Brains and Genes, Vaccine Court, Mercury, Myths, Fights (or Feuds), A Good Book: What I Did in June

While I was sitting here in New Jersey (not near Northvale, but just up the hill from the New Jersey State Auto Auction on Sip Avenue off of Route 1 & 9, just past the steel-grid shadows of the Pulaski Skyway, the long horizontal line on this Flash Earth map), my fine friend McEwen was away in her native land on the other side of the Atlantic and I eagerly await many a blogpost about the adventures that did ensue. In the meantime, she has given me an assignment—nay, a “mission”—-”to summarize blogs and news items for the last 20 days!” Such a Herculean task—-”all the news in the autism world for the last 20 days, summarized!”—-I am not sure I can do adequate justice to, but I will try, or rather I will anthologize, anthology being from the ancient Greek words anthos, “flower,” and logos, “gathering, collection.” Herewith a small garland.

First: Yes, that is the same word logos that also means “account” and “reason” but the definitions of certain ancient Greek words can be as elusive to pin down as the meaning of “autism,” and What is autism was the title of a June 9th post on two talks given at the Eden Institute Princeton Lecture Series: Neurologist Martha Herbert spoke on whether autism is a “brain disorder” or a “disorder affecting the brain” and geneticist Michael Wigler spoke about sporadic and inherited autism.

Herbert’s and Wigler’s lectures, the one on biomarkers and the environment and the other on de novo mutations in genes, are summarized here, and whether biological topics and the environment or genetics ought to be the primary focus of autism research was a frequently referred to dichotomy in this post, which appeared on June 17th, Father’s Day. The post was entitled A Sad Story on Father’s Day: The Wright Family Feud, as it begins by citing a June 18th front page New York Times according to which Katie Wright, National Autism Association (NAA) and Safe Minds board member and the mother of an autistic son, Christian, says that she has not spoken to her father and co-founder of Autism Speaks, Bob Wright, since he and his wife Suzanne “repudiated their daughter on the charity’s Web site” on Saturday, June 2nd. The post itself contains an exchange that illustrates another dichotomy in autism discussions, between acceptance and cure.

Some might say that “lively” was a bit of an understatement for that thread of comments, but this was June 2007 and June 11 was the first day of the 12-day hearing of “vaccine court,” in which 4800 families of autistic children are plaintiffs claiming that their child’s autism was caused by a vaccine. The hearings began with 12-year-old Michelle Cedillo of Yuma, Arizona, wheeled into court in Washington, D.C., by her parents, Theresa and Michael Cedillo. Not surprisingly, the hearings led to a great deal of blogging filled with feeling as well as science. For myself, the vaccine court hearings were not so much about pinpointing the cause of autism in court: Why this urge to know?

Who do you believe? What do you believe? If you know some theory about autism, some “new treatment,” some educational program, is “supported by science” are you more likely to believe it; to trust it; to put your dollars, time, heart and soul into it? When what’s at stake is the development, the day-to-day functioning, the too-unknowable future, of your autistic child—who may be struggling to do everything, it seems—emotions (love especially) can color a parent’s view of what to do, of what one thinks, of what one sees.

I wrote that at the start of a June 30th post, Myth, Science, and a Trial: Vaccines and Autism, and two essays, by journalist Arthur Allen in Slate (June 29th) and by anthropologist Roy Richard Grinker, author of Unstrange Minds: Remapping the World of Autism, in the Wall Street Journal (June 30th), step back and ask some questions that consider what the phenomenon of the vaccine court and of the belief that vaccines cause autism, as well as other beliefs about autism causation and treatment, says about our culture’s ways of thinking, and of knowing. From Grinker’s op-ed:

Over the last three weeks, I listened to testimony in the first of nine test cases in the U.S. Vaccine Court (Cedillo v. Health and Human Services) considering the question of whether a mercury-based vaccine preservative called thimerosal (which used to be in many vaccines), or the measles-mumps-rubella (MMR) vaccine, or both together caused autism in Michelle Cedillo, the plaintiffs’ daughter.

I heard some of the world’s leading experts on autism, immunology and vaccines testify that there is no biological model to account for an autism-vaccine connection, no scientific evidence or credible studies linking the two. They argue, instead, that autism is largely genetic.

And yet just last week, Robert F. Kennedy, Jr. wrote on The Huffington Post that there are “hundreds of research studies” from a dozen countries providing “undeniable” proof that vaccines cause autism, and Rep. Dan Burton (R., Ind.) wrote a letter to the president of NBC claiming there was increasing evidence that thimerosal has contributed to an epidemic of autism. Scores of Web sites and autism advocacy groups are convinced of the connection, and the vast majority of scientists and physicians can’t understand why. How is it possible that there could be two such contradictory explanatory models?

The justices presiding over Vaccine Court are being asked to believe in an elaborate set of arguments. To find for the plaintiffs, they will have to decide that the preponderance of the evidence suggests it is more likely than not that there is a true increase in the incidence of autism linked to the increase in numbers of vaccines children receive, thimerosal can compromise the immune system, the immune system would therefore be vulnerable to the measles vaccine virus, the vaccine virus can cause a persistent infection in the gastrointestinal system, the infection can cause autism—and that all of these things occurred in the case of Michelle Cedillo.

The scientific testimony has been devastating to the plaintiffs because the recognized experts on autism, vaccines, and immunology do not support even one of these premises, let alone a linkage between any of them. The only thing the government and the Cedillos agree on is that Michelle Cedillo has autism.

Scientists hope that a decision against the plaintiffs will slow down the antivaccine movement, and parent groups hope that a decision for the plaintiffs will prove that the government’s vaccine program has poisoned a generation of children. My own view, as a parent of a child with autism, and as someone involved with epidemiological research on autism, is that neither vaccines nor anything ever contained in vaccines is related to autism or the increase in the prevalence of autism.

……..

We should not expect too much out of this trial, or the next eight. The scientific community and antivaccine parent groups will each continue to look for clues under their own lampposts, because that is where the light is. But we should pay careful attention to this conflict. The antivaccine movement may be evidence that public confidence in science is eroding, which means that public health is at risk too.

I ended my post by writing:

What troubles me about these “dialogues” in which the parties have already made up their minds is that, while there is much talk about “autism” and its “causes,” there is little talk about autistic persons, about how to help autistic children in concrete and direct ways, about how to advance the idea that life with autism, rather than a modern tragedy brought on by modern medicine, is all about learning to look where the lamplight does not shine, to see that what seems dark is threaded through with seeds of light if we can turn our eyes aside for a moment.

A number of commenters singled out the phrase “concrete and direct ways” as regards how one can “help autistic children”; I have been thinking of it ever since. What is needed?

Huge question, maybe rather deep for June which is technically the beginning of summer, celebrated by Charlie and me by starting to mainpool and swim inclusively. June also marked the transition for Charlie from his regular school year and classroom and teachers to summer school, a passage marked by anxiety, fretfulness, and a stomach bug which became apparent at precisely 1.30am on June 27th, a Sunday. After days of rest (that is, sleep, Charlie thus providing his parents with time to “get things done,” which means we both sit in front of our computers and whittle away at long-term writing projects), Charlie woke up on Wednesday, ready to meet the yellow school bus. I, while I style myself an involved autism mother, had not made that one phone call to determine if Charlie would ride his bike or take the bus to school. We had been sent a slip saying “wait for the bus at 8.35am,” but the school had it down somewhere that Charlie would be riding his bike to school; I,not having made that call to determined which way was the right one, drove off to Jersey City to work leaving Jim to have to hail down a confused (and very kindly) bus driver, so that equally confused Charlie could get to summer school. The issue was resolved; pleasantries exchanged; boy restored to grinning cheerily from the window of his yellow school bus.

I think that is the right image to end this June anthology with, along with something good to listen to while you ready the barbeque and the sparklers for the Fourth: Be sure you tune in to NPR on July 4th, as Diane Rehm is rebroadcasting her June 25th interview with Ralph Savarese, father of DJ, who wrote the last chapter of Reasonable People: A Memoir of Autism and Adoption—a logos of hope, and love, and feeling, and poetry, and family that is truly something to get out the fireworks for.