In 1965 in Brooklyn, N.Y., Annabel Stehli gave birth to her second daughter, Georgie. In early childhood, although Georgie could speak, read, create her own art work and take care of her own toilet, she was adjudged as “autistic” because of a continuing opacity and a quick and unpredictable temper that produced hellish tantrums. By the time Georgie was 7, she was placed in a special residence program at Bellevue for young “autistics;” later she moved into another institutional setting called Childville and seemed doomed to live in controlled environments for the rest of her life except for weekend furloughs home.
But when Georgie was 11, after Annabel Stehli’s second husband was transferred to Switzerland, Georgie was treated by Dr. Guy Berard, a Swiss hearing specialist. After two half-hour sessions of auditory training a day over a 10-day period, her hearing was readjusted to a normal hearing range and Georgie was cured of the “autism” that had plagued her life.
It seemed Georgie had been suffering from hearing so hyper-acute that even a slight spill of water would sound to her like a roaring Niagara. (“I thought everyone heard it that way and coped with it better than me.”) Similarly, she soon learned, her vision was so hyper-acute that even the colors of snow would assault her. But with her sensory perceptions under control, Georgie’s awakening came. She has since developed into a “magna cum laude” graduate art-school student and is now studying for an advanced degree.
One can’t help but be delighted for Georgie--and for her mother, a writer who lived a soap-opera life, coping not only with Georgie’s “autism” but with the leukemia death of Georgie’s older sister and the desertion of her first husband. Still, permit me an observation or two about the book’s chest-thumping subtitle, “A Child’s Triumph Over Autism,” which, in concert with its main title, heralds a miracle cure for “autism.”
Never mind that the miracle described is at best what scientists usually dismiss as anecdotal evidence. I am not a scientist but I am a parent, and I disparage no fellow parent’s experiences. In fact, in matters dealing with “autism,” I find anecdotal evidence almost appropriate. For after an involuntary involvement with “autism” in its most devastating severity for about two dozen years, I have come to the conclusion that “autism” itself is an anecdotal affliction.
Let me backtrack: Dr. Leo Kanner, a Baltimore psychiatrist, more than half a century ago was the first to use the term to claim a disorder manifesting itself in early childhood, a disorder previously uncharted on the Freudian seas. An “autistic” child, according to his categorization, was one who was uninterested in his or her immediate environment, exhibited bizarre and inconsistent behavior, usually was backward, and inevitably was uneven in acquiring and reaching normal developmental milestones.
Inadvertently, Kanner opened a threatening can of peas for his professional brethren. There was nothing in the psychoanalytical canon that could satisfactorily explain the condition; the “autistic” child seemed to present a personality disorder that no prevailing theory of personality could cover. At the same time not to consider “autism” a personality disorder posed an even greater professional risk. For then similar conditions of withdrawal, regression and displays of anti-social behavior far less severe might also be placed outside the purview of the psycho-genic franchise.
Then after World War II, along came Dr. Bruno Bettelheim, offering an acceptable and easy-to-sell theory that fit in with all the main currents of Freudian thought. “Autism,” according to the Austrian Holocaust survivor (with a Viennese doctorate in political science, not psychology), was the result of “refrigerator parents,” particularly “cold mothers,” whose lack of response turned the traditional personality-developing mechanisms of the infant off, thus not enabling its fragile ego to flower normally. Indeed, rather than enter a world perceived as hostile and cold, the child, as if nipped in the pre-bud, instead chose to reject and withdraw from it.
Both the psychoanalytically oriented mental-health establishment and pop-psych publishing richly rewarded Bettleheim for his etiological construct. The school he opened for “autistic” children in Chicago thrived; his books became best sellers, and Bettelheim himself received universal acclaim as a kind of triple-threat philosopher-poet-prince engage. Almost like a self-styled King of the Jews in a Holocaust ghetto, he became the Emperor of Autism on his own walled-in turf.
However, at an increasingly accelerating rate in the past 20 years, Bettelheim’s theory has been largely discredited and Kanner’s classification has come under deadly fire. Almost everyone working and studying the affliction agrees that what is called “autism” is not even considered a disease any more--something with a common germinal root--but rather a syndrome, a collection of symptoms similar on the surface but perhaps deriving from diverse and unknown causes. Recurring headaches, for example, no matter what their source, are a syndrome.
Put simply then, the esoteric condition called “autism” is now regarded as a form of brain dysfunction or brain damage not unlike that brought on by a stroke but one that occurs very early on. The victim’s brain manifests the ravages it has suffered in strange, uneven, unpredictable yet often inter-related ways; personality, for example, is a brain function just as surely as are perception, intelligence and communication.
Yet “autism” still is treated--in the non-medical sense--as a peculiar and distinct illness not only by kitsch Rainmen but also by the medical, social-service and educational bureaucracies.
In the Autism in Wonderland world I have had to live in for the past two dozen years, I have seen more “autistics” unlike each other than like each other. As I say, “autism” is an anecdotal malady.There is no accepted scientific test for it. Any parental consumer can buy the diagnosis, any professional expert can sell the diagnosis, and so any alleged victim can be miraculously cured.
The term still survives because legislators, educators, psychiatrists, psychologists, doctors, social workers, even organized parental support groups either have invested too heavily in the term to abandon it or simply have become enamored of its elitist ring. All old labels die hard; nomenclature is as difficult to dislodge as any other facet of bureaucratic bookkeeping.
But given the colonialist history of “autism,” it certainly is high time that it be replaced with a more exact and less imprecise English term, such as brain damage or brain dysfunction syndrome. However, neither term, I’m afraid, sounds very much like a possible MacGuffin, a plot-driver that promises the ultimate audience satisfier--an epiphanous turn of a gestalt key that can unleash a miracle.
So unfortunately, just like Georgie, others too afflicted with damaged or dysfunctioning brains will continue to suffer additionally from the fact that “autism” is one of those exercises in fancy--or fancy labeling--that, rather than identifying, instead misdirects, leading away from the scientific paths capable of producing fruitful remedies and solutions.