Friday, March 24, 2006

Choosing my words

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.

and

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.

"Sure!"

blip-blip-blip

"Sure!"

blip-blip-blip

"Sure!"

blip-blip-blip

Then Bud added his own dialogue. He said to the screen: "Do you want to play?"

"Sure!"

blip-blip-blip

"Do you want to go upstairs?"

"Sure!"

blip-blip-blip

"Do you want some breakfast?"

"Sure!"

And on it went.

Was it stimming?

"Sure!"

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.

16 comments:

Kristina Chew said...

You've got me thinking about the Sapir-Whorf theory of how the language one uses can, may, shape our thinking.

"Stim" is a kind of short hand for us (like "meat in a box") to describe various things Charlie does and especially that end with him in behavior squall mode. And while the word oozes with negative associations, I hope that by using it in different contexts (as you do here, too), we might change the meaning of it; change its charge from negative to positive.

Just as "disability" need not be a negative word, if we try to change its meaning----I'm thinking here of how ethnic and racial minorities take racialized slurs or terms and use them themselves to "take back" the terms they are talked in, as rap groups like NWA, or in the writings of Frank Chin (in his The Chickencoop Chinaman and The Year of the Dragon).

Back to my coffee!

Wendy said...

Great post! I thought about the three different sentences and how I felt about the person (before I read your students perceptions) and I agreed with them 100%. It is amazing how synonyms can be so different.

Even though I hate the word "stim" I find myself using it a lot because C's ABA team uses it. Every once in awhile my husband and I will say "C seems particularly stimmy today". I think we need to find a new word.

gretchen said...

As always, I really appreciate your thoughtful reactions to everything Bud does. The things you write here really do make me think.

Every time I see you use the word "dysregulated", for example, I think to myself "I need to make that word a part of my vocabulary instead of 'stimmy' or 'extra-autistic' or other inappropriate words I might use to describe Henry's behavior."

But most days I am not making a conscious-enough effort.

I do have to add, though, that sometimes I DO feel negative about Henry's perseverative behaviors. As I wrote last week, when he seemed "extra stimmy" and only wanted to talk about Lady and the Tramp 24/7.

Those very dysregulated times make me uneasy, because Henry is not quite being "himself". Or the Henry that I can relate to, anyway. He seems lost in a world of Disney images and snippets of song or dialogue.

I don't like it- I feel negative about it. But, maybe the language I use can help change my own emotional reaction. I guess it's worth trying.

Jannalou said...

I talk about stimming all the time. Mostly because I do it.

I stim off my guinea pigs, I stim off my fibre-optic lamp, I stim off all these blogs I keep reading, I stim off my jewellry, I stim off books, I stim off music, I stim off... well... anything that appeals to my visual, auditory, or tactile processing. I experience it as a lot of fun, most of the time. Though sometimes I can tell that it's a reaction to stress, and I'm just doing it to keep myself from exploding (or imploding, as the case may be).

If I stim and enjoy it, if it keeps me centred and relaxed, why should I stop?

ballastexistenz said...

gretchen: I think the word dysregulated is far worse and more clinical than stim. My issue with stim is that it is simply not accurate. Dysregulated is worse than inaccurate, it gives a value judgement. I am not "dysregulated" when I do repetitive things or any number of other common autistic things. I don't like the implication that I am "regulated wrong" when I am doing things others do not understand. Dysregulated was one word that prompted me to write my recent entry Episodes, and other clinical terms. Hate that word, if I had grown up hearing "dysregulated" I probably would have hit someone after awhile the way I did with "episode".

Anonymous said...

MOM-Nos,

You changed my use of the word "stim" a while back when I read a comment you left on another blog. Since reading that comment, I stopped using the word on my blog. I have also tried to refrain from using the word at all. I can understand how it gives a negative connotation. I also must say that I look at the things that my son does repeatedly very differently than I have in the past.

Eileen

Lisa/Jedi said...

I really resonate to the idea of "de-clinicalising" our language for/about our kids. I didn't really understand that "stim" is shorthand for perseverative behaviour until you defined it, but I will say that I have always had a viscerally negative reaction to the word "stim" when I read it. To be honest, I also find "dysregulated" to be too clinical for my tastes, too... sorry :)

Perhaps we are fortunate that the main part of the assistance our son has received for autism (speech, OT, PT, etc...) has been in a non-clinical setting, so we haven't picked-up on the clinical descriptive words for his behaviours. My negative connotations for using clinical-speak to describe a child comes from long before my son was born, back when I worked with developmentally disabled children in school & summer camp settings in the 70's. My sense was that these kids spent so much of their time in "treatment" that they needed a vacation from this perspective on their lives at every opportunity. I spent a lot of time holding popsicles for kids who couldn't control their arms & hands, & swinging on swings with kids who couldn't sit up by themselves because many of them didn't have these experiences on a regular basis. This led me to develop what I call my "bread & roses" philosophy- that you can't just nourish & care for the body... the spirit needs to be fed, too. Using exclusively clinical language for my kid has never fit into that philosophy. However, we are teaching him the scientific words for his behaviours & diagnoses as part of the process of helping him learn to understand himself. But it's his choice whether he uses them, or calls them "Fred" (knowing my kid, Fred would win... :)

Either way, I really appreciated what you had to say on this topic!!

Alexander's Daddy said...

Words only have the power you give them. While others may view "stim" as a negative, I view it as an affectionate term to describe some of the things my child does. My view is more closely aligned to Kristina's. However, I find it very offensive when someone outside the community uses it because of the objectification of my child in that context. In my local group of autism parents, we affectionately talk about our children and their unique and common stims. The word stim can be empowering as well as derogatory. I also don't find dysregulation objectionable. I feel dysregulated every single day and feel free to label me that way as well when I deserve it.

SquareGirl said...

This is an interesting idea to me. The word "stim" was made up to describe repetitive behaviors and I have found it useful to betterr describe what someone is doing, but have never necessarily thought of it as negative. I do thin it has acquired a negative connotation, as people tend to think of the behavior as negative. I always remember a workshop I went to with Bryna Seigel and she said she wasn't certain that the word "Stim" was accurate, as whe "stim' meant was "self-stimulatory behavior" and the idea was that the behavior stimulated a part of the mind, yet she often found the behavior to serve a calming or regulatory purpose. I think that (insert word here) serves multiple purposes...I don't see the purposes as negative, so the word doesn't seem like a negative one to me, although I can see how they could.
Of course I love your point about words and I agree. I always try to use the word with the more positive conotation when possible. The other night, a parent e-mailed me to say that her son's speech therapist said that he is quite stubborn and wanted to know my thougts, and I shared that I see him as being determined and strong willed which is the reason why he is fighting so hard to learn. I think the speech therapist and I were saying the same thing, but I see his will as a very positive rather than negative thing.

MothersVox said...

Such a great post! Thank you MOM-NOS!

Before I started reading the autism parenting and autistic rights blogs I didn't know the language of "stims" or "dysregulation."

I wonder if the language of "stims" isn't a lot like the language of "dyke" was in the lesbian feminist communities or "faggot" was in gay activitist communnities -- a term of oppression reappropriated as a term of affection or self-acceptance.

The tricky part here is that lesbian and gay activists I have known would probably not have been terrifically comfortable with their parents calling them "my little dyke" or "my little faggot."

Would the autistic folks out there -- who speak of themselves as stimming -- have been comfortable hearing that language from their parents? I don't know the answer to this question. It's a real question, not a rhetorical one, that I'm throwing out to others.

When I was struggling with what to call Sweet M's meltdowns, I adopted the language of dysregulation that I read here. I found it neutral and descriptive, but now I can see that it can also have a clinical and "othering" tone.

As that philosopher of language, and some think, autistic genius, Ludwig Wittgenstein said, "Words are deeds."

MothersVox said...

P.S. I tracked back to your post on RDI and found it equally wonderful. I didn't know about this approach. So thank you for that as well.

ballastexistenz said...

But the thing is, you may be able to apply dysregulated to yourself, any of you, but that is not the same as saying it of someone else. The power structure is entirely different and you're ignoring that at the peril of the person you call that.

Saying that words only have the power we give them is kind of like saying that being punched in the face only hurts if you let it. It's true that words can be modified in their power, but when you're talking about someone with very little power in comparison to you to begin with, you're the one putting the power into the words and they're the one bearing the brunt of it.

Alexander's Daddy said...

"But the thing is, you may be able to apply dysregulated to yourself, any of you, but that is not the same as saying it of someone else." The assumption behind this statement is one of victim and abuser. If you assume that the person applying dysregulated to their child is an abuser, that argument may make some sense. However, I think it is a leap of logic to assume that anyone, let alone a parent who loves their child to the deepest part of their soul means anything beyond an affectionate way to recognize when their child is not feeling well. To attach a negative meaning to this term is to objectify the parent and their intentions. The power structure between parent and child is static whether the child is NT or Autistic.

"Saying that words only have the power we give them is kind of like saying that being punched in the face only hurts if you let it. " Sorry to disagree but this statement is non-sense. To equate a parent's affectionate term to physical violence is out of bounds and illogical.

"It's true that words can be modified in their power, but when you're talking about someone with very little power in comparison to you to begin with, you're the one putting the power into the words and they're the one bearing the brunt of it. " I would tend to agree if our words are meant to disparage or objectify. Intentions mean everything and only with age and wisdom can we discriminate between the two. There is an assumption to your agrument that the intention behind the words are suspect, which in of itself lies an assumption which is based on one's own perceptions.

Also, assuming that we should treat our Autistic children any differently than we treat our NT children is and of itself discriminatory and is a form of bigotry of low expectations. To assume that our Autistic children can't possibly understand affectionate lables from perjorative labels is to say that our children simply don't have the cognitive ability to discriminate which I reject.

Anonymous said...

Having read the previous posts, I've had to take some time to really assess what I believe to be true. My learning curve on autism has been greatly heightened this year with all I have read, listened to, and experienced. I too have listened to specialists in the special education field, as well as a variety of parents refer to types of perseverative behaviors as "stimming", and finally found myself for the first time this year asking a trusted colleague what, exactly, did that mean. She too gave the explanations you have all given. I have to admit, I too did not care for the use or connotation of the word. I think I don't like it because it classifies a behavior particular to a considered "disability", as well as having a sense of uncontrolled permanence. It also doesn't really explain the what or the why of the behavior. This is what is critical for me to try to understand so that I can better plan, guide, and just comprehend on a daily basis. When you say that a person is dysregulated, however, it leads to the thought that it is a temporary behavioral condition, which may, in fact, apply to any population - teachers have been known to have a dyregulated day or two. Regulated days, or even moments, are expected, as well as anticipated. It's a "glass is half full" attitude.
What's in a name? Plenty. This summer, a member of our special education team brought up the idea that perhaps we should no longer call or "label" kids as "sped" kids, or teachers as "sped" teachers. She has found that throughout the years, this shorthand word, has begun to carry a very negative connotation to both those inside and outside the profession. Mostly, it's the kids. All it takes is for one child in the class to call someone a "Sped". You can just feel that can't you?
As we say in kindergarten - "Words can hurt." So, eventhough it may be a term of endearment for you and your family, we do need to be aware that as these words enter the mainstream, their meanings will evolve.
I heard a colleague use the term "self soothing" the other day, in place of perhaps "stimming". It clearly explained the behavior, and it's purpose, at that moment, very well. No labels, No connotations. Just calling it like it is. I watch all the kids, and their behaviors each day. All children will have a regulated day, hour, or minute. All of them will have dysregulated ones as well. They are who they are. May you all have a regulated evening. Mrs.H.

ballastexistenz said...

Victim and abuser? I don't recall saying anything remotely like that.

Actually, I would say person with certain amount of (power, privilege, something along those lines) and person without certain amount of (power, privilege, something along those lines).

An adult with a certain degree of communication ability and power in their life can define themselves more or less however they want to. They can even use terminology that would be highly offensive when applied to anyone else.

A child with a communication impairment (actually either a child or someone with a communication impairment or an adult with less power than most adults have in some areas) has much less ability to define themselves and has more often to accept whatever definitions are put on them by others.

Which means that an adult applying something like that to a child has much more responsibility to deal with in applying it than an adult applying something like that to themselves.

I don't even see where abuse comes into it. You don't have to be an abuser in the traditional sense to wield great power over someone with the way you talk about and to them. And power structures are not determined entirely by love, you can love someone as much as you could possibly love anyone and still wield enormous amounts of power over them.

I find it bizarre and frankly unsettling that you view power, love, and abuse in the way that you do. All parents who are actually raising their children have a lot of power over their children (which means that bad things will happen whether they love them or not, abuse them or not). Many abusers love their children and many people who do not love their children do not abuse their children.

Love may be (in most families) utterly unaffected by disability, but power is not. If I am taking care of two people, and one of them has much more ability to be independent of me in certain ways, and also to say certain things (or say anything at all in language), then I have more power over the person who depends on me for more and can communicate less clearly to me.

I have immense amounts of power over my cat and my dog, in fact I have the ability to control nearly anything about their lives that I want to. I understand my dog less than I understand my cat (I can read cats better than I can read dogs) so my potential for inadvertently abusing power is greater with my dog than my cat. To fail to acknowledge this because of how much I love them would be the fastest recipe for abuse of power (which need not be intentional, and in fact is often not intentional), even though I am not an animal abuser.

I am only one of many, many people I know who lacked enough of a communication system during certain parts of childhood to even contemplate explaining to our parents what we thought of certain words they used. You are assuming that we all had abusive, unloving parents, and that this is where I am drawing all of my conclusions from. Nothing could be further from the truth. It is not objectifying parents to point out that they have more power over their own lives and self-definitions than their children do, it's just plain honest.

The idea that I was talking about abuse when I talked about the power of words does not make a lot of sense either. Some words can hurt even when used by people who love you. Some words hurt even more when used by people who love you than by people who don't. Imagine growing up and having your loving but totally uncomprehending mother or father explain to people, with all the good will in the world, that you have the mind of a two-year-old child. Do you think that has no power, when you can't talk back, when you know it's not true, and why it's not true?

Hitting need not be abusive in nature. I used to hit people because I had myoclonic seizures that caused my arms to fling out at random. I've, while unable to move on my own, had my wheelchair parked by others next to a guy who also couldn't move his chair, who had cerebral palsy and therefore an arm that kept bashing me in the face every few seconds. It would have been ridiculous to claim it didn't hurt, and it would have been equally ridiculous to claim that he or I had any malice for anyone we hit through involuntary movements.

In a setting such as this, online with time to type about it, I have more power to choose what words I do and do not use on myself, than anyone has who has less of a communication system than this, and than myself at some other times or in some other settings.

If I were to have children, I would think much more carefully about what words I used on them. And it is doubtless that there are words I would use on myself (I even know what some of them are) that I would never use on a child, especially a child I was raising. Some of them are downright offensive in most contexts, and some of them are ones I have accepted as a compromise in my life but would be unwilling to apply to a child, unwilling to force my own compromises on someone else. (There are some words I will use on myself but on nobody else for that reason.)

You are telling me that I am the one incapable of discerning between what was meant well and what was meant not-well. That if I have a problem with something, it means that I think it was meant not-well. I know, though, that the road to hell is paved with good intentions and that it's possible to do good while trying to do something bad, and to do bad while trying to do something good. There have been people literally intent on killing me who have unintentionally done me and others a lot of good in the process, and there have been people totally intent on loving and helping me who have hurt me. Acknowledging this does not objectify anybody nor does acknowledging harm mean acknowledging lack of love or good intent.

I spend part of my time, as an adult, unable to type. My best friend does her best to translate for me when this happens. Sometimes she screws up. It's unavoidable. If I were never able to type, I would not be able to call her on it afterwards. She sometimes uses descriptions or behavior towards me that I find insulting, even though I know she doesn't mean it. Because I can type some of the time, I can tell her so, and we can talk about it.

This is the person I have the closest relationship with at the moment, a person who knows me better than anyone but I do. It is fortunate for both of us that she does not feel objectified or like she's having her intentions or ability to love insulted when I bring up power differences in certain aspects of our friendship, power differences brought about in part by disability (they happen to run both ways in different respects, doesn't mean they're not there).

At any rate, I've lived on a whole spectrum of ability to counter certain viewpoints in ways others understood (and both being a child and being autistic make it harder to do so), and that in itself constitutes a huge difference in power that is not and cannot be fully mitigated by love, good intentions, or anything else. I don't think it's bigoted or unperceptive to say so, nor to note that you have to take age and disability into account, among many other things, when considering power (which, while I'm busy shattering weird assumptions about my posts, is not an evil thing, it's something that exists and no amount of wishful thinking and love can get rid of it, I have to think about it just as much as you or anyone else does in order to be responsible).

unashamed said...

I stim a lot and I don't consider that OR the word to be or mean anything bad. I saw a psych nurse last week and she told me that anything that I didn't consider to be a problem is not a problem for me. I mean that has its limits but I consider it to include stimming. She was saying that it was ok if I wanted to count parking meters or stroke fabrics pretty much. I think it is too. I think I have a really good view of things usually. And as it were I see my life as generally good.