CHARLIE'S WORLD : A family battles autism

Commonweal, Sept 8, 2000 by James T. Fisher

year ago, at the age of two, our son Charlie was diagnosed with autism. The past year has taken my wife Kristina and me on a journey from deep sadness to rising hope and joy as Charlie has made heartening progress in his struggle to communicate with us and others. We know that he, and we, are still near the beginning of a very long road to help him learn and grow through constant work, faith, and love. One by one we teach Charlie the names of things--"cup," "shoe," "lamp"--and syllable by syllable we shape his sounds--"kk-er," "mm-ssih"--into words--"cracker," "music." With each sound, with each word learned, Charlie takes one more step into the world.

Autism is a neurobiological disorder marked by severe delays in speech, repetitive or ritualized behaviors, and especially by profound impairments in social interaction. Charlie was late to roll over, sit by himself, walk (he did not crawl but scooted around in a sitting position, propelled by his hands). From the time he was ten months old, he "read" all the books Kristina had set up as his "library." My mother was the first to raise concerns at how long Charlie would sit--forty-five minutes and more--absorbed in the colorful stiff pages of his board books or looking quietly out the window. Nevertheless, he always knew where our car was parked, even in the megasized lots of the Midwest, and one hot summer day, when he was still some weeks shy of his second birthday, Charlie led me several blocks from our house to a bridge whose wrought-iron sides fascinated him. These were not the feats of your average two-year-old. Yet Charlie did not do many of the things other toddlers could. He had no language other than a baby's babble and cries; he seemed to understand even less. He stared for long periods at a picture of a little Asian-American girl in one of his books but never looked at, much less acknowledged, the other children on the playground. Subtle changes in routine--turning right down the sidewalk instead of left--led to tantrums in which he would flip himself backwards, headfirst. Once he walked back and forth, back and forth, before a stone wall, eyes aslant, until we dragged him away screaming. "No" was my wife's answer when, at an appointment for one of Charlie's many ear infections, our pediatrician asked, "Does he know what his hands are? Does he know his name?" Charlie did not know how to wave, much less how to say "bye-bye."

In late March 1999, after an evaluation of his speech, Kristina first told me over the phone: "They think Charlie is...autistic." Many more appointments followed with an audiologist and with speech pathologists and psychologists. A child-development clinic diagnosed Charlie with autism that July after a two-day evaluation during which he refused to perform almost every test. "Is he always like this?" asked one specialist as Charlie lay on the floor clutching his blanket and Barney.

We had our own questions, but the information folder the clinic professionals briefly reviewed with us seemed to have no answers. We were to learn that even the most firmly established facts about autism are not widely known. For example, the "savant" abilities often popularly associated with autism are found in only a small percentage of cases (in the Academy Award-winning 1988 film Rain Man, Dustin Hoffman plays an autistic savant whose gift for "card-counting" at the blackjack tables is exploited by his younger brother). Autism is found in all cultures and in families from all socioeconomic backgrounds. Most autistic people are deemed mentally retarded, though delays in the development of verbal skills render standardized test results problematic. Some autistic children never develop functional speech, while others possess highly sophisticated vocabularies but lack the means to communicate meaningfully with others. Many people with autism also endure auditory and sensory disorders that greatly interfere with their processes of perception. Stereotypic behaviors--toe-walking, rocking, looking out of the corners of the eyes--are signs of overtaxed senses. An autistic child who stares endlessly at a spot of paint is very likely seeking a still point amid the sensory jumble ceaselessly bombarding him.

Some observers have expressed doubts about the nature or even the existence of autism. But the symptoms of the condition are not difficult for an observant lay person to discern, nor is it the kind of disorder pediatricians or educators would mistakenly ascribe to a child in the absence of clear and compelling evidence. Autism may best be understood not as a single entity but as a range of Autism Spectrum Disorders (ASD). A growing number of children who do not necessarily meet all of the criteria for "classic" autism are being diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), an often vague label that some clinicians may invoke to soften the diagnostic blow to parents.

Charlie's diagnosis of autism rang in our ears and hearts like a death sentence. Until quite recently, autism was considered a rare disorder that affected roughly four children per 10,000 births (with boys four times as likely as girls to be afflicted). Over the past decade, however, the rate of new cases has grown. More and more parents of autistic children and medical researchers believe that the alarming number of autism cases cannot be attributed simply to improved methods of detection or a broadening of diagnostic categories. Autism, some now think, may be triggered by food intolerances, weak immune systems in young children, or exposure to environmental toxins.