Autistic and Non-Autistic views of “Purposeless” Behavior

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I’ve just encountered two extremely different responses to the way my body moves on my videos, and they’re highly interesting to me in terms of who said them and what was said. It may have just made something click about what I see in other autistic people, versus what non-autistic people see in the same other autistic people.

A non-autistic person said that if she wanted to see an autistic person stim continuously for two minutes, she could just think back to her son doing “the exact same thing” all day long. She didn’t see the point of the video.

This is what Bryna Siegel, an autism “expert”, has to say about these kinds of movements:

Some repetitive behaviors that look odd an an older age would have seemed more typical at an earlier age. In treating some overly repetitive behaviors, the same approach can be taken as with some persisting undesirable behaviors in typically developing children, like a seven-year-old’s sucking his thumb, or a four-year-old’s still in diapers. The parent can just set things up so it is more rewarding to stop the behavior, and less rewarding to continue the behavior. This is what “redirection,” moving a child to a nearby, acceptable, alternative activity is all about. Sometimes parents ask if it will be harmful to make the child stop flapping his arms, staring at postured fingers, or tapping objects held to the eyes. I’m asked, “Does he ‘need’ to do it?” The answer really seems to be “no.” The main reason to stop some stereotypies is that (like thumb sucking) they may have a self-satisfying quality that tends to promote withdrawal from the rest of what is going on around the child.

By contrast, two autistic people said they saw something very recognizable in my movements in the videos, in that they seemed to be intelligent rather than random. One of them added that my mannerisms made no sense with the sound turned off, but with the sound turned on, they were clearly integrated with the sound.

While the idea that these movements are voluntary was incorrect on the part of one of the autistic people watching the video, I know what they were picking up on. I physically — through my body — get into the pattern of what is going on around me, including but not limited to sounds. My body movements are not random events tied to nothing, but are a pretty complex automatic system for dealing with, among other things, sensory input. I’ve found over time that hindering them, in addition to being impossible to sustain (and more and more impossible to sustain over time, for that matter) is a bad thing for understanding my environment.

Two autistic people viewing the videos picked up on the pattern behind this, and said so in rapid succession a few minutes ago. While these movements are non-deliberate (and the non-deliberateness can lead even an autistic person to assume there’s no point to them if that’s what they’ve been told), the idea that they are intelligent in a sense is probably right — they are not random, they are not tics (I have tics, these are not tics), they are in a way complex physical expressions of my surroundings. I don’t think “I’m going to do this now,” but they are actually a physical part of my thought processes.

But what’s interesting to me in all this is that it’s autistic people who noticed. I notice these things in other autistic people, and it’s one of the reasons I find it so hard to understand other people’s assumptions about us. I see autistic people reacting in complex and detailed ways to their surroundings, and I see a pattern. This is totally the opposite of how other people (some autistic, some non-autistic, but more non-autistic percentage-wise I think) perceive how we move, as far as I can tell. So much for the “purposelessness” of autistic behavior.

I wonder, if I saw the son of the woman who said that her son used to do the exact same things as me all day long, if I would find his movements totally comprehensible rather than “symptoms” of something.

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33 responses »

  1. It makes me think of what happens when I’m on the dance floor, (and they say autistics can’t dance!) Interestingly, I’ve heard of another autistic referring to dancing as, “the ultimate stim.” It seems one of the few places where it’s socially acceptable to do so. Like Amanda, it’s not voluntary in the sense that I am consciously directing my body, but it is voluntary in the sense that I can turn it off – although I have to consciously intercede. I’ve been told I’m a good dancer. :-)

    Could stimming be “the ultimate dance?”

  2. I mentioned dancing in this blog entry, and then somehow ended up deleting it in the course of editing. What I was going to say, was that I seem to not dance to music, but rather dance to everything.

    Also, I think there’s a distinction between a voluntary movement that’s done on purpose, and a non-voluntary movement that can be (briefly or for a long period — or sometimes as in my case not at all) voluntarily suppressed. I don’t know how to describe that distinction, but “stimming” falls into the second category — I can sometimes suppress it for a little time, sometimes only partially suppress it, sometimes not at all, but it’s not something I deliberately set out to do to begin with, it just happens.

  3. Well, even on the dance floor, it’s more than just to music. They have blinking and moving lights of shifting colors. It’s a total sensory experience, and very enjoyable.

  4. As I was watching it that hit me too; I saw the synchronicity between the hand gestures and the content, or the mood or context of the content, and I’m nt. When I saw one of the sharp changes in passage the word “lyrical” had come to mind.

  5. To me the whole thing seemed more natural yet at the same time choreographed (word problem, bear with me-bear in mind I’ve got dance and gymnastics background) than any stage musical I’ve ever seen. More in synch, far less stilted.

    I didn’t comment at the time because I thought it was obvious.

  6. All of A’s stims seem to have purpose. Some purpose is blatantly obvious… when he learnt to multiply in his head he would have to be literally leaping around the room to do so. Certainly if he is made to stay still he loses a lot of skills at that time. Some people dont see that because they assume he doesnt have those skills in the first place (grr)

    On the other hand I did intervene when he used to head bang (taught him to rock/flap instead) so I suppose that’s redirection. Eek! Maybe that was inappropriate and I dont know how I’d handle that situation now… I didnt mind him biting his arm (he still does that, not bothered by that) but bashing his little head, I was concerned he would hurt himself badly.

    on the subject of dancing I used to go to clubs and stand right in front of the speakers. Wow! I did dance too but I was never good at it.

  7. Sometimes parents ask if it will be harmful to make the child stop flapping his arms, staring at postured fingers, or tapping objects held to the eyes.

    Honestly, I shouldn’t even be making this post, because I’m feeling rather cranky right now.

    However, I’d love to tell the bitch what happened to us as a result of being forced to stop our “unneccessary,” “pointless” and “random” movement patterns. Ever since we managed to fight against the training to the point where we could do them again, people have noted that we seem more stable, more able to cope with stressful situations than we were before, even more creative. (Then again, trying to explain exactly what happened might not do much good, as the hardest-hit areas were actually things that people who move in such ways are presumed to have no concept of.)

    Of course, this also goes back to the issue which you have mentioned previously of how, often, when people allow themselves to live and act and believe in ways that make their lives better, more comfortable, happier, etc, so many people will pounce on them and shriek that you’re regressing, or trapped in an unhealthy delusion, or how “sad” it is that you do/believe these things, or that it’s simply somehow bad for you in some undefined way, even if doing those things increases your own “quality of life” in every way. Promising “but you *will* be happier when you’re there, you’ll see, you *will!* is a highly unpersuasive argument, given the number of things I was told I *would* be grateful for in the long run, and that gratitude never panned out.)

    (As a side-note, some people have had the perception that I gesture pointlessly with my hands. It looks pointless to them only because it doesn’t conform to any “mainstream” understood patterns of body language. If I move my hands while talking, it is usually to illustrate the spatial relationships inherent in my thoughts. I don’t know if that makes much sense as I’ve explained it.)

  8. John, I’ve never been “normal”, but remember I’m considered to have gone through two major so-called “regressions” in my life. I think I probably know better than you do what I’ve lost and what I’ve gained. And I seriously doubt you understand stimming (or are you autistic?).

  9. Hi Amanda
    I wanted to analyze at several levels the video you posted (Thank you for that) to have an opinion about-and trying to get the message completely about all (and even the subtle) considerations about you wanted to show. Please let me know if you would be interested about my view-and thank you in advance
    Ma Luján

  10. Most of what can be read of my body language, comes not only from the pattern of movement to begin with, but also the pattern of interruptions in that movement. I don’t know how to describe that, except there are qualitative changes that can mean a number of things. (This is also how I read other autistic people’s body language.) My next video (that I’m working on still) has some parts where this is apparent (to me at least) on watching it — if you watch my hand movement (and sort of interruptions or ripples in what that movement would have otherwise been) closely it’s more obvious what I’m paying attention to that way than what my eyes are pointed at, for instance. And these are things that most people can’t read about me, which always surprises me. I’ve never analyzed it much (I just know it, in me and others), but I wonder if there’s a way to teach non-autistic people to decipher the patterns in our body language analytically, the way they are always insisting we learn about them. (Although I note that I read a lot of the non-conscious body language on non-autistic people just fine, it’s the deliberate stuff designed to convey information, that’s like a layer on top of it that I can’t decipher.)

  11. bethduckie, in my opinion trying to stop head-banging is a good thing. Head-banging is bad for people. Head-bangers can get retinal detachment, brain injury, other nasty stuff, and I know of one kid who died from head banging.
    However, trying to stop stims such as Amanda Baggs’ finger-flicking, which look strange but harm no one, is not a good idea. When I’m happy-excited I tense up, jump and flap my hands, making strange noises. If I suppress this expression of emotion, I suppress the emotion itself. I like feeling happy-excited. Why should I suppress that in order to not stand out?
    Note: Head banging sometimes serves a purpose. That doesn’t mean it’s not harmful, but it does mean that you should try to ascertain why they are acting that way. I bang my head when I’m having flashbacks, in her article ‘This is What Your Treatments Do To Us’ Amanda Baggs described head banging for the same reason.

  12. Oh, and regarding dancing, I’ve never been out dancing at clubs or anything, but I just remembered this R&B concert that one of my staff helped set up for awhile back, and invited me along. (Coincidentally the singer was someone that an autistic friend of mine had once played music with or something, I didn’t find out that until later, but I did notice she was unusually comfortable with me.) I was in the front row, right by the speakers, and was moving in a lot of very involuntary (could barely make any change to the movements at all, probably because the sound around me was so loud) ways, including rocking. I noticed after awhile (and tested my theory by changing the pace of my rocking briefly) that the drummer was watching me and using me as a metronome.

  13. And I seriously doubt you understand stimming (or are you autistic?)

    John says that an autistic person doesn’t know what it’s like to be normal. We could say the same thing about John not knowing what it’s like to be autistic (unless he is autistic, which he claimed once, but has behemently denied other times).

  14. About “lyrical”…
    This might not be related, but it might be. I think it is.

    Like, I was talking on IRC chat to a new online friend who types instead of speaking. I was curious how she was thinking before she had words, so I asked her. I know people think before they have words, I mean, they must… But in what way? … I can’t remember that time in my own life to know how it works, so I asked her just on the off-chance that she did remember.
    (I hope she won’t mind if I summarize here what I think I remember of what she said. If she minds me telling this, or if she finds that I am explaining her account incorrectly, I might afterwards ask you to delete this comment…)

    Well, it seemed like all her childhood memories of a time before words were sensory. She said she is not one of those autistics who think in pictures, although she does remember what she saw, also in some cases she remembers more what she felt, or heard, etc. at those moments. She remembers having thoughts about those things she was perceiving with her senses, although she was not putting those perceptions and thoughts into words. She was feeling her thoughts? Thinking her feelings? Feeling and thought were together? Not sure how to say this.

    So I was thinking: when we make poetry with words (there are other kinds or poetry, like Deaf performance poetry which I think it would be fair to say combines mime-pictures with words), we are trying to get at these sensory things through the difficult medium of words. It’s like, before words, the person gets right at the thing that poets have to go back to.
    (This is not to say that people shouldn’t get words because they would be more poetic without words. Words are needed for communication and nobody should be denied that. Also, the difficulty of making poetry, of putting something not made of words into words, is part of what makes poetry creative and beautiful.)
    Rather, I mean that even before words, people are thinking the things that people with words could struggle to think. A child -or any other person- who doesn’t have words is not necessarily missing something in terms of perceiving the world, just because they don’t have the words to talk about what they perceive.

    So I think, in the same way, maybe there is something poetic about interacting with the environment sort of directly, in that way that you described. Sort of closer to what you are sensing.
    I don’t have any typical sorts of stimming that come naturally to me, not any that are obvious, so it’s not something I completely understand. Like, I can’t see the “obvious coherence” between your words in the synthetic voice and your movements, or between the environment and your movements, that other autistic commenters saw. (Which is not to say I don’t believe that; only saying I don’t know how to notice it myself). It had already gradually become obvious to me that stimming is something autistics just feel the need to do at those moments (all of us, if you count non-obvious and ‘passing’ fidget-stims such as moving one’s rings, or folding bits of paper, or doodling in a notebook, while listening, thinking or talking), therefore it is not purposeless, even if an outsider has no idea why that action needs to be done. But I still doubt I would be able to read another autistic person’s body language with any certainty.
    However, I do get how your hand movements can be a sort of direct participation in “the pattern of what is going on around you”… Which, I mean, why not?!

  15. This might sound weird and feel free to tell me if I’m wrong; I’m sure you will :) When I was reading your description I thought of the movements you describe like a cat’s whiskers to a cat. They seem like non-essential hairs but if removed the cat can’t function properly or maneuver their environment as well. Also are these movements you refer to what most ppl call stims or is that something else?

  16. by the way. geniuses, stars of entertainment, great artists/writers, olympians and other sports stars, ppl with other exceptional skills, those are not NORMAL people either. yet many normal people wish to be those people or to be like them. so, NOT accurate, JB. even if it were necessary to be like normal, which is at best highly debatable.

  17. “Claiming that one wants to be abnormal is abnormal.”

    I’m NT. I’ve met a lot of ‘normal’ people. A ‘normal’ behaviour for my age would be going out at night, getting horribly drunk, spending all my money on makeup etc. That’s ‘normal’, and I have no desire for it, thank you.

    While my movements are voluntary, I have tried ‘stimming’ after seeing children with autism doing it. It’s very relaxing, and a de-stressing thing to do. That might be just me of course, but ‘don’t knock it till you’ve tried it’ (unless it’s harmful – I think that not trying headbanging is a good idea) isn’t a bad mantra.

    Oh, and as someone who dances but can find following the rhythm difficult, being so in tune with a beat that you can be used as a metronome sounds so cool.

  18. This and the previous discussion about “looking retarded” seem to reflect an attitude (possibly fairly recent) that people should not have an appearance that causes discomfort to others. An example of this is the (apparently widely accepted) idea that a person over a certain age and/or BMI should not wear clothing that makes these physical attributes (aka “faults”) obvious. One case I remember was where a man’s portly neighbour would often sit in his (fenced) backyard wearing a skimpy bathing suit, and how awful it was when the man caught a glimpse of this horrible sight. Interestingly, this would suggest that it’s not really about being (or looking) “normal”, since, statistically speaking, high BMI people are normal, at least in North America.

  19. Thanks for making those videos. I understand the movements too and think that other than head banging and other behavior that could cause harm to someone, it is harmful to try to make autistic people stop these behaviors.

    The ‘expert’ who said that they promote withdrawal from the other things going on has it backwards, at least based on my own experiences.

    The more I have to try to act ‘normal’ and not stim (or whatever you want to call it), the harder it is to interact with the world around me. Any energy that could be going to interacting with the world is spent trying to appear normal, and usually ends up with me having to remove myself from whatever interaction I was trying to have.

    I think that autistic people often have a different way of processing stimuli and that body movements are often part of that process. Sometimes if my body is still, I can not concentrate or even really hear what someone is saying, but if I am rocking back and forth, I can take everything in and respond.

    It amazes me that someone can even dare to call someone else’s responses to the world purposeless. It is also pretty messed up that someone can assume that someone else does not want a better life for themselves or even that they know what that means to another person.

  20. I am not autistic, but I found this entry to be very interesting and enlightening. I have never thought about stims in this way but I think it is a valid perspective to be pursued.

  21. Seemed similar to my urge to type “all the time” (in air included). My hands may not go high as yours though. (air typing like air guitar?) People have no issues with music conductors naturally following their surroundings or intended surroundings. I immediately found it interesting and brought me to autistic I sat next to at CiCi’s pizza here in Houston. Everyone’s different but it wasn’t unexpected or “scary”. (I remember how everyone was putting about 20′ of space between them and the boy as if it were contagious or something) Practically speaking, I can understand a standard amount of personal space given to avoid bumping someone unexpectedly without their asking. I feel totally at ease with your movements. I almost want to get into it with you. It just might be some regression. I pick up on patterns but it’s much different from my view. I think I see visuals like “smoke”…almost like incense. I actually do almost exactly what you do with music on in….mostly in privacy because in public at work, I’d face consequences. In public when not at work…I could care less. I have seen this with a number of other neurological (not cerebral palsy per se) conditions.

    What this looked like to me was stimming that I would expect actually. ..from vocal and nonvocal alike.

  22. I used to try to get my aspie husband to stop stimming because I thought he looked bad doing it and that people would point him out etc. Anyway, I stopped years ago when I read on another site that stimming would keep him calm. I wanted him to look more normal, I can’t deny it. We live, and hopefully, we learn.

  23. Pingback: Autistic Blog Digest - Autistic and Non-Autistic views of ?Purposeless? Behavior

  24. hi, I have a son who is five years old with down syndrome but we are also looking at the possibility that he may be autistic. logan does alot of stimming such as laying on his back and flapping his arms and legs, spinning on his rear for a very long time. anyway, i would welcome any insight to this question from all of you………..
    when he does this he appears happy and excited, we have tried to stop him but he goes right back to doing it even when we try to redirect, should we just let him do it? what i hope is that with time he will develop more appropriate coping skills to deal with this on his own. what do you think?

  25. It’s interesting, the article mentions staring at postured fingers as sort of a stim. I do that all the time, but never really saw it as a stim sort of thing.

  26. My 9 year old son has autism and is in constant motion, moreso in certain situations, e.g. talking on phone, walks continuously. He also bangs his head, though not as frequently as when he was younger. However, I do not try to curtail these activities/stims. I have never known exactly what he derives from the stim, but I have always thought they must make him feel better in some way, that he is gaining something from it, whatever that may be. I tell his school that if he needs these behaviors and it is “interfering” with the rest of the class, which is a fav statement in the school system then they need to give him a place where he can have these experiences. Since they’re short on room, they chose to let him do it in the class. Interestingly enough, Sam has curtailed his stims in the class to flicking the ends of his fingers and/or moving his legs under his desk, etc. This is his own doing. When he gets home or in the car, he starts his head banging and that’s fine by me.

  27. Amanda, I’m what one would consider non-autistic or neurotypical. BUT, I also have forms, as do a lot of people, of stimming. When I’m talking in a social situation I rarely stand still. I sway. NT’s dont recognize this as stimming because I’m not “stereotyped” as autistics are, but in fact it very much is self-stimulation. I also have problems with hearing, background noises distract me very easily and makes it unable for me to focus on what is being said to me. That in itself is a sensory issue. Where one person may sway randomly or very little, I sway continuously so therefor, one might say my “stimming” is exagerated as they would the movements you do IF I we’re also “labled”. I hope I’m making sense here because sometimes it’s hard for me to put into words what I’m trying to say while typing. In other words, I think there ar a lot of “austics” behaviors, for lack of better words, that are quite “normal” or typical if people would just open their minds and put the stereotypes away.
    My four year old is autistic, on the “higher” functioning end of the spectrum. I hate that term because he is far less,(yes, hes only four of course) advanced than you are. So in my own opinion it would make sense to me to say you are high functioning because of your intelligence level and many other factors. I dont like the classes and levels that many put on autistic individuals. NT’s function at lower and higher levels but that doesnt seem to come with the stigma that it does when concerning autism. A Phd with years of college and training would more than likely be of a higher intelligence than I am at some things but I would not consider that person to be higer functioning.

    Keep up your work of spreading the word about autism. You’re doing a great job of opening the worlds eyes. My son and I are also trying to do our part with promotoing acceptance with individuals with “disabilities”. I don’t like that term either but it seems to be an accepted one. We’re all differently abled, not necessarily disabled. I’ll save that whole soap box for another time! Thanks again for sharing, I really enjoy your website!

  28. hi
    I have commented in your other blogs and was the one that said i don’t stop my son’s repetitive behaviours, I actually join them and try to experience what it is that he is experiencing.
    I played your video 3 times and the 3rd time i closed my eyes and listened and I thought it sounded beautiful…. it was rythmic and musical i thought.

  29. I am a non-autistic person, although I do work with autistic children. I have a tendency to rock with my younger autistic kids. It is a way to connect and it feels very natural to me. I have started to rock on my own however. It is not real obvious to others, at least I think it isn’t. I am wondering if this could be a result of some medication that I am taking or if it just a natural behavior that I have picked up from my students. I am on lamectil, celexa and loramzapan for anxiety/mood stabilizers, after a very tramatic incident in my life. Anyway, I’d appreciate any comments on this. It drives my 18 year old daughter crazy when I rock. Especially if it’s out in public like in a doctor’s waiting room. Thanks a million! Jilly

  30. I find it very interesting that there are NTs here who claim stimming behaviour. I myself was always told that NTs did not exhibit stims and that, if they did, they weren’t truly NT. This was a source of some consternation to me, as I am (so far as I am aware) neurotypical, and exhibit certain (very minor) stims. Rocking, a certain amount of hair-twirling, focused staring, etc. Interestingly, these behaviours have always been described by my peers as “eccentricities”.

    Also of note: after a brief period of hospitalization for self-harm, my therapist suggested to me the following method of “redirection”, you might say. The idea was that, when I felt overwhelmed (whether by emotions or sensations), that I should find an object and explore the texture of that object in depth, utilizing all of my relevant senses, thus “redirecting” my focus towards a neutral object and away from the hostile experience. While a voluntary action, it is very clearly “self-stimulation” in an excessively literal sense– presumably the implication from the therapist is that “voluntary” stimming is acceptable and perhaps even desirable and helpful, while “involuntary” stimming is not. (Note that the action became progressively less voluntary as I established it as part of my routine for the disbursement of negative experiences.)

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