Monday, January 17, 2011

Why do autistic people do stims and self regs?

As I was making the Web rounds, reading about oxytocin, I came across a February 2010 interview in Newsweek with Eric Hollander, director of the compulsive, impulsive, and autism spectrum disorders program at the Montefiore Medical Center in New York. A lot of it involves linking autism to neuroimaging and oxytocin study findings, but one part of it in particular gave me pause. I need pause, so I didn't take that personally, but what it said made me kind of nuts, and I do not need more of that.

In the interview, which I'm sure I read at the time and have forgotten, Hollander says:
There is a group of behaviors that are self-stimulatory. When patients with autism are bored, they start to do things like hand-flapping or rocking back and forth to get up to their optimal level of stimulation. You actually see this in other species if you restrict input of sensory signals—if you put a tiger in a small cage, for instance, it will start to pace back and forth.

When I read that "bored" association, I think I said, "WTF" out loud, alone, to my computer. Why? Because I've never really had the impression that autistic people stim solely out of boredom. From our personal observations, the stims and self-regs show up in moments of anxiety or excitement, not in moments of boredom. I'm not saying that boredom might not be a trigger--sure, OK--but to give it this unequivocally? I'm curious to hear from autistic people about their reasons for stims and self-regs.

I know what TH would say, because he's explained it before. In a post of my interview with him, he explains that he does these things to "get his energy out" when he's "excited." And I know from 9+ years of living with him that he also does these things when facing--and diffusing--anxiety. Honestly, I don't really know what TH does when he's bored because he never seems to be bored.

What further confused me was this comparison to a sensory-deprived tiger. I've always thought that these behaviors were as associated with too much sensory input as with too little. Our son, for example, will fill any silence with his vocalizations and echolalia, I think to quell the noises in his own head, but he also ramps up his behaviors when the stimulation is overwhelming. Indeed, he's more likely to rock because of anxiety or too much aural input than under any other conditions.

Anyone reading this interview--either what Hollander says or Newsweek's "translations" of what he says--will likely find a lot to bother them, depending on perspective. You may find yourself shaking your head, talking to your computer, taking issue with terms like "illness" and "patients" and comparisons to "other species." It must be odd to be discussed so clinically and distantly, and I'm interested also in responses of readers to these aspects of the interview. But mostly, I'd like to know: Why do you--or your child--stim and self reg?

16 comments:

K Bjornstad said...

WTF indeed. I stim when I have a large amount of energy to get out. It can be because I'm excited in a positive way or because I'm anxious or something else. I've noticed that if I am in extreme distress because there's an emergency, I'll be so busy getting my energy out on solving the emergency that I won't feel the need to stim. I generally pull at my hair when I'm anxious and flap my arms when I'm excited but they can sometimes be reversed.

I can see that there might be a connection with boredom, because boredom makes me anxious, or because when I'm nervous AND I have nothing to do I will probably stim. But Hollander's explanation is far too simple.

zb said...

Well, it's wrong to attribute the tigers' behavior to boredom, too. I don't know what "energy" means, but the pacing of caged animals is definitely stress-induced.

Emily said...

zb...excellent point about the tiger. Of course that pacing is a stress response. K...thanks for your comment, too. It's what I thought, but I was interested in insights from autistic people, in part because I was thinking...have I been misinterpreting this the entire time?

Daisy said...

Amigo (just turned 19, blind, Asperger's) stims when he's excited, but will also stim when there's nothing going on. He might rock when he's listening to radio, for example. He's enjoying the show, but physically, he's filling the space.

nikki said...

Wow. For me, stims are.. centering. Maybe.. a rerouting of non-essential neuronal "energies" into physical movement? Typically, it will be when I am under (varying, perceived) duress of some kind, be it being "grilled" in a testing situation, trying to phrase a response properly in social situations, or sensory overload. The more unfamiliar the place/people, the more likely it is to happen. And when phrasing responses, the more important the issue is to me, the more likely I am to stim. Reducing visual input (staring, closing eye lids) is common for me when I perceive greater need for accuracy. I do Tic as well though, and echolalia for me is strong with noises/FX rather than words (unless a word is humorous, especially homonyms.. such as "duty").

As far as the Tiger? Umm.. DUH! It is called BEING ON ALERT. Put me in a cage, and my anxiety level would skyrocket. At a certain point, the chance of immediate threat might seem to diminish, and I would simply find a way to conserve energy, and likely find the most appropriate spot in said cage to "shrink into." Voluntary sensory depravation can actually be very soothing for me. Maybe put that guy in the cage, poke him with a stick and repeat, "Are you anxious yet?" over and over?

sharon said...

I see my sons stimming as a self soothing not self stimulating behaviour. If he is bored he whinges and demands attention, just like any other 2 year old.

Gina @ Special Happens said...

I have to say that boredom as an explanation seems just silly to me. Mu son stuns from excitement.

Rosemary said...

I hope this isn't a stupid question - it's one I've wondered about, but recognizing that it's anecdotal and not scientific and based solely on my own experience, I've generally ignored it. But, have there been any studies of the use of pitocin during labor and the incidence of autism spectrum disorders in the children born of those labors? I'm presuming the answer is no, but, you know, one wonders.

Viverrine said...

You know, until I was in my '20s and had a boyfriend freak out about it, I thought of rocking as a perfectly natural variant of the NT foot-tapping gesture, which IMO is still basically true. It's very similar from all I can tell and can indicate a WIDE range of emotions, from nervousness and impatience to pleasurable excitement. I also sometimes rock, with a different, more foreceful tempo, when in physical pain. It's just kind of a general purpose expression of emotion. But of course "everyone" "knows" that autistic people don't express emotion. :/

sharon said...

Rosemary I am not aware of any studies, but I can tell you I didn't have pictocin in my labor with Harri.

krex said...

Long before learning about AS, I worked with teens and the same behavior labeled as "stimming" for AS was called "self soothing/self regulating" by the staff . I don't think there were any kids there Dxed AS, but Perhaps a higher then average ADHD/ADD .

I've never been a flappper, more of a tapper, drummer,hummer,finger twitcher and even crier ,(which I believe to be a stim that had little to do with "sad emotion" and much to do with my body telling my brain that it needed some soothing chemicals....before I exploded !

Each of my stims appears to have a different function for me and I'm seldom bored and more often use them to block out undesired sensory stimuli when I need to focus, similar to chanting ? Most often, stimming is the "white noise" that allows my brain to focus in a "sight/sound/feeling/NonVerbalCommunication" cluttered world .

I dare the author to name one stim associated with Autism...from head-banging and rocking, to pacing humming and hand flapping... that they have not seen portrayed in a movie by some actor who is under emotional distress....There is nothing "non-human" about any of the actions .

In movies the characters stim when they are in a natural disaster or see the death of a loved one or are forced to take actions that create cognitive dissidence .

To me , the clue in what causes stims in AS would be to look at what causes it in NT's and work backwards...ie....how is a social interaction for an AS similar to being in a car accident for an NT ? (obviously, they would need to see my attempts at social interaction....very scary stuff .)

Norah said...

Whut? Stimming when bored?
I mostly stim when I'm excited/enthusiastic about something, very into it. I think it might even be a sort of focus, or help focus.

When I'm anxious or afraid too, but it's not the same one(s).

When I'm excited or even just doing normal stuff it's actually more likely to involve my mouth (I bite.. myself, also move my tongue), which handily leaves my hands free. Though I also sometimes pick at stuff. And I tend to leave my mouth hanging open much of the time which annoys other people.
When I'm anxious/stressed it's more likely to involve my hands and legs. Though I move my toes and feet at all kinds of times, I often don't even know I'm doing it.

Danna said...

What a novel idea - asking autistic people why they do something, rather than finding some expert opinion!

I rock to shut out the outside world and focus on my own thoughts and I rock to relax - and there are a wide variety of reasons why I might want to do that, from anxiety through to, yes, boredom.

Bouncy/jiggly stims are excitement or anticipation like any NT kid - same with stress-induced hair pulling/rubbing, NTs do that too.

When I am doing academic work or writing, I have to be careful NOT to stim and stay as still as possible or I am too distracted to work or think properly.

Stims are soothing. Like having a glass of wine. For all the reasons one might have a glass of wine, those same situations call for stimming (rocking in my case).

As far as I can tell, my son stims for the same reasons I do, he simply has less motivation to engage in the outside world than I do, so he stims almost constantly.

christophersmom said...

There are several reasons for self-stimulatory behaviors. My son does stim when he's bored and he doesn't have access to any favorite activity. Hand flapping on the other hand is more about excitement. In my opinion it cannot be called self-stimulatory behavior like, say, sucking fingers or scripting lines from a video. Hand flapping is more of an involuntary, neurological response...

Kelly said...

My daughter spins a lot, so it is difficult to always determine the exact reason. I do know that she always spins when she is listening to something and trying to concentrate. It seems that if she ever complains that she is bored, she is more still - almost like she is tired but saying "bored" because she doesn't really feel like doing anything.

autismandoughtisms said...

My son's primary stim is what we call his happy dance - not surprisngly, he only does it when he is happy. I did a post about it, and professionals attitudes towards it, a while back: http://autismandoughtisms.wordpress.com/2010/11/29/a-dance-of-joy/

He has a few other minor stims, but none occur because he's bored. If I had to pick an emotion to go along with those other stims it would be tiredness.

It seems to be a gross, and largely incorrect generalisation, to claim stimming is linked to boredom.