The Comfort of Stims; or, Coping is Worth Its Weight In Gold (#215)
28 January 2006
Growl whine squeal hiss.
That was Charlie's response when Jim said to him "Hey pal, your shirt's on backwards!" Charlie had gotten up laughing, took off his pajamas, put on his jeans. Then he walked up to me and asked "s'irt on."
Jim and I paused at Charlie's exclamation and he ran to sit on the heater vent. "I want green apple," he said with a glance at me.
He munched it down and was soon peaceful-faced and off to find his toys. "Guess he was pleased he got dressed without us asking," I surmised. "Better than other things he's done," Jim noted. Indeed: In the Control and Coping category, snarls and running off to settle his anger in a favorite spot, and in a few minutes, and with a verbal request for some desired item--literal "comfort food"--is the kind of small progress that is Autismland gold.
A little more gold dust came our way as the day unfurled.
Growl whine squeal hiss
came from Charlie as he and Jim rode on some new streets past a park two towns over. Jim, wanting to make the most of a 65 degree day in January, kept on pedaling. When Charlie popped off his bike in our front yard, he was grinning and all excited after an hour-plus ride. (It did take several requests before Charlie put down his bike's kickstand.)
I had left a library book on the couch and Charlie picked it up, stared and blinked at the cover, and paged through to the end. He ripped out the yellow paper with the due date stamped on it and clutched it, smoothed it, hung on to it, insisted on bringing it in the backseat of the black car along with his blanket, green rabbit, a plastic pumpkin, and a bag with snacks. At the verbal behavior center, Charlie snatched up blanket, bag, and yellow bit of paper. "Let's leave that in the car," I said.
Growl whine squeal hiss
was the response. He had to wait a few minutes to go into the therapy room; another child was watching a Barney video and the cheery singing of "a-camping we will go" was coming through a door. (I can picture Baby Bop and some of the Backyard Gang all backpacked up and suspect Charlie was visualizing even more of a scene he can't forget.) When Charlie first entered the therapy room, he touched his head lightly on the floor, then flung himself on the big blue pillow and pulled his blanket over his feet and body.
I went back to the car, where Charlie had left that scrap of paper I recognized as a stim:
Should I toss it behind Charlie's back? Or let him just have it?
It's the quandary I feel I hit my own head against every time Charlie insists on having something just so. Aligning his feet along the floorboards before leaving the house. Wearing the green gloves that have sprouted huge holes. Rewinding the same segment of a Barney video over and over. Staring doggedly at the green and blue wheel of a car-shaped rug. What if we got carpet instead? What happens when the gloves have more holes than yarn? What if the videotape breaks? What if I ask Charlie to come and sit with me?
Some say that to teach (or force or make) a child not to stim--using, for instance, the behavioral teaching methods of ABA--is to deprive that child of her or his freedom to be, to express her or himself, or, indeed, to comfort her or himself in the manner best for an autistic child. Jim and I have noted how Sue Rubin, the autistic woman in the film Autism is a World, stares at the water running from a faucet and often carries spoons with her. She finds these activities comforting and necessary. She grudgingly assents to a request to stop looking at the water at the request of an aide who accompanies Rubin during her college courses. She points out a helmet on a low shelf in a room.
Stims--by definition--do comfort. And the need to maintain them, to get that kind of comfort, can make Charlie very nervous to the point that he is not free, that his mind is not open, to learn and grow. The comfort offered by stimming has all too often been a terrible mirage for Charlie. Does his fear of losing all the little things that make his world orderly--plastic pumpkins, green chew tubes, hummous for lunch, certain Barney videos, Grandma in her chair at the top of the stairs--lock him into patterns of thinking and of acting that are self-destructive--the stuff of nightmare? What kind of comfort can this be?
Charlie had a great verbal behavior session, starting to work on several new program, talked and played. His therapist noted that the growl whine squeal hiss episodes came and went quickly. When Charlie got into the car, I didn't see the yellow square of paper--swept away when he took out his blanket?--and he settled into his seat without asking for it.
"Green g'ove," said Charlie when we got home and only one was to be found. Jim and I checked the car and shook out the blanket; no green glove. "Oh well," I said. "Here's a blue one, a red one...."
Charlie looked around the room, ran up the stairs. "I want hot showah!"
Prospectors in the 1840's yelled Eureka! when, sifting in the waters by Sutter's Mill in the 1840's, they found gold. Charlie is finding his way through his stims and in the world, and I'm collecting the gold dust sparkling up his footprints, cheering Eureka! all the way.
Sometimes I wonder if we think too much has to do with our children's autism and forget how much we all have our own favorites and things that comfort us. I know it is always a little more extreme when it comes to our autistic children, mostly because of the language barrier, but Brian said to me this morning when I told him that I only brought out his spiderman blanket to lay on him on the couch instead of his "big blanket" too, that he "hates when things are different". He continued to cry until I got his "big blanket". As typical as he is, he still has so many bahaviors that may be considered autistic if you took away the typical child in him. I am just wondering if we are sometimes too hard on our autistic children by thinking of so many behaviors as a "stim" when really we all have our own behaviors and things that comfort us....just my thoughts at 2:00 in the morning.
Posted by: Eileen | 28 January 2006 at 23:07
I share similar wonders in my own blog. For myself, I try to break it down this way:
1. A stim is something that comforts (in Adam's case it is usually the visual);
2. Turning the TV on and off, or rewinding a video is obessesive-compulsive behaviour. On this I will elaborate: Tito Mukhopadhyay and Donna Williams both say this: "Escapism is the doom of any development," and Donna respectively talks about the doom of "The big black nothingness." Similarly Tito describes his spinning and rocking as a means to understand his body in space -- a means to KNOW he is alive and part of the world.
As a mom of someone labeled autistic, I have to make decisions almost from one moment to the next...quite literally. I have to decide if something is soothing Adam in a way that enhances his body awareness, his SELF or if a stim is a means of ESCAPE. I believe these are two different things. Anything over-repetitive seems to me obsessive. I always have to look at the CONTEXT too. Is this a situation that he needs to process, or that is difficult for him? How can I build a bridge and bring him back into the world? Or, if its the other then, how can he still achieve the same feeling of his body in space through other means but that gives him the same feedback?
Then there are the other times, as parents, that we just have to let things be. We all get stressed and need to "preserve" OURSELVES in stressful or uncomfortable situations. We have to build our courage and find the motivation within ourselves to manage the stress, or indeed, step back into and manage stressful situations.
I don't know if this helps. I find the writings of those autistic very helpful in trying to discriminate between stims and obsessions.
Posted by: Estee | 29 January 2006 at 05:48
Eileen & Estée, I am on the same page with you. But it was when Charlie ws staring at the wheel of the blue car carpet that he first banged his head on the floor and our thought that this one would "go away" turned into reports from school that he had hit it 20 times. If I'm a bit obsessive on this topic, it is because I hope the history of stimming/SIB's that we have lived through does not get repeated.
Posted by: Kristina Chew | 29 January 2006 at 06:25
I understand completely Kristina. The whole stim thing is just something I struggle with. Do I give him the paper or not? I know he is probably better off not, but for now I have just been limiting it and will continue to limit more and more until hopefully it will not be an issue as much. I just always question how I need to approach things so differently with Andrew than Brian. But if I look at Brian's "normal" behaviors sometimes, I think if he was Autistic certain behaviors of his may be considered a stim. Yes, it is very different and SIB's completely change everything. As Mom's we know what is best for our children. You always do a wonderful job of knowing what is best for Charlie.
Posted by: Eileen | 29 January 2006 at 11:52
Given the various ways that autistics themselves write about stimming--from the darkness that Williams describes to the civil rights issue that one hears from other aspies--it is very hard for an NT parent to know what to do.
Perhaps this is a case where moderation and balance become the watchwords, as you have pointed out in other posts.
No one, NTs most especially, can grow without some downtime and comforts, so of course the same would be true of our children.
It seems as though much stimming is about dropping out of the conceptual and into the perceptual. That is, as we old hippies used to say, "tripping on something." I'm not sure it's the death knell of thought . . . but perhaps a place where the mind makes ready for future thought.
We are fortunate in that Sweet M has really given up almost all obsessive/OCD-type behaviors since she went on Paxil three years ago. Granted she still loves particular sensory input--the swinging bridge, and being "squished" (deep pressure) and TV--but the rituals that had dominated our lives simply vanished within a week.
Perhaps there is a difference between stims that are about anxiety and stims that are about perceptual pleasure? What do you think?
Posted by: Mothersvox | 31 January 2006 at 08:55