Monday, March 27, 2006

More than words

I really appreciate the response that I got to my last post. The diversity of opinion reflected in the comments is fascinating to me, and it has given me a lot to think about.

Clearly the negative associations that I have with the word "stim" are not broadly held, especially - as several people pointed out in their comments - by adults who are themselves autistic. I've been thinking about that a lot, and am reminded again of some concepts from my Interpersonal Communication class, in the unit in which we discussed perception.

In communication theory, "perception" refers to the way that we take in information and the way that we make meaning of that information. Many of the perceptual processes we use occur automatically - we notice what we notice, and it means what it means to us. We are conditioned to make meaning of our experience without even being aware that we're doing it.

According to Joseph DeVito in The Interpersonal Communication Book, "One frequently used rule of perception is that of proximity or physical closeness: Things that are physically close together constitute a unit." So, for example, when we see

555 3344

many (but not all) of us think "telephone number." Though we have no real reason to think that "555 3344" is anything other than a random string of numbers, our minds resist that kind of chaos. The physical proximity of the 5's make us see "555" as one unit; the space makes us see "3344" as a separate unit. And different perceptual processes (what DeVito calls "schemata") make many of us in the U.S. look at a unit of three numbers followed by a unit of four numbers and think "phone number." Our previous experience with "555" as the exchange used for fictional numbers in movies and books only strengthens our inclination to view these numbers in that specific way.

But things don't have to be physically close to each other to trigger the perceptual rule of proximity. We also use a temporal rule, or as DeVito says, "Things occurring together in time belong together." Kristina at Autismland has written about this phenomenon from a literary perspective in her posts about metonymy.

As a result of the "temporal proximity" rule, DeVito says, we perceive verbal and nonverbal signals sent at the same time as being related to each other. Taking it a step further, I consider the way that the Dire Straits song Money for Nothing always reminds me of the bookstore I worked at for a brief time in the summer of 1985, simply because the song was at the top of the charts at the time.

These temporal connections can be powerful, even if we are not consciously aware that we have made them. I was reading a wonderful biography of Paul McCartney when my daughter died. The bookmark remains untouched halfway through the book. I can't read the book now, because the book itself makes me sad. That connection is so powerful, in fact, that when I opened the new Beatles biography that my husband bought me I found myself unable to read it. It reminded me too much of the McCartney biography and it, too, made me sad.

I've been thinking about temporal proximity as I've considered my reaction to the word "stim." I was introduced to the term when Bud had just been diagnosed, and I was confused and unsettled about it. I was introduced to it in posts written by parents who wanted their children's behavior to stop, and their writing was infused with frustration, helplessness, hopelessness, and anger. As I wrote previously, I didn't know what they were writing about and I ended up feeling panicked, more confused, and even afraid.

That is the connection - the gut-level reaction - that I have to the word "stim." It has nothing to do with the behavior - nothing, really, to do with the word itself. Just as the McCartney biography is not sad, the word "stim" is not angry. And yet they each feel that way to me.

The reverse is true of the word "dysregulation" for me; those temporal connections are with things like excitement, enthusiasm, insight, understanding, and respect. I first heard the word at a SCERTS workshop, at an important time in the evolution of my thinking about Bud's autism. It was this workshop (and a previous one on RDI) that allowed me to think differently about my reactions to Bud's behavior and, I believe, to be more respectful of it. Prior to that time, I had only been exposed to approaches that sought to address "problem behaviors" like "aggression" and "stimming" - the very terminology of which seemed to make value judgments, i.e., "this child's behavior is a problem, so this child is a problem." (The unspoken statement, of course, being "and problems are bad.")

But in the SCERTS model, the words "regulation" and "dysregulation" are intended to be value-neutral. What I like about using them to consider Bud's behavior is that instead of focusing on the "problem" that his behavior might be creating for us, they challenge us to focus on the problem that the environment we have created might be for Bud.

A recent example from school: Last week Bud had a difficult time transitioning from his classroom to a session with his Occupational Therapist. He didn't want to go with her, despite the fact that it was time for his session and despite the fact that he likes his OT very much. As his OT led him out of the room, Bud turned to her and yelled (very uncharacteristically) "I'M GOING TO BITE YOUR HAND!" They pressed on, and further down the hallway Bud took off the Sherlock Holmes hat he was wearing and hit the OT with it.

At pick-up time, Mrs. H and I talked about what happened. I believe that if we did not have the SCERTS language of "dysregulation" we would have had a conversation about Bud's "aggressive behavior". Instead, we had a conversation about what might have caused Bud to feel dysregulated to the extent that he felt like his best options were threatening and hitting. We talked about the difficulty he has had sleeping recently and how tired he has seemed, and we talked about the fact that Bud had not gotten any prior notification that this transition was coming - something he has come to expect in school.

Once we had considered those factors, our problem-solving was not about how to make Bud stop being aggressive; it was about how I can help him get more and better sleep, and about how Mrs. H can insure that he will get prior notice before he's expected to make transitions. In my opinion, using the philosophy and the language of "emotional regulation" helped us to be more respectful of Bud.

That being said, I definitely understand why "dysregulated" is a jarring, clinical word to people who don't have the same associations with it that I do. I looked up the "dys" prefix online. Two of the definitions listed were "Abnormal" and "Bad." Both offensive, and both entirely inappropriate when making reference to Bud.

But it is the third definition of "dys" that I'm using when I use the word "dysregulated": Difficult.

The SCERTS model defines "regulation" as being "available for learning and engaging." So when I say that Bud is "dysregulated" I mean that he is having difficulty being available for learning and engaging. He might be having difficulty because he is overtired, or because people are talking too quickly, or because his environment is overwhelming - but whatever the reason, he is not in a state in which anyone can tell him to "sit down and pay attention" without making the situation a whole lot worse. Instead, our efforts need to focus on helping him to regulate - to become available again - before we can make any requests of him.

I hope that when others read this blog, they will understand that this is the spirit and the philosophy behind the words that I use. "Dysregulated" is not an ideal term, as recent conversations have indicated. But it's the best one I have at the moment. And regardless of the mixed reactions to the word, Bud's reaction to the philosophy is very positive. It seems to work for him. And if it works for Bud, it works for me. At least for now.


kristina said...

According to the rather large Greek dictionary behind me, the prefix dus also means "hard, bad, unlucky"; it also has the sense of "divisive." I need to pursue the etymology, but I think the dif of difficult is related to dus.

Interestingly, your "post-op" with Mrs. H. about Bud and OT is pretty much what I go over with Charlie's ABA teacher and his ABA consultant in a "functional behavior assessment." We talk a lot about the aetiology of the behavior, stim, "what happened"; in particular, Charlie's ABA consultant has been attentive to his "scripting" and its connection to "stimming."

When I saw

555 3344

all I could think was, what's the area code? Cell #? Skype?

Then I thought about Danny DeVito.

Alana said...

I agree with your point and have always read your posts with the impression that you respect the needs of Bud. Words tend to bring up so many different emotions in people, so I often find it difficult to choose the "appropriate" word to describe behavior. I use the word "stim" to describe a repetitive or perseverative behavior, even though I don't think it is always self-stimulatory, but often times calming (maybe I should start calling the behavior "calm", as in "he's calming") as well as the word "dysregulated" (I agree that dysregulation is usually a result of the environment we created and not simply a "problematic" behavior). To me these words are neutral, but give me the language to describe something. I suppose the more I've seen these behaviors as communication to others and ways to help US understand we need to change our environment, surroundings, language, etc., rather than place judgements on the behavior, I tend to see these words as very neutral. I agree that people have associations with it however that make it hard for them to hear or use these words...I'm always open to alternatives, as long as they can help people understand what is going on...

Kev said...

Its true that words have a power beyond their literal meaning. Every time I hear someone use the word 'disease' to describe autism I grit my teeth. Every time I hear someone use the word 'retarded' (a very American thing it seems to me) as in 'thats just retarded' I also grit my teeth.

These words have a distinct clinical scientific meaning and concept - to a scientist the word 'disease' is appropriate but to me it is insulting, derogatory and offensive.

Jannalou said...

Yesterday, I was talking with a friend about one of my online friends, whom I met in an autism newsgroup.

She asked me if this friend also worked with autistic children. I said, "Not exactly." Her next question was whether or not they were autistic. To which I said yes.

The next question was a statement with a question mark at the end, that my online friend "must be high functioning, then".

And I paused, and I said, "I guess."

Because I guess that's how other people would view my friend, who is registered in a vocational program and doing well in it. It's not even a blip on my radar, though.

"High functioning", "low functioning", "severe", "mild", "moderate"... what do any of these words really mean? On the computerized testing that my psychologist has me do, my results show that I have "severe" ADHD. Yet without medication, I successfully completed high school and two undergrad degrees. I was able to support myself - to an extent. So am I really all that "severe"? I don't know, because I don't really know what that means...

gretchen said...

I have been thinking about this quite a bit also. One other aspect that I wanted to add is this: I don't use any of these words in front of Henry. I don't say "boy, what's with all the stimming today?" Or "gosh, you sure seem dysregulated."

I often say "why are you feeling so grumpy?" or "are you feeling frustrated?" The same words I would use with my NT son or my husband, or to describe myself.

I think we have to be a LITTLE more clinical in thinking about our ASD kids, because they have more "issues" that come into play. (Issues is probably a bad word too- I am afraid about everything I say now!) I use these words when talking with my internet-mom-friends about things our children have in common. Commonalities that they don't share with most typical kids.

Oh I HATE the frequent use of the word retarded also- with a passion.

The Jedi Family of Blogs said...

The bottom line is, really, finding what works for us, isn't it... walking the maze of terms used to describe our kids, it's not always easy to find what fits or feels right, but it's choosing our words with respect that really matters, & I know that this is foremost in your mind :)

Concerning the high/functioning-low/functioning pseudo-dichotomy... this is the essence of society trying to put people into little boxes. I live with a sensitive & intelligent child who tests way above his age level scholastically & has many talents, but also melts down completely (sometimes injuring himself) when overcome by OCD stress. If you met him unstressed you might never know this & assume a "high" level of functioning. This pigeonholing of people doesn't do justice to their full humanity, any more than referring to Picasso as just an "artist" or Emily Dickenson as just a "poet" (she might even have disagreed with you...).