Friday, January 30, 2009

The Problem with Early Intervention

My wife is an intuitive genius. One example of her ability to do just the right thing at just the right moment occurred around the time of my son’s third birthday. At that age, Brian still possessed an extremely limited verbal range: he would speak only rarely and when he did speak, his vocabulary consisted of no more than about thirty words, all of them nouns—car, light, etc. No hellos or good-byes. Never a yes or no. Talking held little of interest for him, but what did fascinate him were ceiling fans, especially the three in our house, which he would turn on and off and run back and forth beneath for hours at a time, rubbing his hands together in his quintessential gesture of pure delight.

One afternoon my wife was with Brian while he was playing with the ceiling fan in the family room, and out of the blue she began making a huge, overblown production of everything he was doing. “Wow! Look at how fast that fan is spinning. I can feel its huge breeze, it’s going to blow me away. Wooooooooooooooo. Now look what’s happening. Brian has turned the ceiling fan off, it’s slowing down! Slowwwwing dowwwwn! Almost stopped. Almost! Almost! And … the fan … has … STOPPED!” For a moment, my son must have been a little shell-shocked, no doubt in part because my wife’s behavior was so decidedly over the top, but perhaps also because this was the first time it had been suggested to him that someone else might be as interested in ceiling fans as he was. He switched the fan on, then off again, and in his halting way managed to indicate to my wife that she repeat her soliloquy, in particular its drawn-out, overly dramatic and precisely timed conclusion: “The fan … has … STOPPED!” Then he had her do it again and again.

It was the next morning that my wife and I heard the giggles emanating from the family room followed by their unmistakable, high-pitched punctuation, “Fan … has … STOPPED!”, and the entire episode turned into a watershed event. Brian’s verbal skills skyrocketed from that moment on, and although today, at six years of age, he retains a few of the telltale anomalies—he still mixes up a pronoun now and then, and no one would ever mistake his conversation topics as being anything typical—in terms of range of expression and an ability to articulate his thoughts, I would pit Brian against any English professor I know. He has become a veritable chatterbox.

I relate the above story not so much as an anecdote but as an antidote—an antidote to the now frequent and widespread calls for early intervention against autism. Instead of early intervention, I would like to offer up as an alternative my wife’s intuitive, ingenious, and far more productive approach. I would like to offer up instead the concept of just-in-time exuberance.

Early recognition of autism (not early diagnosis—see here) has the potential of becoming a positive development within the world of autism. If parents, caregivers, educators, and health care providers were given information early on that a child was in all likelihood autistic, and were able to respond to this information in a manner such as the following, “Excellent! Excellent! What a blessing to be in the company of a child so special and with such unlimited potential! Now let’s not get too excited just yet. Let’s not celebrate too much just yet. We must be realistic about this: we need to change some of our ways. We must begin to provide this child with a large variety of items and activities with which to interact—all sorts of shapes, letters, music, textures, and so on—and we need to be aware of which items appeal to him and which do not. And we must capitalize on his interests, and we must give him countless opportunities to expand from there. And praise—heaps and heaps of praise—certainly no less than for any other child, but in this case perhaps a little more. The choices and direction will be ultimately his, but for now we must do all within our power to help him gain as many autistic skills as he can. A little extra work and resources on our part, no doubt. A little more flexibility required from us, no doubt. But of course in the end it will all be worth it, because what greater blessing can there be than to be acquainted with such a unique and valuable child!” If parents, caregivers, educators, and health care providers were to respond to the early recognition of autism in this and similar ways, then indeed early recognition of autism could become a very positive development within our world.

But of course, we must be realistic about this: these days, practically no one responds to the early recognition of autism with joyful cries of just-in-time exuberance. Everyone responds instead with a howling wail for early intervention.

Let us make no bones about what early intervention is, for indeed, the phrase speaks for itself. Early intervention is not the exuberant, enthusiastic development of autistic skills—leveraging the strengths and interests such a child already possesses and is already familiar with. No, early intervention is exactly the opposite. Early intervention is the taking of a young, tender, full-of-potential autistic sprout, and through artificial and sometimes unspeakably cruel means doing all that is possible, all that is considered necessary, to prevent that sprout from ever growing. Early intervention means the suppression of autistic behavior; early intervention means the suppression of all forms of natural autistic expression.

Early intervention derives from a credulous belief in some half-baked, oft-repeated theories about brain matter plasticity at very young ages, alongside many misguided hopes that with intensive corrective action and an invasive non-autistic infusion, a more normal (and thereby easier-to-manage) child will eventually emerge. Thus we see that the enormous amount of psychological naiveté propping up all this widespread belief behind the calls for early intervention in autism is matched only by an equally incredible amount of biological naiveté.

Let us make no bones about what early intervention is. From the point of view of the autistic child—that potential autistic spirit reaching for its rightful place in the sun—early intervention means a relentless and pointless sentence of death.

The most commonly employed tools in early intervention are intensive applied behavioral analysis (ABA), subduing pharmacology, and an assortment of activities I can only describe as biomedical atrocities (such as forced chelation). And of course it is no mere coincidence that nearly all the loudly told tales of autistic negative outcomes, that nearly all the shrilly insisted-upon instances of lower functioning children, that nearly all the screechingly advertised appeals for an inevitable, institutionalized doom—it is no mere coincidence that such tales are accompanied invariably by an attempted history of ABA, pharmacology, and/or biomedical atrocity. It must be only through the grace of God and the resiliency of the autistic mind that not every occurrence of such intervention results in senseless tragedy; but when we consider the now growing trail of broken autistic lives chalked up to the ledgers of early intervention, when we consider how many autistic children have been vanquished through endless, relentless hours of ABA, when we consider the number of young, developing autistic brains overcome by laundry lists of overpowering drugs, when we consider the scores of precious autistic bodies caustically poisoned by chelation, lupron and other nefarious elixirs—when we consider all this unconscionable waste, it raises the question whether the early recognition of autism is indeed such a positive development after all. Would it not be better if this trend towards early recognition were instead to be suddenly reversed? Would it not be better if autistic children were allowed to go forth again as essentially unidentified? Would it not be better if autistic spirits were allowed their chance once more to carve a distinctive path through life—which until just a couple decades ago was a fate nearly every autistic child enjoyed.

My son is autistic. And because he has never been exposed to ABA, risperidone, or any other treatment worthy of the term early intervention, I will accept the combined judgment of the autism professional community, I will accept the collective wisdom behind that community’s superior knowledge, I will accept that by now the opportunity to reshape Brian’s growing brain, the opportunity to dramatically alter his autistic path—that opportunity has passed him by. I will accept that by now my son is not only autistic, but that indeed he is hopelessly autistic.

Hopelessly autistic as he counts backwards by threes and fives. Hopelessly autistic as he reads accurately through all his button books. Hopelessly autistic as he delights in roller coasters, water slides, marble runs, piano keyboards and a list of assorted games. Hopelessly autistic as he knowingly explains the earth’s tilt, rotation and the timing of the solstice. And hopelessly autistic as he chatters through his own creative renditions of so many ceiling fan soliloquies.

To every professional who has ever clamored for the merits of early intervention in autism, to every professional who has ever insisted upon the value of redirecting autistic lives while they remain still pliable, to every professional who has ever suggested that in the absence of early intervention the autistic outcome will likely be something grim—to every such professional, you are invited to spend the day alongside my chattering, delightful, ceiling-fan obsessed son (and alongside the parents who could not be more blessed than to be in his presence). You are invited to spend that day and then in all seriousness to explain—what exactly would you have proposed to do?

Wednesday, January 28, 2009

The Problem with Peer Review

Genuine scientists, the ones who can unveil surprising, valuable and enduring insights into our experienced world—scientists such as Newton, Darwin and Einstein—they have no peers. Scientists for hire on the other hand can be found around every corner, and of course filling out all the editorial review boards.

Scientific Insight

What level of research grant supported Newton’s Principia project? What funding organization sponsored Darwin’s laboratory of origined species? Who footed all the bills during Einstein’s Annus Mirabilis?

Why is it the forgettable science requires hundreds of thousands of dollars and entails an unspecified amount of time, whereas the memorable science costs nary a cent, and happens in no more than a flash?

Wednesday, January 21, 2009

Identification Bias

Because autism was first taken to be a medical condition—a type of mental illness—its ongoing recognition has always suffered from a very bad case of identification bias.

Around forty to fifty years ago, the only cases of autism being diagnosed were those for which the individual was clearly detached from usual behaviors and circumstances, and was clearly in need of support and services. This practice made sense, because at that time autism was assumed to be an acute medical condition and therefore only individuals meeting the criteria of an acute medical condition could be identified as having autism. No one else was ever identified as having autism, and of course autism was thought to be extremely rare.

However, a problem soon emerged: the medical community began recognizing many individuals who possessed most of the same features as those being diagnosed with autism, but who obviously were not suffering from an acute medical condition. This should have alerted the medical community that its initial assumption about autism being a medical condition was now seriously in doubt; but identification bias had already set in, had already become too firmly entrenched, and no serious questioning of that assumption ever took place. When one reads, for instance, Lorna Wing’s work—the work that began the process of bringing Asperger syndrome into the diagnostic fold—one is struck by how the new identifying criteria, although distinguished from the criteria used on the more classically diagnosed cases, was still making the assumption of a major underlying cognitive impairment, was still assuming the presence of a serious medical condition. And so, as terms such as high-functioning autism, Asperger syndrome, and pervasive developmental disorder began to assume more widespread usage, the specter of medical illness never loosened its grip on autism at all—it merely began enveloping a much larger population within its darkening cloud.

That trend continues unabated to the present day. Using an expanding range of diagnostic tools and applying them at earlier and earlier ages, the medical community now identifies nearly one percent of the toddler population as possessing some form of autism, and because of identification bias, that entire one percent is assumed to be suffering from a dire medical condition. With no consideration for whether the expected outcome might be positive or negative, and with no recollection of the statistics from its own diagnostic past, the medical community assumes every child identified as being autistic will require a regimen of early intervention, will need an onslaught of powerful drugs, intensive therapies, and assorted prescriptive treatments. It never occurs to the medical community that its own history of autism identification has now progressed all the way from rare to questionable to absurd. It never dawns on the medical community that nearly the entire one percent now being identified as mentally ill, was only one half century ago being identified with not one sickness at all.

It is not too late to turn back the clock—even some fifty years. Autism has never been a medical condition. That stranglehold of an assumption is only the residue from a lazy history of bias.

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.

Sunday, January 11, 2009

Hello Again

This most recent pause in the blog posts was not planned—I broke my left hand in late November and have found it difficult to create new entries in the mean time. (It’s odd: I once was an inveterate hunt-and-pecker, but now I can’t seem to compose a meaningful sentence without complete use of all fingers on all hands.) I’m nearly on the mend now and should be able to begin posting again shortly.

A thank you to Steve D and Fleecy for their recent mentions of Autistic Aphorisms. Both their blogs by the way are informative, thoughtful and well-written; if you haven’t taken a look already, please do so.

And a belated Happy New Year to everyone!