Autism—Meeting the Challenges of a Puzzling Disorder
CHRISTOPHER was a handsome, well-behaved little boy who stopped responding to his name at 18 months of age. At first, it seemed as if he were deaf, yet he always noticed the rustle of a candy wrapper.
In time, other puzzling behaviors also manifested themselves. Rather than playing with his toys in the usual ways, he would just spin their wheels over and over again. He developed an unusual interest in liquids, pouring them out at every opportunity. This, along with his love for climbing, led to many precarious situations and to a great deal of anxiety for his mother.
Most troubling of all, he was oblivious to people, often appearing to look right through them as though they weren’t there. By the time he was two years old, he had stopped speaking altogether. He spent much of his time rocking himself back and forth, and he began having violent temper tantrums, often for reasons that were incomprehensible to his parents. Bewildered, they began searching for answers.
What was the matter with Christopher? Was he spoiled, neglected, mentally retarded, or schizophrenic? No, Christopher is one of at least 360,000 people in the United States who have autism. This puzzling disorder occurs in 4 or 5 out of every 10,000 children worldwide, posing a lifetime of challenges.
What Is Autism?
Autism is a disorder of the brain in which social behavior, communication skills, and thinking ability fail to develop normally. It affects the way sensory input is processed, causing people with autism to overreact to some sensations (sights, sounds, smells, and so forth) and underreact to others. The impairments of autism produce an assortment of unusual behavioral traits. Symptoms, which usually appear before the age of three, can vary greatly from child to child. Consider the following examples.
Imagine reaching out with love to your own beautiful child and getting no response. This often happens when a child has autism. Instead of interacting with people, most children with autism prefer to be alone. They may dislike being cuddled, avoid eye contact, and use people as they would tools—showing little awareness of others’ feelings. In severe cases some do not seem to make any distinction between family members and strangers. They appear to live in a world of their own, oblivious to the people and events around them. The term “autism,” from the Greek word au·tos´ meaning “self,” refers to this self-absorbing quality.
In contrast with their indifference to people, children with autism may become preoccupied with a particular object or activity, pursuing it for several hours at a time in a bizarre, repetitive manner. For example, instead of pretending that toy cars are real ones, they may line the cars up in neat, straight rows or may endlessly spin their wheels. They display repetitiveness in other ways also. Many are intolerant of change in their daily routines, insisting on doing things exactly the same way every time.
Children with autism may also respond in strange ways to the events and situations that they encounter. Their responses can be baffling, since most of them are unable to describe what they are experiencing. Nearly half are mute; often those who can speak use words in unusual ways. Rather than answer a question by saying yes, they may simply repeat the question (a phenomenon called echolalia). Some use expressions that seem strangely out of place and that can only be understood by those familiar with their “code.” For instance, one child used the phrase “it’s all dark outside” as his term for “window.” Many also have difficulty using gestures and may scream or throw a tantrum to signal a need.
Obtaining Appropriate Treatment
During the ’40’s, ’50’s, and ’60’s, autism was considered by many professionals to be an emotional withdrawal in an otherwise normal child. Parents, especially mothers, were saddled with most of the blame for their child’s problems. In the ’60’s, evidence began to accumulate that strongly suggested that autism results from subtle forms of brain damage (although it is still unknown precisely what these are). This led to a shift of emphasis in the treatment of autism from psychotherapy to education. Special teaching techniques were developed, which have proved effective in reducing problem behaviors and in teaching needed skills. As a result of these and other advances, many with autism have made fine progress, and with adequate assistance and support, some are able to hold jobs and lead semi-independent lives.
However, obtaining appropriate treatment for a child with autism can be a struggle. For a variety of reasons, autism may go unrecognized or improperly diagnosed for months or, in some cases, even years. Educational programs designed for other disabilities may not adequately address the special needs of children with autism. Thus, when trying to obtain needed services for their child, many parents find themselves repeatedly venturing into the unfamiliar world of physicians, educators, and social agencies.
Unlike most youngsters, children with autism do not readily absorb information from their surroundings. Teaching them the basic skills needed at home or in the community is a challenging and slow step-by-step process. The day’s routine can keep a parent rushing from task to task; assisting with dressing, feeding, and toileting; redirecting disruptive or inappropriate behaviors; and cleaning up after accidents. “Until [my son] was ten years old,” one parent recalls, “I was just trying to make it through each day.”
Adding to the strain is the child’s need for constant supervision. “Tommy has to be watched constantly,” says his mother, Rita, “because he has little sense of danger.” Since many autistic children also have irregular sleep patterns, the vigil often extends into the night. Florence, whose son Christopher was described at the outset of this article, comments, “I slept with one eye open.”
As the children grow older, some of these demands diminish while others may intensify. Even when progress is made, almost all those with autism continue to require some level of supervision throughout their lives. Since residence facilities suitable for adults with autism are scarce, parents of autistic children face the prospect of either providing lifelong care at home or, if this becomes impossible, placing their grown children in institutions.
Facing the Public
“Now that Joey is 18,” Rosemarie observes, “the hardest thing for us is taking him out in public. Like most autistic children, he’s normal in appearance, but because of his behavior, people stare, laugh, and make comments. Sometimes he’ll stop right in the middle of the street and begin writing in the air with his finger. If he hears loud noises, like car horns or people coughing, he’ll get very agitated and yell out, ‘No! no! no!’ It really puts us on edge because it can happen at any time.” Another parent adds: “It’s a difficult thing to explain to people. When you say, ‘He’s autistic,’ the term doesn’t mean anything to them.”
Because of these difficulties, the primary-care parent (usually the mother) can easily become isolated. “I’m basically a shy person and don’t like being a public spectacle,” says Mary Ann. “So I would take Jimmy to the playground at times when people usually weren’t there, like early in the morning or at mealtimes.” For other parents the challenge is getting out at all. Sheila remarks: “At times I felt like a prisoner in my own home.”
Keeping the Family Together
In Children With Autism, Michael D. Powers writes: “The single most important thing for a child with autism . . . is that her family stay together.” This is a formidable challenge. The difficulties of raising a child with autism are superimposed on an unimaginable emotional trauma. Intense, painful, frightening feelings rise up that can inhibit communication between marriage partners. At a time when both need extra love and support, neither may have much to give. Despite these extraordinary pressures, thousands of couples have met this challenge successfully.
The book After the Tears, by Robin Simons, draws the following three suggestions from the experiences of such successful couples. First, find a way “to examine even the most painful feelings, and to share them.” Second, reexamine household roles and arrangements, making adjustments so that the work load is reasonably shared. Third, schedule regular times to do things together, just the two of you. Dr. Powers further states: “In setting your priorities, dividing your time, balancing everyone’s needs, and deciding just how much you can take, never allow your child’s needs or your devotion to her to jeopardize your family life.”
Although the effects of autism are profound, individuals affected by it can receive help. An important factor is early recognition, leading to appropriate treatment. Efforts can then be directed into productive channels. The family will not be needlessly consumed if good communication and balanced use of resources exist. The understanding of relatives and friends and their active assistance give parents much-needed support. People’s awareness of autism, as well as their acceptance of individuals with autism in the community, prevents them from thoughtlessly adding to the burdens of these families. Thus all of us can play a role in meeting the challenges of autism.
g95 2/8 pp. 20-23
Do you like this post? Comment, share.