Living with Autism. Health Matters, Fall 2008
After the movie Rain Man was released in 1988, autism was no longer an obscure and enigmatic disorder rarely discussed outside the medical profession and homes of those affected by it. In fact, in recent years the number of people diagnosed with autism has been on the rise (estimates run as high as one child in 150 births), with only a small number of affected individuals exhibiting the exceptional skills of an autistic savant. Autism is part of a group of disorders classified as Autistic Spectrum Disorders (ASDs)--developmental disabilities that cause substantial impairments in communication, social interaction and behavior. Although ASDs can be detected as early as 18 months of age, onset typically occurs by age three (during the developmental period), and they occur equally in all racial and ethnic groups. Boys are three to four times more likely than girls to be affected, and the disorder endures throughout adulthood.
While Dr. Soteria Karahalios' medical expertise lies in the field of noninvasive cardiology at Community Hospital of the Monterey Peninsula, she's also an expert in the care of an autistic child. Her son Andreas, now 19 years old, was diagnosed with autism at age two, shortly before the release of Rain Man. It was his lack of speech development that led Dr. Karahalios to consult her son's pediatrician.
"He went through some of his earlier milestones, and it seemed that he was normal and appropriate," she says, "but the biggest tip-off was that he didn't speak."
Often, parents seek medical evaluation when their child has failed to speak by the age of two, or appears to have periods of deafness.
When Monterey resident Theresa Meyer noticed that her son, Ethan, wasn't responding to his name, she became concerned that he might have a hearing problem.
"At age two he had tubes in his ears. [After] three ear surgeries we suspected hearing loss, trying to rationalize in our mind what was going on with him. But there came a point when we thought, 'there's something [that's] not right.'"
Most parents of autistic children can recall that their children were different early on. Meyer remembers that Ethan had a peculiar habit of snapping his fingers when he was an infant and that having his hair washed was a traumatic event for him.
"I thought I was a bad mom," she says, now convinced that both behaviors were manifestations of her son's sensory difficulties.
Although the origin of ASDs is unknown, genetics and environmental factors probably play a role, suggesting that autism is the result of several causes. Warning signs include abnormal eating habits and an unusual response to sensory input. People with ASDs often thrive on routine, and deviations from those routines may result in severe frustration and tantrums.
Meyer says Ethan's meltdowns are triggered by loud noises or large groups of people. "He's [also] sensitive to different kinds of foods," she adds. "The look and the smell and the texture have to be perfect for him. If he's not eating very well, he's more likely to have a meltdown."
Not only were Andreas' tantrums also triggered by loud, stimulating environments, but they were brought on by his frustration at being unable to express himself, and by any change in his routine. "They like a routine," says Dr. Karahalios, "and you have to teach them how to transition and accept changes in their routine."
Autistic children have difficulty with social interaction, but it's a misconception, Dr. Karahalios says, to label these kids as antisocial.
"I think the most crucial thing is to not isolate them early on .... The more they can integrate into a regular school, a regular life ... they're more likely to be integrated into society."
Unlike Rain Man's central character, who processed difficult calculations and complex information at high rates of speed, some autistic children show signs of lower than normal intelligence, and the majority are slow to acquire new skills and knowledge. The one unifying concept underlying these developmental disabilities, however, is that no two people are alike.
EDUCATION AND DETECTION
While it is unclear why ASDs are being diagnosed in greater numbers, better education about symptoms along with increased detection and reporting may be factors. Even people with mild symptoms are being classified as having an ASD.
Autism has also received greater media attention as celebrities come forth with their personal stories. Celebrities like Jenny McCarthy and Holly Robinson Peete, both of whom have autistic children, are on a mission to bring greater awareness by stimulating dialogue. Actress Amanda Peet generated a torrent of criticism with her highly publicized statement reprimanding parents who do not vaccinate their children, alluding to the ongoing controversy about the possible association of autism and childhood immunization.
"We were a little concerned about the immunizations early on," says Dr. Karahalios, "and we did modify the way [Andreas] was vaccinated."
According to the Centers for Disease Control (CDC) and the National Institute of Child Health and Human Development, however, there is no conclusive scientific evidence that any vaccine or vaccine component causes autism.
Autism has several red flags (see sidebar that accompanies original article). Broadly, they include repetitive behaviors, difficulty with verbal and nonverbal communication, and difficulty with social interaction. Specifically, they include hyperactivity, short attention span, poor eye contact, a preference for playing alone, the appearance of intermittent deafness and self-injury.
Early diagnosis and intervention are critical and should happen when the child's brain is still forming (preferably before age three). Probably the biggest issue for parents, Dr. Karahalios says, is getting proper therapy and education for their children, both of which are essential to becoming a functional and independent adult.
If parents notice that their child does not babble or coo or gesture by 12 months, say single words by 16 months, say two-word phrases on his own by 24 months, or if his or her child has any loss of any language or social skill at any age, the child should be evaluated by a specialist in child development. Lead and hearing tests should also be performed.
While there is no known cure, a diagnosis of autism does not necessarily mean lifelong dependence on others. Specific educational and behavioral interventions instituted early in the preschool period can help the child realize his or her full potential by providing structure, direction and organization. And for adults living with the disorder, physical and occupational therapy can help them find ways to adapt tasks to match their needs and abilities and identify skills that build on their interests and capabilities--demonstrating that it's never too late to begin treatment.
Autism is a baffling disorder with varying presentations, the diagnosis of which is fraught with apprehension and uncertainty.
"After diagnosis, I, like most moms, went through various stages of denial, anger and despair," Meyer says.
Theresa Meyer has started her own support organization for parents of children with autism, justbeelearning. See "Getting Help" sidebar on page 14 (original article) for further information.
Although the challenge of taking care of an autistic child or adult may seem insurmountable at times, numerous resources are available to parents and other caregivers. Every state operates an early intervention program for children from birth to age three, and under federal laws children with ASDs are guaranteed free, appropriate public education.
With proper evaluation and therapeutic intervention, the autistic individual can optimize his or her chances for leading a productive life.