I would say I wrote a lot, and probably too much, about Jenny McCarthy in 2008 (and writing less about her, and about the whole vaccine-autism idea, is making its way higher and higher up onto my list of New Year’s resolutions).

Nonetheless, vaccines dominated discussions about autism in March in the wake of announcements about the case of Hannah Poling, whose “pre-existing mitochondrial disorder…. was ‘aggravated’ by her shots” and led to symptoms of autism, as conceded by the U.S. Federal Court of Claims. A lot of debate followed about the Vaccine Court, to the point of general vaccine fixation.

Some mentions of birdsong and fish, and then, in the course of yet again saying it’ not the vaccines, some thoughts about why this is such a personal matter.

Also: Insurance coverage for autism “treatment” was regularly mentioned in 2008 and legislation put forward in many states: For what in particular? For how long?

And: Does your child know that she or he is autistic?

So the December 17th New York Times refers to the DSM, the Diagnostic and Statistical Manual of Mental Disorders, now in its fifth revision. Will Asperger Syndrome and “high-functioning autism” be merged? Will sensory processing disorder enter the DSM?

The revision, it’s noted, “will have consequences for insurance reimbursement, research and individuals’ psychological identity for years to come,” and, too, for our cultural understanding of what “autism” is. Perhaps it’d be more accurate to call the DSm (whatever revision), the book of being human, all too human.

When Charlie was formally diagnosed with autism in July of 1999, “autism” seemed like something strange and puzzling and (to be very honest) unfathomable to me. I didn’t know anything about it, and I didn’t understand why it was necessary to apply such a “label” onto my toddler.

Nine years later, and not only do I know a great deal more about autism (with much more still to learn). It seems that people in general know a lot more autism, or are at least familiar with the word; it’s been some time since I said “autistic” and someone said back to me, “You mean he’s artistic?”.

At 10 months, Charlie’s then-pediatrician noticed that he had a “minor gross delay”: He’d just started rolling over at 9 months and, too, just started to sit independently. He had other gross motor delays and, taken on their own, these didn’t, and don’t, add up to an autism diagnosis. But Charlie, as I realize in thoughtful hindsight, did not display joint attention. He loved to be carried and held and smiled; he tended to stay put in one spot. Now, every time I read about some researcher’s latest new method for identifying autism in infants, I wonder, what would such a test have noted about Charlie? And I as often think, it’s likely they would have noted “something” about Charlie—-that, today, he might have been diagnosed at an even younger age; researchers are, indeed, evaluating the accuracy of autism screening tools for children 18–24 months of age.

A study in the December Archives of Pediatrics and General Medicine examines autism prevalence trends over time in Denmark and states that “the apparent increase in autism in recent years is in part attributable to a decrease over time in the age at diagnosis.” A cohort of more than 400,000 children—all children born in Denmark from January 1, 1994, through December 31, 1999—were studied. From the abstract:

Results Statistically significant shifts in age at diagnosis were observed for autism spectrum disorder; children diagnosed before age 9 years in the cohorts born between January 1, 1994, and December 31, 1995, between January 1, 1996, and December 31, 1997, and between January 1, 1998, and December 31, 1999, were on average diagnosed at ages 5.9 (95% confidence interval [CI], 5.8-6.0), 5.8 (95% CI, 5.7-5.9), and 5.3 (95% CI, 5.2-5.4) years, respectively. The relative risk comparing the 1996-1997 birth cohort with the 1994-1995 birth cohort at age 3 years was 1.20 (95% CI, 0.86-1.67), which decreased to 1.10 (95% CI, 1.00-1.20) at age 11 years. Similarly, the relative risk comparing the 1998-1999 birth cohort with the 1994-1995 birth cohort at age 3 years was 1.69 (95% CI, 1.24-2.31), which decreased to 1.23 (95% CI, 1.11-1.37) at age 11 years. Similar results were observed for childhood autism.

Conclusions Shifts in age at diagnosis inflated the observed prevalence of autism in young children in the more recent cohorts compared with the oldest cohort. This study supports the argument that the apparent increase in autism in recent years is at least in part attributable to decreases in the age at diagnosis over time.

When Charlie was just diagnosed and shortly after (in 1999-2000), we were often told that he—he was 2-3 years old then—was “very young” to be diagnosed. Now, it seems standard for children to be diagnosed by the time they’re the age Charlie was when he was diagnosed with autism back in 1999. It seems more than obvious to me that we would have been told that they were seeing “red flags” about, who knows, 6-month-old Charlie’s development, and we would have started out on the road to a diagnosis even earlier than we did. A summary of the articles in the December Archives of Pediatrics and General Medicine displays two graphs, which show that, between the two birth cohorts studied (one from 1994-1995 and the other from 1998-1999), the age of a child at the time of autism diagnosis decreased, even as the prevalence rate has been increasing.

Again, the authors of the study note that it’s possible that “the apparent increase in autism in recent years is at least in part attributable to decreases in the age at diagnosis over time.” Thus, early detection and diagnosis of autism—-and increasingly earlier detection and diagnosis, at that—are, it can be argued, contributing to the increase in the prevalence rate of autism. Our ability to better diagnosis autism isenabling us to identify autism earlier in younger children and this is a contributing factor to the rise in autism cases. There’s not so much an “autism epidemic” occurring, as that our knowledge about autism is growing and will, it seems and I hope, continue to.

A new national strategy for screening for Down syndrome in Denmark has halved the number of Down Syndrome births and led to a 30% increase in infants diagnosed with the condition. The Danish National Board of Health issued guidelines for prenatal screening and diagnosis for Down Syndrome in 2004; these guidelines (from Science Daily)

included the offer of a combined test for Down Syndrome (based on combination of maternal age, plus serum and nuchal screening) in the first trimester. This test gave women a risk assessment for Down Syndrome at an early stage in the pregnancy. Women whose risk was higher than a defined cut off were referred for invasive diagnostic tests (chorionic villus sampling or amniocentesis).

The study is published in the November 27th British Medical Journal.It was recently reported that births of children with Down Syndrome are increasing in the UK. While most women who receive a prenatal diagnosis of Down Syndrome still choose not to have the child, more are now deciding to.

Carol Boys, chief executive of the [Down's Syndrome Association], had not expected the rise in Down’s syndrome births. “It seems to show that more parents are thinking more carefully before opting for prenatal screening and termination – that being born with Down’s syndrome is being seen in a different light today,” she says on the programme.

Substitute “autism” for “Down Syndrome” in this post—-consider the increasingly widespread use of genetic testing even for things like what sport a 2 1/2-year-old should start to train for—and you know we’ve got some seriously difficult questions ahead of us.

Actually, that title should read, “It’s just like I thought it would be,” as said by Jim. It was Saturday night and we were having dinner at a restaurant on Mott Street, in Chinatown in New York. We’d avoided the whole Black Friday business/madness and decided also to avoid the crowds going to see the Christmas tree on Rockefeller Plaza near Radio City Music Hall. We’d spent the day around home, with a late breakfast and midday nap for Charlie, and then a bike ride. And then, we drove to Jersey City and took the PATH train into the World Trade Center site—there’s construction going on all the time and you can see some of it—-and then walked past City Hall and into Chinatown.

Charlie had said no to any snacks, even after an hour-long bike ride, so intent was he for “Chinese food” and “white rice.” I ordered him shrimp chow fun—wide and soft rice noodles—and he sat on the edge of his seat, head turned back towards the kitchen where waiters kept emerging with bowls of steaming this or that. An order of gai lan came first, and dumplings, and shrimp sautéed with vegetables. Jim and I picked up our chopsticks and I put a shrimp and some carrots on Charlie’s plate, which he ignored.

He kept looking, and looking, and the waiters kept bringing out more steaming bowls destined for other tables. Two bowls of rice appeared and Charlie said “no” to them, and went back to looking for his chow fun. It finally appeared, though only briefly, as Charlie ate it quickly and efficiently, and topped it off with two fortune cookies (I gave him mine), and a total of six fortunes (because each cookie had three).

We walked home fast back to the PATH station and then  to the black car. Once home, Charlie said “school bus!”—-his internal clock that says that it’s two days off (i.e., Thanksgiving and the day after) and then back to school was fully in operation. He was expectantly crestfallen when I told him he had two more days—the actual weekend—and maybe that disturbance in the usual way of things was what kept him up till 1am.

We all slept in on Saturday, which was not the best thing to do as Jim was planning for him and Charlie to take to see a basketball game (Seton Hall vs. University of Delaware) with Charlie’s godfather at the Prudential Center in Newark. They had to catch a train at 11:54 AM and Charlie was just stirring at 11:20. We coaxed, we set out his clothes, we mentioned getting to see Uncle Mike, we mentioned the train……..I dropped Jim and Charlie off at 11:53 and saw them running up onto the train platform just as the train pulled in.

Charlie wanted to bring his two Leapsters but Jim suspected that no electronics might be allowed in the Prudential Center. We’d explained this to Charlie, and he left them on the black car’s back seat and sat through more than half of the game (the Hall eeked out a win), much of it with Uncle Mike while Jim went to the concessions stands (Charlie made some requests for extra ketchup). They took the train home and Jim called me (working on my book and much appreciating the “time to myself”) to get out the bikes. As soon as Charlie saw them, he came inside and requested his helmet.

As the weather’s gotten colder, Jim has added some cold weather gear in the form of gloves and spandex skull caps that go over their ears (he got two of each in the same size, one for him and one for Charlie). Charlie pulled on his cap and gloves and then the helmet, and they were off on what turned out to be a really long ride, as requested by Charlie.

“Sometimes he goes so fast, it’s not so easy to keep up with him!” Jim said after he and Charlie came back. And then, “It’s great. I just try to keep up.”

Me too, for sure.

Patternicity.

It’s a term that refers to “the tendency to find meaningful patterns in meaningless noise,” as noted by Michael Shermer in the November Scientific American:

Traditionally, scientists have treated patternicity as an error in cognition. A type I error, or a false positive, is believing something is real when it is not (finding a nonexistent pattern). A type II error, or a false negative, is not believing something is real when it is (not recognizing a real pattern—call it “apatternicity”).

However, as Shermer notes, we don’t have a “Baloney Detection Network in the brain to distinguish between true and false patterns”—-patternicity does seem to be at work when it comes to theories of autism causation. There’s no doubt that some believe that a vaccine really caused their child to be come autistic (a “type I error, or a false positive”), and, too, there seem to be many who don’t believe that there really is evidence refuting a vaccine-autism link (and who do not recognize a real pattern—who are exhibiting “appatternicity”). Shermer cites a paper in the the October Proceedings of the Royal Society B “The Evolution of Superstitious and Superstition-like Behaviour,” by Harvard University biologist Kevin R. Foster and University of Helsinki biologist Hanna Kokko. They draw on evolutionary biology to demonstrate that

whenever the cost of believing a false pattern is real is less than the cost of not believing a real pattern, natural selection will favor patternicity.

Belief in the false pattern of “vaccines cause autism” persists because the “cost” of believing this is more readily grasped, you might say, requires less of certain efforts, than the alternative. There’s a deep-set tendency in us to find, to have meaning, in whatever the world presents to us; to be superstitious (if not a bit paranoid); to see causal associations just because something happens after something else; to assign cause to effect incorrectly.

Lest this seem merely to be yet another “vaccines don’t cause autism” post, I’m tacking on an account of our Thanksgiving and, yes, patternicity.

Patternicity seems another way to explain Charlie’s need to create order, in placing his shoes with the socks inside them perfectly lined up together; in packing his lunch box with a Capri Sun, 4 small plastic containers, and bags of carrots and grapes when he gets home from school; in arranging his CDs on the floor of his room just so. When Charlie was younger, if we so much as moved one shoe or colored block, his agitation was broadcast far, wide, and loudly. These days he’s easy-going if anything gets moved and sometimes leaves it askew, sometimes restores his order.

Charlie having some extra days off from school, I’ve figured that his need for order—for ways to mark and structure the days—increases. He spent a lot of Thursday (aside from loafing on the couch and going on an hour-long bike ride with Jim on a cold afternoon) in his room, trying to stick all the CDs into his old paper pumpkin trick-or-treat bag. There are way too many CDs to fit into the bag and Charlie did not let this deter him from trying to cram them all in with the result that that bag kept splitting and, in the midst of pumpkin pie baking and general Thanksgiving food preparations, I heard the cry of “I need help!” a couple of times.

The pumpkin bag was literally bursting at its seams when I went into Charlie’s room. With three kinds of tape—Scotch, masking, and duct—I tried to patch together the ripped side and the jagged places where CD corners had poked through the candy corn design. Charlie watched me intently and occasionally offered very long pieces of Scotch tape that he’d cut with scissors. At one point, I tried to tape a piece of a brown paper shopping bag onto the pumpkin bag, to make it bigger so all the CDs would actually fit.

“No, no,” was Charlie’s immediate response at my attempt to graft a piece of one bag onto another. Well, of course: What does a piece of brown paper bag have to do with an increasingly dilapidated paper pumpkin trick or treat bag? To tape one onto the other would be to disrupt the order of things—to upset the pattern—-and the cost was too high.

After I’d taped the bag together, I returned to Thanksgiving dinner preparations (now why is it that Americans feel a need to eat a specific menu of turkey, potatoes, cranberry sauce, pumpkin pie?) and Charlie returned to his CD-ordering-and-reordering. When we called Charlie to eat the turkey, we heard “help, fix”: When I went into his room, I beheld the pumpkin bag, so recently, carefully, taped back to wholeness, packed full of CDs with one side ripped open and flapping around.

Apparently there’s a new order to understand here.

Six deep-sea divers have been enlisted by the city of New York to repair a valve at the bottom of a 700-foot shaft in Dutchess County, yesterday New York Times reports. The shaft is located in the Rondout-West Branch tunnel, which is 45 miles long, 13.5 feet wide, up to 1,200 feet below ground” and which brings half of the water supply to New York city from reservoirs in the Catskill Mountains. For more than a month, the six divers have to live

in a sealed 24-foot tubular pressurized tank complete with showers, a television and a Nerf basketball hoop, breathing air that is 97.5 percent helium and 2.5 percent oxygen, so their high-pitched squeals are all but unintelligible. They leave the tank only to transfer to a diving bell that is lowered 70 stories into the earth, where they work 12-hour shifts, with each man taking a four-hour turn hacking away at concrete to expose the valve.

And more about how the divers work:

Three divers at a time climb into the steel bell, an orb that is lowered down the shaft for 20 minutes to reach the pumping equipment in the tunnel. The bell is tethered to a bundle of cables carrying air, communication lines, electricity and water. Each diver works for four hours and rests underwater for eight before returning to the tank at the surface, where 32 more employees of Global Diving and Salvage, the Seattle company running the project, pass meals, clothes and books through an air lock.

In the saturation control room, Patrick Boyd, a life-support technician, monitors the divers’ air on a panel of screens, one of which reads 2.26 percent, for the amount of oxygen. While underwater, divers often get more oxygen in their mixture to keep them alert. John Lapeyrouse, a dive supervisor who is one of the few who can understand the helium-riddled voices, one of the side effects of what is called “saturation diving,” talked to Mr. McAfee as he worked the other day.

Apparently, the divers can ” request whatever food they like, including steak and fresh salads” but because “the air pressure in the tank dulls the taste buds,” they have to add a lot of “Tabasco, salsa and jalapenos.” And when their work is done, they must “remain in the tank for a week to gradually wean themselves off helium.” Says Robert Onesti, who’s running the project for Global Diving.

“It’s not for everybody. It’s heavy construction work, and it’s deep.”

You can say that again: I’ve come to love swimming thanks to Charlie, but dislike going underwater. Charlie, on the other hand, seems to thrive on being in deep water and, indeed, being under it. Often when we swim at the YMCA pool, he positions himself just where the water is almost over his head, and crouches down under and then propels himself out, and then ducks down under, jumps up out—-repeat, repeat, repeat.

Before he goes to sleep, Charlie always wraps his feet and legs tightly in at least two fleece blankets: Deep pressure seems not merely comforting, but essential, to his system. I’ve said it before, but I don’t know what he, or we, might have done in the past before the invention of polarfleece. And I’ve given up getting potentially scratchy sweaters for Charlie and shirts with stiff cuffs and collars: If he needs to wear those when he’s older for special occasions, he and we can deal.

Who knows but Charlie might, indeed, like scuba diving (I wouldn’t be the one going under with him, that’s for sure)—being under so much water— living underwater for a couple of weeks in a pressurized chamber might (who knows, again) appeal to him.

There’s something out there that any of us, with our diverse talents, can do, even if you have to go to the bottom of the ocean to find it.

I think this is, potentially, the perfect t-shirt for Charlie.

Yes, I’ve ordered him one.

Towards the end of a review of Dr. Paul Offit’s book Autism False Prophets: Bad Science, Risky Medicine, and the Search for a Cure in today’s Washington Times, Malcom A. Kline writes:

This writer recently heard a social worker warn the parents of autistic children to avoid certain doctor’s offices “where 90 percent of the children come out with an autism diagnosis.” What is even less widely known, though, is the degree to which the autism spectrum has expanded on the other end — the more severe cases.

Now what’s going on at those “certain doctor’s offices”? Is it that said doctor is particularly attentive to parents seeking an autism diagnosis for a child, as they know that such a diagnosis can come with more services? Is there some…….irresponsibility?????…….in possibly over-diagnosing autism? Is this doctor simply more knowledgeable about identifying autism and therefore diagnosing it better?

Connecticut’s Pilot Program For Autistic Adults which “adults of normal intelligence with diagnoses on what is called the autism spectrum” is in danger due to budget cuts. Today’s New Haven Register reports that Governor M. Jodi Rell has ordered all state government agencies to submit proposals that will cut up to 10 percent from their upcoming budgets. Prior to the program’s inception in 2006 (with $1 million from the state), no services were provided to autistic adults of normal intelligence (adults with diagnoses of both autism and mental retardation did receive services). The program received an additional $500,000 in July 2008 and is financed through June 2009. Currently, 52 people with autism and Asperger’s syndrome in in the greater New Haven and Hartford areas are served under the progam and it’s changed their lives, as the New Haven Register reports:

After her son became too old for the public school system, Eileen Horan paid for him to attend a private vocational school for two years, but the cost became unbearable and Paul had to leave. He spent his days alone in his apartment, unable to find a job. He had no friends and nothing to do.

“When he would get bored, he’d get depressed. And then he’d get meltdowns — just thinking all bad things,” Eileen said. She said it’s common for individuals with Asperger’s syndrome or autism to have “meltdowns,” where they have suicidal thoughts or urges to hurt themselves.

As the sole provider for Paul, Eileen wasn’t able to get away, even for a weekend visit to her daughter’s home out of state.

“My whole time was just spent helping Paul shop and cook. It was just really, really rough going,” she said.

According Rosenwald, nine out of 10 adults on the autism spectrum are unemployed or underemployed. Most live with their families, “if they’re fortunate enough to have families that will keep them.” When parents get too old to care for them or die, they often end up in institutions or on the streets.

Living on the streets, autistic adults, whom Rosenwald characterized as “very gullible and very much the victim,” are often sexually abused.

“We hear one horrendous story after another,” Rosenwald said.

When living at home, autistic adults often spend their days home alone watching television and getting “seriously depressed.” This year, three young adults who belonged to the Autism Spectrum Resource Center committed suicide.

At last Friday’s IACC meeting, I heard Kathy Reddington, Autism Coordinator for the Division of Autism Spectrum Services, speak. She noted the impending budget cuts and also that they’d keep trying to do what they can.