When we first got Bud's PDD diagnosis, I started lurking on listservs and message boards for parents of kids on the spectrum, and I kept seeing references to "stims": "he spent the afternoon stimming"; "how do I stop all the stims?"; "we took it away because he was getting stimmy"; stim, stim, stim, stim, stim.
I had no idea what they were talking about, but I could tell from the way they were talking about it that "stimming" was a terrible, terrible thing and I was very glad that Bud did not do it.
It honestly took me a long time to realize that when they talked about "stimming" they were talking about many of the things Bud did all the time: flapping his hands, humming, or running laps around the house when he was excited; repeating phrases and quoting videos; listening to clips from a song, then skipping back to hear the clip again and again and again; rewinding videos to watch favorite scenes, or segments, or moments, over and over.
So I was confused. Why were they being so negative about it?
A lot of time has passed since then, and I now understand the challenges of perseverative behavior better than I did then. Some of the self-stimulatory behavior that Bud exhibited along the way included hitting himself in the head or knocking his head against a wall when he was frustrated, and forcefully kicking the wall when he had trouble sleeping. So I understand why some of the behaviors are of concern. But, I have to say, I still don't like the word "stim."
Last semester I taught a class in Interpersonal Communication, and one of the concepts we discussed was word choice. I did an exercise with the class in which I divided them into three groups and handed each group one of three sentences:
Sheila is careful with her belongings.
Sheila is meticulous with her belongings.
Sheila is fussy with her belongings.
"What is your impression of Sheila?" I asked each group. The people who knew Sheila to be careful had a mostly positive view of her. Those who thought she was meticulous had mixed views. Those who saw her as fussy had a very negative view.
We tried some other examples:
The youthful Senator took the stage.
The young Senator took the stage.
The inexperienced Senator took the stage.
Robert is economical with his money.
Robert is thrifty with his money.
Robert is cheap with his money.
The point of the exercise was to illustrate that words have two types of meanings. They have denotative meanings - the dictionary definitions; but they also has connotative meanings - the associations with the word that evoke emotional - even visceral - reactions in us, and that create a context in our minds when we hear the word.
Examples of the effects of connotative meaning are everywhere. Watch a few minutes of Fox News, then switch over to CNN and listen to the words they use to report on the very same stories. Then turn on NPR to hear what they're saying. The differences in word choice are fascinating.
So the issues I have with discussions about "stimming" are not about the behaviors being discussed; they are about the word itself. To me, the word "stim" has a powerful connotative meaning: "stim" says unusual, disconcerting, abnormal, dangerous.
But Bud's behaviors are none of those things. I think about his proclivity to rewind. Since he learned to master the TiVo remote, he sometimes engages in sheer festivals of rewinding and rewatching. Just this morning he was watching (and rewatching and rewatching) a 1 or 2-second clip from It's a Big, Big World in which a character said "Sure!" in a funny voice.
Then Bud added his own dialogue. He said to the screen: "Do you want to play?"
"Do you want to go upstairs?"
"Do you want some breakfast?"
And on it went.
Was it stimming?
But it was also pretend play.
And it was practice. It was a predictable conversation that allowed him to try a variety of permutations to see how they sounded. It was a safe way to test the waters of interaction. It was really very cool. And it makes me wonder: when he was rewinding before he had expressive language, what was going on in his mind?
Or I think about 2-year-old Bud and his fascination with the CD player. He would listen to the introduction of a song, and then just as the singer was about to sing the first note of the lyrics he would click back to the start of the song. Again and again and again. I never really thought of it as strange. Bud loves music. He loves music. So he was learning the songs - and he was learning them the way he wanted to know them. He was learning the bass lines, and the drum beats, and the pauses, and the piano riffs. Some people walk in the park and hear the birds singing. Others hear the robins, and the cardinals, and the blue jays, and the sparrows. It's about having interests. It's about having passions.
I've read a lot of wonderful posts by other bloggers that have contributed to my thinking on this. And more than once I've posted a comment that said something like "I don't really like the language of stim." It was the connotative meaning of "stim" that I was talking about in those comments - the way that the word somehow pathologizes the behaviors. Because the thing is, sometimes Bud's behaviors are disruptive and unhealthy for him; but sometimes they keep him in balance. And isn't that true for most of us? Isn't my morning coffee one of the things that keeps me alert and focused? And don't I get jumpy, irritable, and easily distracted if I've had too much?
The thing I keep coming back to in my mind is this: The words we use matter. Words shape our perception. And perception shapes reality.
So Bud will continue to flap, he will continue to perseverate, he will continue to rewind, repeat, and recite.
He will also attend to details, pursue his passions, hone his strengths, explore his interests, and perfect his talents as he learns to self-regulate.
He will have behaviors that enhance his life and behaviors that become problematic for him.
But he will not "stim" - not to my eye and not in my mind.
And, definitely, not on this blog.