lot of what I did that violated assorted social rules was not actual rudeness but often an artifact of the way I processed the world. At one point that person was very overloaded (yes non-autistic people get overloaded, it just looks different) herself.”

    That helps to explain my mother. She’s NT, very understanding and supportive of me, but lately she’s gotten a very stressful job (only female lawyer at a small town law firm, with staff who don’t seem to think women should be lawyers) and sometimes she comes home really cranky and fed up, and seems to expect more NT behavior out of me at those times. I think it’s probably that it does take some effort for her to remember that I won’t react in an NT fashion, and when she’s tired/overloaded she can’t keep track of that. It’s pretty frustrating for me, though.

    “Another thing is that people who are visibly disabled (I know this is imprecise but I can’t get any more precise without seriously going off topic) often get certain allowance to act weird. Of course, there’s other bad stuff that invisibly disabled people are spared, but I suspect people are less offended by someone breaking social conventions if they look or act weird enough to be considered disabled (or if the context indicates they are disabled, for example if a staffy person is following them and bossing them around).”

    I did notice this when I was regularly hanging out with my friend with CP (who uses a wheelchair). People tended to be nicer to her than they were to me, and would often spontaneously offer to help her with disability-related stuff, whereas I always have to ask for help with disability-related stuff (even when I’m giving off clear nonverbal signals of, say, overload, people misinterpret it because they expect me to be NT). I also got people assuming I was her helper, and handing me her change when she paid for things. I’d sometimes give them an odd look, because I was having trouble figuring out why they’d be handing me money that belonged to my friend. Ironically, she’s more competent to handle money than I am, because I tend to spend impulsively.

    “I’ve experienced the thing with people who seem to give you spoons too. As well as people who deplete them at an incredible rate, such that I can lose all of my spoons in a certain area just by being in a room with one of them for very long.”

    Me too. In my case, my parents and younger brother give me spoons. The people who take away spoons are usually taking them away for PTSD-related reasons, not autism-related reasons (they look or act like my abusers) although people who are highly controlling of me will set off my demand avoidance (the type of autism that best describes me is Newson Syndrome).

  32. Pingback: Spoons and Splines: the Laws of Thermodynamic Autistic Motion | The Artism Spectrum

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