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?


Fleecy said...

That was such a good idea your wife had. Very intuitive, yes.

I was just saying to someone yesterday: anyone who really wants to have a conversation with an autistic person should try doing it on the autistic person's terms. Which sometimes means non-standard forms of communication, but always means actually paying attention to their interests (as opposed to trying to drag them into a conversation about something chosen arbitrarily for its "typical"-ness). Fancy that - people prefer having conversations about stuff they're actually interested in.

I really liked this post, about "just-in-time exuberance".

Your comment about autistic "sprouts" made me think of Amanda Baggs' "The Oak Manifesto." Have you read it? It's also good.

Alan Griswold said...


Thanks for the reference to Amanda Baggs' The Oak Manifesto. I had not stumbled upon it yet. I agree with you -- it is very good.

Fleecy said...

I'm glad you enjoyed it. I think it not only says something important (people need to grow as themselves, and trying to force them into being otherwise can be harmful) but also it was just enjoyable with all the plant imagery.