Johns Hopkins Magazine - September 1996 Issue

Overwhelmed into Isolation

By Melissa Hendricks
Four-year-old Kenny McGowan will not kiss his mother. He'll hug her. He'll sit on her lap. But no kisses. He is adamant about that. He's not being insubordinate. He simply does not like to have his lips touch anything, not a cheek, not even ice cream.

Kenny is autistic. He does not speak, avoids eye contact, and until he began working with therapists at the Johns Hopkins Kennedy Krieger Institute and special education teachers, he would scream and flee when family friends visited. The inability to communicate emotionally and to interact socially are principal features of the developmental disability called autism, says James Harris, director of developmental neuropsychiatry at the Johns Hopkins School of Medicine and of the Johns Hopkins Autism Clinic. But Kenny also has another problem shared by many people with autism. He responds abnormally to certain sensations.

"Abnormal" means that many autistic people, on the one hand, cannot tolerate certain sensations and, on the other hand, are preoccupied with others. The range of sensation and the types of responses run the gamut. Kenny generally does not like light touch: kisses or brushing his teeth. He also does not like to touch new things with his hands, and prefers instead to explore with his feet. A 5-year-old autistic girl named Corie, who also receives therapy through Hopkins, covers her ears and runs whenever she hears a particular high-pitched phrase on Sesame Street.

On the other hand, Kenny loves deep pressure, such as a firm massage. He also enjoys being tucked into a small space such as a laundry basket. One of Harris's patients, says the psychiatrist, "grooves on the feel of cheerleader pom-poms."

While everyone has smells, sounds, and textures they like and dislike, for autistic people, these sensations are extreme, and can result in unusual rituals and repetitive behavior. For example, many autistic patients (including Corie) like to hold their hands close to their face, and flap their fingers, or to rock back and forth.

It is sort of like seeing the sensory "noise" in the environment, when everyone else is aware only of the clear signal, says David Lerner '82, who is autistic. Lerner has overcome enough of his autistic behavior so that he now lives independently and works as a hydrologist for the state of Delaware. In the hope that he can help professionals and families understand the problems autistic people encounter, he is writing his autobiography.

"Sometimes when I look at you, there are things coming at me from the sides," he says during an interview at his home. He says these things are not physical objects. It is more like sensory data are rushing at him and racing past him, and he cannot absorb all the information. He is overwhelmed.

"It's like I'm on my own frequency of wavelength, and not on other people's," he says. "Think of a four megabyte computer versus a 12 megabyte computer. Or a one-lane highway versus four lanes. My brain is like one lane versus everybody else who has four lanes."

The term autism was introduced in the early 1940s by the founder of child psychiatry at Hopkins, Leo Kanner. For a while the term "Kanner's syndrome" was even used to describe typical cases of autism. Kanner was the first to recognize that the children who withdrew from society and failed to communicate belonged to a distinct group. Before then, for lack of a better understanding of their symptoms, many children with autistic behaviors had been categorized under that catch-all of mental illness labels: schizophrenia.

Much more is understood about autism today, though in many ways it still challenges diagnosticians. The symptoms of one autistic person may be very different from those of another, says Harris, who is a prot‚g‚ of Kanner's. About 70 percent of autistic people are mentally retarded. But among the autistic there are also thoseÄa minorityÄwho display savant characteristics, such as an unusual ability to work with numbers. (Dustin Hoffman portrayed such a character in the movie Rain Man.) It is not surprising, therefore, that autism is often difficult to diagnose. Depending on how stringent the criteria used to make a diagnosis, it strikes between two and 15 out of 10,000 children. Its symptoms generally appear in toddlerhood.

At Hopkins, numerous physicians, psychologists, and therapists diagnose and treat autistic children and adults, and conduct research on the disorder. They weave together many different techniques and therapies, ranging from behavior modification therapy, to drugs for symptoms such as hyperactivity, which can accompany autism. They also work with patients on skills ranging from socialization to physical coordination. The treatment is tailored to the needs of each patient, says Harris.

Patients are seen at the Johns Hopkins Hospital's Children's Center and at the Kennedy Krieger Institute, which last year opened the Center for Autism and Related Disorders. Staffed by physicians, psychologists, occupational therapists, and speech and language pathologists, the Hopkins center provides medical and therapeutic care, and works closely with schools and families to help develop education programs for children with autism.

There is no cure for autism, and only the rare autistic person is able to conquer the disorder enough to achieve goals such as a job or marriage, says Carl Feinstein, the Autism Center's medical director. Few are as fortunate as David Lerner. On the positive side, however, educational methods geared to people with autism have improved dramatically in the past decade, says Feinstein. So autistic children born today may have a greater chance of living independent lives.

Though authorities on autism have not accepted one method of treatment, says Feinstein, "a very strong early intervention should take place." It is becoming increasingly clear that the earlier the disorder is diagnosed and therapy begun, the better the outcome.

Once a week, Kenny McGowan and his mother, Cathy, meet with Lynn Medley, a speech and language pathologist at Hopkins's Center for Autism. The sessions take place in a bright play therapy room filled with colorful toys at the institute's Fairmont Building. Medley tries to teach Kenny the simplest aspects of communication, such as how to pointÄthings other children learn on their own.

Kenny is a slender boy with elfin features that in another child might go with an impish grin. But he doesn't know the meaning of mischief. At the beginning of a recent session with Medley, he sits languidly in his stroller, refusing her attempts to coax him out.

"I am getting. I am getting. Kenny's foot. Kenny's foot," Medley sings, while she spider-walks her fingers through the air to the little boy's foot. She pulls off his socks and shoes, and massages his feet, legs, and arms. Anxiously, Kenny looks at his mother, who is sitting on a couch a few feet away. He participates briefly in the activities Medley initiates, then tries to climb back into his stroller, making high-pitched whimpering sounds. Medley repeatedly pulls him back out.

She presses upward on the sole of Kenny's foot and downward on the top of his knee. "This is called joint compression," she explains. "In the O.T. [occupational therapy] world, they say it gives you information about where you are in space. You get information about where your foot is in relationship to your leg, for example."

She hopes the technique will improve Kenny's ability to coordinate and plan a motion, a skill professionals call praxis. "Praxis is like seeing in your head what you do," explains Medley. "How to get an action started, put together a sequence, what intensity to use, and how you remember how it felt and what it looked like."

Praxis problems, she believes, contribute to Kenny's lack of speech. "It is very hard to coordinate your tongue. Your tongue moves so subtly, and you cannot see it." Unable to coordinate all these subtle steps, Kenny has not even figured out how to make a "d" sound. If he would allow her, Medley would use massage to press on parts of his mouth, teeth, and face, as she does with other autistic patients, to heighten his awareness of those areas, which, with luck, would lead to his experimenting with speech. Because of his aversion to touch, for now Medley mainly massages his limbs. The hope is that massaging will also help Kenny learn to tolerate light touch. With Kenny and her other patients, Medley uses shaving cream, sheepskin, Play-doh, and other substances to help them overcome aversions to different textures.

By the end of the hour, he begins to hum quietly in a hypnotic monotone. "He's zoning, trying to drop off in a sensory way. He has trouble staying aroused," says Medley. So she picks him up and gently spins him around. Working with children like Kenny, Medley says, is like "walking a tightrope." They can so easily shift from agitation to inattention.

When the session is through, Cathy McGowan drives her son over to the Kennedy Krieger's Broadway Building for his next appointment. On the drive over, she explains that Kenny was a normal baby who could say "Mom" and "Dad" by the time he was 18 months old. "I used to say, 'Kenny, do you want to take a bath?' and he'd run to the bathtub." But after he was about 18 months, he started to run away from people. Soon he wasn't talking. Kenny has made some improvements since starting therapy at Kennedy Krieger about a year ago. He no longer screams when strangers come over, she says, and he will take her hand and show her things he wants, which he was incapable of doing two years ago. But it's still a mystery to her why her son is autistic.

Researchers have proposed several different models of autism, but many authorities say no one model may explain all of the disorder's clinical features. "I don't believe there is one core deficit responsible for all the social, behavioral, and communication abnormalities in autism," says Rebecca Landa, associate professor of psychiatry and director of the Center for Autism. "I think multiple systems are involved."

According to one theory, in autism the brain cannot integrate different types of sensory information. The theory goes that people who are autistic do not have a sharper or duller sense of hearing, vision, or any other sense. Rather, their ability to sort out important sensations from unimportant ones may be impaired.

Suppose you are looking at an acquaintance, says Harris. Your brain absorbs information through the visual system about the neighbor's faceÄits expression, size, proximity to youÄand integrates all of the information into a visual gestalt. If the acquaintance speaks or gently reaches out to you, "the brain must also link words with the visual gestalt of the face, and interpret the acquaintance's reaching out toward you as a friendly gesture." But autistic people, according to the theory, have great difficulty integrating all of this information and so might think the friendly gesture is an attack.

Many researchers say that autistic patients cannot "modulate" sensory information. "If an autistic child comes into my office, and the heater and blower are on, he may be oblivious to what we say," because he is captivated by the humming and blowing. "I'm normally inhibiting those things," says Harris, "and he can't."

Other theories hold that sensory problems are secondary, "markers that give scientists a tremendous clue as to what is going on in the brain," explains Feinstein. According to one view, "autistic people lack the ability to recognize that other people have a mind, that they're individuals. So all information coming in becomes meaningless," explains Feinstein. He is quick to point out that so far the evidence has not supported one theory more than another.

The one thing investigators can say resolutely about the cause of autism is that it stems from a brain dysfunction, says Feinstein. A number of studies indicate that autism involves defects in several areas of the brain, including regions involved in sensory processing.

In autopsy studies, Margaret Bauman of Harvard Medical School and her colleagues found that the brains of autistic patients weighed 100 to 200 grams above average. In the hippocampus and amygdala (parts of the limbic system), many cells were abnormally small and packed together, and had fewer connections to neighboring neurons. These parts of the brain are important in processing information about the environment, including the ability to recognize emotion in a facial expression, says Landa.

Further, Bauman found the cerebellum contained 60 to 90 percent fewer Purkinje cells, a major cell in the cerebellum. In addition to coordinating movement, the cerebellum is theorized to play a role in the fluidity of speech and thought.

Most of Bauman's subjects had been mentally retarded, and her sample size was small, notes Landa. Nevertheless, the results support a theory gaining more attention from researchers, which says that the brains of autistic people may have been stunted during prenatal development and the first two years of life. In this process, neurons migrate, mature, and make appropriate synaptic connections. The neurons that do not become part of the meshwork die off. In autistic children, according to the theory, these extra neurons may be preserved.

Several studies suggest that a genetic defect may underlie autism. Through standardized tests and interviews with relatives of autistic patients, Landa identified a spectrum of autistic symptomsÄsuch as having trouble planning a sentence or carrying on a normal conversationÄin "an order of magnitude that was striking," she says.

Cathy McGowan does not spend a lot of time thinking about what goes on in Kenny's brain. "Our number one priority is communication and social skills," she says.

When McGowan wheels Kenny into the occupational therapy suite at the Kennedy Krieger Institute, Kenny does not hesitate as he did in the play therapy room. He climbs right out of his stroller and into a highchair in one of the curtained-off sections of the large room. "He gets to eat a lot here," explains his mom.

Occupational therapist Mary Lashno arrives, carrying a yellow plastic bowl of vanilla ice cream, which she places on the tray of the highchair. The ice cream is a treat and a lesson. Kenny scoops up a spoonful and places it in his mouth, carefully curling his upper lip back as far as it will go to avoid touching the ice cream or spoon. With each bite Kenny takes, Lashno gently pushes his lips together so that they touch the spoon and ice cream. Kenny tolerates this because he loves ice cream.

Lashno next removes his shoes and socks, helps him down from the highchair onto a big red mat on the floor in front of a large wall mirror, and sticks a lump of green Playdoh on the mirror. Kenny squashes it with his feet. No matter what material they work withÄbuckets of rice or corn, PlaydohÄKenny insists on touching it with his feet first, Lashno explains. "Feet are his little gauges."

Lashno tries to get Kenny to climb onto a large swing, but Kenny definitely does not want to do that, so she allows him to crawl back into his strollerÄwhat she calls his "womb space." She averts her eyes whenever Kenny gets uncomfortable.

"I'm still trying to show him I'm his friend," she says. When an autistic child senses a distressing light, sound, or smell, all the child's attention is focused on that stimulus, says Lashno. The child is prepared to flee and cannot pay attention to anything else. That gets in the way of learning. "I always correlate it to being in a room with a snake and being told to learn something," Lashno says sympathetically. "You think I'm going to learn something when a snake is in the room?"

"The senses are our first elementary contact with the environment," says Harris. "All we learn about the world we learn through our senses." As young children mature, they learn to evaluate sensory information and draw conclusions, a process that taps into the emotions: "That man is smiling at me. He must like me. That makes me happy." In responding, children also learn to demonstrate their own emotions. They smile back.

Since they have difficulty processing sensory information, autistic children often don't recognize that someone is smiling at them. Instead of returning the smile, the child might maintain a poker-face. This flat affect is common in autism, and particularly painful for parents.

"What could be more distressing than to have a child who does not respond in a normal emotional way or who cries when a parent smiles?" says Harris.

So part of the job of working with higher-functioning autistic patients is helping them learn the vagaries of social communication, such as affect, says Harris, who specializes in counseling autistic adolescents. An autistic patient may master language, but still not understand the non-verbal cues of social interactionÄlike drumming one's fingers on a desk to express impatience, or yawning to show boredom. "Almost uniformly, even when they can gauge their own feelings, they still can't gauge others'," says Harris.

It was for that reason that David Lerner spent the better part of one summer watching soap operas.

Frances and Monroe Lerner live in an old rambling house in a western suburb of Baltimore. It is loaded with books accumulated over a lifetime. Monroe Lerner, a professor emeritus of health policy and management, taught and did research at the School of Public Health for 26 years. Frances Lerner taught political science and sociology at the University of Baltimore.

As the crickets and bullfrogs try to outsing each other one muggy night this past spring, David Lerner and his mother relax over cool drinks in the Lerners' living room and chat about David's growing up. An animated man with dark hair and a stocky build, the 38-year-old willingly answers questions about himself, but lets his mother do much of the talking.

"When David was about 3, he wasn't talking," recalls Frances Lerner. "He was cheerful and bright, but he was in his own world." Throughout his childhood, he reacted strangely to certain sounds. A barking dog or a hissing gas stove would make him cover his ears and scream, or run away. Like Kenny McGowan, "he wouldn't come for kisses," says Frances Lerner. He'd allow his cheek to be kissed, but he would never kiss anyone.

"I'd kiss like this," adds David Lerner, and he kisses his palm and places it on his mother's cheek.

In the early '60s, when David was a toddler, little was known about autism, says Frances Lerner. When David was 3, a neurologist diagnosed him as mentally retarded and recommended that he be institutionalized. A few months later, doctors concluded that he was severely emotionally disturbed.

Those diagnoses never seemed to explain David's behavior, says Frances Lerner. After the family moved to Chicago a year later, she and her husband hunted through the psychological literature for two years to find a description of behavior that would best match their son's. They finally realized that David was autistic.

However, knowing what to call David opened a new packet of problems. "Autism used to be called the Mommy Disease," says Frances Lerner. "The mommies did it." Psychologists like Bruno Bettelheim said that "refrigerator mothers," who withheld affection, drove their children to be socially withdrawn and uncommunicative. Fortunately, Frances Lerner had an older child, Robert, who was not autistic, which helped convince her that she was not to blame for David's autism.

In his autobiography, David calls his first five years of life his "extended infancy." Human relations were foreign to him, he says. "I used other persons around me as tools. I just didn't see them really." In the grocery store, he would ram the grocery cart into shoppers.

Slowly David began to emerge from what is called the autistic state. Around his fifth birthday, he began to talk. "It was like walking through quicksand," he recalls.

The Lerners enrolled him in a school that specializes in educating autistic children. "We gave him speech lessons and acting lessons," says Frances Lerner. When David could not read his assigned books quickly enough, his mother read them to him. "We tried in every way to help him improve. And yes, he did," she says. About the time he was 6, says David, "I began realizing something was not right, and I wanted to make it right."

He learned to "tune out" the extreme sensory stimuli, the noise in the system that rushes at him, he explains. While high-pitched sounds continued to bother him (and still do, though not as much), he learned to grit his teeth instead of running away from them. "I can accommodate it," he explains. "I've learned to hold myself together, not to get all bent out of shape about it."

With practice, he even learned to look people in the eye, and now makes at least as much eye contact as an average preoccupied Hopkins scientist.

After spending several years in a special education class at a public school, young David entered a regular fifth grade class. Sometimes with extra help, he progressed academically. But he had few friends, and in high school, when other kids started dating, he did not.

It was clear to Frances Lerner that her son did not understand the emotional underpinnings of friendship. So she came up with an idea. The summer before David enrolled at Hopkins, he and Frances became students of the soap opera. Every afternoon, they watched All My Children, and Frances Lerner would quiz her son: "Why does Erica act the way she does? Why is that man crying? Why are they in love? What is friendship? What is the context of their friendship?"

"It isn't enough to sense the emotionÄyou have to explain what you're sensing," she says.

At Hopkins, David Lerner majored in earth and planetary sciences and received an award for "Unique and unprecedented achievement in overcoming a childhood handicap and completing his undergraduate studies." In 1986, he earned a master's degree in geology from the University of Delaware.

Hints of autism remain for David. He is still what you might call a "hyper" person. During a conversation, he taps his leg, drums his fingers on a chair, stands up to pace the room.

Touch is still problematic, though less than it was. "I can hug now. I can do that," he insists. And it is true that for a person once diagnosed as severely autistic, he has made enormous strides. He owns a townhouse in a suburb of Newark, Delaware, where he lives with his two cats, George and Gracie. As a hydrologist for the Delaware Department of Natural Resources, he oversees the clean-up of leaking underground storage tanks. In his free time, he enjoys playing computer games, watching TV, and working on his autobiography. In many ways, he is like other people.

Getting the right help was a big factor in helping him succeed, says Lerner. "My parents somehow impressed on me that something was wrong with me and I needed to overcome it," he says. "I came from an academic family, one that was not embarrassed and did not hide me. The fact that my parents took me to public places did help."

When Leo Kanner defined autism, he said that people with the disorder lack social understanding. They do not understand that they have a self, and that they belong to a social species.

David Lerner kept to himself when he was a young child, but was not aware he was alone. When he started to emerge from the autistic phase, says Monroe Lerner, "He'd ask me a million times, 'Tell me what's wrong with me and I'll fix it.' The very fact that he asked me a question indicates that he had an awareness."

David Lerner has continued to learn more about his disorder and how it affects other people. But awareness comes with a price. He increasingly realizes that he is different and that this difference makes him socially isolated. "It gets more painful all the time," he says. Ironically, loneliness for Lerner is a sign of recovery.

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