Stupidity (#277)

There must have been an accident on the Pulaski Skyway because I sat for a good fifteen minutes on one of its two steel humps, 135 feet above the New Jersey Meadowlands, along with a good percentage of Friday’s NJ/NY commuters. I had already passed three accidents and seen a man walking on the right shoulder of Routes 1 & 9 towards the Port Newark exit (and could only wonder, if it was he who had abandoned a broken down car, how had he crossed two lanes with cars constantly driving at least the speed limit?).
Nothing like being stuck in your car by yourself above an industrial morass of oil tanks and beds of reeds and abandoned junk to think about every last thing on your mind.

Where is Charlie going to go to school after his school closes in June ? How can my mother-in-law make up for 50, 60, 70 years of non-exercising and get out of her hospital bed? Why did that NYC taxi just wedge its way in front of me? Why did they think giving Charlie a good reinforcer and saying “good keeping your head up” would stop him from banging his head?

I got to my office, met with students, prepared my classes, found Kassiane‘s comment on yesterday’s post about autism teachers. “I think an autism teacher needs to know about various interventions (ABA sure wouldnt work with me, Id look at them like they were stupid),” Kassiane wrote.

Charlie once had an OT who, to accommodate for his sensory needs, infused the room with orange scent, had the color orange all over the place, and played Native American drums and pipes. It took awhile, but we found out that Charlie regularly had an accident during OT. It took ten minutes for Charlie to go back to the classroom, clean up, get dressed in his spare clothes, go back; ten fewer minutes when he had to be in Environment Orange.

Charlie has had plenty of bad ABA and–now–only good and there are plenty of times when I used to speak to teaching personnel and wonder if he was looking “at them like they were stupid.” Every school day this week was good, with Charlie moving steadily up to Edmark Lesson 7, working on his penmanship, learning to build Legos with a classmate and ask him to add another piece. Today he had a home ABA session almost as soon as he got off the bus and he plunged right into working on reading comprehension (via word to picture matching), trying out a new game, working on waiting.

Kassiane is a teacher too and noted a number of things–augmentative communication, self-advocacy–that autism teachers ought to be prepared to teach. Tina at Autism911 noted three simple rules: 1. No diapers; 2. No sippy cups or bottles; 3. No strollers or being carried as “All of these rules are important because they are independent skills that require following directions. When children can follow directions and become independent, they can become part of their families and communities.”

Following directions; independence; being part of one’s family and community: Not bad goals, to start with and expand on.

Jim rushed to get home by 6pm for a bike ride; Charlie had sat for an hour at the front window, waiting. “Daddy home! Daddys coming home.” He got his glasses down from the shelf and called for “hell-mutt!” before running out to see his yellow bike. As he and Jim rode off, Charlie glanced left towards his dad and I could just see a grin from the way the corner of his mouth was upturned.
Surprise and brief silence is how we’re often greeted when we mention that “Charlie rides a two-wheeler and uses the hand brakes.”

The Latin root of “stupidity” is stupere, “to be senseless, dumbfounded; gape.” Other Latin words for stupidity are amens, “mindless”; crassus, “solid, thick, fat, gross”; laevus, “left; awkward, foolish, silly.”

Afraid to say this but stupidus with the “dumbfounded” meaning is too often the response when we say “Charlie understands everything we say” and “Charlie is smart but his brain is wired differently.”

In my Cultural Anthropology class in which we are still discussing Anne Fadiman’s The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures, we could not stop wondering, how could Lia Lee’s American doctors be so…..stupid…as to not take into account the vast differences between Hmong culture and their own? Why didn’t they try to understand Lia’s epilepsy as qaug dab peg, as “the spirit catches you and you fall down”? I mentioned Terry Schiavo in reference to the “persistent vegetative state” that Lia Lee is now in. I mentioned the after-school program that Charlie used to attend and the severely developmentally disabled adults who were also there, and the minimal attention they received.

Where does stupidity lie?

Why do we just stand and stare and gape–stupidi—in the face of difference rather than trying to learn about it, to learn how we can change what we do?
It might seem pretty stupid to hit your head when you know it hurts and you might end up with a nasty scab like the one Charlie has. It must be beyond torture to understand everything plus and not have the words and speech skills to communicate it, so that you (Charlie) concludes that you have to give everyone a wake-up behavior.

It’s me who feels really stupid when these things happen. And I know, I have to restart my education, help Charlie to be his own advocate and never settle for anything less than the best, than what he needs.

This spirit of advocacy tinged my conversation with my mother-in-law, who reported that she had gotten out of bed to eat lunch in the dining room. For the past weeks it has seemed impossible to motivate her to do her physical therapy for her knee replacement surgery. As she cannot remain in the rehab hospital without doing the therapy, there has been serious talk of her having to leave. Everyone has felt beyond “dumbfounded” to help her.

“Jim’s going to visit you tomorrow, is there anything you want?” I asked.

Pause. “Well, dear…..” Pause.

“Anything we can bring you?”

Pause. “Well, dear, maybe some of those—some of those muffins, the little ones. The food here’s so terrible I don’t want to eat it and if you could bring some of those I’d have something…..”

“Sure, mini muffins. What kind?” I asked. She wanted blueberry and I brought the phone to Charlie (still waiting at that window): “Hi Gramma! Hi! I ‘ine. Bye Gramma.”

“I asked him, ‘what’s up?'” Gramma chuckled.

I was glad to be a bit astounded.

8 Responses to “Stupidity (#277)”
  1. Argh… uh, I commented on this entry, in the other entry. I mean I commented on the “3 rules” in the autism teachers entry that you linked to from this one. Sorry for any confusion this generates.

  2. Amanda, it’s crucial to me to hear from you about this, as you commented in the previous post,

    Good teachers and bad teachers abound at all levels of education, in all subjects, and I try to do my best in my own classroom. If I might make any distinction between bad ABA and good ABA, I would say that the teachers he seems to be fondest of–who he runs to meet at the door and who have been teaching him to read and write and, really, to feel pride in himself because he is learning–“do” the “good ABA.” They teach Charlie in a manner utterly individualized to his needs and utterly different from anything in a “regular” classroom.” The “reinforcement” is often of a very sensory nature: rolling on a huge therapy ball, lots of music, “massaging” his back, piggy back rides up and down the stairs.

    ABA done badly is bad and Charlie has unfortunately had too much of this. His teachers in his previous school had the best intentions but they did not presume competence in him, as Douglas Biklen. They came to presume that he could not be taught to read because he was mentally incapable. Like the OT with the orange room, they accepted autism and Charlie fully, but acceptance in this case was patronizing.

    Teaching inevitably involves setting rules and placing demands on students. My rules are porous and flexible and change with the students on a day to day basis and with the subject matter of a class. My students would much rather talk about their weekend plans than learn the 5th declension; my mother-in-law would prefer to stay in her hospital bed (and she really would have preferred not to have had knee surgery at all). Teachers ask for change.

    An AS student in a class made humming noises and occasionally had to leave the classroom. He had explained why he needed to do these things in an email and I am very grateful he did. He also wrote his papers in a manner unique to himself. I learned much from him.

  3. I’m not sure quite what you want to hear from me about, but since you seem to be responding to the idea of “acceptance of autism” in a strange but common way, here’s the same response I gave to someone else who seemed to be regarding it that way:

    It’s not where the desire to change a child comes from, that makes it good or bad. Not on its own. It’s, even more, what you desire to change.

    Non-autistic people seem to have better instincts for what to change, and what not to change, in non-autistic children. Not perfect instincts, as is obvious from looking at any parent/child combination you can think of, but certainly good ones.

    When confronted with an autistic child, many non-autistic parents, or even autistic parents whose belief system has been formed by a predominantly non-autistic world, have no idea what to do. They have all the good intentions they would have with their non-autistic kids, but they have fewer instincts for how their autistic kids operate. They may not know what growth looks like in an autistic kid. They may know so little about what growth looks like in an autistic kid that they mistake it for something they call regression, and panic.

    When autistic people talk about not wanting to be changed, we’re not talking about wanting to remain static and unchanging throughout time. I actually have to strain a fair bit not to consider it deliberate that so many people misinterpret us that way. It’s easier to say “Well of course you want to change people, all people change,” than to look at what we’re actually saying.

    When we say we don’t want to change, we’re incorporating all four dimensions in life already. We’re incorporating growth through time into our concept of the thing we don’t want changed. We’re saying “We don’t want to be changed” in the same way that a cat, faced with becoming a dog, would say “I don’t want to be changed.” The cat isn’t denying the important passage from kittenhood to adulthood. The cat is saying I want to grow as a cat, not a dog.

    When people say “But all people change,” they’re acting like we’re only talking three dimensions, leaving time out, an impossibility. And quite frequently when they say that they sneak in something about making us into dogs, only they call that part of the growth from kittenhood into adulthood. “Sure, learn about stalking mice and stuff, I’ll give you that, as compromise or something, but hey, wag your tail when you’re happy, not when you’re mad. That’s the right way after all. You can’t deny change. Didn’t I just talk about important skills of the adult dog… er… I mean cat?”

    No, I’m not saying autistic people are a different species. But we do have a pattern of growth and learning that has enough distinctive elements that it needs consideration in its own right, the same as being a different species would. It goes deeper than either personality or culture, that’s for certain.

    It’s only recently, though, that I’ve been able to figure out that it’s not entirely deliberate that so many non-autistic people can’t imagine us saying “We don’t want to change” without meaning “We want to stagnate.” The entire model for growth is not based on our kind of growth. My own brother used to tell me he was sent for a developmental evaluation because he went through the developmental stages “in the wrong order”. If they were such truly universal developmental stages, we’d all go through them in the same order. If developmental stages were based on some of my developmental stages, instead of the ones they’re based on now, most of the world would be regarded as severely perceptually regressive. Not that that would be any better, but I do retain skills that are important to my way of functioning but lost by most people in infancy if they ever had them.

    Nonetheless, what we need is to be helped to grow in a very autistic way. We need the skills it takes to be autistic in this world, not the skills it takes to be non-autistic. Some of those skills will overlap with the skills non-autistic people need. Some will look the same but be accomplished by very different means. Some of the skills we need, and have, are ones that non-autistic people don’t have, or don’t have very much of, and some of those are essential to our ability to function. Unfortunately, given that we didn’t build the language, a lot of that last kind don’t have words as far as I know. But I’m sure many autistic people know exactly what I mean.

    And since non-autistic people generally don’t know about this stuff, and for a whole lot of other reasons, we need exposure to a wide variety of autistic adults, I think. Not as stand-in staff/aides/special ed teachers/etc (the training for which can impede the kind of learning that’s necessary), but as people we know. A wide variety because all autistic people aren’t the same. I learned more about myself and how to deal with the world in a few months from an autistic mentor (in the true, not the over-used commercialized weird not-real icky thing, sense of the word, and I’d look at any program creating artificial “mentors” with a large degree of disturbedness), than I learned spending most of my childhood and adolescence being taken to various counselors and programs and institutions and so forth. But she and I clicked and that can’t be forced or mandated and autistic people who are not compatible in certain ways with each other being forced into that role can be horrid (I’ve been in too many situations where someone was being forced on me or someone incompatible who didn’t know it was trying to force themselves on me in that way). The opportunity for things like that to develop naturally is important.

    And our parents also need exposure to a lot of autistic people, in a very non-pathologized way (not just “here’s the story of my life according to the DSM-IV” kind of things), because then our ways of growing won’t seem as disturbing or mysterious to many of them, and maybe they’ll be able to learn to distinguish cat-growth from dog-growth somewhere in the process. 😉

  4. Strange and common–thank you!

  5. Sorry. By that I meant it seems strange to me, but it’s a reaction I see a lot. 🙂

  6. Strange and normal are two kinds of relative.

  7. Phil Schwarz says:

    I think the hallmark of “good ABA” (or for that matter, good teaching or therapeutic intervention for autistic kids, and adults, in general) is that its ultimate goal is to do at least some part of what Amanda and Kassi have suggested:

    * to help the student to grow — in an autistic way

    * to develop the skills it takes to be autistic in this world, not the skills it takes to be non-autistic

    * to develop and reward self-advocacy — including how to say NO

    and ultimately, I would add:

    * to develop the skills necessary for the student to conduct his/her *own* analysis of the behavior of the other people s/he encounters in life, so as to navigate this world successfully

    — in other words, to teach the *student* how to apply behavior analysis, in the face-value meaning of those words.

    That’s 180 degrees from how ABA is so often mismarketed (as a means of “recovering” kids from autism) and misdirected (towards “indistinguishability from nonautistic peers”).

    It’s time to change that.

  8. Charlie analyzing his ABA…… Phil, this is excellent; we’ve long been troubled by the “marketing of recovery of cure” of ABA.

    Much more to post about!

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