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December 17, 2011 / Amanda Forest Vivian

Functional Stimming (July 2009)

[My domain is expiring and I have a few really old really long things about disability on there so I figured I would trundle them on over. Apologies for using the r-word as a label, I’m not editing this just because I wouldn’t know where to stop.]

This summer I’m interning at a school for kids with autism. I have to get up at six to catch my train, and last night I got home at midnight. I went to bed, but I kept thinking about how tired I’d be, and how hard it would be to focus and act normal. The longer I stayed up the more anxious I got, and the more unlikely it became that I’d be able to fall asleep. Finally at two I emailed the head of the school and said I couldn’t come (hoping this would be okay since I’m only a few days into my internship and have mostly just been observing). When I woke up there was an email saying, “Don’t worry about it.” Thank goodness.

Although the school is really amazing and really educational and fun to help out at, they have one position that makes me really uncomfortable. Across the board, they discourage the students from stimming, and reward the students for sitting in a very specific way–hands in lap or on desk, feet down, etc.

Stimming is engaged in by ASD people of all ages, but 10% of non-autistic kids do it too (and in my experience, so do many mentally retarded people). Wikipedia calls it “a particular form of stereotypy, a repetitive body movement (often done unconsciously) that self-stimulates one or more senses in a regulated manner… Common forms of stereotypy among people with autism include hand flapping, body spinning or rocking, lining up or spinning toys or other objects, echolalia, perseveration, and repeating rote phrases.” Even if you don’t know people with autism spectrum disorders, you’ve probably seen little kids expressing excitement and happiness by jumping around and waving their arms. In some people who are not easy to read, stimming can look mysterious and purposeless, but in more effusive individuals who are also smiling and laughing while stimming, it’s pretty easy for the stimming to just seem like a natural extension of the expressions most people use.

The first person I think of when I think of stimming is Mike, a guy who lives near my college and has severe MR and ADHD. My friend A.M. and I met Mike when we volunteered at his group home and at the vocational day center he attends. We all got very attached to each other, and when Mike saw us he would beam, squeal, and hold his hands against his chest while flicking his fingers out. When Mike got excited about a fair that was going to be held for local disabled people and their families, he leapt jerkily into the room where A.M. and I were sitting, holding a flyer about the fair, and continued to leap around in a stiff manner, holding the flyer up and flicking his fingers around.

My friend Clayton, who has no mental disabilities (note from the future: LOL forever), reacts to funny or exciting news by exclaiming loudly, throwing himself onto his back when he’s sitting on his bed, waving his arms around, and clapping his hands. Nothing he does sounds that strange when you describe it, but when you see Clayton, it’s obvious that his way of expressing his emotions physically is unusual for a 20-year-old guy. Clayton has cerebral palsy, which is considered a developmental disability, but I don’t have enough experience with CP to say whether CP people are known for stimming, or whether Clayton just happens to be a non-ASD, non-MR adult who stims.

I have Asperger’s, and I stim when I’m by myself. When I was a kid, I’m sure I stimmed more in front of other people, but by the time I was in my mid-teens, my primary stim was leaping around the empty rooms in my house. I’d leap through the rooms on the second floor when no one was upstairs, or I’d leap back and forth through the almost-always-empty living and dining rooms. I sort of jump/run around on my toes, with my arms bent stiffly and my hands brought up to about chest level, where I wag them up and down.

Usually, when I do this kind of stimming I’m thinking about something I want to say or write, and getting excited about it. It can feel lots of different ways. Sometimes it feels like a positive expression of happiness; sometimes it feels too good, like being on speed–like I’m trapped in thinking about something too much, or too hard, and I want to stop; sometimes I’m thinking over and over about something that upsets me, and thinking about it while stimming makes me more and more emotional and intense about it, which I guess you could see as a good or a bad thing. I’m not very conscious of what my stimming looks and sounds like–I had to take pictures of it just now to describe what I do with my hands–but I would guess that when it’s a positive expression I’m running around more lightly, and when I’m feeling too intense it’s probably stiffer and louder, and maybe louder still, almost violent, when I’m seriously upset.

Because not stimming in public wasn’t a conscious choice, but just something I found myself doing over time, my definition of “public” isn’t all that logical. Sometimes I end up bursting into a leap/run when I’m walking around campus and I get excited about something I’m thinking. Obviously people can see this, but I guess I think of myself as alone because I’m not talking to anyone. I don’t feel great about the way I stim. I wish I could stim the way Clayton does; it seems so natural and unselfconscious, just an intense expression of his feelings. I feel like I have a stimming habit, like I binge on stimming. It feels like an explosion and I feel worn out afterwards.

I remember other kids making fun of me for shaking my knees back and forth in class and compulsively touching my nose while I was reading. I don’t know if that’s how my stimming got driven underground. I just very much wish that instead of being this giant, dramatic, embarrassing thing, stimming could just be part of my life–flapping one hand while reading a book, rocking back and forth while having a conversation, jumping up and down happily after seeing a good movie.

I just went and walked in circles for a few minutes trying to get my thoughts together. That was really nice. That’s the kind of stimming I would like to do–calm. Something that makes my thoughts make more sense instead of ratcheting them up to fever pitch. Anyway, it’s really weird to be interning at this school because most of the people don’t know I have AS, and even if they did they would probably still see me as being like them, the neurotypical instructors, rather than like the kids, who all have diagnoses of Kanner autism or PDD-NOS. And it’s true, in terms of how “normal” and “high-functioning” I am now, I’m much more like the instructors than the kids in every way.

But I stim. And it makes a huge difference to me to be able to curl up on a couch or on the floor instead of sitting in a chair with my hands in my lap. I actually might have gone in on four hours of sleep, except that I need the energy to not curl up and not stim. If I didn’t need to use that energy, I might have had enough energy to observe and help with lessons. When I emailed the head of the school, I just said I would be too tired to absorb information, because I felt weird admitting that I still stim. Doesn’t that make me somehow unsuitable to be working with these kids?

I don’t mean this to come off as a blanket criticism of the school. They do amazing things, and if you have a kid who doesn’t communicate and doesn’t know how to take care of him- or herself, it’s far better that your kid goes to this school and learns those things, even if he or she is also made to feel that a harmless and unconscious habit is wrong. But I just feel very strange about it, personally, and don’t know how to think of myself when I’m in the school. It actually feels a lot like being a devout Christian involved in a conservative ministry, who happens to be gay. You love God. You wholeheartedly agree with the ministry’s goals and actions. But you also know that something that seems completely natural to you is something you shouldn’t mention to anyone else involved in the ministry.

Except it’s a little different, because no one at this school thinks that stimming is morally wrong. It’s just that, in their rigid set of rules, stimming is a “nonattending behavior” that distracts a child from learning. They have absolutely no room for the idea that stimming might be like sleeping or drinking coffee–something that can certainly be done too much, and can be a distraction/addiction/escape, but is practiced by ASD people primarily because it helps us express ourselves, helps us think, and feels good. So as a person who goes to college, has friends, makes eye contact, and appeared normal enough to get this internship in the first place, I can’t help but feel that my mere existence is a challenge to their position on stimming. I can’t help but feel that when I get on the train home and start rocking from side to side and reading a book, I’m somehow their enemy.

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