The picture of “classical infantile autism” is a formidable one. Most people (and, indeed, most physicians), if asked about autism, summon up a picture of a profoundly disabled child, with stereotyped movements, perhaps head-banging; rudimentary language; almost inaccessible: a creature for whom very little future lies in store.
Indeed, in a strange way, most people speak only of autistic children and never of autistic adults, as if the children somehow just vanished from the earth. But though there may indeed be a devastating picture at the age of three, some autistic youngsters, contrary to expectations, may go on to develop fair language, a modicum of social skills, and even high intellectual achievements; they may develop into autonomous human beings, capable of a life that may at least appear full and normal—even though, beneath it, there may remain a persistent, and even profound, autistic singularity. Asperger had a clearer idea of this possibility than Kanner; hence we now speak of such “high-functioning” autistic individuals as having Asperger’s syndrome. The ultimate difference, perhaps, is this: people with Asperger’s syndrome can tell us of their experiences, their inner feelings and states, whereas those with classical autism cannot. With classical autism, there is no window, and we can only infer. With Asperger’s syndrome there is self-consciousness and at least some power to introspect and report.
Whether Asperger’s syndrome is radically different from classical infantile autism (in a child of three, all forms of autism may look the same) or whether there is a continuum from the severest cases of infantile autism (accompanied, perhaps, by retardation and various neurological problems) to the most gifted, high-functioning individuals, is a matter of dispute. (Isabelle Rapin, a neurologist who specializes in autism, stresses that the two conditions may be separate at the biological level even if they are sometimes similar at the behavioral level.) It is also unclear whether this continuum should be extended to include the possession of isolated “autistic traits”—peculiar, intense preoccupations and fixations, often combined with relative social withdrawal or remoteness—such as one encounters in any number of people conventionally called “normal” or seen, at most, as a little odd, eccentric, pedantic, or reclusive.
The cause of autism has also been a matter of dispute. Its incidence is about one in a thousand, and it occurs throughout the world, its features remarkably consistent even in extremely different cultures. It is often not recognized in the first year of life, but tends to become obvious in the second or third year. Though Asperger regarded it as a biological defect of affective contact—innate, inborn, analogous to a physical or intellectual defect—Kanner tended to view it as a psychogenic disorder, a reflection of bad parenting, and most especially of a chillingly remote, often professional, “refrigerator mother.” At this time, autism was often regarded as “defensive” in nature, or confused with childhood schizophrenia. A whole generation of parents—mothers, particularly—were made to feel guilty for the autism of their children. It was only in the 1960s that this trend began to reverse, and the organic nature of autism to be fully accepted. (Bernard Rimland’s 1964 text, Infantile Autism, played an important part here.)
That the disposition to autism is biological is no longer in doubt, nor the increasing evidence that it is, in some cases, genetic. Genetically, autism is heterogeneous—it is sometimes dominant, sometimes recessive. It is much more common in males. The genetic form may be associated, in the affected individual or the family, with other genetic disorders, such as dyslexia, attention deficit disorder, obsessive-compulsive disorder, or Tourette’s syndrome. But autism may also be acquired. This was first realized in the 1960s with the epidemic of rubella, when a large number of babies exposed to this prenatally went on to develop autism. It remains unclear whether the so-called regressive forms of autism—with sometimes abrupt losses of language and social behavior in two—to four-year-olds who had previously been developing relatively normally—are genetically or environmentally caused. Autism may be a consequence of metabolic problems (such as phenylketonuria) or mechanical ones (such as hydrocephalus). 103
103. The television show “20⁄20” has reported on a town in Massachusetts with a very high incidence of autism, especially in the neighborhood of a former plastics factory—but the question of whether autism can be caused by exposure to toxic agents has yet to be fully studied.
Autism, or autismlike syndromes, may develop even in adult life, though infrequently, especially after certain forms of encephalitis. (Some of my Awakenings patients, I think, had elements of autism, too.)
And yet the parents of an autistic child, who find their infant receding from them, becoming remote, inaccessible, unresponsive, may still be tempted to blame themselves. They may find themselves struggling to relate to and love a child who, seemingly, does not love them back. They may make superhuman efforts to get through, to hold on to a child who inhabits some unimaginable, alien world; and yet all their efforts may seem to be in vain.
The history of autism, indeed, has been in part a desperate search for, and promotion of, “breakthroughs” of various sorts. One father of an autistic boy expressed this to me with some bitterness: “They come up with a new ‘miracle’ every four years—first it was elimination diets, then magnesium and vitamin B6, then forced holding, then operant conditioning and behavior modification—now all the excitement is about auditory desensitization and facilitated communication.” This boy, at twelve, was still tantalizingly mute and unreachable, and his condition had defied every form of attempted therapy—hence his father’s pessimism and blanket condemnation. Responses seem to be extremely varied: some individuals may respond spectacularly to some of these methods, while others show virtually no response at all. 104
104. The most recent and controversial of these methods is facilitated communication. FC (originally used with children with cerebral palsy) is based on the notion that if the hand or arm of a nonverbal autistic child is supported by a facilitator, the child may then be able to communicate by typing or by using an electronic communicator or letter board. The underlying thought is that such children may have a difficulty in initiating movements (akin to that of parkinsonism), and that a light contact with another person may allow them to overcome this and achieve a normal motor facility (as may occur with touching, or even visual contact, in some parkinsonian patients—I discuss this in Awakenings, footnote 45). The hope is that there may be, in at least some otherwise inaccessible patients, a rich but “imprisoned” world of thought and feeling that may now be released by this simple tactic.
The reported range of effects is very great, from minor releases of simple communications in some patients to entire autobiographies seemingly emanating from previously mute children. These reports have been the subject of almost evangelistic enthusiasm, among many parents and teachers of autistic children on the one hand; and of wholesale dismissal by the medical profession, on the other. It has been difficult to arrive at a calm judgment in the overcharged atmosphere of claims and dismissals; while some instances of FC have been shown to be entirely factitious—the result of unconscious suggestion by the facilitator—and others must be suspect, there remains a nucleus of apparently bona fide phenomena that deserve a careful and openminded scrutiny.
No two people with autism are the same; its precise form or expression is different in every case. Moreover, there may be a most intricate (and potentially creative) interaction between the autistic traits and the other qualities of the individual. So, while a single glance may suffice for clinical diagnosis, if we hope to understand the autistic individual, nothing less than a total biography will do.
My own first experience with the autistic was in a grim ward in a state hospital in the midsixties. Many of these patients, perhaps a majority, were also retarded; many had seizures; many had violent self-abusive behaviors, such as head-banging; many had other neurological problems. These worst-off patients tended to be multiply handicapped in addition to their autism (and several had been traumatized by abuse). And yet
, even in this population, there were sometimes “islands of ability”, occasionally spectacular talents, shining through the devastation, precisely as Kanner and Asperger had described—remarkable numerical or graphic powers, for instance. It was these special talents, apparently isolated from the rest of the mind and personality, and maintained by a passionate, intensely focused fixation or motivation—these savant syndromes—that engaged my special interest and that I explored most deeply at the time. And even in this population of the seemingly hopeless, there were some who responded to individual attention. One young patient, nonverbal, responded to music and danced; another, after some weeks, started to play pool with me and later, in the botanical garden, said his first word—“dandelion.” Many of these patients, born in the 1940s or early 1950s, had not even been diagnosed as autistic when young, but had been lumped together indiscriminately with the retarded and psychotic and warehoused in huge institutions since early childhood. This is probably how the severely autistic have been treated for centuries. It has only been in the last two decades or so that the picture for such youngsters has decisively changed, with increasing medical and educational awareness of their special strengths and problems, and the widespread introduction of special schools and camps for autistic children. 105
105. A pioneer here was Mira Rothenberg, who formed the Blueberry Treatment Centers in 1958, an early experience she describes in her book, Children with Emerald Eyes.
Visiting a few of these during August, I had seen a variety of children, some intelligent, some mildly retarded, some outgoing, some timid, all with their own individual personalities. At one such school, as I approached, I had seen some children in the playground, swinging and playing ball. How normal, I thought—but when I got closer I saw one child swinging obsessively in terrifying semicircles, as high as the swing would go; another throwing a small ball monotonously from hand to hand; another spinning on a roundabout, around and around; another not building with bricks but lining them up endlessly, in neat, monotonous rows. All were engaged in solitary, repetitive activities; none was really playing, or playing with any of the others. Some of the children inside, when not in classes, would rock back and forth; some would flap their hands or jabber unintelligibly. Occasionally, one of the teachers told me, a few of the children would have sudden panics or rages and scream or hit out uncontrollably. Some of the children would echo any words that were spoken to them. One boy apparently had an entire television show by heart and would “replay” it all day, complete with all the voices and gestures, and even sounds of applause. At Camp Winston, an attractive six-year-old boy had been given a pair of scissors and was cutting minute ‘H’s, a fraction of an inch high, each perfect, from a piece of paper. Most of the children looked physically normal—it was their remoteness, their inaccessibility, that were so uncanny.
Some, in adolescence, were starting to emerge—to speak fluently, to learn social skills (much more difficult for such children than any academic learning), to create social surfaces they could present to the world.
Without special schooling—schooling that for many had started in the nursery or at home—these autistic youngsters, despite their often good intelligence and background, might have remained profoundly isolated and disabled. They had certainly learned, many of them, to “operate” after a fashion, to show at least a formal or external recognition of social conventions—and yet the very formality or externality of their behavior was itself disconcerting. I felt this especially at one school I visited, where children would stick out rigid hands and say in loud, unmodulated voices, “Good morning my name is Peter—I am very well thank you how are you” without any punctuation or intonation, affect or tone, in a sort of litany. Would any of them, I wondered, ever achieve true autonomy? Use their social automatisms pragmatically, as a way ot functioning in the world, but, beyond this, achieve a true inwardness of their own, perhaps a profoundly different inner life, of an autistic sort—perhaps an inner life known or shown only to a few others?
Uta Frith has written, in her book Autism: Explaining the Enigma, “Autism—does not go away—Nevertheless, autistic people can, and often do, compensate for their handicap to a remarkable degree. [But] there remains a persistent deficit—something that cannot be corrected or substituted.” She also implies, in a speculative mood, that there may be a reverse side to this “something”, a sort of moral or intellectual intensity or purity, so far removed from the normal as to seem noble, ridiculous, or fearful to the rest of us. She wonders, in this regard, about the blessed fools of old Russia, about the ingenuous Brother Juniper, an early follower of Saint Francis, and, interestingly, about Sherlock Holmes, with his oddness, his peculiar fixations—his “little monograph on the ashes of 140 different varieties of pipe, cigar and cigarette tobacco”, his “clear powers of observation and deduction, unclouded by the everyday emotions of ordinary people”, and the extreme unconventionality that often allows him to solve a case that the police, with their more conventional minds, are unable to solve. Asperger himself wrote of “autistic intelligence” and saw it as a sort of intelligence scarcely touched by tradition and culture—unconventional, unorthodox, strangely “pure” and original, akin to the intelligence of true creativity.
Dr. Frith, when we met in London, expanded on these themes and said I must be sure to visit one of the most remarkable autistic people she knew—to see her at work and at home, to spend time with her. “Go see Temple”, Dr. Frith said as I left her office.
I had, of course, heard of Temple Grandin—everyone interested in autism has heard of her—and had read her autobiography, Emergence: Labeled Autistic, when it came out, in 1986. When I first read the book, I could not help being suspicious of it: the autistic mind, it was supposed at that time, was incapable of self-understanding and understanding others and therefore of authentic introspection and retrospection. How could an autistic person write an autobiography? It seemed a contradiction in terms. When I observed that the book had been written in collaboration with a journalist, I wondered whether some of its fine and unexpected qualities—its coherence, its poignancy, its often “normal” tone—might in fact be due to her. Such suspicions have continued to be voiced, in regard to Grandin’s book and to autistic autobiographies in general, but as I read Temple’s papers (and her many autobiographical articles) I found a detail and consistency, a directness, that changed my mind. 106
106. What one does see in Temple’s writings (and in the writings of other very able autistic adults, not excluding some with marked literary gifts) are peculiar narrational gaps and discontinuities, sudden, perplexing changes of topic, brought about (so Francesca Happé suggests in a recent essay on the subject) by Temple’s failure “to appreciate that her reader does not share the important background information that she possesses.” In more general terms, autistic writers seem to get “out of tune” with their readers, fail to realize their own or their readers’ states of mind.
Reading her autobiography and her articles, one gets a feeling of how strange, how different, she was as a child, how far removed from normal. 107
107. Authentic memories from the second (perhaps even the first) year of life, though not available to “normals”, may be recalled, with veridical detail, by autistic people. Thus, Lucca writes of one such boy, “He seems to recall, in exquisite detail, events from when he was two or three years old.” Coenesthetic memories of infancy are also reported by Luria of S., the mnemonist he studied.
At six months, she started to stiffen in her mother’s arms, at ten months to claw her “like a trapped animal.” Normal contact was almost impossible in these circumstances. Temple describes her world as one of sensations heightened, sometimes to an excruciating degree (and inhibited, sometimes to annihilation): she speaks of her ears, at the age of two or three, as helpless microphones, transmitting everything, irrespective of relevance, at full, overwhelming volume—and there was an equal lack of modulation in all her senses. She showed an intense interest in odors
and a remarkable sense of smell. She was subject to sudden impulses and, when these were frustrated, violent rage. She perceived none of the usual rules and codes of human relationship. She lived, sometimes raged, inconceivably disorganized, in a world of unbridled chaos. In her third year, she became destructive and violent:
Normal children use clay for modelling; I used my feces and then spread my creations all over the room. I chewed up puzzles and spit the cardboard mush out on the floor. I had a violent temper, and when thwarted, I’d throw anything handy—a museum quality vase or leftover feces. I screamed continually—
And yet, like many autistic children, she soon developed an immense power of concentration, a selectivity of attention so intense that it could create a world of its own, a place of calm and order in the chaos and tumult: “I could sit on the beach for hours dribbling sand through my fingers and fashioning miniature mountains”, she writes. “Each particle of sand intrigued me as though I were a scientist looking through a microscope. Other times I scrutinized each line in my finger, following one as if it were a road on a map.” Or she would spin, or spin a coin, so raptly that she saw and heard nothing else. “People around me were transparent—Even a sudden loud noise didn’t startle me from my world.” (It is not clear whether this hyperfocus of attention—an attention as narrow as it is intense—is a primary phenomenon in autism or a reaction or adaptation to an overwhelming, uninhibited barrage of sensation. A similar hyperfocus is sometimes seen in Tourette’s syndrome.)
At three, Temple was taken to a neurologist, and the diagnosis of autism was made; it was hinted that lifelong institutionalization would probably be necessary. The total absence of speech at this age seemed especially ominous.