Wednesday, January 14, 2009

Stuck (a.k.a. A Status Report on the Autism Knowledge Revolution)

Geraldine Dawson, the newly minted Chief Science Officer for Autism Speaks, has recently penned a public letter outlining the many achievements that were made under the banner of autism science during the year 2008. Although one might suppose churning out such letters is a necessary condition of her job (one should probably view all artifacts coming out of Autism Speaks in the light of being a necessary condition of the job), Dr. Dawson manages nonetheless to prove the aptness of her appointment by tackling this particular task with some gusto and delight. Her catalog of recent advancements in the areas of autism research and treatment is both lengthy and wide ranging, and her tone throughout the roll call of progress remains unflinchingly upbeat and enthusiastic. It would seem 2008 was a decidedly exceptional year in the world of autism science, so decidedly exceptional that I found I could not help but break out into hearty peals of laughter while reading through the letter’s contents.

To give just a sampling of the many paradigm-shifting discoveries that have been tickling Dr. Dawson’s scientific fancy over these past twelve months, I would note that in the area of genetic research she begins by lauding some recent reports involving aspects of chromosome 16, which in 2008 apparently became only the twenty-third human chromosome to be implicated as the presumptive locative cause of autism. And related to this insightful finding (well, related by means of being mentioned in the following paragraph) Dr. Dawson extols some other recent research regarding the CNTNAP2 gene, which as it turns out has also been implicated as the presumptive locative cause of autism, but in an entirely different way. Not one to be embarrassed by such abundance of riches, Dr. Dawson turns her acclamatory sights next on an entirely different class of explanatory breakthroughs, that is to say those bountiful number of environmental factors that have been significantly correlated to autism sometime during the past calendar year: the mother’s use of epileptic drugs during pregnancy, premature birth, prenatal exposure to high levels of pesticides or insecticides, seizures during infancy, living in regions that experience high levels of precipitation, and being born in April, June, and October. (And lest some wag suggest I merely fabricated that list for the sake of literary hyperbole—or perhaps out of an uncontrollable urge to poke some fun—let me assure such wag I possess not nearly the degree of orneriness or creativity to do any such thing, let me assure such wag I merely plagiarized the list from an unattributed source.) Having announced the solution to autism’s puzzle twice over now, Dr. Dawson nonetheless eschews any resting on autism science’s overflowing laurels, but proceeds thereafter to a garnering of the trifecta, quadfecta, and many fectas well beyond. She trumpets for instance the foremost importance of the case of Hannah Poling, mitochondria and multiple vaccinations, proving beyond any reasonable grain of doubt that 2008 must have been indeed one uniquely incredible year in the area of autism research, seeing as how even courtroom drama and bad journalism were able to lend a helping hand. And more kudos are then offered up for the invaluable knowledge gained through the latest incarnation of the neuronal TSC model of mice, Dr. Dawson hinting thereby that a complete mapping of autism's biochemical mechanism remains as imminent as the shake of a rat’s tail.

The drum roll of incisive achievements bangs on and on; but for the sake of brevity (not to mention some sanity), allow me to present the remainder of the bangs as cleanly as I dare: secreted amyloid precursor protein-alpha, maternal antibody reactivity, synaptic abnormalities and hippocampus inhibitions. Ah yes, what an exhaustive and exhausting list Dr. Dawson has managed to compile! Really, I could hardly catch my breath. Indeed, by the time I finally reached the end of her expansive missive and its much belated sign-off (well after midnight, I can assure you), I had become absolutely convinced that there must have been no essential autism research advancement overlooked, no Nobel Prize worthy stone of discovery unturned in Dr. Dawson’s bell-ringing, end-of-the-year review. Alas, that conclusion proved to be somewhat giddy and premature, for when I checked the letter again the following day, perused it in the sober light of morning—not once, not twice, but indeed three more times—I discovered with no small sense of dismay that the kitchen sink never received one mention.

Maybe next year.

If someone were to publish a particularly difficult mathematics conjecture and were to advertise for solutions, and this challenge were to be greeted by seven answers the first year, twenty-six the next, a hundred and seven the year after that, and four hundred or so the year following, it would take a distinctly misguided form of intellect to characterize such results as progress. Only one lick of common sense would be enough to expose such a billowing set of solutions as not the harbinger of any impending answer, but instead the unmistakable sign that the problem has not been in the slightest understood. But of course I must be forgetting the context of this analogy; I must be forgetting that if there is any concept for which Autism Speaks is the least likely to provide some funding, the least likely to bequeath one of its generous research grants to—or to install a Chief Officer for—that would have to be the concept called common sense.

Never mind that the exact same form of Dr. Dawson’s letter would have been just as serviceable in 2007, or in 2006, or in so many of the years prior to that, with only a small smattering of detail substitution required to invoke the earlier date (different chromosomes, different environmental factors, different biomedical markers, different mice). Never mind that Dr. Dawson and her successors will no doubt be penning nearly identical letters again at the end of 2009, 2010, and for countless years beyond that, with each new pronouncement distinguished only by a similar set of substitutions. No, never mind all that, for that would be a mere caviling over minutiae, that would be a quibbling about some absurd trivialities—and besides we have the evidence of Dr. Dawson’s unbridled enthusiasm to assure us that 2008 was an annum entirely different. No, I would much rather grant Dr. Dawson all her ballyhooed triumphs, I would much rather take her at her gustoed and delighted word. But that does raise a troubling question, does it not—a question that must be lurking there at the back of our troubled minds. How is it possible, we finally ask, how is it possible that with 2008 having been autism science’s unparalleled banner year, how is it possible that with such earth-shattering advancements on such a broad variety of absolutely essential fronts—genetic research brilliancies, environmental factor epiphanies, biochemical conquests—how is it possible that when furthermore we have had the AGRE data base, government settlement cases and some rodents chipping in, how is it possible that we did not manage to demystify autism completely, how is it possible that we did not put this condition’s perplexing questions entirely to bed, how is it possible that in 2008 we did not resolve autism’s conundrum finally once and for all, resolve it at the very latest by mid July?

We should bear in mind that Dr. Dawson’s letter does serve a valuable purpose. It is a purpose not to be found directly in her words of course, but instead in the cloud of comedy and irony overhanging her epistolary litany. Through hers and similar exploding laundry lists of so-called essential, breakthrough successes in the fields of autism science and research, we are brought at long last to the realization that in point of fact we are achieving little more than a loud spinning of all the wheels, a gratuitous grinding of all the gears—the spinning perhaps a little louder, the grinding a little more gratuitous with each passing year. On the road to any true understanding of this condition we call autism, science is in fact not making the slightest progress at all; it is instead racing hell-bent in the direction of becoming irretrievably stuck.

1 comment:

J said...

Good stuff, Alan. It is my hope that the recent decision by the IACC to emphasize quality-of-life research agendas over vaccine causation agendas signals a new sort of 'autism knowledge revolution' - one in which the knowledge we seek is specifically geared towards bettering the lives of autistic people.