'That is not sound' - A Daughter's Life with Autism

Excerpted from
Exiting Nirvana: A Daughter's Life with Autism
By Clara Claiborne Park

In 1961, when we first heard of autism, Jessy was three and a half. Our doctor had suspected something wrong at twenty-two months, but hospital examination could find nothing specific. That was not surprising; few were aware of autism then, even within the medical profession. Though Kanner had named it in 1943, and described it with uncanny accuracy, it remained little known, an obscure and rare disorder. Year after year the same figures were repeated: four in ten thousand, two in ten thousand - who knew, really? Who was counting such children? How many doctors were even able to recognize the condition, to distinguish it from all the other possibilities - retardation, aphasia, even, in the early years of a speechless child, deafness? Diagnosis was even more unlikely with children who were not speechless, whose intellectual development seemed to progress normally, yet who shared the characteristic social deficits and odd preoccupations of autism - children like Temple Grandin.

Today such people are more likely to be identified, perhaps as children, perhaps as adolescents or adults. Temple calls herself autistic, but increasingly people like her receive a less daunting diagnosis, Asperger's syndrome, after Hans Asperger, who in Vienna in 1944, quite independently of Kanner, identified this high-functioning variant. Like other biologically based conditions, autism has fuzzy margins. Many parents today must try to make sense of a diagnosis of PDD-NOS, Pervasive Developmental Disorder Not Otherwise Specified, a convenient if uncommunicative label for a child who has a significant number of the symptoms of "classic" autism, but lacks others. Most specialists today would agree with the British psychiatrist Loma Wing, herself a parent of an autistic daughter, that there is a "continuum of impairments," an autistic spectrum.

Nevertheless, within these variations there is a core, what Wing calls a "triad of impairments" - in social interaction, in communication, and in imaginative activity. The American Psychiatric Association adds another: "restricted repetitive and stereotyped patterns of behavior, interests, and activities." Autism can now be recognized as a worldwide disorder; there are autism societies, mostly started by parents, in India, Thailand, Japan, in Australia, in Africa, in South America, all over Europe. And with better diagnosis, it appears that autism is not even particularly rare. Studies abroad suggest that the incidence of autistic spectrum disorders "may be three to five times higher than the rates found in studies conducted in the U.S. 15-20 years ago, as high as ten to twenty per ten thousand." A recent report from the U.S. Centers for Disease Control on autism in one New Jersey county finds evidence for an even higher figure: 4 per thousand for "strictly defined" autism. 6.7 per thousand when PDD-NOS and Asperger's syndrome are included. This is significantly higher than the incidence of Down syndrome, one of the commonest mental disabilities. It seems likely that every one of us has encountered someone with autism.

The count is uncertain; the future of each child is uncertain too. We have learned a lot since the early days when the Dutch psychiatrist Van Krevelen could describe autistic children as "alike as two raindrops." Those who, like Jessy, have all the "classic" symptoms do indeed look much alike when they are very little; they are much less alike as they grow. Nor does the severity of their symptoms as toddlers necessarily predict where they will fall on the autistic continuum as adolescents and adults; some who, like Temple, have achieved advanced degrees started out very much like Jessy, and some who functioned much better as children have never been able to hold a job. Many autistic children never acquire useful language, some never learn to speak at all. Yet even these may still possess the "splinter skills," the bewildering "islets of intelligence" that set autism apart from the conventional picture of retardation - may discriminate shapes and colors, as Jessy did, or astonish their parents by playing a melody on the family piano. Wherever they fall on the spectrum, however, they will be in need - of skilled teaching as children, and as adolescents and adults, of informed, continuing assistance in coping with social demands that grow more complex the more successfully they enter the normal world.

That's enough. It's not my intention to survey what's known about autism. There are many people better qualified to do that. I've listed some of their books at the back of this one. It's the experience of autism that I can write about - the initial bewilderment, and the slow growth of at least partial understanding. Indeed there is much to be learned from these strangers. They challenge us to perceive differently, think differently, feel differently, to stretch our imaginations to apprehend, even appreciate, an alternative world. Jessy's journey has led her out of that world - I have called it Nirvana - into the uncertain world of human beings. For that to happen, we too had to travel, as best we could, into experience as foreign to us as ours was to her, learning different things, but learning them together. I would not want to guess who has profited more.