Autism Watch: 2007

Stim City

Posted on: April 28, 2008

Throughout the years, my son’s stims have run the gamut — finger flapping…head shifting…licking everything, licking his arms, licking others’ arms…sucking his shirt collars till they drip…chewing everything…picking his cuticles till they bleed…rubbing his ears until they are raw…grabbing himself, there…you get the picture. We’ve tried a lot of things — diet, supplements, re-direction, distractions, etc. — but in the end, the best success was temporary.

Someone told us early on that if a stim wasn’t impeding function, leave it be. I didn’t really agree then though, and I don’t know. Stims can be dangerous, and stims can be unhealthy. Stims can also scream “I HAVE ISSUES.”

One of my son’s doctors calls his stims ‘tics.’ But tics belong to Tourette’s, and my has autism, not Tourette’s…right? So stims are stims, and not tics. Is it semantics, or are stims ever really tics? Is the defining factor the ability to stop the stim?

Someone else told me years ago, when I asked what we could do to help my son, “It depends all on how autistic you want your child to be.” In a way, I agreed — I could deal with the way he was, or I could work on helping him more. So away I went, finding the latest and greatest to help him. Then I realized eventually that only in a perfect world could I make it all go away. Sure, we can improve things, fix some things, change others, but I don’t want him to be autistic at all, yet there it is, he’s still autistic. Stims are part of the category of things I’d love to fix, but can’t. Yet if a stim isn’t impeding his function, do you spend time and energy on stopping it, if it takes time away from teaching social and behavioral nuances and behavior?

My son’s stims rotate. Typically, he has about two or three going at a time, and they each rotate for about two months. The only non-rotating stim is his need to constantly move his hair up on the top of his head, and to twirl it. (He’s got long hair, a wish of his. Initially, he said he wanted to hide behind it so he wouldn’t have to see people, and while he no longer says that’s the reason, I still wonder.) Anyway..his current stims are scrunching up his mouth as though he’s giving a kiss while scrunching his nose like the person he’s kissing smells really bad. And he does it over and over and over. While eating, reading, playing Guitar Hero, bathing, falling asleep..it’s incessant. Mix it with the other stim-of-the-month, stretching his mouth longwise as far as it will go. When I ask him why, he says it’s because it feels good, yet other times he appears entirely surprised that he was doing it.

Is this stim hurting anything? No. Is it obvious? Heck, yes. I realize that the ‘obvious’ part of it is my problem, and a problem I need to get over. My son’s very verbal, and many of his behaviors are via yelling, screaming, saying inappropriate/mean things, sometimes combined with hitting, yelling, throwing things, running away, etc. People in stores don’t take to that stuff very kindly, but I’ve found that when your child looks funny, people also stare. My husband’s great at telling me to ignore it, but I’ve got a ways to go on this. Meanwhile, these are still stims I want to fix…or should I?

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8 Responses to "Stim City"

Your husband is absolutely right. You need to pick your battles wisely. Your son might rebel against learning and other things if he sees you rebelling against behaviors that he somehow sees as comforting. That’s what they are, in his mind anyway, if not that, then a reaction to things that upset him. Stims are a combination of both and other things too. He sees your desire to get rid of those behaviors as rebelling against the essence of who he is. Even if autistic children don’t seem to be capable of such thought, they very well could be and often are. You just have to take the word of an autistic person who has been there before, and not another parent of an autistic child, because more often than not, that parent is not him/herself on the autism spectrum.
Why don’t you want your child to be autistic? If you choose not to respond to this question (you have a right to do that, of course), I hope you will at least think about it. If your answer, should choose to give one, has anything to do with the media’s interpretation of autism, let me head it off right now by saying this: media people are often uninformed. They see autism as something tragic because they look for cases that seem hopeless, because sensationalism and tragedy sell. It’s not so much about informing the public as making a buck or two, or three million.

I keep coming back to your blog not out of disrespect, but to provide a different, more positive way for you to think about autism. You have the choice to see a glass half empty or half full. The latter approach is healthier.

this site, http://www.autismhub.co.uk

has many sites and blogs of both autistic persons as well as parents of autistic children.

Ivan of athenivanidx

Hi, Ivan

I am fine with you coming back to my blog, and I do welcome others’ viewpoints. It’s always interesting, and helpful, to see the viewpoints of those affected with autism firsthand, too. My son’s too young to tell me many things, so I am very openminded about hearing what other people on the spectrum have to say.

I love my son the way he is — let me get that out there first. But, I know he doesn’t want to be so out of control of his emotions that he has few to no friends and hurts himself. I know he’d rather enjoy an activity than have the sound hurt his ears and that he’d rather eat more than his limited variety of foods. He is very verbal, and tells me quite a bit, though on the level of a child obviously. However, his vocabulary is amazing. I want my son to be the unique individual he is, but a happy one, and he’s very often not happy, and it’s the autism behaviors that bring on that unhappiness. He’s got musically-inclined savant skills and can out-logic many an adult, but he’s got a lot of other behaviors that are equally unhelpful.

I know there’s a school out there that thinks that autism shouldn’t be cured, and that we shouldn’t change anything, but I’m not of that school of thought. My son deserves a chance to be all that he can be, and currently his issues aren’t allowing for that. As a parent, my job is to help him. If you are a parent, you know where I’m coming from. If not, it’s going to be hard for you to understand, as you probably feel I’m not understanding your thoughts.

Thanks for the comments, Ivan.

Thanks for your response. Not curing autism isn’t necessarily the same as not changing anything. Sure, you can help him change his behaviors, or assist him in discovering more appropriate ways to channel his emotions……

You say he’s musically gifted, hmmm? Voila! You just have to show him and prove to him that he can get his emotions out through an instrument.

His dissatisfaction with his behavior may be something else actually…….he might be picking up on cues……or just vibes “in the air” (sounds weird, but bear with me) that people look down on his behaviors and think he’s weird. So, his unhappiness may be caused by others’ perceptions of him, and not directly by his behaviors themselves. Autistic children often have more complex thoughts than they are able to express, either verbally, with signing, or via other means of communication. He may be thinking that people are wrongly looking down on him when all he’s trying to do is feel a little more comfortable in a chaotic, confusing world that was made for typically-wired brains. I am just one personality of three, sharing a body. We are three because we had to figure out some way to manage all of that chaos. We figured this out at a very early age……6 or 7……it might sound very strange, but it’s true. It’s our truth. It’s the way we have been able, thus far, to succeed at things like…getting a driver’s license (one personality is unable to drive.) getting our associate’s degree at age 24…..we’re a little behind…….but hey, it comes with the territory of cognitive disabilities. We actually graduated 2 days after our 24th birthday last December. Our parents, when we were much younger, were worried about our future, just as you probably are, about your son’s future. Yet here we are, responding to you, with an associates and a driver’s license. Many things are possible.

Ivan of athenivanidx

Our three have done some switching–Little Miss used to spin and spin and spin…but once her sensory issue came under better control she doesn’t. Captain Oblivious didn’t have tics till he started taking ADD meds, then he’s come like your son, cycles through licking and head bobbing and finger twitching…even though he’s been off the meds for years. And then Ditto Boy…tho not dxed with autism at all but ADD is the one who sucks his shirts and eats non edible things and all. The only doctor I ever consulted about the tics told me any meds they’d give to control the tics would have worse side effects. So we just figured we’d hold our breaths and hope they outgrew them.

Hi! I was surfing and found your blog post… nice! I love your blog. 🙂 Cheers! Sandra. R.

Hello, I am autistic.

Try to establish what your child’s sensory profile is (by professional testing or by using a book) and to reduce his anxiety, especially from the sensory things that cause overload. My stims go from near-absent to extremely vigorous, depending on my anxiety level. I am affected by sound and by visual contrasts particularly and I am extremely sensitive to relationship tensions between other people near me. When my anxiety goes up, my sensory sensitivity increases and the sensory sensitivity in turn increases my anxiety, and then I need to stim vigorously to regulate. If I am in public I can usually get by by dancing/bouncing as though hanging out somewhere listening to music with a beat when wearing headphones — except that the headphones I am wearing may actually be a noise-canceling device. But sometimes I must go somewhere private for more extreme movements and to get deep pressure.

I am not trying to cure my autism (I like my autism, and it helps me in my job, and it keeps me fit, amongst other things), but the negative things need to be managed.

PS: When I was a child, I went through a time that I used to suck my plaits (or braids, as you call them in the USA).

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