Discussion was dominated by two stories, that of 13-year-old Adam Race, against whose parents a priest filed a restraining order, and of 5-year-old Alex Barton, who was voted out of his kindergarden class by his classmates, at the suggestion of his teacher, Wendy Portillo. These two incidents sparked some very heated and often acrimonious exchanges and remind me of why there’s a need to think about autistic persons and the community, in faith communities and all others.

Also: It was reported that there had been 72 cases of measles so far in the US, the highest number since 2001—-and the number would only go up, while misinformation about vaccines continued.

Sometimes it seems that everything, if not anything, could be said to cause autism (and that everything, and anything, has been offered as a “potential treatment for autism”). New tests to detect signs of autism in younger and younger children and, indeed, in babies were reported.

A New Yorker article on neurodiversity provided a simple answer to the question of where are the autistic adults?

And in May of the year when I started learning more and more about employment and housing for autistic adults, Charlie celebrated his 11th birthday–and am I always glad to be Charlie’s mother.

4 hours 49 minutes 20 seconds.

That was Jonathan Brunot’s time in this year’s New York City Marathon. Today’s New York Times details how his race went:

Jonathan aced [the NY Marathon] Nov. 2 on his first attempt in 4 hours 49 minutes 20 seconds, including timeouts for a slight tantrum at Mile 22 (he refused to drink his PowerGel beverage), a slight leg cramp at Mile 23 (payback for not hydrating) and a slight fumble near the finish line (he paused to wave and scream and applaud himself when he caught sight of his tearful mother, Olga, in the bleachers).

Jonathan doesn’t know he didn’t quite nail Mr. Del-Cid’s goal of 4:30. He also doesn’t know Mr. Del-Cid’s goal for 2009 is for Jonathan to run the marathon in under four hours. Time and goals are irrelevant concepts to him. But he will surely recognize the race: It’s word No. 14 in his lexicon. “Vincent,” and “to run” are words Nos. 11 to 13.

Jonathan dressed himself in running gear and bolted down two bagels before the race, and he heard, parroted and retained a complicated new word: marathon. Or, as he gleefully mispronounced it the other day, “Malathon, malathon,” while squirming self-consciously next to his coach on a sofa in the home he shares with his oft-exhausted parents. They double as his 24/7 caretakers. Though he is much less exhausting since running liberated him and, in a sense, them.

(”Maraton” ’s the name of a Korean movie based on the true story of Bae Hyong-Jin, who’s autistic and who’s a marathon runner.)

And, Jonathan’s father, Dr. Verlaine Brunot, is “so convinced of the marathon’s positive impact on Jonathan that he is training him for the bicycle phase of an Oyster Bay triathlon.”

Think Charlie may have to join Jonathan in training for that someday—–he and Jim were out on their bikes for over 2 hours today (minus the time for a snack stop).

On May 13th, two men from Worcester (Massachusetts) started walking across the US in memory of Elias Tembenis, who was autistic and passed away last year at the age of 7, and on behalf of the National Autism Association (NAA). The two men completed the walk last week on Election Day.

Reading about this, I get this image in my mind of Jim and Charlie someday undertaking a similar walk, or maybe going for their longest bike ride ever………..

The Today Show website has posted an excerpt from the beginning of Dr. Paul Offit’s Autism False Prophets: Bad Science, Risky Medicine, and the Search for a Cure.

At the Parengs Bloggers Network, some parents describe a “feeling of betrayal” in regard to the “overwhelming fears and sadness surrounding autism and the still hotly-debated autism-vaccine link” discussed in Dr. Offit’s book. Excerpts from some parents’ reviews of the book are here

And if you’re watching the Today Show in the 8:00 half-hour tomorrow (Thursday, October 30th) morning, there’s a segment on vaccines and autism. I was interviewed for it, and I think there should be some footage of a certain boy riding his bike.

Neither snow nor rain nor heat nor gloom of night stays these couriers from the swift completion of their appointed rounds—–that’s the unofficial creed of the US Postal Service, courtesy of the ancient Greek historian Herodotus. I was thinking of it today while Charlie, with the wind picking up and a few drops of moisture fluttering around in the air, ran to get his bike.

He’d woken at 7.30, and ran around while Jim and I called out that we’d be “up soon.” Charlie waited on the couch, peering out the window, while Jim got him his favorite weekend breakfast at the (very excellent) local bagel store. After that, with the sky getting not only gray but dark, I mentioned a bike ride and Charlie first got his bike, then his helmet, and then came back inside and asked for Jim’s helmet.

It was nowhere to be found and Charlie was frowning as he pushed his bike out to the street. He likes his routines, but Charlie can be a lot more flexible than might be thought and off he and Jim (helmetless) went. I figured that the rain would start after a short while and kept expecting a call from Jim to meet them but they were gone almost 2 hours. Jim noted that he’d kept them riding in the vicinity of the train station of the next town over so they could duck into it for cover, but they didn’t have to. Instead, they explored some different and new streets and neighborhoods, with a stop at a 7-11 on the way back.

“Yellow rice!” Charlie was calling for this as he kicked down his bike’s kickstand. Jim had been talking about going out to dinner at a certain Spanish restaurant that serves a very nice paella; he noted that Charlie had turned down the offer a Golden Arches fast food lunch. It was only 2pm and, while talking about his dinner plans, Charlie fell sound asleep on the couch. Biking in a strong wind, with rain imminent and the sky all gray, can tire you out, and it was a 2-plus hour nap. (He wasn’t the only one who dozed off.)

Jim went out for a fast ride around the block at 5pm; Charlie got up slowly, grabbed his helmet, and asked again for Jim’s, and suddenly I sighted it, at the side of a table (piled high with numerous other items). Charlie ran out and gave Jim the helmet and pushed his bike into the street. It took a few seconds for Charlie to swing his left leg over the seat and to pull himself onto the bike, then off he and Jim went, just for a few spins round the corner, before the rain picked up.

The rain was coming down and, as we drove in the black car to the Spanish restaurant, it was hard to see out the windows. We made it, Charlie grinning hugely, and hungrily—-he scraped the metal bowl to get the last of the paella.

Neither snow nor rain nor heat nor gloom of night stays this family from our appointed bike-riding and rice-eating rounds…….

After a bit of an unordinary Saturday, we had a nothing-special Sunday. It’s a balance of new things and familiarity that we’ve found amenable for Charlie. While bike-riding and piano and cello playing were all nothing unusual for Charlie to do, doing these things for a camera and with a lot unfamiliar people around—-that calls for some unwinding.

Sunday Charlie woke up early and then went back to sleep (actually, we all slept in). He had breakfast and wanted to eat more and when I suggested he ride his bike to the bagel store with Jim, Charlie called for his helmet and put on his socks and shoes and sweatshirt. He looked in the usual place for the helmets and only found a very old one of Jim’s (that makes the wearer look like he has a turtle on his head). Charlie tried it on and put it down and I noticed that the helmets were on the floor in front of a bookshelf. Charlie grabbed one and I brought Jim the other one: “They’re interchangeable!” Jim noted and off they went, not to return for an hour and a half, Jim swinging a plastic bag loaded down with juices and a bagels from his handlebars.

Charlie ran for a plate and grabbed his Leapsters and the bagel bag and set himself up on the couch—yes, you read that right—it is now Leapsters. Saturday afternoon we realized that Charlie’s original Leapster—lovingly carried to many places and always under Charlie’s arm when we go to New York—-had suffered too may falls and dents and was stuck at the opening screen. (Charlie also likes to carry it by the attached stylus sometimes, and that has led to it working erratically.) I got online and looked up the Target website and found, lo and behold! our local Target had Leapsters in stock and so to Target we went, where Charlie (once I found the aisle with Leapfrog products) stood solemnly eyes agog at a stack of Leapsters (green and pink). He looked at me (yes, pleadingly) and I said (of course I said), “Sure, you can get one.”

The Leapster box was carried tightly under Charlie’s arm as we made our way through the store. Charlie and Jim wandered into the DVD aisle while I located shampoo and soap; I found Jim waving a book at me. Its title was Goodnight Goon, a parody of what is still Charlie’s much loved book (and we both agreed, it doesn’t quite compare to the original, but maybe we’re overly sentimental.)

Charlie pushed the Leapster box toward me soon as we got home and told me “I need help.” I got out scissors and then batteries (just purchased) and a screwdriver and soon Charlie had his new Leapster going; he ran to get the old (chipped, battered) one and set them side by side.

So Sunday, he made sure to have those Leapsters around as he ate his bagel, and then took them to his room where he was going through a rather messy pile of old CDs. I again heard the call “help” and “fix“; when I went into his room, Charlie handed me a CD with a picture of Barney on it. Part of the CD had broken off and I said ok and got some tape and, with Charlie scrutinizing my every move, carefully lined up the edges of the CD and the chipped off part and handed it to him.

“Thank you,” said Charlie.

I said, of course, you’re welcome, and went to tell Jim because, yes, first time Charlie has said that on his own.

Thank you, Charlie.

Around 11.30 am on Saturday a black van pulled up in front of where we live. Charlie was sitting on the couch and looking out the window for Jim to return with breakfast and his eyes lit up at the sight of that van.

Back in June, Jim and I were interviewed by Todd Drezner, who’s making an autism documentary called Loving Lampposts. Yesterday Todd and his crew came to shoot some footage of Charlie and us. After a couple of really fast “no’s,” Charlie sat down at the piano and then strapped on his helmet to ride his bike.

Charlie made sure Jim had his and hopped on to follow Jim’s black bike. It took Charlie a moment to swing his right leg over his red bike and for a moment he balanced an almost-still bike before his left foot found the pedal, and then he was off and riding. After going halfway down the street, Jim tapped Charlie’s shoulder and the two of them turned around in unison and rode past the cameraman, then rode about halfway down the street the other way before turning around again in a neat oval. Charlie’s whole face beamed as he flew by.

After about four rounds of that, Charlie told Jim it was time for an actual bike ride and off they rode. Todd and his crew asked about a place to each lunch. At the sight of the three men getting into the black van, Charlie said “no, no” and stood sentry by the back of the van, until Jim suggested that they follow him and Charlie to a restaurant, and off they all went. Jim and Charlie stopped at a sub shop where Charlie said “no” after a split second to a meatball sandwich. At first Charlie was unsettled and broadcast his voice and anxiousness loudly. Jim went about ordering and getting food and settling Charlie in a booth and they ate (Charlie got a bagel; Jim had the whole sandwich).

When they came back, Charlie relaxed on the couch and then said “yes” to playing the cello (whose G and C strings were very out of tune; fortunately I was able to fix that). Charlie sang as he plucked each string and he can really carry a tune: “A, A, A; D, D, D; A, D, A, D, A, D, A. C, G, D, A, D, G……”

Afterwards, the crew packed up their equipment while Charlie ran out to admire that black van; it was shiney and gleamed and Charlie and I could see our full reflections on it. Charlie had his faithful blue hoodie pulled tightly over his head as he peered at the black van’s side. Todd and the crew said their good-byes and Charlie backed away and watched the van drive away.

“It was nice seeing friends today,” I said.

“See friends today,” said Charlie.

Charlie’s eyes always light up when I say the word “friend.” Maybe he doesn’t have friends in the usual sense of that word, friends who are his age and peers and who he hangs out with. But for Charlie, there’s no questioning of the wish for contact and time with others, for being among others, to be with people, and to enjoy their company. And having a chance to show off just some of what he can do makes for another good day with Charlie.

So for all the heightened awareness about autism, and despite the fact that most people I meet say “I know someone who has an autistic child/brother/child of co-worker/etc.,” numerous myths about autism persist.

And, ok, I’ll admit it: One can feel a certain amount of satisfaction in debunking one of those, such as the claim that autistic persons lack empathy.

Last Sunday, Jim and Charlie went on one of their long, long, long bike rides. They go here and there and onto certain favorite streets. Charlie often rides ahead. He’s started going really really fast and Jim zooms after to keep up. Charlie’s learned about going left and right, about stopping at stop signs, about watching out for cars, all while riding his bike. (He does have to be careful around the rear view mirrors of parked cars—he crashed against one once and fell off his bike.) (Falling itself being, I guess you could say, part of the whole kid-bike experience.) Sometimes they stop for sodas and snacks and sit where they can see the bikes.

Sunday was warm, autumn colors lining the roads, and Jim told me how broadly Charlie was beaming as they peddled through a park. They were coming out on a path and came upon a father and his son, who was about four years old and on a little bike with training wheels. As Jim recounted to me, the father was saying things like this:

“You’re not doing it right. You don’t remember everything I showed you yesterday. You’re not getting it right.”

Charlie rode by and, just as he did, the other little boy burst out crying.

The glow immediately left Charlie’s face. He was nervous and weepy, Jim told me; he was very agitated for another whole mile.

He’d heard another child crying and he felt bad. He felt with another child, in sympathy, which is from the ancient Greek word sym for “(together) with” and pathos, “feel,” and also a root word in “empathy.”

Which isn’t lacking in our household.

Yesterday I asked on the ScienceBlogs Book Club about how we can frame vaccines to combat what seems to be widespread public ignorance, or at least uncertainty, about what causes autism and what autism is.

So how about this for a message for what autism is?

Yes, that’s my son Charlie off on a bike ride. Jim was standing behind me as I took the photo: Jim’s quite able to pedal really fast and catch up to Charlie (who’s able to pedal really really fast himself). We’re not trying to push our luck with Charlie riding his bike in the street but one thing has becoming more and more apparent:

Riding the bike has taught Charlie about stop signs and stopping at them, about cars and stopping for them, about looking both ways before you dive into an intersection, about traffic. About why running into an intersection is something you just don’t do.

Learning to ride a bike has had a lot to do with teaching Charlie some essential skills of independence. It’s given him freedom of movement, a freedom that I hope will last him for his whole life. It’s not looking too likely that Charlie will be a candidate for learning to drive, so, besides taking public transportation and hoofing it, riding a bike is going to be Charlie’s main means of taking himself places.

I’ve recounted some of our first adventures teaching Charlie to ride his bike here and mentioned some of how Jim taught Charlie to ride a bike here. Charlie started on a tricycle and then moved up to a two-wheeler with training wheels. Jim first tried to take off one training wheel in a high school parking lot when Charlie was about 5-going-on-6, but Charlie wasn’t ready. The next year, Jim took off both training wheels and, in the parking lot of the elementary school that Charlie was then attending, Charlie learned to balance on his bike.

But learning to stop the bike was another thing: It took a good year plus (plus) for Charlie to learn to “squeeze the brakes” when Jim and Charlie came to a stop sign. Jim started pointing them out when Charlie was 6 and it was about 3 years later that, on a walk around our neighborhood, I started to notice Charlie looking up. He was looking at a sign (it was for the speed limit, rather than a stop sign) and from then on, I noted that he was much more aware of street signs in general. And lately while on a walk, Charlie has been stopping when the sidewalk ends and turning around to look back at me and if he notes a car coming, he stops too.

When I noted this to Jim, he said, “That’s from the bike rides—he’s really aware of cars.”

Sunday started overcast and even a big muggy, but the sun was out in full force by noon and after a sluggish day, Jim got out the bikes and he and Charlie were off. I guess I ought to call it “bike therapy”—everyone was energized afterwards, Charlie running inside to tell me he wanted to eat, and then going to put his bike away when I asked. We went out to his favorite hamburger stand, per his request, and he sang exuberantly all the way there. He wanted to sit outside. It was cool but not cold and so we ate dinner with a crescent moon rising behind us, while Charlie asked frequently for dousings of ketchup on his food. And after saying “no school” when we talked about Monday, after a shower and a little YouTube he shut the lid of Jim’s laptop and nodded when we mentioned that he’d best to get bed early for school.

I’m going to quote one frame suggested by Ms. Clark:

Yes, the autistic person needs to adapt to the wider world, but the wider world needs to adapt to the autisic person, too.

Yes and double yes a couple of times over.

From the Sun News (Myrtle Beach), an article about the Little Red Dog Foundation, which seeks to give away specially-equipped tricycles to disabled residents, many of whom are children.

Police officers in Freehold, New Jersey, rescued 6-year-old Jahmir Mayfield from biking into traffic. Jahmar has autism and ADHD and had just learned to ride a bike; today’s Asbury Park Press noted that he has a tendency to wander for home and wears a “global positioning tracking device around his wrist.” I have to keep knock on wood, but so far Charlie not been once inclined to take his bike out and strap on his helmet (yes, he always insists on wearing it) and head for the streets on his own. He seems to equate bike-riding with Jim going with him too and I think for now, best he keep thinking that. It’s the downside of freedom of movement.