Lost in Space

I think I was born to be in motion. I have difficulty resting when I’m at rest.

If I have to sit in one place long enough, I’ll cycle through dozens of postures without thinking about it. I slouch. I splay. I pin one foot under the other. I pull one knee up, then two, hugging my shins with a hand or arm. I sit on my foot, ankle or calf. I sit crossed legged, even on chairs. I put my elbows on the table, lean my head or chin on my hand, interlace my hands on top of my head. I perch on the edge of my chair, turn sideways, tangle my feet in the legs of nearby furniture.

The variations are endless but they have one thing in common–they orient my body to my surroundings. Without a steady stream of proprioceptive feedback, I start to feel disoriented and disconnected from my body. I feel lost in space. Confused. Physically disorganized..

When I’m at home, sometimes I just go lie on the floor to give my body a break from being upright. Because being upright requires figuring out where to put my hands and arms and legs and feet and often no sooner do I get that all sorted out than that restless feeling starts nudging at my leg or foot or spine and I need to move again.

lostinspace

It’s not that I can’t sit like a proper adult. I often start out sitting with both feet on the ground, arms relaxed at my side. In fact, in new social situations, I make a conscious effort to sit properly. Because I’m not four years old. I’m an adult–often an adult in a situation where I’m expected to look professional–and adults have very specific expectations of other adults in those situations.

Often what I come up with is a tense variation of typical “good sitting posture”:

sittingposture

Then my internal clock starts ticking and one of two things happens. If I’m in a formal setting, my body will grow more and more tense as I work to maintain a polite, socially acceptable posture. Then I’ll start covertly stimming, rubbing something between my fingers or twisting my hand in my pantsleg, something to counterbalance the tension that’s building up as I force myself to be still.

If I’m in comfortable or casual surroundings, it doesn’t take more than five minutes for me to start shifting around, searching for a more comfortable position. On an airplane, for example, I’ll start out sitting with my feet on the floor, book in my hand, arms close to my sides–typical polite seatmate posture. Soon, I’ll have one leg splayed out along the aisle or tucked under my opposite thigh. When that stops working, I’ll slouch and pin both knees against the seat in front of me or turn sideways and pull my legs up to my chest or fold one leg across the knee of the other, wedging a foot against the seat in front of me.

The fact that I’ll start stimming when I can’t freely change my posture often probably indicates that the positions I use to feel comfortable are in fact themselves a form of stimming.

Reset, Relax, Repeat

My body has a time limit on any one position. Even when I’m trying to fall asleep, if I don’t nod off right away, I need to keep changing position every ten minutes or so.

When I’m still, I have a gradual build-up of . . . I don’t know what. Tension? Discomfort? Disorganization?

I start to feel more and more uncomfortable until I have an uncontrollable urge to rearrange myself. Once I move into a new position, I’ll feel comfortable–momentarily at rest. Then, gradually, the discomfort starts building and soon I have to move again. Sometimes it’s only a matter of shifting back and forth repeatedly between two positions–a trick I used a lot at university to avoid adopting too many odd slouchy postures in class.

As important as the movement–and here’s where I think the particularly autistic aspect of this comes into play–is the position of my limbs. I almost always have one part of my body pinned, pressed, squeezed or wedged against or under something–either another body part or a piece of furniture. I think this deliberate pressure creates feedback that grounds me physically. It reminds me of where my body is in space and makes me feel safe in a way I can’t describe with words.

Physically, pressure equals organization.

Perhaps it’s like swaddling a baby. Mothers have been snugly wrapping up fussy infants for centuries. There is some science to back up the practice, suggesting that swaddling calms babies by enhancing motor organization and self-regulation. Once babies reach a few months old, swaddling is no longer beneficial or necessary because they have a reduced startle reflex and better-developed motor control.

Maybe there’s something very primitively calming about the kind of pressure I’m constantly seeking–a sort of localized form of swaddling.

Or perhaps it’s simply about feedback. Given my poor sense of interoception and my strong drive for proprioceptive sensory input, it’s not surprising that I need to intentionally create a steady stream of input to remind me that I physically exist.

125 thoughts on “Lost in Space”

            1. Left over right for me. Hate sitting on chairs ‘like a grown up’, feel like I’m forever trying to figure out what on earth to do with my arms and legs, such a nightmare. Floors are so much better. Or chairs that you can sit cross legged in.

        1. Depending on my position, I can go either way. I was ambidextrous as a kid (they trained me out of it in school because they thought it would make my handwriting neater – nope, but it did ensure I had a heckuva time taking notes and writing tests when I badly sprained my wrist – which they refused to accommodate, for some strange reason), and I think that might have something to do with why my right-over-left/left-over-right alternates based on position?

            1. No, I was naturally ambidextrous and they forced me to be right-handed – my parents have photos of me coloring with both hands at the same time as a kid, and they say I didn’t start favoring my right until I was about 9 (after being forced to not use my left in school for 2 years). The force left-handed kids to be right-handed was still a thing when I was a kid, too, even though it was losing favor, but they mistakenly thought it did no harm to ambidextrous kids to be forced to be right handed, and they thought it would improve our handwriting. It didn’t help my handwriting a bit, and I was a kid with dysgraphia, so when I switched hands, it was often because my first hand had started to hurt, so it did harm me by forcing me to write in pain, and also when thanks to being kept from using my left hand, I couldn’t take notes or write tests when I had a sprained wrist (ligamentous laxity + klutz = a looot of sprained wrists). Not sure about whether it harms other naturally ambidextrous kids, though.

              1. Oh, it sounds like you might have learned to write ambidextrously out of necessity. That’s really interesting. Are you still ambidextrous? Sorry if I’m being overly nosy. I ask a lot of questions so feel free to tell me to quit it if it’s annoying.

            2. Sort of. I can only write with my left hand very slowly (but my left hand is actually neater than my right). I do have dominant hands for stuff, but it’s task-specific: I eat left-handedly, tie my shoes right-handedly, do chemistry left-handedly, and do martial arts right-handedly, as a few examples. Some things I swap: I unscrew stuff with my left hand and screw them in with my right. 😛

              1. “I unscrew stuff with my left hand and screw them in with my right.”

                That’s funny because whenever I have to screw/unscrew something I need to repeat the “righty tighty lefty loosey” thing in my head to remember which I should be going. But you’ve taken that to a whole new level. 🙂

              2. I’m like this too! I use my left hand for writing, but I’m very close to ambidextrous overall. I often swap hands part way through an activity because one is getting tired or I need a better angle. Other things I have a preferred hand for but the balance is roughly equal. When I play badminton, I serve with my left hand and then swap the racket over to my right hand to play!

                Also, I’d be interested to know if you find it easy (or difficult) to write backwards? As in, mirrored writing? I find it very easy to do, both with my left hand and my right. I always thought that was normal until I talked to other people and found that most people can’t do it naturally and have to think very carefully to plan it out. My theory is that it’s because I mostly write with my left hand. Left-handed kids often write backwards at first, because their hand is going in the same directions but mirrored. So I think I kind of kept that obscure skill as a result of that.

    1. Oh my gosh! My feet! I go one further, if I’ve no shoes on ( preferred), I lock one big toe around the other in a pincer

  1. This all resonates so much with me. Pictures of me sitting down look like someone who’s never used a chair. Trying find a comfy position generally involves a long process of awkward faffing, sitting, stimming, faffing again, etc. Also, and maybe this is a little off-topic, but I find it particularly hard to figure out where to put my various limbs when I’m snuggling up with a partner. Not just one but two bodies to attempt to organise in space. I was wondering if you, or anyone else, had any advice on this sort of thing? (As you know, resources targeted at autistic adults, especially anything that acknowledges we may have romantic and sexual relationships, is pretty hard to find)

    1. ” . . .like someone who’s never used a chair.” YES! That sums it up perfectly.

      I find snuggling kind of awkward to begin with so I might be the wrong person to answer this. I tend to be like “okay, your ten minutes are up, now what should we do?” Not the most romantic approach. Maybe someone else will have more useful thoughts. I do like spooning because it means my partner has to do most of the arranging of limbs and I get a good tight squeeze. Also, just being side-by-side and holding hands or draping a leg over his legs is nice in terms of something that works for me for more than ten minutes. 🙂

    2. For face to face lying down cuddling, I scissor. First press abdomen against my partner’s, then put my bottom leg between his/her legs (bending the knee a bit, or even putting my thigh against his/her pubic bone if he/she likes that) and hook my top leg over his/hers in whatever way feels comfortable for me. Arms are the hardest, but I usually settle for his/her arm stretched out under my neck so that I can still rest my head on the pillow, then curl up my bottom arm close to my shoulder (like when you’re doing a biceps curl, elbow tucked close to your side, palm facing towards your shoulder. Just pretend you’re lifting weights). The top arm can go anywhere. It’s the playing arm!

      OK, that was probably far too much detail, lol.

        1. I have a feeling that the average NT would be amazed at me having given this a lot of thought and working out the pose that works best for me. And then being able to describe it step by step without actually having someone to cuddle with. 😛

  2. I had never thought much about what I do with feet until reading your post – suddenly it all becomes clear. I have always wrapped my feet around chair legs, sometimes so hard I will notice a bruise on the top of my foot later. If I sit in a seat behind another, for example on a train, I’ll most likely wedge my foot against the one in front so my toes are at an uncomfortable angle. I had never made the connection with my AS until now. Some how it gives me a sense of control & calm even if it may be painful.

    1. Right now I”m sitting with one leg tucked under me and the other wrapped around the chair leg, which is my default “working at the dinner table” posture these days. 🙂 And I know exactly what you mean about the foot wedging thing. I like to wedge my foot so it’s flexed back toward my calf. It’s so funny to realize I’ve been doing these things all my life and never really noticed until recently.

  3. Once again, we’ve had a me to moment. I read your posts and think, I am so glad I am not the only one.

    At work, in meetings, I have to make a conscious effort to sit properly and not fidget. I roll my toes in my shoes to help keep the rest of me still. Now that I work from home, I actually have my desk on a banquet table. The table is up high at counter height. I raised it up with 1.4 inch PVC pipe. So I can sit, stand, walk when I talk on the phone, etc. Under the desk I have plastic storage tubs. I know when I am getting stressed out, as i’ll stop to get water or use the bathroom and my knees are HURTING. I’ll wedge my knees up into the bottom of the desk and rock as I work on complex projects.

    In the living room, I have one of those big blue bouncy exercise balls that sit in front of my TV chair. My shoes come off, legs rest on the ball, then I move and my toes/feet roll around the ball. The poor dogs get as close to me as they can but the ball usually is in their way. I never sit still.

    1. Meetings are the worst. Working at home is the best. 🙂 I move around a lot when I work too. If I don’t, I find that I have weird cramps and pains from sitting too long in an awkward position. And I recently got a blue (!) exercise ball to use for stretching at the end of the work day.

  4. Absolutely! There’s also something that I always, always did as a kid, but stopped doing for the most part as an adult because, well, it’s not socially acceptable: Perching. As in, sitting on the top of the sofa. On the arm of the chair, instead of the seat. On anything that I could balance on. Anything but the seat.

    When it comes to the “pressure,” I understand that, too. One of my favorite things as a kid was to wedge myself between the mattress and the box spring. Best. cozy spot. ever!

    1. This weekend I was at a museum and kept sitting on the ends/arms of the couches that they had in the middle of the gallery. My husband just rolled his eyes when he saw me. Do you find that letting your legs dangle over the edge creates a positive kind of feedback or did you have another reason for perching? Also, I’m so not socially acceptable. 😀

      When I was a kid I liked to lie under my beanbag chair to watch TV instead of sitting in it.

      1. Yes! I’m not alone, haha. I’m the only person I’ve ever known who perched. I don’t dangle my legs off the side, though. I usually sit cross-legged, if I can, or with my knees pulled up to my chest. Maybe it’s a sense of having to orient myself perfectly to stay on the small surface? Maybe it’s the knowledge that there’s nothing around me to touch me, and no one can sit next to me? I’ll have to think on it!

        Now I want a beanbag chair. To sit under. 😀

          1. Or maybe they’re just chairs with really wide arms? Haha, I’m actually the person who would trip over a crack in the sidewalk (and have!) Maybe it was my way of subconsciously trying to train my balance?

            1. Or you had a small tush. 🙂

              I tripped up the stairs last week while on a “date” with my husband and landed in a very unladylike position. As my parents used to say, “you can dress me up, but you can’t take me out.”

            2. Oh. And you should see the contortions of positions that I end up in while trying to find the perfect comfortable position while nursing my youngest! Right now, I am cross legged, with my left foot under my right hip, and my right leg resting on my left knee. Before that, I was sitting on one foot, with the other leg stretched out and laying on another chair in front of me. Before that, (before nursing) I was sitting with my knees up to my chest.

              1. Oh I do both of those sitting my feet/let positions a lot. I almost always sit with my right foot under my left thigh or hip (but never the opposite) when I’m working at my computer.

  5. I don’t know if this counts, but when I sit, I have my feet in tiptoe-walking position against the floor (which is how I walk so I guess that’s my default position). I also pace A LOT; it’s just as well the room below me at uni was a bathroom rather than having an actual resident in it! I’ve always seen my pacing as stimming, particularly as it pretty much doubles if I’m listening to music.

    1. I frequently see pacing listed as a stim and I can how that would drive a downstairs neighbor crazy. 🙂

      I think I sit with my feet in every position except flat on the floor. Toe walking position is a common one that I didn’t realize I do until I just tried it out. I also like to curl my toes under and put just the tops of them on the floor.

      1. Haha, I didn’t realise I did it either until I was about 13ish and my parents pointed it out, then all the various allistic people in the room tried it out and found it really uncomfortable 😄

  6. Huge me, too moment for me, too. I move all the time. In addition to sitting like photoed in the the link above, I also have a weird semi-crossed-legged position I do when my seat has arm rests to it. I never use arm rests, so I wish I didn’t have them so I could sit cross-legged, but if I try in this chair, the arm rests dig uncomfortably into my legs. Then again, when my chair has no arm rests, I guarantee my squirming around will have me fall out of it within an hour. Anyway, if I can’t sit cross-legged, I cross my legs under the chair with the tops of my shoes resting on the ground, and my right ankle resting on my left heel. It’s super comfortable.

    I’ll also sit with one leg under me so I’m sitting on my foot (only works in sock feet – if you have shoes on, your shoe will dig in uncomfortably), or kneel in a chair with my feet hanging out the back of it (this only works if the chair has an open back) or sit with both legs wrapped around the front two chair legs, or I’ll crouch in the chair kind of like L from Death Note if you’ve ever seen that anime (do if you like supernatural crime thrillers – it’s a good one. I recommend English-subtitled Japanese, but that’s mainly because I hate dubbing).

    1. It’s funny that you specifically said that you put your right ankle over your left heel because when I sit with one foot on top of the other (like in the linked photos in the first comment), it’s always left foot on top of right. The other way around makes my ankle hurt.

      I like to crouch in chairs too, especially when I’m feeling overloaded, but that one is really hard to get away with in public. Sometimes I settle for the leg up, half crouch. 🙂

      1. If I’m sitting foot-on-foot, it’s left over right. If I’m sitting pseudo-cross-legged, it’s right over left. I’m a bit picky. 😛

        I can do half crouch but I prefer full crouch or no crouch.

      1. I had a “Why, yes. I do sit weirdly. Does this face look bothered?” sticker with L. looking unimpressed on the back of my old laptop once. Made more than a few fans of the show crack up when I was doing the L Crouch.

  7. I just read the post, telling myself that I wasn’t doing that at all… then here I am, sitting on my foot with my heavy purse on me, just for the weight. I didn’t know that those way of sitting where related in any way to autism, I was simply thinking being «in a good posture» was uncomfortable. Most of the time, I sit like L from Death Note, even in front of my friends who don’t care anymore. If I could do that in school…

    When I’m not moving for a time, I feel like I forgot about my legs and arms, or they can actually make me suffer. Like right now. I have to keep moving or putting weight on them in order to avoid the bad feeling. Good way to stay healthy, bad one to study. It seems to me that the «forget about me having legs and arms» goes worse with stress through.

    Does anyone got problem with good posture? Keeping my back straight is something of a hell, no matter if I’m sitting or moving around, the only way for me to actually be near «having a good back posture» is to put an heavy bag on one side. If I don’t, I curve back to foetal position. Which is rather comfortable, with a big pillow.<3

    1. Moving to “avoid the bad feeling” is exactly what I was trying to get at. 🙂 I had to Google L from Death Note because you’re the second one who brought it up.

      I’m curious about your posture question too. I have terrible posture. So bad that my husband regularly comments on it, certain that I’m going to end up looking like the hunchback of Notre Dame in my old age. I’ve read some things about hypotonia (lax muscle tone) being common in autistic people so perhaps that’s a factor?

      1. I have horrible posture, too. I’m trying to correct it, but my slouch is quite epic. I’m 5’1″ with the slouch and 5’4.5″ without it.

      2. In fact, my back is pretty strong. I can lift a lot (I’m almost as strong as my dad!) It’s just that… keeping a straight back still hurt. Like if my bones weren’t mean to be in a straight position, but rather in a sloppy-curvy one. I do lack muscle tone but with training it doesn’t change at all, no matter how much effort I put into having a good posture. It just hurt, and after half an hour I must sit, or I will fall on the ground from the pain.

        1. I’m actually very fit for my age too so the posture thing is a mystery. I have good posture when I run or do other exercise activities but everyday sitting and walking – I’m naturally slouchy and curved.

          The pain you describe sounds quite awful. 😦

          1. It’s the same as normal back pain but it usually happen when I’m stuck in the bus or the subway so… it’s not really the pain in itself that make me drop, but rather a mix of lot of thing. I’m subject to low blood pressure and low blood sugar and being tired usually mean drop on the floor. It’s just really annoying.
            Maybe we’re just simply mean to have a different posture? Most NT I know find my way of sitting uncomfortable as heck.

          2. I’m funny: I don’t have posture issues standing or walking around, I do reading (I like to read with the book in my lap, using one hand to turn pages and the other to fidget… means you hunch over the book to read), sitting sometimes (if I’ve been sitting a long while and gotten uncomfortable, or if there are people over and I’m getting overloaded), and standing around always. But get me on a hike or out running, posture issues disappear. I really think it’s a habit thing for me.

            1. Oh yes, one hand to turn the pages and the other to stim with. I usually find a way to sit sideways in the chair or slouch down so I can balance the book in my lap, which is why I like big weighty hardcovers over pocket paperbacks.

            2. I didn’t realize I did that until I saw a picture of me reading as a kid: One arm up in the air doing a finger-flutter (one of my concentrating stims), the other holding my book. I also now realize why my aunt used to yell at me not to do “that” with my hands as I read. She’d always answer, “You know what I’m talking about!” if I asked her what she meant – my solution was to just stop reading in the same room as her. 😛 This aunt would also yell at me if I toe-walked (“Stop walking like a [ableist slur]!” – this said in the same room as my cousin with CP who had to toe walk because her tendons were too short to not toe walk), yell at me if I was too fidgety, yell at me if I talked too much about weather (“Nobody cares about cumulowhatever clouds! Just shut up and watch TV!”), make fun of my stutter (“Just spuh-spuh-spuh-spit it out!”), and yell at me for using words I “didn’t understand” if I used big words too much because “trying to sound smart just makes you sound stupid” – even though I did understand them. I didn’t like her much.

              She’s a lot nicer to me now than she used to be, but I always kind of keep her at a distance because I don’t know if the niceness is a mask and she’s just looking for something to make fun of or if she’s actually changed, and I’m not willing to take the chance.

    2. Problems with posture seems to be an autism thing due to weak core muscles. I always think of how Carly Fleischmann stands in that overload video (http://www.carlyscafe.com if you don’t know, major visual and auditory overload if you’re sensitive to it though, but one of the best ways I’ve found to explain overload to neurotypical people). Anyway, core strength. It’s a thing. Doing exercises that make your abdominal muscles stronger seems to help autistic people in not getting so tired from sitting or standing up straight. I don’t want to call it good or bad posture, it’s just exhausting to keep a posture that your muscles aren’t trained for.

      1. I can do 75 sit-ups and comfortably swim for an hour but I can’t stand up straight! Sigh. I think for me it’s as much habit as anything. What you say about the muscles being exhausted by what they aren’t trained to do makes sense. Maybe I need to be more mindful of my walking posture and see if it’s something I can gradually change.

      2. I do have some visual and auditory sensitivities, not as far as it seems to her, but still. I wasn’t able to keep the sound up to the end and had to start my music again in order to stop myself from wanting to tears my ears appart x’).
        I really think we’re not meant to keep those «formal» postures. What’s wrong with standing in a way we are comfortable with?
        I’v been trying to actually stand straight for long, never get to last more than 20 minutes or so.

      3. My core is pretty strong, actually. I’ve done 100 ab peels at a stretch (harder than situps, in my experience. Like a situp, but your feet are out in front of you and you go sloooowly to make it harder), I can do other core stuff better than most people with really good posture compared to me. My posture isn’t a problem when I’m doing stuff, just when I’m standing or sitting around. Like the others, bad posture for me is more of a habit thing than a strength thing for me. It’s not an “I get tired from sitting/standing up straight” thing as an “I’m literally not aware I’m not standing/sitting up straight unless I remember to do it” thing. My back will get sore after a while if I’m trying to remember good posture and people are looking at me, but more because when I’m thinking about it, I overcompensate and my back tenses up than because sitting up straight is hard. If I’m trying to work on posture on my own, I can sit/stand up straight for hours just fine.

        The other thing that makes me think it’s a habit thing for me: Hunching over makes it easier to breathe in an asthma attack, and I had ridiculously uncontrolled asthma as a kid, so pretty much all of my photos as a kid show me hunched over

        1. “I’m literally not aware I’m not standing/sitting up straight unless I remember to do it” thing

          Yes, this! That’s interesting about the asthma. I had moderate asthma as a kid but I’m not aware of it affecting my posture. Makes sense though, since it seems like it would relax the diaphragm a little.

          1. Well, the tripod position is something taken by people who are having trouble breathing – it helps you use the chest and neck muscles to breathe better. If you have trouble breathing a lot like I did as a kid, makes sense sitting like that could be habit

    3. I have very bad posture. Always sit with a slouch. And I’ve -never-, even when young, been able to stand for very long without needing to lean on something, unless I’m walking.

  8. Oh my goodness! THAT”S what that is! I have always noticed it and admired all the people who could sit still…but I never knew WHY I could not. Honestly, I do the same as you in new social situations but I actually start to get gut sick if I can’t move. By the end of it all I am in so much pain I can not handle it and It will not go away until I lie down in a dark, quiet room…and during the day I have to lie down lots or I feel sick:)
    I really get this! Thanks for enlightening my world:)

    1. You’re welcome! I’m kind of envious of people with good posture, especially other women. It seems like they project confidence and professionalism in a way that escapes me.

      Sitting still is hard. I think the hardest is sitting still at a long meal with other people, like in a restaurant. If I’m not eating, I’m stimming beneath the table to release the extra tension that builds up.

      1. Yes, at meals or my husband’s family ( Who are very proper and sit at the table for two hours after…) I put my foot up under my leg on the chair and lean on the table…I know they think its rude or improper…but I can’t help it. I will literally go crazy if I can’t put my feet up. At home I rest my one foot on my kids chair when we eat and I get up from the table as soon as possible. In restaurants I tap my foot or fingers and get up to go to the bathroom just to walk:) I really wish more people understood this:)

        1. I get up as soon as I’m done too. If I can’t, I get really antsy. A few weeks ago i was out my husband, daughter and her boyfriend at a hibachi place. I was feeling really unwell and in pain and as soon as I finished eating I started stimming very obviously (rocking a little and bouncing my fists on my thighs) and almost simultaneously my daughter and husband both looked at me and said, “you need to leave now, don’t you?” It was nice that they were both able to read that and understand.

  9. (Disclaimer: i’m not a medical practioner, just Asperially obsessive in my research.)

    The difference between stimming, what Aspies and others on the ASD spectrum do, and having restless fidgets, what ADHD-ers (often comorbid with autism) do, is that Aspies do it for fun or to self-soothe when stressed or overstimulated; and ADHD-ers do it to stay alert and focused, since their hypothalamus is under producing dopamine.
    Although completely unintentional, the fidgeting serves to wake our brain up.
    A fairly good guideline is : if not moving feels bad and eventually you have to move to relieve the pressure- that’s ADHD. If moving, or whatever the stim is, feels pleasurable and or soothing, that’s Autism.
    As we age, the ADHD restlessness may be solved by shopping, gambling, driving too fast or making impulsive decisions without weighing the consequences. Stimming doesn’t evolve quite as much. If you like spinning or stroking your hair or repeating commercials, or picking your nose 🙂 then you’ll probably like that most of your life, though you may learn to tone it down in public.
    Again, one person can have both experiences, including me. Two examples: I shift around and move my feet and legs a lot when bored or tired and get that “itchy” feeling; but, I rock my body back and forth when I’m sad or singing to myself.

    1. Is it possible to actually have the «moving urge» to relieve bad feeling without any trace of ADHD through? Because I have both sensations and, as far as I know, I don’t have ADHD nor any symptom of it.

    2. Are you sure? Because if that’s true, that would be the ONLY symptom of ADHD that I have. It just feels painful to suppress my natural behaviour, which isn’t all that fidgety I think, but it’s something that people have told me I should suppress to fit in. When I can fidget it feels very soothing. But it is still something like what you said, the pressure builds up until I *have* to move.

    3. I’ve never heard that before. I was tested for ADHD and passed with flying colors so my restlessness isn’t ADHD-related. I find stimming to be multipurpose. I stim when I’m happy, anxious, stressed, tired, bored, overloaded, uncomfortable, distracted, excited. I find it really focusing when I’m working. It helps me think and process things. But I also find it very soothing when I’m overloaded or stressed.

    4. Autistic stimming can be due to under-stimulation on a sensory channel, having sensory under-sensitivity on the proprioceptive channel is extremely common in autistic people. This feels like discomfort from not moving, not getting feedback of where the limbs are. It’s necessary to move in order to give this channel some stimulation. This isn’t anything to do with ADHD, although one can certainly have both.

  10. I want to share an insight I had recently that maybe might help others on the spectrum. You see, for years and years I have had pain. Chronic pain mostly in the muscles of my body, shoulders, neck, feet, legs, hands oh, everywhere! I have been diagnosed with arthritis, ME, and even got an MRI scan for MS. Nothing. So, it’s all in my mind.

    Well the pain is better some days than others. About 6 months ago I was goin through at pretty good patch not too much pain when I had one day a very very stressful event with a large group of people. The next day I could hardly move! The pain was SO bad. And then I realised – people make me hurt!

    I have observed myself since then and I realise that I am so stressed in company that I hold my whole body in tension. This tension is part of the effort to be normal of course. Like you, Musings, on my own I fidget, rub, squeeze and press my body. In company I go rigid.

    Well I don’t know if anyone else has had anything like this, but for me it was quite a revelation. The pain can still be bad if I have had a lot of social events, but at least now I know it’s nothing serious. Just people! 🙂

    1. Wow! I wonder if this is me, as well. I have chronic pain, terrible inflammation, pain in my joints, muscle pain, constantly. Tension headaches, body stiffness. It’s awful, and does become worse, I think, the more stressed I am. I’ve been tested for RA. Nope. I also have a very confused chiropractor.

    2. A while back, I was just watching a video on livestream that had a lot of people active in the chatbox, and even though I wasn’t really participating, I slowly started realizing that my entire body was horribly tensed. My legs got so bad that they just ached afterwards. I think it’s just the result of anxiety, which I have plenty of.

    3. Good detective work! 🙂 That kind of tension can add up to serious pain.

      I’ve noticed that I can get major tension in my shoulders or back or neck from holding my body in weird tense positions for long periods of time. I’ve been using my exercise ball to try to stretch and relax those areas at the end of the day. It’s nice to just lie back across it and roll around, stretching my arms out to the side. .

      1. I keep meaning to start yoga I am sure that would help. I dread doing a class though and am annoyingly disorganised at buying stuff, but I think I will try to get a DVD. Might help.

  11. My first thought when I started reading this was that it must not apply to me, because almost everything I enjoy doing requires sitting still for long periods of time, but then I realized I was sitting with my legs crossed pressed against the armrests of my chair and the front of my desk. While I was reading, I switched to sitting with one leg forward with the other foot tucked under it, then moved to sitting sideways with my legs crossed so they weren’t pressing against my desk, then to sitting with one leg forward with one foot braced against it…etc. And I’m never able to find a comfortable position when I’m trying to sleep; I always end up twisting around and trying to figure out if I’m more comfortable lying on one side then the other or on my back or wherever (which is made harder by the fact that I like having piercings in my ear cartilage, which has been limiting the number of ways I can sleep while they’re healing).

    Have you mentioned before that you like swimming? I think I remember you writing that in one of your posts, and I’m wondering if that has anything to do with sensory seeking and proprioception. I haven’t gone swimming in a long time, but the hot weather has been making me think about how much I used to love swimming and the feeling of being in the water when I was a kid.

    1. Yeah, your description of all that movement is me exactly. I have the most luck falling asleep quickly when my husband spoons me from behind and throws a leg over my legs. The pressure is very relaxing. Short of having a human weighted blanket, I don’t have any suggestions there. 🙂

      I do love swimming – not only the feel of the water, but the sensory deprivation of being under water for long periods. I’ll swim for 30 minutes nonstop, which means 30 minutes of nothing but the sounds of the pool and my breathing. It’s so relaxing.

          1. Oh yes, me too! I crave the sea. Do you know the surfer Clay Marzo? He also has Aspergers but the videos of him surfing and being around the water are just wonderful: claymarzo.com I recommend watching the Just Add Water video about his asperger’s diagnosis too. (sorry if I have mentioned him before)

        1. … maybe that’s why, when I took baths as a kid, I liked to lay under the water with everything but my nose submerged and just be still (can’t do that in a pool or in the ocean. I tried. Inhaling water isn’t fun).

  12. Thanks for writing this. I experience very similar feeling but could not have expressed it myself. I Also suffer from ‘restless leg syndrome’ at night and wonder whether it is linked to the AS.

    1. You’re welcome! I’ve read a bit about restless leg syndrome because I thought I might have it, but it sounds much worse than what I experience. I’m not sure if there’s a link with AS, but perhaps others here will know more.

  13. All this totally hit home with me… I do exactly all of the same things, I just hadn’t thought about it.

    This is one of the things that really, really bothers me about the confinement of airplane travel… The limited options for frequently rearranging myself in the seat (limited sitting variations available without flowing over the boundaries to other people’s seats).

    I’m always changing positions, moving around, sitting on my legs or a foot, slightly rocking my body or limbs when I’m focusing, subtly but frequently touching things (especially seeking out hard surfaces, edges, pressure sensations and temperature differences)… needing constant “feedback” sensations from the space I’m in. That is what it is.

    I also try to sit properly when around people, but when something interesting grab my attention then I forget it. Then suddenly I notice my that sitting position is too child-like, hanging asymmetrically on the edges of the chair, touching and leaning on things and just not sitting properly as an adult. I feel awkward and correct my position to “good sitting posture” and focus on that for a while I loose focus on social aspects, like the conversation. Then something grabs my attention again and the focus on sitting properly disappears, and my sitting posture regresses into its natural tendency to constant variations again.

    This bothers me at job interviews. The need to keep an eye on myself as to retain a good sitting posture, and the vigilance it takes away from other aspects of the interview (like trying to answer strategically and notice conversation traps – like I wrote about in this post). (Hope it is OK that I linked to one of my own posts, otherwise please let me know… it is not something I do often anyway).

    As important as the movement–and here’s where I think the particularly autistic aspect of this comes into play–is the position of my limbs. I almost always have one part of my body pinned, pressed, squeezed or wedged against or under something–either another body part or a piece of furniture. I think this deliberate pressure creates feedback that grounds me physically. It reminds me of where my body is in space and makes me feel safe in a way I can’t describe with words.

    I think that is the reason for me to… Spot on description!

    1. It’s always okay to link to your blog! I want this to be a place where we can share resources and people can find new things to explore. That’s a great article by the way – I went to take a look and ended up reading the whole thing. And now I’m going to go leave the rest of my comment over there!

    1. I made the illustrations at Pixton (http://www.pixton.com/). It’s a free comic strip making software that has some stock characters and backgrounds you can work with. It was pretty intuitive to learn and good for creating things like this where I want to illustrate a particular body position, because I can’t draw at all. I wish they had a character that looked more like me though. I guess that one looks like me in spirit, if not in body.

      1. Awesome! Thank you so much for the tip!!! That will be very useful, I’ve been wanting to find an easy way to make my own illustrations (so far I’ve mainly been using free cliparts from Open Clipart plus sometimes my own photos, but they are often not spot on relevant for the text, and are just random pictures with no consistent style).

    1. I usually pick a seat near the front so I can put my feet up on the railing. I actually got “yelled at” once by a theater usher for doing that so now I feel a little odd about it, but still do it anyhow.

      1. I usually go to the drive-in or the dinner theater so I can stretch out in my car or in a booth without bothering others with my constant movement.

  14. Just a side query, did anyone else have a strong need to be upside down as a child? I’m thinking shoulder stands, head stands, bicycling legs in the air? I do hope this isn’t a thread killer but I used to drive my parents nuts with this and wondered if it was common?

    1. I loved hanging upside down on swing sets or monkey bars. When I was 4 or 5, I fell out of a tree while hanging from a branch and scared the heck out of myself because I got the wind knocked out of me. Of course I went and hid in the garage until I recovered because I figured I’d get yelled at for falling out of a tree. 🙂

      I don’t really like being upside down anymore. Not sure when it lost its appeal.

    2. I used to “sit” upside down on the couch: my head hanging off the front of it and my feet over the back. Drove my parents nuts. I didn’t like hanging upside down because I didn’t have the coordination to pull it off, but I did hand stands in water a lot, and I always wanted to join gymnastics or freestyle skiing so I could learn to do flips and stuff. My parent’s didn’t let me. “Too dangerous.”

      1. 🙂 I remember doing that (and I have a photo of my son doing it too), I’ve remembered that I also used to ‘walk the walls’ at night – lying on my bed with my feet walking up the walls, then in an arc and down again – my parents moved my bed to an outside wall

        1. Or hanging over the edge of the bed. Or going down the stairs headfirst (that one, I couldn’t do if my parents were around because they’d flip out on me for it, understandably in retrospect).

    3. I did that–and I still do. Once I stopped going to gymnastics (around the time I started school) I’d put pillows on the floor and try to do handstands or headstands. And I used to hang upside down from bars at the playground whenever I got the chance.

      More recently, I’ve been able to camouflage it as an interest in parkour and fitness/strength (currently working toward handstand pushups and one-armed handstands) but I still do things at “inappropriate” times. Like handstands against a wall waiting in line at an amusement park or in a parking structure after watching a movie.

      1. If I was younger and still had two good knees, I would love to try parkour. 🙂 It looks like exactly my kind of sport.

        I guess age cures us of some of that “inappropriateness” eventually as I couldn’t do a handstand anywhere, let alone in a parking structure. It sounds like you’ve found lots of good outlets for your sensory seeking and are staying in great shape in the process!

        1. That it’s very cool, I live watching parkour videos on YouTube. I have poor upper body strength but did yoga as an adult – being upside down is rather prized in yoga, I even had a teacher who recommended holding my babies upside down by their ankles!

          1. My yoga teacher encouraged us to try headstands but I never go past the knees on elbows position. My husband, on the other hand, can stand on his head for minutes at a time and even do all sorts of things with his legs while keeping his balance.

  15. Seriously interesting!

    I, too, slouch, and shift around when I’m sitting. (And that foot position mentioned in the first comments seems fairly comfortable – I’m left-over-right, for both that and clasping my hands together, but I’m naturally right-handed.)

    One thing about the slouch / instinct to fetal position…. I curl my shoulders in defensively, and tilt my head down. Tilting my head means that I can avoid looking people in the eye, and curling my shoulders in (bringing them forward and in towards my chest) is semi a wallflower stance, and semi a protective stance. “Don’t let anyone hurt me.”

    There’s also the element that I think my lower back is weak, at least partly because I’m tall, and the lower back weakness seems to be inherited (my parents also have shown some evidence of the same thing).

    At the dinner table, half the time I’m sitting at an angle to the table itself (as well as the chair!). My dad’s commented on it a number of times recently. And I shift my legs / feet a lot (though not necessarily quite as often as you, Musings).

    Definitely saving this post as a Like, and I think I’ll take it to my next appointment with my psychologist, see what she thinks!

    😉 tagAught

    1. Oh, I’d be curious to know what your psychologist thinks!

      I think my default walking position is head down, shoulders slouched and what you say about the reasoning behind it really hit home with me. Wow.

    2. Hey, same here! I’ve had family tell me not to slump my shoulders so much, and I never know I’m doing it! It must partly be a physical thing, because I remember that the only time I was able to walk confidently was in college, when I had so much free time, I could devote 3-5 hours to exercise and found myself breathing well for the first time (beyond that I never get that much exercise and feel like I have allergies 24/7). But my uncle also noticed that I was slumping my shoulders when we were having lunch with relatives and friends, and, looking back, I think the reason for it is protective, too. At the time I was feeling really uncomfortable about being in a social situation with people I hadn’t seen in years and was trying to understand what other people were saying.

  16. Same here. I didn’t walk like that until I started being bullied a lot in school. When I got bullied, I started walking like that to avoid getting noticed.

  17. I understand the movement you describe in my kids. For me, I bought a chair big enough to fit me all curled up, legs under or to the side almost in fetal position. I love that you called this Lost In Space and it brings back memories of the show on TV. My dad called it “No Rope At All!” In other words nothing to connect those people to each other when there was trouble or they never had a way to help each other out of trouble in a hurry.
    The same thing I think applies to the body. When you need to move, you need that rope to hang on to. Whether your rope is another part of your body or a chair or the floor it is your tie and you are grounded at least for that moment.

  18. Haha I show this kind of behaviour as well. I dislike sitting on (in?) a chair for a long time, and there have been several encounters in university when I was sitting on the floor in a hallway waiting for someone or class to start, and people passing by either a) gave me weird looks because there was a chair/bench next to me, b) asked if I was okay (I look pale most of the time and there have been occasions on which I even lied down in a hallway to nap), c) offered to fetch me a chair. And in most cases I just react like “Go away, I like the floor, stop confusing me!” 😀 Right now I’m sitting on a bench though, but still I’m shifting around and changing my position ever few minutes.

      1. Which reminds me. I have a real *thing* about having my feet level with my butt and no lower. So I’ve always got my feet up on something or cross legged, like a child. As a teen, I had bad back pain and one of the doctors I saw reckoned my ‘sensors’ (proprioception?) were off, as I would sit in contorted positions for hours and then only feel the pain when I tried to move out of them.

        1. Maybe they meant your interoception? I think that’s what would be registering the pain. Proprioception is more of a balance thing, but that could be why you needed to sit in the weird positions to begin with. 🙂

  19. YES! YES! YES! I love sitting on the floor. When I’m in a chair I sit “indian style” or almost always right leg under left thigh. When I have to sit “proper” I bounce or move both legs. I’m just now learning about “stimming” and realize that describes what I’ve been doing! Also, yoga has been a tremendous help. The only difficulties I experience with the contorted poses I like to sit in is that aging doesn’t help, so the yoga keeps me flexible.

    1. Yes, aging is not kind to all these weird postures. My body has grown so accustomed to certain postures over the years that I can very comfortably fold left leg under my right when sitting in my office chair, but to do the opposite is nearly impossible and feels completely “wrong”.

      I love yoga! I’ve been wanting to get back into a class for a while now. It’s incredibly relaxing.

  20. Wow, I relate to every part of this so, so much. Just sitting here reading your blog tonight I have switched positions so many times. I have a specific stimming activity that is pacing, really short distance, pretty fast pace (I think it would make other people dizzy), while listening to music when anxious or really happy. But it comes out just in little bursts a lot. Sitting around, if I am alone cause I know I can’t do it around other people, I’ll just jump up from my seat suddenly, move a short distance, msybe shift back and fortna sevond, then be like ‘okay, back to my seat’. And I do it when excited or happy (sometimes I will gallop or bounce as well) or when I just completed a task, or feel a little sort of disconnected, or often just inexplicably, often not even realizing I have done this. And waiting sometimes, like waiting for my order to be ready at a food place, if I thought it was socially acceptable I would probably just pace, but without that I will just end going…okay, standing over here, now here….and if I try to stay still in one spot defenitky start in on the fiddling sort of stimming.

    That’s just one thing. I think I mentioned pressure stuff and not feeling grounded in another comment. All of that rings so true for me. I love this blog, it’s like looking in a mirror and seeing your real reflection for the first time!

    1. I bounce or sometimes skip when I’m really happy. It’s always nice to find another adult who is a happy bouncer. 🙂 I’m so glad you found the blog and can relate to so much of what you’re reading!

  21. My joints build pressure. If I’m in the same position too long, they need to be flexed and moved. And since I have quite noisy joints, relief is not present until I hear a pop. I am a bowl of Rice Krispies in the morning! I can pop bone junctions (ie, collar bone) that stays quiet on normal people.
    If I’m stuck in a formal setting where I can’t move, it’s really strange. I start to stare, the world kind of browns out and I feel like I’m floating out of my body until I move or readjust.

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