An expecting mother wrote this yesterday on BabyCenter:

…..more than anything else that could go wrong with this pregnancy, I am more worried about my child having autism than anything else in the world.

These causes, many reported by the popular media, and without valid evidence to back them up, are listed:

- Vaccines, especially with thermisol, the kid getting them all at once (flu shot, MMR)

- Smelling cleaning products while pregnant (Lysol, etc.)

- Advanced maternal age

- Having autism in your family

- Heat, hot baths, hot showers

- Worrying and stressing

- Rainy climates

The UC M.I.N.D. Institute’s MARBLES (rs of Autism Risk in Babies—Learning Early Signs) seems to be referred to, though I don’t think the “smelling” of cleaning products during pregnancy is specifically mentioned. The study linking rainy climates to autism rates is noted—a study about which there’s doubt as to “whether the paper deserved to be published and reported,” as stated in the Times Online. Older parents, fathers as well as mothers, have been linked to autism, and there’s a number of studies for genetics, for autism being “in the family.”

But “worrying” and “stressing” and hot showers and baths?

Will we next be hearing about whether worrying about autism be linked to causing autism?

Yes, the numerous claims that vaccines can be linked to autism have been gnawing away at the fears of parents-to-be even though vaccinations do not cause autism.

Hope that the expecting mother on BabyCenter might, instead of fearing autism, learn about it, learn that there’s a lot that you can do to help a child, and know that life raising an autistic child—-life raising a child—-isn’t what the popular media makes it out to be. It may be a different parenting adventure than one might think—for us, for sure, it’s been full of much that’s unexpected, and more goodness and love than I could ever have bargained for.

Seems a pity that, on seeing the words “top 10 unfounded health scares,” the first thing I thought about was……….vaccines and autism.

Many speak of a “debate” about an alleged vaccine-autism link and that there’s a “controversy” brewing here, but it’s a false controversy. 2008 saw the publication of more studies refuting a link, and yet there’s been a call for more studies—-among the $1 billion in research initiatives noted in the Strategic Plan of the IACC is an item about the “different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups”—so it’s not as if this particular topic is going to go away.

Sometimes, one starts to wonder, will this particular topic ever go away? How many studies will it take to convince those who believe so very much that there is a link, that there really isn’t one?

Of the 3,393 or so posts I’ve written here, hundreds and hundreds and hundreds have been on vaccines. In the course of writing those posts, and reading about vaccines, about autism, about vaccines and autism, and about what people think about vaccines and autism and about why people think there’s a connection between their child becoming autistic and vaccines, the one thing I’ve mostly been left with is a sense of need—-a sense of needing to know—-of searching for the one answer about why and how this happened—-of needing to do the right thing. In an age when every single step of child rearing, from pre-conception to pregnancy, from labor to birth, from infancy to the first birthday to toddlerhood, from preschool to elementary school to hitting the double digits (10 years old!) to (gasp) adolescence, is not only scrutinized—-is written about in books, magazines, and websites galore, parents seem more and more haunted by the need to get it right.

And when one’s child is disabled, that need seems only to get compounded, as parents (myself included) seek “the best,” or the “most appropriate,” or the “highest quality” services, teachers, therapists, and programs for their child. As much as you know—as I know—that you and I did everything we should and could have done for our child, still that worry nags and lingers, that maybe you and I could have done something different. On the one hand, I’ve gotten pretty good at ignoring stares from strangers; on the other hand, there’s always an unspoken fear that maybe I am doing something wrong; that I’m a bad parent. Why else did those “autism is just another excuse for rotten parenting of rotten kids” remarks by Michael Savage and Denis Leary earlier this year strike such a note earlier this year?

What if we really are such bad parents; what if the likes of Savage and Leary are right?

And it’s that voice-in-the-back-one one’s mind, it’s that twinge, that “maybe” that has something to do with why, scientific evidence to the contrary, the notion that vaccines are somehow linked to autism just won’t die.

So here’s a possible resolution for the new year: How can we detox ourselves from talking about the hypothetical vaccine-autism “link”?

The American Council on Science and Health (ACSH) has issued a list of Top 10 Unfounded Health Scares of 2008 and take a wild guess about one item, specifically #8……. it involves autism and a word that starts with a ……………………..v.

Stumped?

Hint: Something involving “greening.”

Hint: Something involving a certain former MTV starlet.

Yeah, it’s something that gets brought up too much in discussions about autism, namely, the hypothesis, unsupported by the scientific evidence, that vaccines can be linked to autism.

Here’s the ACSH’s bottom line:

Not only are childhood vaccines safe, they are necessary to protect both individual children and the larger population from dangerous diseases. Despite the ever-present nature of this scare, parents should trust their children’s pediatricians and comply with the recommendation that every child be fully vaccinated by the age of two.

And how about a resolution in the new year to start moving on from this issue which has captivated so much of the attention and energy in discussions about autism?

We do not, as I’ve noted from time to time, have a TV set—a fact which, when I happened to mention it to my students a while back, completely shocked them. “What do you do?” they sputtered. The class was my Elementary Latin class and it was one of those “teachable moments” when I could have launched into a discussion about “how did the Romans spend their free time” and “what about those giadiator fights.” It was the week before exams and we had so much to review and so I let the moment past, and got back to the fourth conjugation of verbs.

Apparently I’d made an impression on my students, as they brought up the not-having-a-tv business a couple of times (mostly, I suspect, to avoid having to think about that inevitable entity, the Final Exam). “I have to have TV,” one student commented. And another: “Dr. Chew, doesn’t your son want it?”

My answer further confounded things. Charlie, as I’ve noted before, is not a TV watcher or, for that matter, a video watched, or a player of video games, or a player of computer games, or a user of the computer in general. I guess it is a sort of a stereotype or autism myth, or possibly even an autism reality, that autistic children like all things electronic. (We know a boy who, in his earlier childhood, had a total fascination with electric cords and outlets: Oh yes, dangerous!) Charlie appears to be in the (very) (small) percentage of children to confute the stereotype.

Charlie usually tells me “I need a break” after a maximum five minutes at the computer and, in the good old days when we had a TV set and cable (because we actually do own a TV set, but have not bothered to get cable), Charlie mostly liked to watch videos. Not just any videos, of course, but about 4 or 5 certain ones of The Purple One, and a few select Wiggles ones too. An attempt to switch to DVDs was only partially successful, Charlie having an unshakeable preference for the larger rectangular objects with that visible strip of tape (Charlie having a longstanding preference also for cassette tapes, but that’s another story). By the time we cancelled Comcast, the only thing that was being watched on the TV was some ESPN by Jim and Charlie glancing occasionally on.

All of this is to say that I am indeed going to miss seeing Jenny McCarthy, in her capacity as Generation Rescue spokesperson, on Larry King Live tonight. Having, as you may also know, written kind of a lot about McCarthy and her stance about, or rather against, vaccines, I kind of have a feeling that I’ve some idea of what she’ll be saying. Courtesy of my email inbox, I’ve been sent a summary of the show:

…….hear the facts tomorrow night as Larry King asks the tough questions on:

* How to vaccinate while lowing [sic] the risk of children getting autism
* How to effectively treat and prevent autism, ADHD and other neurological disorders and chronic illness

In-ter-est-ing. Sounds like there’ll be some references to how a parent can change the schedule of vaccines (despite the fact that vaccines don’t cause autism). Also, sounds like Generation Rescue is extending its concerns/campaign/rescue operations beyond autism, to ADHD and “other neurological disorders and chronic illness.”

Though what if autism, ADHD, “other neurological disorders and chronic illness,” still exist even after vaccine schedules are changed? What’s to be done—change the schedule again? Admit that vaccines have been, and are becoming, a sort of sideshow in the larger discussion about autism, and a topic for TV talk shows and celebrity magazines—-something that distracts us from the really pressing, urgent questions and concerns regarding autistic children and adults, like how to create and maintain good schools with good services, trained aides and staff and therapists, jobs that draw on people’s talents and choices for housing, and much more?

Whatever gets talked about on Larry King Live tonight, I suspect it won’t be enough to convince me to call up Comcast so we can watch TV.

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.

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?

Jim noted to me last night that the stock market is now pretty much back to where it was around the time Charlie was born.

Having spent the past ten days writing about vaccines and autism for the Science Blogs Book Club, it’s occurred to me that the whole vaccine-autism issue has been part of, and even dominated, public discussion about autism for most of Charlie’s life. It was in 1998 that Dr. Andrew Wakefield announced that he had found the cause of autism—-the MMR vaccine—and launched far more than a thousand discussions, diatribes, and disputed claims.

10 years, 11 years and counting of a good life with our boy.

Here’s a familiar one for parents of autistic kids:

Doctors and Patients, Now At Odds, the July 29th New York Times’s trumpets. Jim and I  do have our arsenal of just really terrible, not happening, not helpful, stories with pediatricians, child psychiatrists, neurologists, an immunologist, the psychologist who was on the team that diagnosed Charlie, and the ENT who told not-quite-2-year-old Charlie “adios.”

Then there’s been the pediatric neurologist we drive almost two hours a couple times a year to see. He listens, he observes, he and Jim and I have a conversation (he inevitably mentions his own kids), he fiddles and gets distracted and asks questions and we get distracted; he makes a passing comment that’s just enough outside the box so we know that he’s got his eye and mind on Charlie. I’m not sure that everyone would like to see this neurologist, but it’s been several years we’ve taken Charlie to him and it’s been a good interaction, and a relationship.

But:

About one in four patients feel that their physicians sometimes expose them to unnecessary risk, according to data from a Johns Hopkins study published this year in the journal Medicine. And two recent studies show that whether patients trust a doctor strongly influences whether they take their medication.

The distrust and animosity between doctors and patients has shown up in a variety of places. In bookstores, there is now a genre of “what your doctor won’t tell you” books promising previously withheld information on everything from weight loss to heart disease.

notes the New York Times. Perhaps it’s no wonder that parents of autistic children may have an unconscious aversion to doctors delivering expert opinions; doctors once (and more recently, this talk show personality) said that we caused our kids to become autistic.

Now, too often, it seems, parents of autistic kids are doing a U-turn out of the “traditional” doctor’s office and heading into the often kindlier, or less clinical climes ,of alternative health practitioners. I grew up going to a big California HMO for all of my appointments and a nice Victorian house with lilac and aqua blue draperies, tasteful flowers and a nice shelf of the latest autism and “is this my kid?” sort of books, and herbal tea, can seem not only a welcome relief, but what it should be like to see the doctor who’s supposed to be taking care of one’s precious child’s health. These days, doctors and what some call the “medical establishment” seem to have no choice to go on the defensive about immunizations and the latest public health worry, be it cell phones and cancer to plastic toddler toys.

Maybe it’s not DAN! doctors that should be talked about, but DIY doctoring.