I like to think Alex is a little more normal — or, like everyone else, manipulative — than might first meet the eye. Most obviously, there are the exchanges that go like this:

“Crackers?”

“How about pretzels, Alex?”

“How about crackers?”

or

“Alex, we can buy one book today. One book.”

“Buy two books?”

Image (Paul Klee's "One Who Understands"): Ben Sullivan, Flickr.com

That’s just wheeling dealing; that’s just how everyone gets through the world, and it’ll be great to see develop, just like it would be in a “normal” kid, until it inconveniences me. I know he understands stuff, too, but just doesn’t let on he knows. Like it takes dynamite to wake him at 6 a.m. on a school morning, yet he pops up like a dawn sparrow on weekends. I used to think this was just autism making my life a twisted mess until it occured to me that somebody at Alex’s school must say to him “Have a good weekend — see you Monday!” on Friday afternoon. So he knows it’s Funday the next day, and he’s happy and eager to bounce up at a Marine Corps hour, just like any kid would be. It’s just that any kid might also tell you so.

But sometimes it does feel like yes, you’re driving in traffic with Alex, but instead of red, yellow and green, the streetlights are blue, pink, and brown.

Consider the street-crossing scene in Rain Man, where Raymond stops mid-way through the street because the walk signal changes from Walk to a blinking Don’t Walk. “No, Raymond/Alex,” I feel I could explain, “you cross when it says Walk and you can still cross when it says Don’t Walk but it’s blinking. You have to stop when it says Don’t Walk and it’s no longer blinking.”

“No longer blinking,” I’m sure Alex would say. You and I would reply “okay” to these instructions. Alex, I think, would repeat one or two key phrases from the instructions. I also think that soon he’d continue walking on the blinking Don’t Walk. From his perspective, the result would be the same. From my perspective, I wouldn’t be immediately sure — “no longer blinking” isn’t “okay” to my brain — that Alex understood.

That doesn’t mean Alex wouldn’t or doesn’t understand the world. It means I still don’t understand his.

When Charlie was first diagnosed and for many years after, sounds loud or soft, low or high, did not seem to bother him. He was certainly drawn to music but didn’t seem particularly bothered by sirens, loud merry-go-round music, shouts, fire drills. Every time we had to fill out a checklist, or talk to a new teacher or OT, we always shrugged “no, no” about “any sound sensitivities.”

Fast forward to about two years ago, when a motorcycle shot past the black car and suddenly I heard a knocking sound: Charlie knocking his head on the back of the seat and crying.

That was a pretty obvious sign of something about Charlie’s sensitivity to sound. I began to drive with the windows shut (and, on hot days, with the AC fully on). Littly by little, it became apparent that a number of sounds—everything mentioned above—indeed bothered Charlie, who signalled this by sometimes crying out or placing both hands oer his ears.

But was he always seeking to block out sounds? I’d turn on a Barney video on YouTube as Charlie requested, only to see him watching from at least a foot away, hands over ears. Could he not simply be seeking to block out the sounds, but to filter them, screen out some aspects of them?, and to listen better?

We tend to equate hands over the ears with a wish to shut out some sounds when Charlie might be attempting to do precisely the opposite, to listen and hear better.

Just as: Nodding one’s head says “yes” here in the US, but it says “no” in other cultures. Same gesture, very different meanings.

It’s really been about two years that Charlie has seemed so much more sound sensitive and Jim and I think that what might be going on is that Charlie is much more alert and attuned to what’s going on around him, and therefore more in need of filtering out all that stimuli from the world. He’s listening better than ever, that is, and trying to figure out a way to best make sense of it all.

Yesterday, he sat by the side of the swimming pool for 40 minutes: We were at an event we’ve often been to, a swimming hour just for autistic children with numerous friendly high school students volunteering. Desite kindly coaxing from three different kids and Jim and me, Charlie refused to budge until the very end, when he waded in the shallow end and swam slowly to the deep end. Just as he got there, it was announced that it was time to get out. Charlie remained in the pool as it emptied out and the lifeguards replaced the plastic ropes for the lanes, and the very water and air quieted. He stayed there, floating and swimming a bit, in the deep end and middle of the pool, for some 40 more minutes.

Once upon a time, nothing could keep Charlie from jumping (or trying to jump) into a pool as soon as he saw it. Now he likes to think about it and take in what’s going all. No toddler in a tall boy’s body, he’s quite aware of what’s going on; he’s changing all the time.

Autism myths abound and Kev is collecting, and dissecting, them at this new site. One myth that especailly irks me is the notion that autistic kids are “in their own world” and “withdrawn into themselves” and, generally, “out of it.”

My son Charlie is thoroughly engaged in and attuned to the goings-on of the world all around him. He may not look like he is, and he often does no respond in the usual ways that people are accustomed, to indicate social awareness. Due to his limited language, people tend to assume, or too quickly assume, that he does not understand what is said to him.

But never underestimate how carefully someone, and someone who doesn’t have the “usual,” “expected” responses, might be tuning in.

It’s apparent to everyone—Jim and me, Charlie’s teachers and therapists—that he has a lot of feeling about the arrival and departure of my parents, aka “Gong Gong” and “PoPo” (that’s the Cantonese for “maternal grandfather” and “maternal grandmother”). Charlie gets visibly, thoroughly anxious a couple of days before they visit, in the middle of their visit (as he senses that they’ll be departing at some point), the day before they leave, and the day of their departure. He’s less in control of his nerves, one could say, and generally on edge.

This is painful for Charlie, and for everyone (and certainly my parents who are regular readers here). We all spend a fair amount of time strategizing about how to help Charlie deal with so many feelings, with anxiety, joy, anticipation, happiness; with a host of contradictory feelings that are all mixed up and experienced at once. We’ve tried photos and picture schedules but sometimes those set Charlie even more on edge. I usually try to mention that my parents are coming and going in a rather casual, nonchalant manner, in the course of a general conversation about things, in the hope that it’ll sounds like a routine occurrence, and so be felt more like that by Charlie.

Charlie gave my parents an enthuasiastic and smiley send-off Monday night. He’d gotten a buzzcut at the barber and my parents had take photos of his new ‘do; my mom made vegetable soup and paper-wrapped chicken and Charlie played the piano with brio. He said good-bye, went straight to bed on Monday, and woke early on Tuesday, and got himself ready for the bus. His teacher wrote that he was agitated getting off the bus and had one tough moment in the morning, and then was finishing off a great rest of the day when something seized him just as he was to get onto the bus. He sat for almost five minutes in his seat as I stood in the parking lot and then Charlie ran out, visibly unhappy. I followed him into our condo and he sat in the black chair by the window for 45 minutes with shoes and coat on and—I guess the word would be—-moped.

Then he got up and took his lunchbox out of his bookbag, told me what he’d done at school, and went to find his Leapsters in his room.

The rest of the day was properly boring and routine. We went for our usual walk, well-bundled up and with Charlie slushing through piles of leaves, and then to the grocery store. Last week, the store had lost its electricity earlier in the day and had to throw out many refrigerated and frozen items, including Charlie’s latest favorite, vegetarian egg rolls. The bins were properly well-stocked Tuesday afternoon and he filled a basket and contemplated, and ultimately turned down, some hot dogs. We went home, ate, did a homework sheet, and I recorded hic haec hoc.

Charlie was talking in the background of my first attempts. After the second, he started repeating what I’d said (”hic, haec, hoc, huius…….“). When I tried out the podcast I’d uploaded, he came right over to my laptop and stood listening with a smile.

All while saying, hic, haec, hoc, hu……...

A gene linked to susceptibility to autism, CNTNAP2, has also been connected to specific language impairment, the most common childhood language disorder, as reported yesterday in Reuters. The study, A Functional Genetic Link between Distinct Developmental Language Disorders, is published in the New England Journal of Medicine.

Specific language impairment involves difficulties with language and, in particular, the repetition of nonsense words. Researchers analyzed CNTNAP2 function in 184 families with common language impairments; children with certain forms of the gene had certain difficulties with language, such as the repetition of nonsense words. It was found that FOXP2, which is mutated in people with a rare speech and language disorder, “directly regulates expression” of CNTNAP2. CNTNAP2 has also been linked to epilepsy, schizophrenia, and Tourette’s Syndrome and may not be specific only for language, but may also play a role in the early development of cognitive function. As noted in the Washington Post

“What skill in language-impaired children is this gene affecting?” said Dr. Karin Stromswold, author of an editorial accompanying the paper in the Nov. 6 issue of the New England Journal of Medicine. “There are a lot of reasons you can be language-impaired, excluding hearing loss and mental retardation.”

Many children with common language impairment also have motor impairment, so the gene could actually be affecting either core language or motor involvement, said Stromswold, a professor of psychology and member of the Rutgers University Center for Cognitive Science, in New Brunswick, N.J.

In their paper, the researchers suggest that “different components of autistic-spectrum disorders (communication deficits, impaired social interaction, and rigid or repetitive behaviors) may be under different genetic influences.”

Another study about autism genetics appears in the Journal of Medical Genetics and (as noted in the November 5th Vancouver Sun) suggests that disruptions in the gene, Contactin 4, stop the gene’s proper functioning and prevent the brain from making proper networks through the development of axons; the mutations are present from birth. 92 patients from 81 families with autism spectrum disorder participated and a whole genome analysis performed, and the results compared them to 560 people without autism. Three of the patients were found to have deletions or duplications of DNA that disrupted Contactin 4. In all the cases, these disruptions were inherited from fathers without a history of autism.

Sunday we drove to Philadelphia to see a good friend. He was driving into the city from one direction and we from Jersey, and we agreed to meet in South Philly. We drove past what I noted was a Vietnamese restaurant and then lines of police cars and small groups of policemen, and lots of people walking vaguely in the direction of a giant pinata that Jim promptly dubbed “like the Trojan Horse” (it was a burro shaped pinata) and that we later realized was part of a Day of the Dead celebration. Jim found a barely the right size parking place on a city block and maneuvered the car in. We started walking, ducked into an Italian seafood restaurant to use the ATM, and sighted our friend, Hal, across Washington Avenue. Lunch was suggested and we started to debate about what to eat.

“Spring rolls,” Charlie said, soon as we asked him what he’d like so we backtracked to a Vietnamese restaurant and sat down. Charlie insisted that Hal sit next to him as conveyed by a definite “no” when I asked if he’d like to sit by me. The spring rolls that Charlie likes are technically summer rolls but somehow we referred to them as “spring rolls” when Charlie started to eat them, and the name stuck. (It’s my error, most likely—-the cylindrical rolls remind me of the Chinese egg rolls, aka spring rolls, that we used to help my mom make.) If you haven’t had them, they’re made of rice paper made soft from soaking in water, rice vermicelli, shrimp, green onions, and sometimes slivers of pork, and they’re served with a salty-sweet-sticky peanut dipping sauce. We also ordered Charlie a bowl of rice vermicelli with actual spring rolls, deep-fried and crispy.

He ate the soft summer rolls with gusto and used his soup spoon to get every last drop of sauce, then set to work on the noodles. He poked at the spring rolls, raised one to his nose to sniff it, and put it back in the bowl. When I offered to trade him my vermicelli for his spring rolls, he readily agreed. I handed over my bowl after a couple of requests pertaining to fork, face, and napkin, and then hastily leaned across the table when I saw that Charlie’s water glass was perilously placed on the edge of the table between him and Hal.

I’m not telling this story to be a restaurant critic or to add another chapter in the annals of “how to take an autistic child out to eat in a restaurant.” (One thing that works for us: Leaving happy and, preferably, with a reasonably full stomach is always preferable, even if you have to eat fast.) (Another thing, while I’m at it: Choose a place that’s rather noisy and that will tolerate a bit of a sticky floor.) I especially noted Charlie’s disinterest in the deep-fried brown spring rolls and preference for the soft white summer rolls. Sensory sensitivities (tactile defensiveness being perfectly conveyed in Whitterer on Autism’s line drawings) are a topic raised, it seems, by individuals at all “ends” of the autism spectrum. One friend refuses to wear wool anything, and knit sweaters more generally (something about what they feel like on said friend’s arms). In the midst of a back and forth about being “high-functioning” vs. being “low-functioning,” a commenter noted some who need special treatment, due to sensory sensitivities that make certain textures, colors, tastes (and I’d add, shapes, smells, temperatures) of foods unbearable, to the extent that some individuals may starve themselves.

Luckily the above-mentioned friend, polarfleece was invented (probably luckily for Charlie too—-rare’s the time I’ve tried him wearing a sweater). We also discovered for sure last week that Charlie prefers his clothes on the loose side. He’s been growing so quickly that he’s been growing out of his clothes at an unprecedented rate. I realized, belatedly, that his pants must be pinching him hard in the waist and who knows but that had something to do with some seemingly unaccountable moments in the past few weeks? Larger pants were duly purchased; Charlie not being one to go through the tedium of dressing rooms, I checked the length and we were out of the boys’ clothing section. But while the length was almost just right (I cuffed the bottoms), the waist was way to big and Charlie was regularly enjoined to pull up his pants. He hasn’t seemed to mind doing this now that the pinching in the stomach problem has been solved, but he really needed a belt, and so back to Target we went on Saturday night.

I was still wary of fastening the belt too tightly. Charlie is certainly verbal—-how else would we have had lunch at the Vietnamese restaurant—-but telling us “my pants are too tight, it hurts” or “my stomach feels sick” or “when you talk in that tone of voice, you remind me of something bad that happened in the past”: His words can’t (yet) convey these, so we have to look at what he does to get a sense of what he’d tell us if he could.

Such limited language ability suggests—says—”low-functioning,” I guess. I always stumble over that word and over the use of the word “functioning,” whether it’s “hfa” or “lfa” that are referred to. A CBC News video, Positively Autistic, occasioned some pointed discussion about “lfa” and “hfa.” There’s plenty that Charlie can’t do that children his age can. His homework involves writing his first and last names and the numbers 1-5, and doing single-digit addition with a calculator. He walked, sometimes ran, ahead of the three of us on South Philly streets, and stopped at the sidewalk and looked back at us before crossing. He started moaning and sounding overall distressed and I finally heard him asking softly for a “green drink.” He tensed up and sounded really distressed when Jim and I talked too much, and too avidly, about the latest goings-on at school for Charlie, who’s been going through “transition pangs.” We let our voices trail off and took turns talking to Hal about things when Charlie was out of earshot.

Yes, Charlie isn’t able, at this point, to talk himself about what’s going on at school, about how his pants fit, about what he might have wanted to do on Sunday afternoon. But there’s more understanding—more competence to presume—in Charlie than what he says may suggest. (And how able is the average person in explaining their emotions and feelings; why they believe in what they do; why they are voting the way they plan to on November 4th? How often do you get into disagreements, conflict, a fight, over information that is miscommunicated and the misunderstandings that result?)

We walked to Hal’s car first and we all got in, Charlie perched in the middle of the back seat and me squashed into what’s left on the right back seat. We spend so much time in our car—its odometer is nearing the 100,000 mark—that it feels very odd to be in any other car and perhaps especially one like Hal’s, with a pristine back seat free of hidden aged French fries and soda stains. Hal drove us to our car. Charlie lingered in Hal’s, after Jim and I had said our good-byes. He finally said “bye Hal” from somewhere within the blue hood of his sweatshirt, then unbuckled the seat belt and slid out, and ran to get into the back seat, still sprinkled with beach sand and the whiff of summer, of the black car.

We passed the giant pinata again as we left. It wasn’t meant to be broken with sticks to reveal sweets and prizes within but who knows what treasures might be stowed away inside it?

“Special”—as in “special needs”: It’s a term used primarily (exclusively?) in regard to children. Sometimes, just saying “special children” means the same thing. But one wouldn’t use the word to refer to adults with disabilities.

Consider this example: At at an October 30th rally in Rush Limbaugh’s hometown of Cape Girardeau, Missouri, McCain-Palin campaign representative Senator Kit Bond (R-Mo) mocked Presidential candidate Senator Barak Obama for saying that he’s looking to nominate judges who empathize with “the disabled.” Sen. Bond was joining Vice Presidential candidate Sarah Palin at the rally. As noted in a press release from ADA Watch and the National Coalition for Disability Rights:

“It’s Halloween and it seems that Sarah Palin’s mask of support for people with ‘special needs’ is slipping. Despite past pandering to people with disabilities, McCain-Palin are actually opposed to vital disability legislation like the Community Choice Act and they want to appoint judges who will further roll back the civil rights protections of the Americans with Disabilities Act,” declared NCDR’s founder and president, Jim Ward.

NPR’s Nina Totenberg has reported that McCain-Palin’s and conservatives’ “most oft-mentioned prospects” for nomination to the Supreme Court include Ohio Judge Jeffrey Sutton. Sutton was opposed by hundreds of disability organizations when he was nominated by President Bush after successfully weakening the ADA with states’ rights arguments. As a sitting judge, he has recently supported the execution of criminals with developmental disabilities and has undermined the Help America Vote Act(HAVA).

Disability rights advocates are further incensed that the McCain-Palin campaign has reframed this civil rights struggle, one founded in concepts of equality, dignity and self-respect, as an issue of “special needs.”

Disability rights advocate, Steve Gold states, “Yes, we need support services. Yes, we need inclusive education. Yes, we need integrated employment. Yes, we need equal rights. This not ‘special.’ These needs are based on us, people with disabilities, equal members of our communities. We are not inspirational nor are we ‘special.’ We are PROUD PEOPLE WITH DISABILITIES who should push back when anyone describes us as anything but equal members of our communities.”

More about what was said at the rally at FOX News.

“Disabled.” “Special.” I know it’s just a matter of words—–and being the mother of a disabled son, and a son for whom talking and communication aren’t easy, I’ve become hyper-aware of how much words matter, and what they say and what they don’t.

Phonagnosia is the inability to recognize voices, yesterday’s Science Daily reports. A case study published in Neuropsychologia reports on “KH,” who is

……unable to recognise people by their voice, including her own daughter whom she has great difficulty identifying over the phone. The woman, known as KH, avoids answering the phone where possible, and for many years has only answered ‘booked calls’. KH books calls with friends or co-workers, so she knows who to expect when the telephone rings at a certain time. In the 1980s, KH had a job in which she introduced herself with a different form of her first name so she would know that it was someone related to her job when they called and asked for her using that name.

Charlie doesn’t say so much using words so it’s not so easy to know what he’s thinking and there’s a tendency to assume that his limited speech means his understanding of what others say is equally limited. He always turns his head or looks up or hums in a different tone when he hears the sound of Jim’s or my voice and certain voices (high-pitched and sounding like LaaLaa, the yellow Teletubby) seem to grate on him.

Jim reminded me that Charlie’s own voice will be changing sooner than soon—so we’ll be having to adapt to the sound of a new voice.

I’ve been teaching some of my Latin students how to scan Latin poetry—-how to figure out the meter by identifying long and short syllables, elisions of vowels, when there’s a pause for a breath (caesura). One student commented that he likes scanning more than translating and it is a different sort of way of dealing with a language, looking at the sounds and syllables of words and not so much their meanings.

I talk about scanning as attending to the music of the poetry, to its sounds, more than to its sense. I’ve often noted that Charlie’s always had an affinity for music. That’s the impetus behind efforts to teach him to play the piano and the cello. While Charlie’s long struggled to learn to read words, he figured out how to read notes and the basics of sheet music (for both instruments) quite easily. He and Jim have an ever-growing repertoire of call and response songs and I’ve often been able to figure out what Charlie is saying (he doesn’t always fully articulate his syllables) by the intonation, pitch, and rhythm of his voice. I’ve also noted that he often seems to figure out what we’re saying based as much on those musical qualities.

The October Scientific American has a brief overview of a Jaunuary letter in Nature, on ultra-fine frequency tuning revealed in single neurons of human auditory cortex. It seems that human’s brains are “wired” to hear fine discriminations of sound, down to the 12th of an octave.

The study revealed that groups of exquisitely sensitive neurons exist along the auditory nerve on its way from the ear to the auditory cortex. In these neurons natural sounds, such as the human voice, elicit a completely different and far more complex set of responses than do artificial noises such as pure tones. In this mixed environ ment humans can easily detect frequencies as fine as one twelfth of an octave—a half step in musical terminology.

The vexing question is: Why? Bats are the only mammal with a better ability to hear changes in pitch than humans do. Predatory species such as dogs are not nearly as sensitive—they can dis criminate resolutions of one third of an octave. Even our primate relatives do not come close: macaques can resolve only half an octave. These results suggest the fine discrimination of sound is not a necessity for survival.

It’s been several months since Charlie had his last piano lesson when his teacher moved away and we don’t practice nearly as much as we used to. Nonetheless, after a little warming up, Charlie’s pretty much back in sync with reading and playing. One of the last things his teacher taught him was to read and play sharps; Charlie caught on easily to this, and often correct himself if he plays a natural note when there’s a sharp, and quickly moves his finger to play the black key a half-step up.

There’s been a lot said and studied about the effects of studying music and playing instruments on children’s learning and intelligence. I don’t have any hard data, but certainly music’s been a key tool for communicating, teaching, and understanding with Charlie, and he with us. I know he can hear a 12th of an octave and this further leads me to note that Charlie hears everything said around him, and that (as we constantly have to remind those who don’t know him) understands most everything he hears. He’s a much better listener than some might think.

(And, perhaps, than many of us who don’t have any “communication disabilities.”)

“Figuring out his signs, it’s like watching a third-base coach.”

Says Brian Rattner about his oldest son, Jarrett, who is 13 years old and does not talk or walk. An October 23rd New York Times article describes Jarrett’s bar mitzvah last Sunday, and how his parents came to focus on “who Jarrett was and what he could do”:

When he wanted a ball, he would pound his chest until he got it. “Sometimes, he wants to communicate so badly, you can hear him from the other room pounding his chest,” Mr. Rattner said. “There’s a lot of emotion there.”

He is good at making eye contact, and his mother noticed that if she asked what he wanted for lunch — turkey? tuna? chicken? — he would say yes by blinking his eyes and then holding them closed an extra second.”

Hence, that need to learn to “read the signs” like a third-base coach—-something Jim and I have tried to do to understand how to communicate with Charlie on his terms, in the language he’s trying to teach us.

As we were leaving a subway station on Friday night in Manhattan, Jim paused for a moment, pointed to a dingy wall, and said “here’s the sign to the PATH.” On a pale green piece of paper

PATH
train
————>

was written in black marker, with the arrow pointing toward a staircase.

Someone had carefully placed four long strips of masking tape like a picture frame around the edges of the makeshift sign.

Yes, there’s a lot you can do with tape. Charlie’s had a longstanding fondness for the sticky stuff, or perhaps a better word to use is intrigue. I guess there is some magic in something that can put back together what gets ripped or torn (like some of his favorite photos). It’s been found that just unrolling tape can produce X-rays; a few friends have noted their kids’ ability to use up rolls of Scotch tape, which seem so well suited for festooning walls and doorways with.

Last night, after we got home, Charlie requested the scissors and a roll of Scotch tape to fix an old Barney CD. A small piece had broken off, right where there was a picture of Barney in his purple glory. Charlie asked me for “help” and I taped the broken CD together and, after handing it back, Charlie said:

“Thank you.”

I told him he was of course, very welcome. (And ran to tell Jim about this first spontaneous “thank you.”) (Yes, a first.)

After about fifteen minutes, I still heard the sound of tape being pulled off the spindle. I went into Charlie’s room and found him applying the 20th or so strip of tape onto the Barney CD, which now was sported a glistening shellac-mound of tape in its middle. “Bye Mom,” Charlie told me without turning around.

Because it’s important—it’s necessary—to make sure that a favorite thing, when broken, gets fixed extra special good, for keeps.