TIP 3: Relationships and Rivalry

It’s been a while since I brought up the panel I went to a few weeks ago with parents and siblings of individuals (mostly young kids) with ASD, but I’ve been thinking about this particular issue quite a bit recently, so I thought I’d return to it.

There was one question during the panel where each of the families were asked about the relationships between the siblings. And all five of the participants from multi-child families said: “Sibling Rivalry wasn’t really an issue. Our kids knew better than to get our autistic son riled up, so we were fortunately able to skip that part.”

And as I was listening, I thought, “Good lord, I must be the worst brother in the world. Carl and I fought and teased and annoyed each other endlessly. How could I have been so thoughtless when everyone else managed to be so kind to and understanding of their siblings?” (For a particularly amusing example of mine and Carl’s antics, view this post).And I carried around quite a bit of guilt for quite a while.

But then, I considered for a moment the relationship Carl and I have now. Everyday a conversation similar to this occurs:

• That hat is ugly.
• Well your face is ugly.
• Well your soul is ugly.
• Well your face’s soul is ugly.
• Well your soul’s face is ugly.
• Does my soul have a face?
• Does my face have a soul?
• Touche’

We’ve been having this exchange for years on end (and no, we’ve never decided whether or not souls have faces, or, if they do, if it is possible for a soul’s face to be ugly). And when taken at face value, it is merely the slinging of insults. Mom tells us to knock it off, we both knock on the nearest surface in a fake salute to literalism, and it seems as though a fight has ended.

But for us, this isn’t a fight. It’s a ritual, an act, a way for the two of us to connect to one another. And though it has developed and changed over the years (we now usually don’t have physical contact involved, though it is still sometimes necessary to untie his shoes just for old time’s sake), that has always been its meaning for us. Fighting or mock-fighting, brings us closer together as brothers, as family. It’s what works for us, even if it might not seem ideal to the rest of the world.

Any thoughts on sibling rivalry? Is it natural and to be encouraged or condemnable and better off avoided?

TIP 2: Clumsiness and the ASD child

Listening to parents, reading through the literature, and heck, just watching the kids, you’ll notice a common trend: autistic kids are clumsy. Oddly enough, this tends to be specialized by diagnosis (with Aspies having worse gross and fine motor control at 15 then HFA’s. In fact, it is one of the few things that can separate those with an Asperger’s and HFA diagnosis at that age. And yes, you have my permission to cite that handy fact whenever you’re informed that Asperger’s is not a real disorder, while autism is.) But I have seen little speculation as to why there is that separation, and I’m not going to try to address that here.

However, what I do think is important is the fact that autistic kids tend to be clumsy, and there has to be a reason for this. One of the biggest contributing factors, in my opinion, is our poor proprioceptive sense. Proprioception refers to knowledge of the body, specifically where the body is in space. If you have a typical nervous system, it probably is one of the senses you think least about. In fact, when asked to list the bodily senses, unless you have a deficit in one or are studying them specifically, you’re almost guaranteed to miss vestibular (balance and head-orientation) and proprioception. But for many individuals with autism, proprioception is a very big deal, mainly because ours tend to be terribly deficient.

If you will, humor me for a second. Hide your arm behind or under something, and your hand behind or under something else, so that all you have showing is a bit of forearm. Stare at that bit of forearm and gently wiggle your fingers. Note that the forearm doesn’t move. Now for most people, despite not being able to see the arm moving, there wold be no reason to believe that the forearm is not your own. After all, you can most likely feel it, from the inside, and thus know it is there. If you have an ASD however, this situation might utterly confuse you. Just yesterday I grabbed my forearm with the extent to remove it from the area where I was trying to sleep only to realize it was, in fact, my arm. Oops.

Dr. Sacks (one of my favorite authors) writes about a similar case in “An Anthropologit on Mars.” The story is titled something like, “The man who threw himself out of bed,” and is about a man who loses sense of self v. non-self and thus throws himself off the bed when attempting to get what he believes to be a mannequin’s leg off of his bed.

Now consider how this relates to movement. You’re walking along the hallway. You know where both your legs are in space because they’re moving. But your arms, well, they could be anywhere. You’re left with two options. A) Stim. B)Accidentally ram your arms into things because you didn’t realize your arm was about to come into contact with something. (This is one of the reasons I highly suggest against stopping stimming. Though it looks purposeless to you, I promise, it has meaning to us).

What can help? Compression clothing is a nice option because it provides constant proprioceptive input. Puffy/spiky chair cushions are quite handy when sitting. Something to carry in the hands provides pressure and thus input (you notice that common trend of wanting an item in both hands? This is part of where it stems from). Stretching the muscles often can provide a bit of an ache which can be rather helpful.

Can anyone relate? Or totally disagree? Have any suggestions on how you get proprioceptive input?

TIP 1: Why smart autistic kids fail in school

Autistic individals are inherently good learners. When something interests them, they can memorize the information and parrot it back without a modicum of difficulty. So why do so many do so poorly in school?

There are two main culprits: lack of motivation and poor learning environments. And although lack of motivation is important, it is also rather complex and difficult to address in 1000 words or less. So I’ll get back to that thought in a later post. No, what I want to talk about now is the poor learning environment ASD kids find themselves immersed in, aka ‘the classroom’.

At first glance, the classroom doesn’t seem like a particularly problematic environment. The rules are relatively simple: you sit in your seat, listen to the teacher and take notes, raise your hand to ask and answer questions, and then grab your books and move on to the next class. If everyone else can do this effortlessly, why is it next to impossible for the ASD child?

• Sitting in your seat: For the typical child, staying seated is a rather easy feat. But when you have autism or almost any other neurological difference, it becomes far more difficult. First, the seat is rather flat and bland, so there’s no real proprioceptive input. The light above your seat might flicker or whir and that will distract you from the lesson. What is going on out the window is likley far more interesting than what it written on the blackboard, and you need to devote a ton of energy to reminding yourself it is not okay to get out of your chair to look out the window. Your pencil might break and then you have to try and recall the list of when and how to leave your seat to get your prencil sharpened without getting yelled at for disrupting the class.
• Listen to the teacher and take notes: More often then not, your auditory processing capabilities lag a bit behind your peers. By the time your teacher reaches the end of a sentence, you’ve just begun to process the beginning. After a five minute lecture, you’re likely five or six lines behind, and you eventualy just have to give up in frustration. Not to mention that the kid tapping his pencil behind you and the radiator turning on and off and the cars outside the window and the pens on paper, chalkonblackboardsteachernextdoorgirlwhowhispersboybitinghis nailsitsall TOO MUCH for you to process out and try to listen to the teacher. Then there’s the note-writing process. Your pencil grip was never quite perfected and no matter how slow you go you can’t make the letters look the way the teacher does. You keep going back to make the letters and edges line up just right, and your notes are getting even further behnd. After a full period’s lecture you might only have half a page of notes because of all the competing processes your brain was trying to complete.
• Asking and Answering Questions: This one seems easy enough. The teacher asks a question and you raise your hand to answer it. But this is a social situation, and like any social situation there are a ton of rules you haven’t seemed to figure out yet. Does the teacher want a sentence delivered after a hand-raise or a called-out group response? How much is too much to say? How often should you raise your hand, especially if you know the answer to all the questions? What do you do if for five questions in a row the teacher ignored your hand? And then asking questions brings a whole additional round of confusion. Is this a good during-class or afterward at the teacher’s desk sort of question? How many questions is it okay to ask during one period. What if you have a really strong point but the teacher doesn’t call on you until the conversation has moved and then it sounds tangenital? What if it takes you awhile to get the question out and by the time you finish the teacher has tuned you out? What if you start talking and then realize the kid behind you was the one actually called on and he’s talking too?
• Grab your books and move on: Once you come to middle school, you’ll probably do this between six and a dozen times a day until you finish your formal education. This has a list of landmines in it. First, that bell that signals classes to change is terribly irritating to your sensitive ears. Moreover, if your watch is not exactly in sync with the office’s clock, the timing of the bell is completely unpredictable, and everyone knows how you react to surprising loud noises. Then you have the issue of leaving your class. If you didn’t finish the sentence you were writing, or have a comment to add to the topic that is being discussed, it is hard to decide whether or not to leave. Then you need to remember all the stuff you have, like glasses, jacket, backpack, books, pencils, pens, and especially the ones you lent out, how do you politely ask to get them back? Then you need to figure out which books you need for your next class and remember if you put your hw in your binder or your homework folder. Not to mention you have to navigate the hallway without running into people, remember your locker combination and have the dexterity to open it smoothly, and then find your way to your next class. And what if someone is sitting in your favorite seat? Or the teacher invited a guest speaker and forgot to tell you and now you need to quickly adjust to the fact that the class is running off schedule and no one prepared you for it.

These are just a few of the issues that the ASD student faces in an average day in the classroom. If you had all these challenges to overcome just to make it through each day, how well do you think you would be performing in school?

An Intro to TIP: a new feature

Monday night I went to watch a panel entitled: Autism and the Family Dynamic. I was told it was to include spectrum teens and their families, but there in fact was no autist on the panel, and most of the parents on the panel had young children. As I listened to the panel members answer questions, I started really wishing they had an autistic panel member up there. Just one person who could offer an ASD point of view. Because although the parents were being sympathetic to the difficulties their children were facing, they could not be empathetic. They never experienced the situation, and they were really as much at a loss to explain things as most of the audience. As I listened, I took mental notes about what I would have said if I were up there. And thus, I bring to you, a new series: Thoughts Inspired by the Panel (TIP). The first TIP post will be tomorrow.