Showing posts with label mischief. Show all posts
Showing posts with label mischief. Show all posts

Wednesday, July 2, 2014

Autism Diaries: where are your "twos"?

They're gone. Suddenly and completely. Just as it is sometimes with a suddenly shaved-off mustache, we didn't notice it right away. But something was different--calmer, quieter--and, looking back a few days after the change, we realized it dated to the day he turned 18.

J has been obsessed with the number two ever since we moved into a house with two staircases and had the rickety back staircase removed. The brief excitement of two staircases, with all the options for farcical, running-around-the-house mischief they afforded, was over. A fixation on which houses in our old Victorian neighborhood still had two staircases turned into repeated questioning about "how many staircases does x's house have?" (where x = anyone who lives in a house with two staircases), which, as we tried to minimize how much this question disrupted other conversations in progress, we generally answered, quietly, by signing the number two:


This "two" eventually turned into a floating signifier which J no longer solicited via staircase questions, but simply by requesting it outright: "Sign 'two'" or "Give me your twos." Or, as a work-around for the quotas we imposed, "Sign 'V'" (signed "V" being an ASL homonym for signed "two"). Or, when he eventually realized there was yet another homonym, "Sign 'peace.'" Seemingly morphing into J's inshaAlla, it became his routine sign-off on text and email messages: "I'm about to shower. Sign two." Except, of course, when he was pretending to be someone else.

For he long knew that "twos" made him different, and, in particularly that they could compromise his ability to get through a job interview and not get fired. Accordingly, he gradually managed to narrow the people whose twos he requested down to myself and his father. But we never expected them to go away entirely.

But gone they were, starting, as it turned out, on the day he turned 18. It was as if he'd made a quiet resolution some time ago about growing up--a resolution about which, for fear of causing a relapse, we didn't dare query him. But one month has passed, and the twos are still gone. So it now seems safe, if not to query J, at least to write about them here.

It's a milestone moment in two ways: both the end of a ten-year obsession, and the clearest indication of how much self-control he's gained in these final months of his childhood. There's even a bit of sadness: in a weird way, I'm missing those twos and the eccentricity they signified. More practically speaking, I'm missing what had been a handy negotiating tool--"Ok, then no twos for one week"--though I realize that seeking out more internal motivations is a good development for all of us.

Not that the obsessions are completely over. A new one appears to be coming out of the woodwork, but I'm guessing that he has a bit more company here:


"...if you pay me ten dollars!" It looks like we have new negotiating tool.

And then there's that other obsession: the one that has him forever starting conversations with guests at parties and staff members at restaurants and other establishments. The one that keeps him talking and socializing and scheming when there's nothing else obvious to talk or socialize or scheme about. Dating back as it does to when he was three months old and first able to express volition, it will, I'm quite confident, never go away:


Nor am I sure I want it to.

Sunday, January 19, 2014

Autism Diaries: Editing Cracker Barrel

It's not very often that I have an urge to edit Wikipedia. But every once in a while an article I assign for one of my classes contains minor errors or omissions that I'm tempted to fix. So, thinking things may be different this time, I push the "edit" button.

And once again, things aren't different, because I once again get the following message:

You are currently unable to edit Wikipedia.

You are still able to view pages, but you are not currently able to edit, move, or create them.
Editing from XX.XX.XX has been blocked (disabled) by Elockid for the following reason(s):
Wikipedia Checkuser.svg
CheckUser evidence has determined that this IP address or network has been used (not necessarily by you) to disrupt Wikipedia. It has been blocked from editing to prevent further abuse.
Once again, it would seem that a member of our household who is a bit more eager to edit Wikipedia than I am has gotten our IP address blacklisted. Hmm, who could that be?

"Why did we get blocked again?" I ask J. After the delete key episode, when we'd been banned for 6 months, wasn't he tired of not being able to ad important information about ceiling fans to all possibly relevant Wikipedia entries?

As it turned out, the problem this problem time was precisely J's zeal for adding fan information. He had gotten into, as he put it, "an edit war" with one of Wikipedia's senior editors--and the battlefield was none other than the Cracker Barrel entry.

The problem was that J kept adding helpful information about the fact that Cracker Barrels have ceilings fans, and the editor kept deleting it, telling him that it was irrelevant, and warning him not to put it back. And J, or so he told me, kept telling his editor that "Cracker Barrels do have ceiling fans; if you don't believe me, visit a Cracker Barrel and see for yourself!"

The Wikipedia editor, as you can see for yourself if you visit the Cracker Barrel entry, won the battle: there's not one reference to "ceiling fans" there.

But in the real world of the Old Country Store, Inc franchise, the truth is out there, in abundance. It's blowing the air around and making certain customers very happy: all you have to do is look up.

Sunday, December 8, 2013

Autism Diaries: the value of extrinsic rewards

J has recently come home with his best report card ever: all As and Bs; more As than Bs. Now a high school junior, he has finally made the honor roll.

These grade improvements are partly a function of J's particular course roster. This semester he happens to have only one language-intensive class. Physics, AB Calculus, and Java programming all come naturally to him, and he loses points mainly when he leaves out verbal explanations, which, mercifully, are only required in physics, and only for lab reports. He's also shining (nay, sweating!) in PE class, and doing fine in Health--where I've opted him out of sex ed in an attempt to keep that particular can of mischievous worms as tightly sealed as possible--for as long as possible.

Also fostering J's grade improvements is a better-than-ever communication between home and school, with teachers who respond immediately to email and an online SchoolNet system that lets me see weekly assignments and grade reports. There must be thousands upon thousands of autism parents whose frustrations are eased, and whose children's performances in school are improving, as schools put these systems in place. Indeed, as I write this I realize that, for all my criticisms of technology in the classroom, this particular deployment is an unequivocal boon--for everyone, really.

But a third factor behind J's grade improvements are the extrinsic rewards I now give him based on what I learn from these weekly SchoolNet reports. In order to earn a new ceiling fan visit, or a dollar, or an extra sign language signing of the number two (his favorite number), he has to have an A average in his three best academic subjects. As a result, the responsibility he's shown for writing down his assignments, doing them thoroughly, and remembering to turn them in has increased substantially.

Of course, J's capacity for responsibility has also grown along with his growing maturity. And when the goal is something more important to him than good grades, he doesn't need extrinsic rewards.  I recently walked into the kitchen to find him standing over a systematically laid out row of ingredients, the cookbook open to a recipe for ginger bread cookies. I endorsed his project (though he hadn't asked my permission), and left the kitchen confident that he could assemble the mixer and follow the recipe. When I returned, he had balled up the dough and was putting it in the refrigerator to chill. (He was less motivated to clean up his mess).

Two days ago, a package arrived in the mail which he eagerly grabbed from my hands, anticipating correctly what it contained. Apparently his battery recharger had stopped working ahead of its warranty, and here was the replacement. He showed me the receipt that accompanied it, which indicated no new charges, and explained that he'd filled out a replacement form online, complete with the requisite information about the unexpired warranty.

It's wonderful to see this wild child of mine becoming so responsible. But, like so many teenagers, he only looks so far into the future. And, though I've heard many armchair experts tell parents and teachers that extrinsic rewards are bad, I suspect that the incentives I give J to earn good grades do more than increase the prospects of his future, more responsible self. Those incentives also, I suspect, help J acquire habits that help him become that more responsible self, as he gradually internalizes the best of his fans-twos-and-dollars-driven behaviors.

Wednesday, September 18, 2013

The "normal" child inside, III

The miracle child who stars in popular accounts of autism has several unfortunate effects on autism families. One, his/her "story" raises false hopes. Two, it may lend credence to expensive and time-consuming but ultimately futile "remedies." Three, to the extent that the child claims to be speaking for all autistic kids, bearing witness to "what goes on inside our minds," and telling everyone "what we really want," s/he may be spreading misinformation about what autism "really is"--and further compromising decisions about optimal treatments.

Four, s/he delays our acceptance of who our own child really is. And five, his/her miraculous emergence and/or recovery diminishes our appreciation for the smaller miracles that our own children may sometimes exhibit: that moment of extended eye contact; that first expression of curiosity; that first one or two-word utterance; that revelation of unexpected ability.

The actual miracles of truly autistic children range from small social breakthroughs of the sort that parents of typical kids take for granted at much younger ages, to unusual non-social skills like multi-digit mental arithmetic and photographic memory.

For me personally, the actual miracles of J's that have impressed me the most involve him using his manipulative mind to compensate for his social deficits. Never is this more apparent than when he impersonates someone on his iPhone.

When he's not impersonating anyone, then even those who don't yet recognize his phone number can almost always tell it's him. This is because he quickly lapses into naughty words, questions about ceiling fans, or requests for people to make the hand sign for his favorite number ("Sign 2!").

But when he is impersonating someone, generally his father, he's been trying with growing success to pass as normal. Here's his recent exchange with F, one of the people whose ceiling fans he's hoping to get on film. He's pretending to be D, his father, and, as is apparent below, he had F fooled until the very end--despite the occasional grammar mistake.

J: J and H [J's sister] wants to come to your house. Obviously, it would only work on weekends because of school days. Any available dates? --D 
F: We don't have any plans to go away until October (Columbus Day weekend I think) 
J: That's good. How about Sept 7-8? 
F: I have a training sat morning. I'll check w/ C and get back to u ASAP. U. How are you guys? Kids started school yesterday but E missed today and will miss tomorrow due to throwing up... 
J: Any weekend in Sept is fine. [sic!] 
F: Ok. I'll come up w/ a date 
J: Sign 2
J: Sorry, that was J on my phone saying to sign 2.
J: By the way, H had been eating lots of tomatoes lately*, so just keep an eye on your tomatoes when she comes. 
F: Hmm. Are you calling me from a new phone? I have a different # for you. 2 phones? You calling me from J's new phone? Oh, and we always have tomatoes on hand :) 
J: J doesn't really have a phone yet. 
F: Didn't he get one for his birthday? 
J: He just got a broken phone so he can pretend he has a phone. 
F: Ah. 
J: Sorry, J was on my other phone. Don't believe him whatever he said on my other phone.
Unlike Carly Fleischmann, he'll never get on 20-20 for this. But those who know him well were pretty darn enchanted.
______________________
*J is always looking for opportunities to slander his sister with claims that actually describe him rather than her.

Tuesday, August 27, 2013

Autism Diaries: the eccentric child inside

When it comes to autism, there is no normal child locked inside. Instead, there may be a highly interesting child in there; much more interesting than you can possibly imagine until you start turning the locks.

This, of course, is especially true of children who are minimally verbal. After all, it is the phrases people speak that most clearly reveal the thoughts they think. Plus, when it comes to the more complex thoughts, like thinking about what other people are thinking, it is only by acquiring the more complex linguistic structures, like sentences embedded inside of sentences, that people are able to have these thoughts in the first place.

Unlocking a highly autistic child, then, doesn't entail Bettelheimian psychoanalysis; or chelation therapy; or gluten-free diets; or horseback riding and swimming with dolphins. Except for children with severe speech apraxia, it does not even entail alternative communication devices. Instead, it entails intensive instruction in language--instruction that is intensive and systematic enough to make for what the child hasn't picked up, as other children do, through normal social immersion.

Intensive instruction in language, particularly in grammar, is what has unlocked J. It is what's enabled me, most recently, to ascertain his thoughts on genetic engineering.

"Do you think some day people will be able to fix bad genes?" he asked me, recently, as we walked through a wildlife refuge along the Jersey shore.

"That's already possible. And some day, people will be able to genetically engineer things like deafness." I pause. But J has asked me so many annoying, repetitive questions that I hesitate only a moment. "If your deafness could be genetically engineered away, would you choose for that to happen?"

He answers immediately. "Yes."

I pause again. "What about if people could genetically engineer away your autism?"

He pauses. Is he going to ignore the question and change the subject back to ceiling fans?

He speaks. "I would be worried that my personality would change. I would be worried that I would lose my memories."

I pause. "What if it only changed a small part of you? What if it only changed the part of you that asks annoying questions and bothers people?"

He doesn't pause. "I would be worried that it would be a sudden change."

"What if it's gradual?"

"I would be worried that some good stuff would change along with the bad stuff. Like when people destroy an old building. Do they take all the good stuff out of the building before they destroy it?"

"What if you know that only the bad stuff will be engineered away?"

"What if that's not possible?"

Autism, according to one theory, involves an "absent self"--a deep inability to introspect. But perhaps this only describes those who remain unlocked. How many neurotypical 17-year-olds can so quickly identify the two most fundamental aspects of selfhood, and of self-preservation: persistence of memory and gradualness of change? Or the entanglement, within the self and within condemned buildings, of the good with the bad?

Tuesday, August 13, 2013

Autism Diaries: By the way, this is D, Katharine's husband

During his summer down time, J’s been keeping busy with his iPhone. Besides playing chess, editing Wikipedia, and surfing the web, he’s recommenced his impersonations. Generally he impersonates either me or D, his father, and what motivates him aren’t just the thrills of deception, but also things like weaseling out of spending time on his summer homework with his tutor, or getting various people tell him about their ceiling fans or deceased loved ones.

Three mornings in a row I’ve received messages from friends forwarding me suspicious text messages. For example, to E, his tutor:

Hi, this is Katharine. My phone battery is dead so I’m using J’s phone. I just want to take J to Valley Green today so I’ll see you tomorrow. 
Or to P, whose father just died:
I’m very sorry to hear about your father. Is his body buried? By the way, this is D, Katharine’s husband.  
I also received this message from S, and old friend from college:
Hi K + D, I’ve been getting some cryptic phone messages and texts lately, and a couple of days ago, I had an h-ha moment. J! Lo and behold, is was. No harm done. Some of the follow-up texts have purported to be from D, but I have a feeling they also may have been from J.
Perhaps all this can be challenged into a remunerative career in hacking. Or, better yet—I’m thinking of back when J changed his email alias to “Mailer Daemon,”--in spamming.

Indeed, another of J’s natural talents is the equivalent of spam-filter foiling. When we told him to stop texting the s-word, his response was:
$h!+

Tuesday, July 9, 2013

Autism Diaries: Hell is other people, II

J's just had two big moments celebrating the new heights of maturity to which he occasionally ascends. One was getting an iPhone for his 17th birthday--whereupon he let off a scream of joy the like of which I'd never heard him make. The other was riding public transportation to school all by himself on his last day of 10th grade, equipped with that very same iPhone.

Later that day, thankfully safe and sound at home, he reported that after he switched from the Blue Line to the Orange Line he figured out from the empty platform that he'd just missed the Northbound local, and so immediately crossed over to adjacent platform from which he took the next Northbound express to the stop where he knew it would have caught up with his usual train. Who'd have thunk that the relentlessly inattentive and out-of-control toddler we could barely handle in public in the late 1990s could have turned into such a resourceful and self-possessed teenager by the early 2010s?

But there's a rub. I'm nowhere near ready to let him go to school by himself on a regular basis. This isn't because I don't trust him; it's because I don't trust others.

I've said before that often the hardest thing about having an autistic child isn't the child him or herself, but how other people react. As many families with autism can attest, these others can include friends and members of the extended family who stop inviting you over because they don't want to risk having your autistic child in their house, or who resist making relatively small accommodations that might substantially ease the stress of family reunions and holiday gatherings.

But, on a much more regular basis, "hell is other people" is about perfect strangers. The people who stare or mutter amongst themselves. The people who react histrionically whenever your child bumps against them or charges past them or cuts them off or passes gas or makes weird noises or says something socially inappropriate. The people who zealously scold you or your child even when he's clearly manifesting as "different," and even after you explain he's autistic.

These people, like everyone else, surely talk the talk about how important it is to fully include and show kindness towards people with disabilities. But they would prefer that we families of autism keep our difficult children far away from their personal spaces.

My preferences are different. What I prefer to do is to react histrionically in return--at the same time that I make it a "teachable moment" for J.

"Look at all those people staring at you," I'll say, using lots of expression and making sure everyone concerned can hear me. "You were so loud that they've all turned around to look at you." Or: "Look how angry you made that woman. You need to be really careful not to accidentally touch people. They get really angry when you do that." My words are very much for his benefit: he needs to learn. But so do others.

Sometimes I'm more direct. The other day at the science museum I heard someone scolding him as he exited the Giant Heart.

"You can't cut in front of people like that," she was yelling.

"You shouldn't hold hands and block the way if you're going to walk slowly," J retorted before starting to bolt.

"I'm sorry, he's autistic," I explained. "Let me make him apologize." I grabbed him, steered him back, and made him say he was sorry.

"You shouldn't hold hands if you're going to walk slowly."

"No, say you're sorry."

"I'm sorry."

"Never mind," she kept saying.

But my position was, if you're going to make a big public deal of my son's behavior, I'm going to show up and make a big public deal of an apology. You can't just yell at my son and then march off on a self-righteous high.

The most hellish sort of other person, however, isn't the merely insensitive or intolerant or self-righteous, but the bully who preys on weirdness. And it's that kind of person who makes me not want J go to school by himself on a regular basis. Even though now he rarely even grazes people and only occasionally charges past them, he walks funny, he squirms funny, his posture is often funny. He radiates weirdness. In the eyes of certain types of people--particularly his same-aged peers--he has "kick me" written all over him. Given enough time, one of those groups of school kids who congregate on narrow train platform will notice that he's regularly unaccompanied. And I shudder to think of what they might collectively rally up the gall to do to him--even if he behaves himself perfectly.

Saturday, June 15, 2013

Autism Diaries XLIX: Animal ethics

"Take a look at this message I just got from your teacher: 'J was seen by other students today hitting a pigeon with his umbrella. He thinks this is a game. He calls it the pigeon hitting game. Is this new?'"
"I was bored. There was no ball or anything else to play with. So I played the pigeon hitting game."
"It's not a game. Pigeons feel pain. It's not OK to cause pain."
"But pigeons aren't people."
"That doesn't matter. They still feel pain, and it's not OK to cause pain."
"What about killing mosquitos?"
"Well, they bother us."
 "Birds bother us by pooping on us."
"Only rarely. And mosquitos die instantly when we kill them."
"Remember earlier when I killed a mouse by throwing the mat on it and stomping on it?"
"Yes. You did that twice."
No, J's no Temple Grandin. But, bugs and mice aside, he almost always avoids animals rather than bothering them. He's never so much as touched our cat.

On the other hand, he knows that he and the cat have one thing in common. And when it's the cat who kills the mouse, J's the one I ask to pick up the corpse and flush it down the toilet.

Sunday, May 12, 2013

Autism Diaries XLVIII: Proud parenting moments

In honor of Mother's Day, it seems fitting to share some of my more memorable autism parenting moments--moments when I said or did things I once thought I'd never do or say to any child of mine. Namely:

1. Shamelessly manipulating my child through outright lies.

At one point, for example, just after an ill-fated trial with Ritalin, J acquired the disturbing tick of periodically licking his palms. Lick the right one, then lick the left one, then do a couple of hand flaps. He'd never had a tick before and, except for definitively ruling out further medication, we were at our wits end.

But then it occurred to me to tell him about a paralyzing disease, called polio, that lurks on the surfaces around him and that he could pick up by licking his exposed skin. It took just a few reminders and he stopped. I didn't even need to show him pictures of people in iron lungs.

2. Revenge fantasies.

Back in the Terrible Twos, which extended nonstop into the Terrible Fives or even the Terrible Sixes (it's hard to remember now when the trashing of rooms, the puncturing of air mattresses and bicycle inner tubes, the booby traps, the adulterated food, the pushing and grabbing and eye-poking of family members and classmates, and the constant running off into stores, crowds of people, and busy streets [looking over his shoulder with a grin and a glint in the eye], finally abated), I used to sit awake and night, listening to J's maniacal laughter in the bedroom above me as he reminisced about the day's malicious escapades, and dream up what it would take to not only quell the mischief, but also exact revenge.

How could I force him into the kind of Time Out that normal kids somehow consent to? (Bring in his car seat and strap him into it say, in front of an American Sign Language video tape... or down in the dark basement?).

How could we buy ourselves just a tiny bit of the rest and relaxation that the parents around us could take for granted at certain times and places--say at the neighborhood swimming pool? (Stop him from running at top speed, nonstop, around the edge of the pool, vexing the life guards and parents of unsteady toddlers and us as we chased after him, by inserting him into an inner tube and pushing him out into the middle of the pool--exploiting the fact that he didn't yet know how to swim or paddle?).

How could I instill in him a regret that would substitute for the guilt he was proving to be completely incapable of feeling? (Make him use the air mattress he'd permanently deflated with a sewing pin? Take away his cookie and give it to his pushed, grabbed and/or eye-poked brother to eat in front of him?).

3. Making fun of my child's handicap.

This--my most memorial moment of all--occurred after a 3 1/2 hour Ferry Ride from Bar Harbor to Nova Scotia in the wake of Hurricane Bill, when huge swells caused nearly the entire boat to get sick--except for J. He kept asking his green-faced Daddy for money to buy snacks from green-faced clerk at the snack bar, and, eventually, had to go to the bathroom to relieve himself of all the green lemonade he'd consumed.

It was there that he started to notice that people were getting sick--and, naturally, started chuckling at all the "throw uppers." Only after it was all over did it occur to him to ask why so many people fell ill and why he was spared. I explained that the same thing that made him deaf--the absence of hair cells in his inner ears--also kept him from getting those out-of-balance signals that sometimes cause motion sickness.

It was hard to say which revelation delighted him more: that he had a special advantage, or that everyone else in the ferry had suffered--particularly his parents and siblings.

"Ha ha ha, you threw up!" became his joyous refrain.

After a few iterations of this, I thought of the perfect retort--though I'm not sure I would have called it out if all the car windows hadn't been tightly closed up or if there had been anyone outside the immediate family in the car.

"Ha ha ha, you are deaf!"

I must add that I hastily followed this up with: "Which do you prefer: to be hearing but sometimes get motion sickness, or to be deaf and never get motion sickness?"

His response, immediate and enthusiastic, did not surprise me.

Tuesday, March 26, 2013

Autism Diaries XLVI: Aligning self-interest

There are two things that have made J much easier over the years than the tantrumming, eloping, non-stop mischief-making child he once was. One is the ever greater impulse control that has come, mercifully, with his maturing brain. The other is that his self-interest is increasingly aligned with ours. At long last, he's realized that the adults around him have his best interests at heart. At long last, he sees that it pays off to behave well and do his homework.

Like many teenage boys, he still resists bucking down and getting things done, particularly in subjects he doesn't like. Even in preferred subjects like math and chemistry, he can be overconfident and decide not to study, or fail to read (or understand) the directions. And when he performs poorly, he prefers to throw out his work and pretend that nothing happened rather than to let us know and seek help.

But lately I've been seeing things I never thought I'd see. For example, J, after just one request from me, going to his backpack, getting out what he needs, sitting down at the dining room table, and completing an assignment--on his own. Or this in-class assignment for English class that he appears also to have completed independently:

The things that get people to change is when they learn something new, new things get invented, or when there are new things happening. For example, when the printing press was invented, people don't have to keep writing the book over and over again.
When the train was invented, people get from one place to another faster. Because horses don't go fast enough, and sometimes need some rest. And when the airplane was invented, people can just go from 1 country to another in hours.
When I move from 1 house to another, I started going somewhere near my house instead of my old house, and started going to a closer store. And I started going to the park near my house.
I used to climb on the chair to change the speeds or fix a wrong direction of ceiling fans in houses. But when I started growing taller, I don't have to stand on chairs nearly as much to change the speeds or fix a wrong direction.
When I learned about the wii, and first play wii in someone else's house, I started making money to try to get a wii. I still don't have enough money to buy a wii, and I really want to buy a wii. I need $200 dollars now.
I discovered this assignment at the bottom of his backpack, all crumpled up. He got a 75 on it and probably intended to throw it away. I'm glad he didn't. Though I'm not sure what the prompt was, this is one of the most extended, sincere "reflections" J's ever written. Mixed in, of course, are some falsehoods--but only a couple of them this time.

Sunday, March 24, 2013

Autism Diaries XLV: J on the virtues of groups--in criminal justice

So J and I were sitting in the kitchen the other day, discussing one of his favorite topics: crimes and punishments. We discussed burglary, booby traps, impersonations, disturbing the peace, and all their various legal consequences. When he cited 13 (his favorite unlucky number) as the number of people on a jury, I noted that only 12 make the actual decision. Thinking about this group of 12, he suddenly said "Are animals smarter than germs?"

"What do you mean?"

"Are many cells smarter than one cell?" 

Oh, ok. He's proposing that single cell bacteria are less intelligent than multi-cellular animals, and then connecting this to the intelligence of a single juror vs. a group of 12.

It's sort of a variation on the wisdom of crowds--a popular meme that J, who rarely reads or listens, has apparently come up with totally on his own. Who'd have thunk that a child on the spectrum would appreciate the virtues of group think--even in the best sense of the term?

For there are some virtues in this kind of collaboration. I know: I've served on a jury. And I still remember how relieved I was that I didn't have to decide that really bizarre case all by myself.

It occurs to me that jury deliberations are perhaps as close as you get to K12 group work in real adult life. They're a heterogeneous cross section of people, not grouped together by choice; their activity is unstructured, open-ended, and unsupervised; they are theoretically egalitarian (though certain personalities dominate); and all the work occurs in the group setting--no divvying up according to skill and going your separate ways.

But the thing is, juries have been around for many long centuries--way longer than K12 groups. And as to whether today's classroom groups will improve tomorrow's juries, that particular jury is still out.

Wednesday, January 23, 2013

Autism Diaries XLIII: the fan of fans

J especially enjoyed this year's New Year's parties, making himself the life of the party by interviewing everyone present about their ceiling fans. If he dicovered someone whose fans he hadn't yet immemorialized via digital camera, he'd try to set up a visit. If the person happened to live a house or two down from the party, he'd request an immediate film date. So during a lull at one party J and I, along with Jim, headed over to Jim's house to get some ceiling fan footage. Parties for J, in otherwords, represent present and future opportunities to augment an already vast video library of fans spinning at slow, medium, fast, and reverse.

But what if it turns out that one of your prospective hosts has high ceilings, no chains on their fans, and has misplaced the remote controls?

A week into the new year I came home to a very polite answering machine message from a lady at Home Depot for Mr. ___. Hmm, what is this "spare part" my husband has "inquired about," I wondered.

It didn't take too long to figure out what was really going on, especially later on that day when my friend K forwarded me a message she'd received from J.

(In case you're wondering why J has K's email address, it's because one day I accidently left my gmail open and unattended long enough for J to set up automatic forwarding to his account of all my incoming messages. I discovered this only after he accidentally replied to one of those messages: one from Daddy about taking him to the Eastern State Penitentiary on Halloween. His response when I called him on it: "Don't worry--I only looked at some of your messages.")

Here's J's message to K, with appropriate redactions:

I contacted Home Depot about getting a new remote for your dining room ceiling fan, and he said it was $16 including shipping.

---------- Forwarded message ----------
From: <___ homedepot.com="">
Date: 9 January 2013 10:17
Subject: Replacement remote ceiling fan / Reference # ______
To: ___@gmail.com

Mr. ___,

I was following up with you concerning your inquiry for a replacement remote. I checked with our parts department and the replacement remote is available for $16.00 including shipping. Please contact me directly at _____ if you would like to order the remote. Thanks in advance.

__________

Resolution Expediter- Proprietary Brands

The Home Depot – Store Support Center

Customers FIRST!
J was delighted when I alluded to his message to K. "How did you find out?!" he shrieked, knowing full well the answer. "How did you find out which remote is compatible?" I asked back. It turned out he'd done a fair amount of research, including some preliminary back and forth with K.

"When do you think they will get the new remote?" he asked me.

"What makes you think they care about getting a new remote? They've been happy without one for many years."

"But it's only 16 dollars."

"Then why don't you buy it for them as a present?"

And so he did. He gave me some bills from his bedroom stash and had me call up the number in the email message. Every afternoon after I placed the order, he was ready to pounce on the mail the moment it went through the slot. When the package arrived, he tore it open, wrapped it up with Christmas paper, and wrote up a New Year's card: "I meant to give this present to you on New Year's Day but it arrived late."

He's currently giving K some time to set up the remote, and then he'll be back on her case for a film date asap.

Sunday, December 16, 2012

Autism Diaries XLII: busted, teased, and beloved

This year's first marking period has ended, and I've enjoyed yet another uplifting series of parent-teacher conferences at J's school.

This school continues to be a bunch of firsts for us. It's the first school that has welcomed J in rather than freaked out about having him. It's the first school that is considered, by all parties concerned, to be the best possible school for J--despite the fact that he's by far the most atypical student they have (and perhaps have ever had). It's the first school where he's managed to get through the day--for weeks now--without any behavior problems and without any one-on-one services. And it's the first school where teachers really get him without me having to keep explaining to them how his mind works (and arguing that I'm not just a deluded parent, but that my son really is smart in certain ways). They appreciate his strengths along with his weaknesses, and, perhaps most startling of all, are able to laugh along with me at his occasional foibles. 

At the last parent-teacher conference, his fantastic algebra/precalc teacher told me about how she'd recently caught on to a cheating strategy he'd devised for ensuring perfect scores on the "weekly warmups." He'd turn his paper in along with everyone else. Then they'd go over the problems. And if he noticed at that point that he had, say, forgotten to distribute a negative factor across an expression, he'd wait until the end of class, and then tell Ms. H that he'd forgotten to put his name on his warmup sheet. With her permission he'd fish out his sheet and "put his name" on it.

After a few such incidents, Ms. H made a point of noticing whether J's name might just possibly already be right there on his sheet when he turned it in. It was. When he told her later that he'd forgotten his name, she called him on it. At that point one of his classmates called out what has become J's favorite new word: "Busted!" Not only did Ms. H call him on it, she did exactly what I would have done next: both threatened him with a bad consequence next time (a zero), and spent some time teasing him about how she'd caught him. (Highly amused by the concept well before he learned its label, J's always been surprisingly good natured when "busted"-- so much so that he practically invites extensive teasing).

Ms. H and I had a good laugh over this, as I did later with the special ed teacher, and, later on at home, with J. And I was struck by a single Big First that sums up all these others: this is the first school J's attended where I've felt like we're all (even J) not only on the same page, but on the same side.

Monday, November 12, 2012

Autism Diaries, XLI: the test

Thanks to the efficiency with which the dysfunctional network of state agencies responsible for supplying services to special needs children summarily dropped the ball on us and thousands of other Pennsylvania families over the past year, J has been attending classes without the 1:1 support that he had received ever since he was 3. It’s now been four weeks sans support, and we’re keeping our fingers crossed.

As soon as I learned that this was about to happen, I tried to milk it for what it was worth. “J,” I said, “Your behavior has been very, very good this year. Better than ever. And so we’re going to test you. We’re going to see how you do without any tss.”

Instantly his eyes lit up and a beautiful smile spread across his glowing face. He was not just flattered, but utterly delighted. For several years now he’d been hoping to rid himself of what, to him, was an increasingly irritating interference in both his autonomy and in his attempt to be just like all the rest of his classmates.

The “test” began, and he’s been playing the role of “normal” student well—astoundingly well, given how mischievous and out of control he was in his early years, with absolutely no sense of classroom rules or teacher authority. Now he follows his roster, walks calmly down the hallway, stays in his seat, and copies down things from the blackboard. He participates in class—particularly in math, where he knows the answer, or in chemistry, where he’s extremely curious about where things come from and how they work.

As the school’s special ed specialist puts it, he’s become very good at acting like a student. But his greatest weaknesses persist: language comprehension and tuning in to speech (the two, of course, are related). He takes notes without attending to meaning, once transcribing “region” as “religion.” He faces the teacher without taking in much of what he or she says (or of what his classmates contribute in response). Without an aide to prompt him to focus, his grades are starting to drop.

Luckily all the key stakeholders—except, of course, for J—are all on the same page. We agree that what he needs is no longer behavioral support, but a school district-supplied academic aide. Where the state of Pennsylvania has let us down, the school district of Philadelphia, cash-strapped though it is, must pick up the slack—as J’s new IEP now requires.

At the IEP meeting I heard various confirmations of how J’s behavior has improved. Just a couple of years ago a major disruption meant throwing a tantrum that rung through the whole building, or menacing a classmate by raising a chair over his head, or eloping to the teacher’s lounge to grab the chocolate syrup from the refrigerator and “chocolate his way back to his seat”; now it means excitedly getting out of his seat to “correct” his chemistry teacher when the teacher pretends to be about to make an egregious mistake in setting up an experiment.

How long it will take the cash-strapped School District of Philadelphia to get J an academic aide is one question. Another is how best to spin it to J. I tossed out one idea at the IEP meeting. J has been—through no encouragement whatsoever from us—increasingly interested in getting his learner’s permit. Taking advantage of his overall cluelessness (another function of not paying attention), we’ve told him that you can’t get a learner’s permit until you get straight A’s in all subjects but English, and at least B in English (even that would be a real stretch for J.)

So how about if I tell J that because his grades are dropping, he needs an academic aide in order to help him, so that he will have a better chance of getting his learner’s permit? The special ed specialist thought this was a great idea. But, remembering how just half a year ago he was still charging through the crowded hallway to get from one class to the next before anyone else did, she also said, “The day J gets his learner’s permit, I’m moving out of the state.”

Saturday, October 27, 2012

Autism Diaries XXXIX: Losing credibility

I admit it: I sometimes take advantage of J’s handicaps to make life easier for myself. After all, J’s deafness and autism have mostly made things harder. Isn’t it OK, at least for us, his parents, to take advantage of the occasional situation in which they make things easier?

Because he’s autistic, we can communicate a certain amount in his presence that goes right over his head. This sometimes makes it easier for us to discuss how we’re going to manage his behavior. His autism also makes him easier to manipulate at times, which helps us outwit him on the many occasions when he’s mischievously trying to outwit us.

And because he’s deaf, on those occasions when his cochlear implant is off, we can even say things in front of him that he would otherwise have no trouble understanding.

Here’s a situation in which I’ve regularly taken advantage of both J’s deafness and his autism. We’re in the bathroom together, and I’m supervising his nightly tooth brushing and shower. His implant is off, so I’m using sign language. He, of course, doesn’t need to sign to me, and is claiming that he washed his hair last night with Daddy and so doesn’t have to wash his hair tonight with me. But his hair looks suspiciously greasy and I’m pretty sure he’s b.s.-ing me.

So I b.s. back. I sign to him that I’m going to call down to Daddy and ask. Then I open the bathroom door, and, rather than shout loud enough to be heard down a hallway and flight of stairs and wake up my daughter in the process, I pretend to shout, simply mouthing the words. Then I pretend that I received an answer from Daddy, who told me that he, in fact, didn’t wash his hair yesterday. And he’s fallen for it every single time.

Until a few nights ago, when I accidentally “called down” to Daddy when J’s implant was still on. He instantly figured out the implications of this—both for me, and for him.

“Now it will never work again,” he told me, delighted, finally, to be the one to catch someone else in an act of attempted subterfuge, and to be the one handing out a consequence.

Tuesday, July 17, 2012

Autism Diaries XXXV: Crossing things off the "bother list"

According to J, only one person remains on his "bother list": his younger sister. Everyone else has been "crossed off." Her reactions to his provocations, more reliably intense and robustly satisfying than anyone else's, have been the hardest for him to give up. It's like eliminating all desserts except chocolate.

And it is, of course, a real drag for younger sister. Try not to scream when he calls you "baby," we tell her, while withholding the usual privileges from J (not answering any questions about ceiling fans until he plays 10 more games of chess) and encouraging them into separate rooms when chaperoning isn't possible.

In comparison to J's earlier, extreme, relentless and indiscriminate mischief, occasionally calling his sister "baby" (and grinning derisively and pretending that he was actually saying "maybe") is a huge improvement.

Not that all behavior problems have suddenly vanished. As a recent 10-day camping trip has reminded us, transitions, wait times, and neurotypical conversations all inspire boredom and restlessness--and Wanderlust. No longer is he locking us out of the car, rading the dessert bags before supper time, or puncturing all air mattresses except his, but an urge to run across bridges (they might collapse!) and down inclines ("because of gravity") without waiting for human obstacles to get out of his way means frequent barreling through groups of hikers on narrow trails. His greatest obsession of all has him rushing ahead of us into stores and restaurants and filming the ceiling fans with his digital camera--occasionally standing up on chairs to pull chains and adjust speeds while customers look on hushed surprise.

Indeed, more than anything else, it's that fan fandom that's now J's biggest liability in public. And on Wikipedia, where he no longer gets banned for deleting the Delete Key entry, but for repeatedly adding "Some restaurants have ceiling fans" to the Restaurant entry. Not to mention in his social interactions, where (besides hypothetical mischief and the Number 2) fans have long been a topic of extreme perseveration.

"I saw a fan; what speed do you think it was on?" he asks me for the upteenth time during some recent downtown errands, having finally earned back (via 10 games of chess at the Apple Store, which has no ceiling fans to get on film), the privilege of me answering his fan questions.

"I'm sick and tired of that question," I decide to say to him, playfully parotting back his latest response to questions like "How much longer are you going to be on the computer?"

"It's not same question!" he said. "I never asked you about this fan before."

Half an hour later we're almost home.

"I saw a fan; what speed do you think it was on?"

"I'm sick and tired of that question." This time it isn't a different fan.

"You forgot about the 4th dimension!" he shouts. Yes, it's a fan he's already asked me about many times. But never before at this particular moment in time.

Saturday, June 9, 2012

Autism diaries XXXIV: But is he a sociopath, II

He doesn't torture little animals and cut them into bits, as bonafide sociapaths are said to do. Nor has he done even once what some 'normal' little boys I know have done regularly: burn bugs with a magnifying glass.

But he doesn't hesitate to throw a mat over an errant mouse and squash it. Nor, when we return from a trip and discover that our cat has left a dead mouse "welcome home gift" on our basement floor (as we did the other day), do we hesitate to ask him to pick it up and flush it down the toilet (J being the only of us human residents who doesn't flinch at the prospect).

And then there are some suggestive things he's said recently. A few weeks ago: "Earlier, I thought it was OK to kill people, until you told me that you can go to jail for that." This echoes a disclosure I blogged about earlier: "Sometimes when I want to do something bad part of my brain says 'no' because it knows I will get in trouble."

Being bad makes you feel sad. This is the refrain I repeat whenever he shares with me a mischievous "what if I" scenario. And this little rhyme, evoking the feeling you get when your mother withholds such privileges as answering your questions about ceiling fans, has become intrinsically aversive. But can we take this a step further? Can a moral compass be acquired through operant conditioning?

However sad being bad makes you, it's hard to suppress the temptation--a temptation that, just a few days ago, he put into words for the very first time:

"Sometimes I do bad things because I like to get a reaction."
"But why don't you like getting a good reaction?"
[Short pause.] 
"Getting a good reaction is harder than getting a bad reaction."
Unfortunately, he's probably right. When he does something wrong, he can rely on us to take predictable measures to undo it; for positive behaviors like putting things away (as opposed to throwing them around) or fixing them (as opposed to breaking them) there's nothing to undo. Furthermore, people are quicker to notice things when they're out of place or messed up than when they're restored to their proper circumstances.

Beyond this, how often are our displays of delight and gratitude anywhere near as as salient (in the rapidity of our response, the volume of our voice, and the explicitness of our facial expressions and body language) as our displays of fear, anger, or dismay? And how often is eliciting someone's pleasure as obvious, simple, and straight forward as eliciting their disappointment?

Saturday, March 3, 2012

Autism Diaries XXXIII: J as editor, provocateur, and philosopher

The practical jokester:

Take your sister's shoes out of the closet, pull the laces as tight as possible, and tie two really tight knots at the base of the laces, just above the top lace hole.

(Somehow this seems like a standard practical joke, but I've never seen it written up anywhere).

Keep your face straight afterwards and deny all wrong doing.

The editor:

I've never edited Wikipedia before, but noticed recently that some of the articles I'd assigned to my class had some embarrassing typos in them. No big deal, I thought; I'll just click [edit page] and edit them away. Instead a notice popped up saying that my i.p. address had been banned from editing Wikipedia.

Apparently J. has returned to his old editing habits--which ranged from such inoccuous edits as adding "some beachhouses have ceiling fans" to Wikipedia's "beachhouse" page, to more draconian ones like deleting Wikipedia's "delete key" page.

The provocateur:

He helped clean up the trash around his school on Martin Luther King Day, but couldn't help asking me beforehand what would happen if he yelled "Whites Only" during the event.

The introspector:

"Sometimes when I want to do something bad part of my brain says 'no' because it knows I will get in trouble."

Whereupon I praise him for the good voices in his head.

The metaphysician:

"If electricity prefers metal, why do people get a shock if they touch a wire?"

Unsure of the answer, I instead introduce the term anthropomorphize and ask "Does electricity have feelings?"

"No."

"Do your cells have feelings?"

"No."

"Do your brain cells have feelings?"

Without missing a beat, he gets my drift. "One brain cell does not have feelings. Many brain cells together have feelings."

Ah, he's grasped emergent properties. Time to teach him that term as well.

Monday, January 9, 2012

Autism Diaries XXXII: But is he psychotic?

So J takes pleasure in upsetting other people--a pleasure intense enough to drive much of his social interaction--and to have made me wonder whether, in addition to being deaf and autistic, my son might also be psychotic.

Especially since his mischievous perspective-taking may be unusual for autism. I suspect that most kids with autism checklist scores are as high as J's are neither as interested in other people's reactions, nor as capable of anticipating those reactions, as he is. And that it's more common for their various misbehaviors and social "mistakes" to fade rather than to intensify when people manage to convey to them the effect they're having on others.

But is J really a devious psychopath who derives pleasure whenever others feel pain? I had only to ask myself this question a couple of times before realizing something. It's not pain in general, but anger, frustration, and embarrassment, that J gets off on. And the pleasure he feels isn't general joy, but amusement in particular. In other words, he's not someone who feels happy when he sees (or imagines) people suffering; rather, he's a kid who thinks it's funny when he sees (or imagines) people getting angry, frustrated, or embarraassed--and what inspires his mirth is more people's overt reactions than their internal feelings.

In this respect, is he really that different from the rest of us? I'm thinking of all the times I've had to stifle a laugh when watching certain people lose their tempers; of all the amusement I get from shows and movies in which certain characters make fools of themselves or go apoplectic with rage (my first taste of this: the hapless, short-tempered Otto the Director from Electric Company). Indeed, aren't lost tempers, awkward moments, and public humiliations the basis for some of our most comical fictional scenes--even when the victims are characters for whom we also feel sympathy? Think Faulty Towers, The Office, or Curb Your Enthusiasm. What is it about watching someone lose his temper, or get stuck in an awkward, embarrassing situation, that people find so amusing?

For most of us, of course, such scenes are most entertaining when fictional. In real life, we tend to empathize, at least somewhat, with the victims, and this empathy tends to temper our mirth. What distinguishes J from the rest of us, perhaps, isn't so much that he finds anger and embarrassment so amusing, but that, lacking the gut-level empathy that typical people feel towards flesh and blood humans, he treats real life people as fictional characters.

Indeed, if J sees the social life around him as one big interactive sitcom whose interacting audience consists of just one person, that would explain quite a bit about the one-of-a-kind comedy with which he's been entertaining all those around him for going on 15 years.

Saturday, January 7, 2012

Autism Diaries XXXI: Mischievous perspective-taking

"Just tell him what your perspective is. Tell him how if he turns the lights off while you're trying to cook supper, you can't see what your doing."

This advice, given to us over a decade ago by the first psychiatrist to identify J as autistic, is as misguided now as it was back then.

Back then, it was misguided because J had neither the linguistic skills, nor the basic psychological reasoning skills, to even begin to understand things like "If you turn the lights off, Mommy can't see."

Now it's misguided because J has these skills and derives delight from frustrating others. In fact, one of his latest interests is, as he puts it, "to see people's reactions." "How did you react when you saw me filming fans in the restaurant?" he asks, hoping to hear that we felt embarrassed.

People who know little more about autism than that it involves difficulty with empathy can be forgiven for assuming that the way to address J's mischief is to tell him how much it upsets people. So again and again we hear well-meaning friends or relatives telling him, or telling us to tell him, how "it really hurts my feelings when you do that." But anyone who spends even a few hours trying to understand him, assuming that their empathy skills equal or exceed his, quickly realizes that this strategy is, as the behaviorist say, "reinforcing" rather than "aversive." In other words, it makes J more rather than less likely to repeat his behavior. And, in fact, those who have carried on the most with J about how upset he makes them feel are the most likely to be repeated targets of his mischief.

My advice to all who deal with J is to minimize all clues about their reactions (J already knows all he needs to know about these!), and instead to tell him in a quiet, deadpan voice about the kinds of consequences that actually upset him--especially the more intrinsic consequences, like the priviledges that get withheld when people no longer trust him, no longer want to help him or play with him, or (especially for those who own ceiling fans or Wiis) no longer want to invite him into their houses.