Charlie's World

A family battles autism

A 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.

The median age of persons with autism dropped from fifteen to nine years in the 1990s. If this increase were merely a result of improved diagnosis, a large population of undiagnosed older autistic children and adults should also have emerged, since this is not a condition that goes away by itself. At the same time, other major childhood disabilities have increased at a much slower rate. A report released in April by the Centers for Disease Control (CDC) found that in Brick Township, New Jersey-site of a suspected autism "cluster"-one in 150 children between the ages of three and ten were affected by a range of autism disorders. The CDC ruled out contaminated water as a factor in this extraordinarily high rate, but the question remains: Is the high incidence of autistic children in Brick an isolated case or the shape of things to come?

While calling for much greater national attention to the causes and treatment of the condition, the parents of autistic children have begun publicly to fight the stereotypes associated with the disorder. Their hopes were on display in the nation’s capital this past April 8 at the "Hear Their Silence" autism awareness rally sponsored by two parents’ advocacy groups, the Autism Resource Konnection and Unlocking Autism. Many speakers at the rally-including several physicians and research scientists-insisted that autism is not a "mental disorder." Two days prior to the Washington rally, the House Government Reform and Oversight Committee heard testimony from parents who are certain that their autistic children first manifested symptoms on the heels of a combined vaccination for measles, mumps, and rubella (MMR). (The committee chairman, Indiana Republican Dan Burton, has an autistic three-year-old grandson; both Burton and the child’s mother suspect that a vaccine triggered the disorder.) Conflicting testimony about the possible vaccine connection was presented by two researchers at London’s Royal Free and University College Medical School. Doctor Andrew Wakefield, a gastroenterologist, reiterated his findings of a possible link between the MMR vaccine and autism, first published in the leading British medical journal, Lancet, in February 1998. Wakefield’s senior colleague, Doctor Brent Taylor, asserted that his own study of 498 autistic children in London, also published in Lancet (June 1999), found no link between autism and the MMR vaccine. The medical establishments in Britain and the United States greeted Taylor’s findings with great relief, but the issue remains hotly contested.

The search for a means to put together the disparate pieces of the autism puzzle continues. As Doctor Thomas F. Anders, a professor of medical psychiatry at the University of California at Davis, explained to the Sacramento Bee in October 1999: "When you can understand the biological mechanisms underlying this disorder, you will understand how the brain works. It is that complicated an illness."

The current debate over the causes of autism is part of a struggle to enlarge the "ways of seeing" autism at a time when the various causes of the disorder remain at least partially shrouded in mystery. It is often said that autistic people can see only parts of an object rather than the whole, but specialists in the field are being similarly challenged to make connections across the traditional boundaries of scientific and medical disciplines. Researchers in the neurosciences have located abnormalities in two regions of the brain in autistic people, while others have discovered several of the genes believed to play a major role in causing the disorder. Just this past April, other researchers announced the discovery of four brain proteins found at abnormally high levels in newborn infants later diagnosed as autistic or mentally retarded.

he flurry of publicity generated by the April congressional hearings obscured a much broader autism narrative constructed of massive anecdotal evidence gathered by parents and disseminated via the Internet and parent networks. As recently as thirty years ago, parents were routinely blamed for causing autism. At the "Hear Their Silence" rally, psychologist Bernard Rimland, director of the Autism Research Institute and a steadfast advocate for families with autistic children, noted that many of the harmful dogmas surrounding autism stood unchallenged until the mothers of autistic people spoke out. In the months following Charlie’s diagnosis, Kristina and I plunged into the vast literature of autism and discovered that the personal narratives of autistic people and their mothers generally offered more lasting insights than the work of leading experts, some of whom have been thoroughly discredited.

In 1967 Clara Claiborne Park, in The Siege: The First Eight Years of an Autistic Child (Little, Brown) offered the first published account of an autistic child raised at home at a time when institutionalization remained the norm. (The Siege appeared in the same year as The Empty Fortress, a best-selling work by psychologist Bruno Bettelheim that held emotionally aloof "refrigerator mothers" responsible for autism.) Clara Park and her husband had three other nonautistic children and knew themselves well enough to dismiss Bettelheim’s claims. With the help of students who lived in their home, the Parks diligently worked to keep their daughter Jessy engaged with the world. Today, Jessy Park continues to live at home as an autistic adult. She is an accomplished painter.

Many parents have found that intensive, highly structured early intervention can provide the best outcome for an autistic child. One such program, applied behavioral analysis (ABA), has children work one-on-one with a therapist, first at a table and later in more natural settings. Children are positively reinforced (rewarded with perhaps a favorite toy at first, later verbal praise as they advance) for correctly identifying objects and learning new words. Children in ABA programs learn that they can attend to a task even if they do not fully understand why they must; many develop abilities sufficient to attend "regular" classes in primary schools. It has even been hypothesized that rigorous early intervention modifies the neural circuitry in a young brain damaged by autism. At the very least, ABA teaches autistic children the way in which they can learn. However, insurance plans rarely cover educational therapies for a condition still labeled as a mental illness, and public school officials have struggled to reconcile requests for costly one-on-one programs (many of which are set up in the children’s own homes) with their own criteria for providing legally mandated "appropriate" education for children with disabilities. Meanwhile, the significant increase in new cases means that virtually every school district in the nation must confront autism, a daunting challenge since each child is unique and educational plans must be tailored around individual needs. Early intervention costs money in the short run but the future benefits are incalculable, both in financial terms (since many more autistic people will achieve a degree of independence) and as a measure of our commitment to social justice for those struggling with disabilities.

Recent accounts of partial or complete recoveries from autism blend faith in the efficacy of early behavioral intervention with a conviction that the biological roots of the disorder will soon be uncovered. These testimonies focus on a wide range of possible links between immune system disorders (manifest particularly in the gastrointestinal tracts of autistic children), and the onset of autism’s neurological symptoms. While genetics clearly plays a role in autism, a growing cadre of parents is also convinced that external agents-not just vaccines but antibiotics and food allergens as well-work as triggers for the terrible symptoms of the condition.

The many accounts by parents of children with severe cases of autism requiring aggressive interventions are all redolent of loving relationships, in whose absence there can be no real understanding of this condition. After Charlie was diagnosed last summer-and given an essentially hopeless prognosis-we created an intensive home-based program of individualized teaching and learning. We located a talented therapist and recruited five students from nearby colleges whose academic interests included psychology and communication disorders. Following a training workshop, they began working with Charlie, teaching him through repetitive drills to identify different objects, imitate sounds, color and draw, eat new foods, and take medicine. Midnight searching on the Internet led us to medical research and parental testimonies about autistic children who have made great gains and even recovered, thanks to special diets. Kristina emptied our house of milk, flour, bread, pasta, cheese, eggs, soy sauce, and sugar, and put Charlie on a diet free of gluten and casein (which contain proteins that some individuals with autism cannot break down properly); he also takes megavitamins and other nutritional supplements. (Fortunately, Charlie, the child of Chinese and Irish American parents, has always had a huge appetite for rice and is acquiring one for potatoes.)

Charlie’s progress thus far has been astonishing. Where a year ago he appeared oblivious to the existence of others, today he enthusiastically solicits handshakes from kids in the playground, perhaps not the typical greeting of a three-year-old but quite a start just the same. Kristina and I continually urge him to "generalize" the fruits of each task he encounters. Any activity-shopping for groceries, visiting the post office, getting a haircut-is a chance for Charlie to apply his newly learned skills of attending and participating. Every minute of Charlie’s, and of our, day is spent teaching him to keep looking at the world with eyes clearly focused. Charlie continues to face tremendous challenges, particularly in the realm of speech, but he has joined a cohort of autistic people who are reshaping the contours of this affliction. Autism is often described as uniquely tragic for striking at the heart of "what makes us human," our ability to engage in meaningful social interaction. Yet we have seen the gift of attentiveness blossom both in Charlie and in the young people with whom he learns: even his fast-talking, somewhat hyperactive parents have discovered a deeper capacity for genuine communication and a changed understanding of our vocation.

Most of all, we have been sustained by Charlie’s own tireless spirit. In early April, the three of us flew to Washington to attend the "Hear Their Silence" rally. Charlie pointed to his photo on one of several picture boards containing photographs of children with autism from the fifty states. We made our way down the National Mall, stopping at a merry-go-round and at all the monuments. At the Vietnam Memorial, Charlie did his own thing, walking against the pedestrian traffic. But atop my shoulders, he climbed the steps of the Lincoln Memorial, and also shared an impromptu lunch on the grounds of the Department of Agriculture building. A year ago we could scarcely have dreamed that he would have come this far. Charlie’s presence at the rally was not a protest but a witness to hope. He gives us faith that, after many more steps, his hands clasped in ours, we can help him to travel the long path into the world.

Published in the 2000-09-08 issue: 

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