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 One myth that especailly irks me is the notion that autistic kids are “in their own world” and “withdrawn into themselves” and, generally, “out of it.”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……...

Sensory processing is the topic of a presentation at the May 20089 IMFAR conference (International Meeting for Autism Research), as well as of a number of poster presentations. Here’s the description for a segment (#148 in the Program Book) on “Sensory Processing:The Interface of Research and Clinical Practice”:

Sensory differences are commonly reported in people with autism. Often they are among the most problematic symptoms. This symposium will examine the phenomenon of sensory symptomatology, the research methodology used to characterize and explain the observed behaviors, and the treatments that are being used in the community. A translational approach will be emphasized to inform both basic researchers and clinicians on future avenues of study.

Papers will look at how to characterize sensory processing differences in autistic individuals; interventions; neural mechanisms; and neuropsychological perspectives.

When Charlie was just diagnosed, we didn’t think he had any sensory issues. I rather think, now, that we just did not know what we were looking for. The more I’ve learned about sensory processing (and reading books by autistic authors like Tito Rajarshi Mukhopadhyay have been invaluable), the more I’ve seen that, yes, Charlie indeed has sensory processing differences and that his difficulty at telling us about these and explaining what they feel like may well lead to various sorts of outbursts and general unhappiness. The other day, I accidentally dropped my (metal) traveling coffee mug on the kitchen counter and Charlie cried out in serious pain and kept crying for some twenty minutes. After years of indifference to me vacuuming, I now tell him that I’m turning on the dustbuster and he puts his hands over his ears, tucks down his head, and steals random glances at me working on the crumbs left from someone’s snack. The key thing is that I give him advance notice about the loud sounds of the vacuum.

Charlie (according to my “research,” such as it is) has learned and is learning his own strategies for dealing with all that noise from the likes of me.

The “rainfall causes autism?” study is garnering its share of media attention, as in this article, Study links autism and wet weather, in the San Jose Mercury News (which is curiously, or appropriately titled, depending on your views about mercury and autism).

But what about the correlation more than a few parents have noted about how their autistic children seem to become increasingly unsettled as the barometric pressure falls and the humidity rises; as a rainstorm, and especially a thunderstorm, is brewing? As the weather changes?

High ceilings spur creative thinking, according to a recent study which did get me thinking about this: Charlie’s middle school classroom has a much lower ceiling than last year’s elementary school classroom last year, which was in a different building in a different part of our town. And, while his room last year had a row of windows that looked out to a playground and trees, this year’s room is on the far side of a corridor. There are windows, but they look out onto a hallway.

Lower ceilings and a lack of outside-looking windows aren’t the reason that Charlie’s transition to middle school has had its downs and ups and plateaus. But a little more light maybe, of a natural kind………

A study to be released today in the November Archives of Pediatric and Adolescent Medicine, reports on a link between high levels of rainfall and increased rates of autism. From the LA Times blog, Booster Shots:

Cornell University economist Michael Waldman found that in areas of California, Oregon and Washington that experienced high levels of rain and snowfall during the years 1987-2001, autism rates among school-aged children rose when measured in 2005. Those children diagnosed with autism would have been under 3 during the periods of high precipitation, the period during which autism is generally diagnosed.

There was mention of a precipitation-autism link in 2006, in Prof. Waldman’s study on TV causing autism—more on that finding (which was, may I say, received with many grains of salt) is here.

And it may help to remember, that correlation does not equal causation.

The West Side News reports on the benefits of hipportherapy for disabled children; a friend’s daughter started this sport some months ago and has been enjoying it:

….[hipportherapy's] techniques involve more than just putting a child in saddle and walking him around a riding ring.

Participants ride forward, backwards, and sideways in an effort to strengthen different muscle groups and experience the horse’s movements differently.

Something tells me you can horseback ride on a Wii, or not?

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?

Teachers at Patterson Mill Middle/High School in Maryland are using a Wii to teach autistic students sports, today’s Baltimore Sun reports. The teachers were able to purchase the Nintendo device through a grant; the Wii’s been incorporated into the students’ daily schedule. And, I know someone who’s planning to teach autistic students to use a Wii as her project for master’s thesis.

(Though I don’t think we’ll be getting one at home, preferring to stick to “actual” exercise (biking, swimming) rather than the virtual sort……..)

Work has been unusually hectic lately for me: Students are registering for spring semester classes and I keep walking out of my office to see a couple of students looking at me expectantly, and telling me “they just need a few minutes.” I’ve been saying “I can meet next week because my parents here and right now I have to get home to meet my son’s schoolbus” and have only belatedly realized why the students look so puzzled: What does the arrival of my parents have to do with them getting into their preferred section of English 134?

It’s very simple: On-call babysitting, grandparents style.

More grandparents (grandmothers in particular) are “filling the child care breach,” the October 31st New York Times notes. My parents live in California and come out to see us a couple of times of year. Charlie’s their only grandson; he’s so fond of them that just mentioning a visit initially leads to massive panic and (last night on a subway) barely suppressed loud crying. Yes, he’s looking forward to seeing them, but he’s also anticipating when they leave and how he’ll miss them.

We’ve tried picture schedules and calendars and social stories to make my parents’ stays, and the expectation of them, less anxiety-ridden. Recently, Jim and I concluded, the anxiety in Charlie is something he truly feels and it has to be gotten through. We figured he would get upset and vocalize about it—-and get over the anxiety, eventually.

Because grandparents—if I may use the word (after yesterday’s discussion)—-are really truly special, and that’s meant from the heart.

A new study has found that burning incense—as in frankincense, the resin from the Boswellia plant—

“activates poorly understood ion channels in the brain to alleviate anxiety or depression. This suggests that an entirely new class of depression and anxiety drugs might be right under our noses anxiety and causes other antidepressant activity in the brain.”

We’ve already heard about this as an autism treatment so don’t be surprised if frankincense gets added to the list—-not that spikenard hasn’t already been proposed (if you read the matrixes in Revelation 13 about autism, dioxin, devoured souls, and metals.)