Monkey Pliers

Asperger's / Autism Toolbox


The Little Stim That Could

A Post by Monkey Pliers
on August 13, 2013

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TRIGGER WARNING: This post contains discussion of ableism and abuse, my frustration with which I make clear. Of the posts I've written so far, this has been the hardest to get to turn out the way I wanted it and taken the longest to compose. It deals with matters that are sensitive for a lot of us, and I've tried very hard to express my views without fumbling how I handle certain connections and comparisons. I'm still not sure how I like the way I've worded some things and put together certain parts of it, but I've decided not to tinker with it endlessly; instead, I'm willing myself to let it go out into the world, because I've arrived at the point at which that feels like the right thing to do. If I've appeared to make any blunders, please know that no disrespect or offense was intended. My thanks, as always, to the network of support I have today.

  I've stimmed all my life. Sometimes I've gotten in trouble for it; sometimes I've successfully hidden it. I've had times when I've managed to make a stim blend in with the kind of behavior that would be easily accepted if practiced by others, while at other times I've done my best to entirely suppress the urge. I can see why certain stims might be considered bothersome to others, but I can also see that most stims are so harmless you'd think other people could just get over their displeasure. However, if you already seem strange or a bit off to them, even the most minor stim can become a major offense in their eyes. There's just beginning to be better discussion of stimming these days, but it's not nearly enough. So, let's look at this some more. There are many opinions on the matter, and there's a lot more information to be had, so I hope this post will encourage further exploration and discussion.

  To begin with, while there are a few that may rival it, I can't think of any other health condition besides what's commonly been called "high functioning" forms of autism, such as Asperger's syndrome, the reaction to which puts more of the responsibility for making things "right" or comfortable between people in a given situation on the person experiencing that condition, as opposed to placing it on those not experiencing it. Autism issues that involve social interactions tend to follow the bullying model. If there's friction between people and the autistic is mistreated, it's frequently assumed the autistic must be the one causing or overreacting to the situation. Therefore, the autistic must bear the burden of fixing things, either by applying a self-corrective or by "toughening up". This is largely because autism, particularly when it appears with few obvious co-morbid conditions and in forms labeled as "high functioning", is far too often viewed as an attitude problem, not as a matter of intrinsic traits and challenges arising from the hard wiring of the brain and legitimately affecting function and ability.

  Now, with regard to any disability, untold numbers of cases of abuse do occur, as do institutionalized oppression and disregard. However, if I need a medical motor scooter on a bad fibromyalgia day, I'm not expected by society at large to prevent able-bodied individuals from abusing me by hiding the scooter at home or covering it up in public. Anyone able-bodied who demanded such a thing of me, or who decided I had to somehow pay for failure to do so, would rightly be viewed as obnoxious and rude, at the very least. Some able-bodied people may be disturbed by the fact that disabled bodies and/or behaviors are different from their own, but they are largely expected to keep that discomfort to themselves, at least while in polite company or directly in the presence of the people they feel that way about. A disabled person may - or may not - feel self-conscious, but that doesn't mean others have the right to judge and interfere. I'm certainly not claiming that nobody's ever been nasty about it; I'm just pointing out what society generally considers appropriate versus inappropriate in public. On the other hand, if an autistic struggles with sensory input or emotional regulation and deals with it by stimming, then the autistic is the one considered to be behaving obnoxiously and rudely. Remember, we're not even talking about meltdowns here, which are also often confused with willfully bad behavior. Even fairly obvious stims are, by and large, pretty undramatic, and they can be part of an autistic's method of preventing, lessening, or recovering from a meltdown or shutdown. But it's still the autistic's activity that apparently has to be stopped if there's a conflict. Otherwise, whatever reactions neurotypicals have are considered justified. Getting harangued or teased at school? Can't get a job? Getting stared at or yelled at or shunned by strangers, family members, or neighbors? It's your fault. You shouldn't have made people treat you that way by making yourself look weird and annoying them. (If you want to have a better idea of where I'm coming from on this point, it might help to read the excellent July 24, 2013 MusingsofanAspie blog post, Socially Inappropriate.)

  Stimming cannot be made to entirely go away. It can sometimes be disguised, postponed, muted, shifted from one expression to another - but only for so long. Too much of that can eventually result in either an explosive expression of stimming or some other kind of explosion (a meltdown, perhaps) later on. This isn't necessarily because the stimming itself is the issue. It has to do with whatever's causing the urge. If I need sensory input, or if I'm overwhelmed by sensory input, activity, emotions, or other stresses from which I need relief, trying to keep me from stimming isn't going to teach me to handle things better. It's going to deprive me of the thing that's helping me to cope. It's also going to add to the load by making me deal with the stress of being pressured into behavioral censorship and shame over something I need to do that isn't hurting anyone.

  It's very important to understand this point: Forcibly preventing or halting an autistic's stimming behavior is usually counterproductive. If a particular autistic is interested in altering their own behavior, for that person's own reasons, that's fine. It would be equally ridiculous for someone else to insist that an autistic must stim - for any reason. Really, there's no need to make a big deal out of it. Just chill about the whole thing and let the autistic decide. After all, things can be different from one occasion to the next. And if you really can't handle the stimming for some reason, respectful negotiation is a much better approach than aggression. Even children can learn how to work things out with others. The point, though, is that you're dealing with a person, not a poorly trained pet. Respectful negotiation involves acknowledging that both parties have needs and concerns that each must take into consideration. Negotiation makes sense when you realize that two autistics can have two different stims in a given moment, each of which might conflict with the other's sensory sensitivities or contribute to the other's sense of overload in some other way. Broad crackdown in order to cause the appearance of "normalcy", however, is another matter. That's when the need for accommodation of an autistic outweighs the desire of neurotypicals to not be bothered by something because they find it unusual.

  And now, back to the title of this post. Which of my stims is the little one that "could"? Is it the tiny movement of the tip of my tongue against a spot on my teeth that nobody's noticed for years, because they can't see it? Is it the handling of my microfiber dusting cloth, which can be done in public without attracting much attention, because it's so casual and unobtrusive as I walk through areas such as grocery stores, where nobody sees me for very long at a time? Is it my playing with a small, fuzzy, stuffed toy, which can help me make it through the physical discomfort of being stuck in a vehicle on a long trip? Is it my cuddling of one of my soft blankets or larger stuffed toys, so I can wrap up in or put my arms around something soft and squishy and feel comfort on a larger scale, either at home or in various other environments where I've learned I can be safe dealing that way with potential tension and/or physical difficulty? Is it my propensity for listening to the same song over and over again at times when my thoughts or emotions need to be on a certain "track" and the musical track helps? Is it my hand and foot wiggling/shaking or my humming and other sounds that I've finally found a place for in my life, now that I'm letting go of the idea that stimming is somehow wrong and a thing to be ashamed of? Well, the answer is yes. Yes, each one is my "Little Stim That Could". Each one has survived or emerged in spite of the stigma attached to performing them. Each has helped make me more capable in some way or another. They're not a panacea, by any means, but they really do help. While I've personally remained rather private about most of my stims in most public environments, I've better managed both my internal world and my external involvements by finally allowing myself to let more of the stimming out.

  And then there's something else to consider. If you think you know what stimming is, and if you think every sign of it must be done away with, you may not realize all that it can include. For me, swimming is stimming. It's not just fun, cooling in hot weather, or great exercise. I can make repeated arm and leg movements, feeling the resistance of the water with even the slightest motion. I'm not a fast or strong swimmer, but I really reach with my arms, stretching and twisting my torso, which feels wonderful to my ribs. I can feel the water slide around my limbs with every kick and every stroke, giving me the same major sensations, with minor variations adding interest, over and over again. I'm very body aware in the water, with its gentle pressure and noticeable temperature giving me constant feedback about my body and my surroundings. At the same time, having my ears submerged fits me even more deeply into my cozy inner world. Sometimes I wonder if anyone else notices me occasionally smiling as I'm doing my laps. It's no wonder I feel so calm after a swim. But I don't think I got nearly so much out of it before my diagnosis. It was certainly pleasant back then, but these days I enjoy it so much more fully, with much greater awareness as to all that it's providing for me. Now I experience it with so much more exuberance and satisfaction.

  Moving from punishing myself for emotions or behaviors I fear may be considered unacceptable, whether they're actually wrong or not, to regulating difficult feelings or other overwhelming sensations and experiences with the positive sensory input of my choosing has made me a much healthier person. It can be an important alternative or complement to removing myself, either temporarily or permanently, from situations that are too much for me. Stimming can make it possible to stay longer and more comfortably. If necessary, it can help calm me if I need to either go away for a short break or walk away entirely. I'm also healthier when I don't judge myself for wanting to stim when it's simply fun. It's not enough to allow myself to stim only to counter unpleasant input. I also need the pleasure of positive input for its own sake. And why not? Think how people would feel if they were given to believe the only excuse they could have for laughing, having a hobby, or listening to music was to relieve stress and make them more productive. We'd all be kind of dead inside if people weren't allowed to do something like play a sport or go for a walk simply to have a good time doing it. Joy very much has its own value. Life's not always about practicality. Humans have evolved to play, to love, to appreciate beauty, to be capable of excitement and happiness. Sometimes the reason for doing a thing, even something small, is to add more life to your everyday life - in other words, to actually live, not merely exist. So, why shouldn't stimming be allowed for enjoyment's sake?

  I've noted many times before that, at this point in my life, I'm very fortunate. My family is pretty understanding these days, and I've fallen in with the right social crowd. The few stims I've been willing to reveal in the year since my diagnosis have been well accepted, as far as I can tell. But I've been able to function in limited circumstances, and I'm well aware that the whole world is not like the one I've managed to drop myself into for the last 1 decades or so. I'm in a fairly closed environment, where I've been able to build up mutual good will and respect prior to being so open about this aspect of my being. It also seems to me that people are more likely to accept each other's oddities in a freely chosen recreational environment in which everyone has their own way of feeling like an oddball or outsider to society than in a place where participants are required to be and where they feel pressured to conform. People who think they have to be like everyone else can get awfully scared or resentful when someone else isn't "towing the line" by knuckling under to the same expectation. That's when being different becomes dangerous. It's not just when a difference, in and of itself, makes others uncomfortable directly. It's also when it makes others nervous about being judged by association. Not so many people want to risk getting a hard time for being nice to the "freak". So, if that freak is you, you've got to work a lot harder not only at building up as much respect and good will as you can but also at holding back anything that might counter such efforts. Hence, it seems, stimming must be avoided, altered, or hidden from view, no matter what the cost. And that's what autistic children are traditionally trained for, regardless of the pain it causes. "Whatever you do, kid, don't show you're the freak. Otherwise, whatever happens to you, you've brought on yourself."

  As good as my life usually is now, the impact of my former training, imposed upon me by so many unavoidable and significant people during my formative years, has proven so powerful that I still struggle to overcome it and still very much feel the pain of it. This sort of thing doesn't just clear up. If I ever forget, some new reminder could well be delivered somehow, possibly when I least expect it. And let's not forget what a powerful motivator uncertainty can be. It's hope for reward and fear of punishment that create the strongest incentives, not the expectation of a known result. A thing you know for a fact is coming can be resisted to some extent, whether it's designed to tempt or to discourage. Will support and acceptance suddenly drop out from under me when I feel most vulnerable? If I'm in an unfamiliar environment, I don't have any idea how others will react to me. I have to be careful. It's easy for a strong enough shock to seem like it outweighs many, many positive experiences. And if I get a bad reaction in a setting in which I thought I was safe? Well, trust can be a lot harder to rebuild than it is to build in the first place, so I can only hope that, if such a thing happens, I can file it away as an isolated incident, not discover it to be a turning of the tide or evidence that I've arrived at the limit of other people's patience with me. I've got good people around me; I think well of them and don't anticipate intolerance from them. But that tickly little fear in the back of my mind is still always there: Do I make even nice people involuntarily cruel, simply by being me? That's my history of having been abused talking. That's the bullying model at work. That's the effectiveness of the "Asperger's as attitude problem" view being all too commonly held. It's what you get when professionals deliberately propagate the teaching that stimming is pathological, harmful, inappropriate, undesirable... that it is, in itself, disordered behavior and that subduing it is necessary to achieving the goal of making an autistic more acceptable as a human being.

  I am not neurotypical. You cannot change my neurology by making me pretend to be like you. All you might be able to accomplish is to pressure me into making only occasionally successful attempts at presenting myself as what Wolf Dunaway* calls "pseudotypical". I'm willing to accommodate the sensibilities of neurotypicals in situations that warrant it. I'm not willing to try to be someone other than myself. I don't expect you to be someone other than yourself, either. Being ourselves does not, and should not, mean treating each other in an ugly manner simply because we are not the same. So, if I'm stimming, it's not to intentionally bother you. I'm acting in good faith. I'm either soaking up the experience of being alive, as I'd hope you would also feel free to do, or trying my best to manage being in a world that can occasionally be too much for me, as I would also hope you could find ways to do when you feel overwhelmed. We each have our own methods of navigation. As long as we're not actually harming anyone, how about if I support your ways of seeking enjoyment and getting through the tough times, and you support mine?

* Wolf, a strong and insightful self-advocate, appeared with several others on the autism spectrum in POV's Neurotypical on PBS. The film was created to present autism from the points of view of various autistics. You can also learn more about Wolf's perspective on autism by watching his videos.

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