Sensitive To Everything
Friday night Charlie yawned and yawned, and took himself up to bed around 8pm. After an hour, he got up and got dressed and wanted to don his socks and shoes, and so out he and I went for a walk. I'd been hearing about the snow already piling up in D.C.. but, here in north central New Jersey, it felt a bit warmer. The glow of the lights from New York added to a sense of something being a bit uncanny, a bit off. Charlie did not—for the first time in months—fall asleep until almost 11pm.
He woke at his usual time on Saturday and we went for our usual morning ride by his school and when we didn't follow his "that way, that way"and turned not left but right—mind you, we'd been preparing him for that right turn in advance—there was drama of the sort we hadn't seen all week. Later on, when we again didn't go "that way"—the way Charlie was pointing (it happened to be McDonalds and we'd already made a trip there for lunch)—the same, painful, car-rattling response occurred, though for far shorter a time period than in the morning.
In between, Charlie got in four winter walks in the few inches of snow that had come down, three with Jim and two with my parents and me. He was radiant on each of them. We passed a father walking a dog and his 7 or 8 year old son who said words to the effect of "do we have to go as far as the park? let's turn around now! I'm sooooooo cold. I can't, I can't, c'mon, Dad, please, please……," etc.. I reflected on Charlie's being quite impervious to the cold, or at least willing to endure it stoically.
Indeed, Charlie sometimes, and he did do this Saturday, goes to sit in the car and ends up waiting as we're not always (nor do I think we always should) ready to jump in and go off. While Charlie's been putting on his blue parka for the walks without our telling him to, the parka seems strictly to be "for walks," as he otherwise insists only on wearing his blue fleece jacket.
It's such insistence that things must be so, that things be every time so, that seems, more and more, to be the precursor to the above-mentioned drama. It's the trickiest of balances to negotiate, keeping a certain order of things (like driving only on the same routes) to give Charlie a sense of security, and veering from that order not only because (a truism that is true) nothing stays the same. And because, even when we stay within those requests for order as prescribed by Charlie, some sort of cognitive dissonance still gets set off in him. I would say that Jim and me letting Charlie maintain those same requests for order for too long (such as playing the same CD over and over) have been a, if not, the main source of his self-injurious behavior, at least recently. Perhaps Charlie bursts into drama because he realizes, the old order is not working for him and he's just had enough, but doesn't know what to do?
Jim and I started talking about a plan to start driving in as many varied ways as we can. I'm going on taking photos of places where we're at a crossroad and might go "south" rather than "north." Right now, telling about these divergences verbally helps little, if at all, as if the spoken word is too insubstantial a thing for him to peg his anxiety on, at a change to the expected order. Do the words spin and spin round in Charlie's and then he can't take it anymore, and he has to do something—cause such a commotion—-to make it all stop? It also occurs to me that I should have ready written pages (saying, simply, "south" and "north") to show him and for him to touch and hold.
Saturday night Charlie went to be by 8.30pm and stayed there, falling asleep a bit after 9pm. I'm hopeful that this was a sort of 24 hour disturbance, related even to the winter storm and the change in barometric pressure that Charlie seems as sensitized too as he is the direction the car is moving in and, too, to the lightest of sounds. I went into check on him and though his eyes were shut and he was lying very still, he said "good night."
Charlie is, as Jim said to my parents, just sensitive to everything. I am even thinking that, while he hasn't seemed to have terribly strong feelings one way or the other about snow, Charlie might be more bothered than he can express by it, all that cold wettish white stuff impinging on his walks and making the world look very different, covering over the familiar sights he relies on to navigate his way.
We Go With Him by kristina chew 
This is an odd idea, but maybe giving Charlie a picture of an object, as well as a direction “north” or “left”, might help him. Part of the reason that McDonald’s is so comforting is that it has a symbol (the Golden Arches) as well as a name, a place, a result (food).
Maybe giving him a picture of a hand pointing, or a compass needle, will help him to assign a “thingness” to a concept.
How did he do with flashcard work, such as having a card with a word, and then a choice of objects to illustrate it? Did he do any work like that with the recognition of facial-portrayed emotions, “angry,” “happy,” “sad,” “disgusted”,” concepts like that?
I have a student who reminds me very much of Charlie, though autism isn’t one of his (many) diagnoses.
I try to accommodate his (and most of my students’) need for routine and order by keeping the morning routine almost exactly the same (different tasks, but math always follows this, which always follows that) but, quite deliberately, doing something different every afternoon, to teach them that it’s okay for things to be different.
Maybe it might be best to have one or two routes that are predictable (at least now…that can change as Charlie becomes accustomed to change) and one or two that are different? That is, we always go to McDonald’s one way, but we might take a different way to the beach each time? Just an idea. š
I saw on the news last night about the snow, hope it’s not too bad where you are!
The way snow changes the look of everything, and the different kind of light it creates, may well be disturbing to Charlie. It seems to be lasting quite a while too which could be disconcerting.
Dimitri is sometimes confused as to whether we are just talking about something that will or may happen at-some-point, or whether we are talking about something we are going to do immediately. It’s hard to find a balance, we can’t only talk about the here and now, we need to talk about what may happen next or later sometimes, but it gives that kind of inconsistency to words which makes them sort of, untrustworthy.
Photos and maps seem like a good option for Charlie, especially to have examples of particular landmarks, with and without snow.
Hope you have a good and not to cold day today.
I’ve always thought that kids with autism collapse into screaming, writhing lumps of frustration because they can’t explain what they are feeling. Even those of my former students who had more words than Charlie would sometimes lose it completely for seemingly no reason. Things just seemed to be too much for them sometimes and they’d lash out with screaming, wrist–biting and head banging.
When my sons were younger and before they got their driver’s licenses they’d sometimes be very insistent that we take a certain route to get someplace. My daughter doesn’t seem to care as much. Maybe it’s a guy thing?
Even now, when we’re al together and my husband is driving my sons will argue that such and such a route is better and faster. They can get really strident about it, as if it matters.
Maybe Charlie has pervasive anxiety? He may feel unsafe unless things are always done a certain way. I know that’s the accepted belief about autism but I wonder why that is? Why should some people be bored by doing things the same way all the time (like my sons) and why are others (like Charlie) soothed and reassured by a dependable routine?
@Louise,
Pictures of destinations sound good and we’ve tried that a bit before—and then sometimes still Charlie would get upset, due to this other issue of us not driving exactly a he wanted us to!
There are a lot of flashcards to teach emotions for use with autistic children. Very mixed results with those—often the therapists and I just got into long discussions about how various photos looked like anything but what they were supposed to convey! I find it seems a bit more effective to write out the words for Charlie.
Regarding simple black and white and line drawings: Charlie has a lot of trouble identifying what these are. I’m not sure a drawing of a hand looks like a hand to him. Also, when he points, he doesn’t always actually point in the actual direction (or what seems like the actual direction) to us, but in a fairly general area.
@Jennifer,
I like your approach! Charlie does do different things on different days at school—-art, music, swimming, grocery, library—on different days, though (usually) on the same days of the week. I “shook things up” this morning and so far it’s been a peaceful day—also helps that the sun is shining!
@Emma,
Charlie also has a lot of trouble distinguishing between when we’re talking about present things and things in the future or past. I try to think of really concrete ways to express these — and I’m not at all certain about how he understands expressions of time and units of time. He’s heard things like “5 more minutes” and “later” forever, but those expressions can be somewhat aversive, as they’ve been overused.
I like the idea of a map, though not sure how Charlie would grasp it. But maybe we could get him one, show him things, and he’d gradually understand it?
@Jill,
My husband is the reverse—always likes to try new routes and drive around here and there! I used to insist on only driving certain routes but having lived here for some time, and having had to drive Charlie all over New Jersey for doctors and therapy, and also having to find shorter routes to get home, I’m a lot more flexible!
Charlie definitely has some kind of anxiety. I’ve thought that’s why he gets stuck in these OCD patterns and routines, as they (originally) help him allay the anxiety. But they eventually stop working for him, or don’t work as well, or he starts to get anxious about having the routine itself—I think I’ve just got an inkling of what’s been going on while writing this comment……..
I’m sorry it was a challenging time for Charlie. It sounds like he recovered quickly though. That’s a good thing.
Loved your last comment about getting an inkling as you were writing…good stuff! Can’t wait to see where it takes you.
I’m sorry it was a challenging time for Charlie. It sounds like he recovered quickly though. That’s a good thing.
Loved your last comment about getting an inkling as you were writing…good stuff! Can’t wait to see where it takes you.
Kristina, it does sound like Charlie finds comfort in rituals – they are like talismans against anxiety or losing control of a subject. But what happens when the ritual doesn’t work, for some reason? Then it becomes an object of anxiety in itself: “Will it work this time, or not?”
How psychologically flexible is Charlie?
I know you don;t have television, but will you get a chance to see the HBO movie about Grandin? I’ve read her books, and this film did a very good job of conveying her thought processes. Ultimately, it leaves me with more questions about how attention and language function for people “on the spectrum.”
“mind you, we’d been preparing him for that right turn in advance”
“We passed a father walking a dog and his 7 or 8 year old son who said words to the effect of “do we have to go as far as the park? let’s turn around now! I’m sooooooo cold. I can’t, I can’t, c’mon, Dad, please, please……,” etc.. I reflected on Charlie’s being quite impervious to the cold, or at least willing to endure it stoically.”
Somehow I’ve been looking at those two sentences/paragraphs for a long time.
I was wondering about the form of the preparation and if you have any sense about how successful that is in general? Is there another form of preparation that might be more successful or worth trying? I have tons of other questions. When my daughter had difficulties, I tried to put myself in the shoes of someone who might just not know what we were doing, may not have known whether that was going to be enjoyable to me or not, may not have had a sense of an ending point, or what comes next. How would that feel?
I also thought about that little boy begging his dad. I’ve had my fair share of receiving that from my older daughter and my various nieces and nephews…annoying, but a kid’s perogative which they eventually get over with guidance. I was thinking about what if you didn’t have access to that ability to have the give and take on those conversations?
So mostly musings and no advice.
And just to corroborate, something you said about those emotions cards – while somewhat helpful to teach the appearance of them, as far as the feeling – not very useful, although I guess you could pair them in the appropriate situation.
Take care and keep warm. I hope you have a good day.
One of my Silicon Valley cousins should be sending us a DVD of the Temple Grandin movie………
Charlie’s flexibility is much greater than might seem apparent, but he needs a lot of time and no pushing.
@Regina, our preparation on Saturday was, I guess you could say, the ‘old preparation’ that has now clearly become ‘out of date.’ In general, as time has passed, I find verbal expressions and communications have not been as successful helping Charlie, and have rather, at times, led to him getting more upset. But those times remain when you just want to do something, even if it’s the wrong thing—and sometimes it can be very wrong.
Le sigh, oh yes.
Charlie’s flexibility is much greater than might seem apparent, but he needs a lot of time and no pushing.
@Regina, our preparation on Saturday was, I guess you could say, the ‘old preparation’ that has now clearly become ‘out of date.’ In general, as time has passed, I find verbal expressions and communications have not been as successful helping Charlie, and have rather, at times, led to him getting more upset. But those times remain when you just want to do something, even if it’s the wrong thing—and sometimes it can be very wrong.
Le sigh, oh yes.