Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

1049 cases of measles have been reported in England and Wales so far this year, the highest number in 13 years and exceeding the number on 2007, when there were 990 case. Today’s Guardian reports that health officials are seriously concerned about a possible epidemic of measles of between 30,000 - 100,000 cases. Measles has been spreading more easily because of the “relatively low uptake” of the MMR vaccine in the past decade:

The fall in uptake of MMR was triggered by now-discredited research claiming there was a link between the jab and autism.

Health officials in the UK are planning a mass vaccination program in some areas. The Daily Mail quotes Guy Hayhurst, consultant in public health at a local Primary Care Trust, as saying that they have identified 10,534 children who have no record of full MMR immunization.

Here in the US, measles cases are at their highest level in a decade.

It’s starting to seem more than unfortunate and regrettable that the theory of a connection between the MMR vaccine and autism—the so-called “leaky gut theory“—was proposed back in 1998 by Dr. Andrew Wakefield.

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?

Well, here’s a headline that hasn’t been heard so much of late, it seems:

Immunization rate among children rising (from MSNBC via WTHR TV)

According to a recent CDC survey, 77 percent of children have been fully vaccinated in the schedule of recommended vaccines, while less than 1 percent of children had received no vaccines by age 19 to 35 months. Vaccination rates among children are “at or near record levels, with at least 90 percent coverage for all but one of the individual vaccines in the recommended series for young children.” In Indiana, 94 percent of public schools and 68 percent of private schools have complete immunization data for the 2006-07 school year, an increase from last year.

Sue Goebel, a nurse with the Delaware County Health Department, notes that more parents are choosing to space out the vaccinations for their children, though there’s no data to suggest why this should be done. Says Goebel

“It gives moms a little more control”

—-it gives parents the feeling that they have some right to choose.

And the need to have that kind of choice, or feeling that you have that choice: For doctors, researchers, scientists, medical professionals to understand that need — that might, of parents needing to feel in control—it might make a big little difference.

Regarding yesterday’s Today show piece on vaccines, autism, and Dr. Paul Offit:

Kudos to Dr. Nancy Synderman, especially at the end of the piece when she made it very clear to Matt Lauer, there’s no controversy about vaccines and autism. Vaccines don’t cause autism. [ABC News has a story on Dr. Offit that emphasizes how "ugly" the discussion about vaccines and autism has become: It's entitled "Death Threats, Hate Mail: Autism Debate Turns Ugly: Vaccine Researchers, Autism Community React to Account of Death Threats and it seems to me that we really ought rather to keep discussion focused on autistic persons.]

When a cameraman filmed Charlie a couple of weeks ago for the Today show, Charlie rode his bike in circles back and fort, back and forth. Jim helped him navigate a tight turn and by the end of it, Charlie was smilng ear to ear and pedaling hard and fast. On the Today show, only Charlie’s pedaling legs and feet were shown so you will have to take my word for it: Charlie astride his bike is a joy to behold.

Charlie’s often most at ease when he’s in motion. Jim met Charlie at the bus on Thursday and they kept moving. They went to the bank and the cleaners. They went to a park and Charlie ran about and Jim passed him a basketball to catch on the bounce. They ran around some more in brisk fall weather before driving into Jersey City to meet me at work.

On a suggestion from Jim, Charlie’s teacher has been having Charlie go outside the classroom at fairly frequent intervals to walk and, indeed, wake up: Charlie’s classroom is smaller than it was last year and its windows look out onto a hallway, rather than outside. He’d been having trouble staying awake some days—one day he fell asleep just after 9am and nothing could wake him till 11.30am—we’ve done everything we can think of (plus) to help him get to sleep earlier so he can get up earlier to catch a 7.25am bus. Regular doses of getting up and out of the classroom into the fresh air have helped some.

Charlie has a couple inches on me now. He seems to have grown a bit taller just in the past week and to be, of late, in a continuous growth spurt. Hours of swimming and bike-riding have given him an athletic build. He’s the youngest in his class—some of the other students are nearing 13 years old—but the biggest and when he gets upset (it happens) what to do to help him calm down is not as obvious or, I’ll even say, as easy.

Nonetheless—one point I’ll diverge from Dr. Synderman on—I don’t feel “desperate” about needing “answers.” Often the best source for an answer to how to help Charlie is Charlie himself. It’s not about saying “he must learn to sit still in this chair for X period of time” or else, but that, well, maybe he learns best when having to sit in a chair is regularly intermixed with running around in the fresh air.

The vaccine-autism issue aggravates because it diverts attention from autistic children, from autistic individuals, and fixates on what (despite more and more evidence to the contrary) some believe is a cause of autism. It’s been a long, confusing, worrisome, tiring journey since Charlie was diagnosed with autism in 1999 and I’ve stumbled and often in trying to help Charlie. But what’s so very much for sure is that my life is better and just plain good with Charlie, and I’m grateful he and Jim and I’ll be walking on the road together for years and years to come.

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.

On Newsweek: Three videos with interviews with Dr. Paul Offit, chief of the division of infectious diseases at the Children’s Hospital of Philadelphia and a professor of pediatrics at the University of Pennsylvania medical school; Robert Krakow, a New York attorney who’s the father of an autistic son and who is representing more than 75 families who believe a vaccine caused autism in their child; and myself. The videos are below or go here to Newsweek.—— And here’s a profile of Dr. Offit by Claudia Kalb in Newsweek.

“For families struggling with autism finding the latest treatments is a top priority,” begins an October 14th WCBStv story about “a controversial approach” that “is making headlines” (which, of course, has nothing to do with the actual efficacy of said approach). The approach is hyperbaric oxygen therapy and the doctor is Dr. James Neubrander, whose website refers to autism as the “treatable untreatable disorder!.” A hyperbaric chamber will set you back $21,000, WCBStv notes. Dr. Neubrander says that HBOT treats “decreases inflammation” and somehow altars the brain chemistry of autistic children and, while there’s no studies to back it up, he says:

“No, the studies are not there, but it doesn’t invalidate what we see. The studies are coming.”

It’s a familiar refrain about how “studies” and especially studies “in the future” will provide proof that some alternative treatment or other does what it it claimed that it does. Dr. Mark Geier and David Geier are also members of what some call the “autism treatment subculture” and continue to publish studies seeking to offer evidence for claims of a vaccine-autism link. At yesterday’s Pathophilia, the metabolite values used by the Geiers are under question—and this is important, as the Geiers seek to show that “levels of these metabolites—as markers of oxidative stress and “decreased detoxification capacity”—in children with ASD are significantly different from those in children without ASD.”

Pathophilia examines the figures by the Geiers and supplied by their cited references or other relevant sources. Details are here; here’s the conclusions:

Geier et al present metabolite values in children with or without ASD that are questionable. In particular, some values measured by Geier et al—for example, cysteine (whether total or free), oxidized glutathione, and total sulfate—are considerably different from those published elsewhere, including those values obtained or calculated from references cited by the authors. Other values from ASD or neurotypical subjects—for example, reduced glutathione and taurine—are within the reference ranges published in the literature.*** Only in the case of plasma free sulfate was the mean level in ASD subjects outside of the normal range provided by the substantiating literature.

Before any diagnostic or treatment recommendations can be made on the basis of this study (or any study, for that matter), results must be shown to be reliably reproducible by a different set of authors using more than one experienced, reputable laboratory, and any discrepancies between control values and those in the literature must be noted and explained. It should also be determined whether tighter controls, particularly in the form of age matching between autistic and neurotypical subjects, should be performed when comparing these metabolite levels. Last, the significance of any mean values in autistic children that lie within the published reference ranges, although they may be statistically different from a given study’s control values, must be considered cautiously.

In other words, of the metabolite values that the Geiers say are in autistic children, most do not match up with those found in other studies, including the studies cited by the Geiers. Does this study, then, have any application beyond itself—-or, what can do you with a $21,000 HBOT chamber, if you’re not able to cure autism with it?

My main priority as the mother of an autistic son is not to find those “latest” treatments, but to ensure he has the appropriate, and the best possible, school, services and supports that he needs to help him move forward into the future.

No, we don’t “got milk” here; my small family all got sick this week; we’ve always got hope.

• Got Autism? (asks PETA)
  PETA puts up a billboard in Newark NJ and takes it down.
• Is That a Tattoo With……Your Mom’s Cell Number?
  Of Safety Tats and other ways to keep a child safe.
• McCarthy’s, Er, “Autism” Pole
  Jenny McCarthy puts a stripper pole in her son’s room.
• What! No Hoodies?!!!!?!!!?!
  Imagine life without a hoodie for warmth and to block out noise—no thanks.
• Beware Jenny McCarthy and Her Angry Mob
  She’s got a mob (of “mother warriors,” presumably”—quite an image.
• Autism Genes, Math, and Music
  The genes that are thought to cause autism may also give mathematical, musical and other skills to those without
• Mental Health Parity Bill Passes
  Included in the economic bailout bill signed by President Bush last Friday, October 3, was a new law requiring equal coverage of mental and physical illnesses.
• Here We Go Again: Family can sue vaccine maker, Georgia court rules
  e decision allows Marcelo and Carolyn Ferrari to proceed with a civil lawsuit against vaccine maker American Home Products Corp.
• An Imitation Deficit
  A study by researchers at the UC Davis M.I.N.D. Institute suggests that autistic children have “impaired imitation skills” because they spend less time looking at the faces of people who are modeling actions or skills.

Three more days to go of the Science Blogs Book Club. Much talk of framing vaccines, framing autism, and more responses from Dr. Offit about his book. And today, I talk about myth, religion, and Jenny McCarthy as a, and perhaps the, false prophet of autism.