Autism's False Prophets: Essay 1

This book is the latest salvo in what may rightly be denominated the "Autism Wars." For more than a decade this war has been fought between well-funded, elite-degreed, respected "mainstream" medicine and a growing collection of parents, academics, doctors, lawyers and others who feel that mainstream medicine has, at best, let them down and, at worst, deceived them on the subject of vaccines, mercury and the possible link between those and autism. Though there is no question whose side Offit is on here (he is a representative of the medical "establishment"), his book is a clear, though perhaps unwitting, exposition of the way that personality and human frailty, rather than "pure science" (whatever that is) shapes both sides in this raging battle.

Principal Focuses of the Book

One of the focuses of the book is Dr. Offit's attempt to show the chronological unfolding of the various stages of the battle, beginning with Dr. Andrew Wakefield's Lancet publication in 1998 suggesting a possible link between the MMR vaccine and development of autism. Dr. Offit has charted many significant events, personalities and studies in the decade since the Wakefield study that bears on the relationship between mercury poisoning and autism, the MMR and autism and the "thimerosal debate."

Dr. Offit has also been privy to or knows sources that were privy to intimate discussions on vaccine policy in the US in the late 1990s that led to what he thinks is probably one of the worst and most precipitous decisions in modern day vaccine science--the process leading to the banning of the preservative thimerosal from most vaccines in the United States. What he suggests, but never really admits, is that it was the precipitate action of the mainstream medical community that may, as much as anything else, have led to the current phase of the Autism Wars. The mainstream medical community (as represented by the AAP and the Public Health Service) gave an ambiguous statement about the reason for banning thimerosal in 1999, thus opening the door for allegations of bad faith, cover-up, suppression of evidence and even ill will towards America's children.

Thus, when Dr. Offit mounts the high horse of objective science, which he seems to clamber onto a little more readily than he ought in this book, he seems to downplay how people on his side of the battlefield have really helped shape the contours of this nasty war in the past decade. It is as if at Gettysburg the troops of one side were visibly unprepared for battle at one point in the line, thus enticing the opponents to attack there. The first fingers they should point, when an attack has happened, are at themselves.

The "Other" Side

I would hasten to add, however, that Dr. Offit's narration of the past decade in the mercury/thimerosal/vaccine/autism debate ought also to encourage those on the other side of the battle to look at themselves and see if they, indeed, have sometimes rushed to judgment especially on the issue of the elusive "cause" of autism. In their haste to be responsive to the clamoring needs of parents who are facing the debilitating, and sometimes wonderful, life of raising children with autism, some of the "non-mainstream" doctors, scientists and parents have, with various degrees of stridency, sought for miracle cures like a medieval peasant longing for a vision of the Blessed Virgin.

Getting Some Perspective

A person who for decades was the "respected" voice of autism research and, as one person has told me, probably set the cause of autism back for at least another twenty years or so, is the late Dr. Bruno Bettleheim, he of the "refrigerator mother" theory of autism. Bettleheim was one of the earliest investigators of the perplexing phenomenon of autism, and was also one of the most confident in articulating a "psychogenic" or psychological "cause" for autism--poor parenting/mothering. But Bettleheim's shadow still stalks debates about autism. Despite throwing that simplistic mono-causal explanation aside, some in the non-mainstream autism community today have embraced single-cause explanations for autism (i.e., thimerosal in vaccines, the MMR vaccine, etc.) that seem to have an initial promise but then, upon closer inspection, crumble to dust in one's hands (see my various essays on the mercury/autism link). If there is anything one can learn from the history of autism research it is that autism eludes, at least at this stage of our research, simplistic explanation. Easy identification of a mono-causal culprit is most likely going to be wrong. Yet, this simple kind of explanation is alluring because it gives an easy answer to parents and other people longing for some answers to their deepest questions about their children. It can lead to what Dr. Offit calls a "cottage industry of false hope."

Problems with the Book

But here is where Offit's book, which as a historical and cultural narrative is interesting, falls flat. Rather than drawing deft small strokes in characterizing those who have come up with "alternative therapies" to treat autistic individuals, with the result that some are excellent, some are good, some are fair and many perhaps are poor, Dr. Offit uses as it were a four-inch brush to paint twigs and decides that all those who try to offer alternative therapies participate in a charlatan's game of false hope-creation. Certainly most will agree that Bettleheim's theories were not only false but harmful; that "facilitated communication" (which ended up being "guided communication") was deceptive; that secretin was not able to live up to its first billing; that Lupron might be dangerous to administer to children. But just because certain therapies for autism have been shown either to be bogus or unhelpful to most with that condition, one can't credibly argue that all attempts of those who believe autism is treatable are therefore worthless. Dr. Offit falls into the error of judging the whole tribe by its worst members, a sort of "all Muslims must be terrorists" approach to "non mainstream" autism professionals and parents. If he had the time, or patience, to examine either the data or parental/physician reports on the virtues of applied behavior analysis, a gluten-free casein-free diet, or many other possible "alternative therapies" for autism, he would have discovered that the world it not black and white but is neatly vari-colored. Some things seem to work with some children; others with others. Some children seem resistent to almost any intervention; others perform so well that some people even use the "c"-word (cured) to speak of them.

But Dr. Offit not only doesn't give a "granular"-enough reading of the data with respect to individual therapies, but he gives the impression that the only way to proceed is to pour large amounts of money into the work of people who are doing genetic research on autism. Genetic research may, eventually, provide some insight we need, indeed, but to tell parents and the world that alternative therapies are "false hopes" while only giving the hope of "long-term research" to get to the real-cause, is like refusing to give police officers to teeming inner cities until the sociologists have figured out definitively the "causes" of crime. No, you do both--you pursue strategies that ameliorate suffering now and you pursue long-term research that may lead to significant breakthroughts down the way. But Dr. Offit is too girded up for battle to be able to describe nuance in the "enemy" across the ditch. To him, they are all wearing "blue" (or "gray").

Let's look in more detail, then, at what he actually does accomplish in this book.

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