Fighting for Children with Autism

Sally and Graeme Luke brought their sons, Philip (left) and Nigel, to Alumni Reunion in May.

by Becky Straw

This academic year, the Lehigh University Alumni Association selected Autism Speaks as its fourth annual spotlight charity. According to the Centers for Disease Control and Prevention, one in 150 children has autism. As the nation’s fastest-growing developmental disorder, autism touches the lives of many Lehigh community members, from parents to researchers to businessmen to psychologists. Here is a look at what just some of them are doing to make a difference.

At 28 months, Nigel Luke had a formidable lexicon for a toddler, but he did not understand how the words related to each other. Instead, he used language as labels.

“We were at a private psychologist’s office and he said, ‘Nigel needs a fridge and a stove,’” his mother, Sally Hood Luke ’89, recalls. “A grammatically correct, perfectly pronounced sentence—but what does it mean? I would have preferred two words: ‘Me hungry.’”

Two months later, at 30 months, Nigel was diagnosed with an autism spectrum disorder, a suite of complex brain disorders that impairs a person’s ability to communicate, interact with others, and behave normally.

When Luke had carried her newborn home in 2001, she thought Nigel was the perfect baby and she would be the perfect mother.

Two years later, the first-time mother sobbed as she clutched her perfect baby to her chest. For the past month, the toddler had completely stopped interacting with Luke or her husband, Graeme Luke, and his speech was reduced to repetition. When his mother held him, he did not make eye contact with her.

“Come back. Come back,” she screamed, only to hear her words hollowly echoed by her son. “Come back. Come back.”

In his first few months, Nigel had achieved all of his developmental milestones early or on time. He sat up, rolled over, and crawled commando style. To Luke, the athletic infant seemed destined to be a star soccer player.

But when he was 10 months, Luke’s fantasies of being a soccer mom dimmed.

“He stopped pointing, waving, imitating. It had just started, then it disappeared. He didn’t want to walk anymore. He didn’t want to hold hands,” his mother says.

From 10 months until 24 months, Nigel developed slowly, attaining only the bare minimum of skills required to be considered normal. When her child did not walk on time, Luke would not allow him to crawl, and when he was slow to learn language, she carried on an ongoing monologue. Through her determination, Nigel learned to both walk and talk.

Meanwhile, Luke fruitlessly scanned the Internet for information in her free time.

“I was looking for him not to have autism. I wasn’t finding out that he did, but I also wasn’t finding out that he did not,” she says.

Finally, after two years of searching and another major regression, Nigel was diagnosed with an autism spectrum disorder.

“I was looking for him not to have autism. I wasn’t finding out that he did, but I also wasn’t finding out that he did not.”

“It presents itself differently in every person”

When Dr. Alan Rosenblatt ’82 attended Lehigh University, many people believed that poor parenting caused autism. That’s not true, says Rosenblatt, a specialist in neurodevelopmental pediatrics and an expert in autism.

Those with autism have abnormalities in the brain’s structure and chemistry, mostly caused by a genetic predisposition triggered by outside factors.

“It is thought to be strongly genetic, but there is no one single mutation that causes the disorder,” Rosenblatt says. “Autism Speaks (a nonprofit advocacy organization) has funded studies that have uncovered a number of genes with mutations linked with autism spectrum symptoms on almost every single chromosome.”

Because autism may arise from a number of different causes and its effects range from mild to very severe, specialists consider it to be a “spectrum disorder” rather than one discrete syndrome, such as Down syndrome, says Christine Cole, professor of school psychology at Lehigh University.

“A major characteristic of autism is its heterogeneity. It’s distinguished by a pattern of symptoms, rather than one single symptom, and it presents itself differently in every person. This creates a number of challenges for professionals involved in diagnosis and intervention efforts,” Cole says.

She should know. Her research focuses on developing and evaluating effective methods for assisting individuals with pervasive developmental disorders, such as autism.

Those with autism usually exhibit impairments in their social interactions, communication, and behavior, she says. Other common characteristics of autism include preoccupations with narrow topics, hypersensitivity to sound or light, and aversions to changes in routine.

“Impairments typically affect both the quantity of interactions—individuals may speak less to other people—and the quality of interactions—they may interact in an unusual way,” Cole says.

For example, some people with autism do not speak at all. Others have a vocabulary rivaling a Webster’s Dictionary, but they use the words strangely.

Nigel will occasionally refer to himself in the third person or confuse the pronouns “I” and “you.” His 4-year-old brother, Philip, does not have autism but exhibits several autistic traits. He never switches his pronouns, but struggles to pronounce words correctly.

“To fight for the child I in fact had”

Treatment, like the disorder, must be tailored to the individual, Rosenblatt says. When he sees an autistic child, Rosenblatt will examine his behavior, language and motor skills, and his cognitive abilities before prescribing treatment.

“I felt as if I was given a death sentence for him,” Kattouf says. “I looked at him differently. Then I had an epiphany: This wasn’t the end. It was a call to arms. It’s a fight. It’s a battle for life, for your kid’s future.”

One of the most effective treatments, Applied Behavioral Analysis (ABA) therapy, blends psychological and educational techniques to teach basic life skills.

Therapy—especially if it is administered before a child’s fourth birthday—can dramatically alter an autistic child’s future. Through early intervention, many autistic children have been able to enter mainstream schools, and a few even have lost their classification as autistic.

“In studies, intensive early intervention services showed clear advantages,” Rosenblatt says. “Somehow, a child’s brain is stimulated to establish new pathways or to make healthy pathways stronger.”

Through a myriad of therapies, Nigel has learned to use pronouns properly and has developed many other skills. Today, his mother says, the active 7-year-old is barely distinguishable from other children his age.

“He’s doing very, very well, but is still autistic,” Luke says. “Once upon a time, I held a perfect baby in my arms. The loss of that idealized child was a horrible experience. But with guidance and help from others, I woke up from that nightmare, to fight for the child I in fact had, with every resource I could personally muster.”

Tom Timen says that his grandson Justin needs daily attention.

A call to arms

Third-generation Lehigh alumna Pam Timen Kattouf ’88 knows what hard work and determination can do.

When her son, Justin, was diagnosed with autism at age 2, the doctor told Kattouf that he would never speak and that he did not and could not feel affection.

Now, the little boy tells his mother he loves her.

When she first heard the diagnosis, Kattouf was crushed. “I felt as if I was given a death sentence for him,” she says. “I looked at him differently. Then I had an epiphany: This wasn’t the end. It was a call to arms. It’s a fight. It’s a battle for life, for your kid’s future.”

After Justin’s diagnosis, Kattouf’s career veered from its previous path. The political science major had already earned her master’s degree in elementary education, but before Justin turned 3, she returned to school to become certified as an ABA therapist. Today, Kattouf lectures on autism spectrum disorders as an adjunct professor at Seton Hall University in New Jersey.

Every member of the Kattouf family assists Justin, including his older brother Steven, 8, who is “Justin’s best teacher,” his mother says. Kattouf’s father, Tom Timen ’58, and his wife were also trained in methods to care for children with autism and frequently babysit for Kattouf’s children.

In 2004, Kattouf, along with other parents of autistic children, founded the Garden Academy in West Orange, N.J. The school teaches language and social skills as well as positive behaviors to people with autism from 3 to 21 years old. Although Garden Academy receives some funding from Autism Speaks, it also relies on fund-raisers—frequently attended by Kattouf’s former Delta Gamma sisters and her classmate, Bryan Kleppe ’88, as well as her father’s friends, Howard Benedek ’58 and Dick Liroff ’58.

Through classes and his mother’s attention, Justin has learned to speak and interact with other people. Kattouf hopes that one day, her son’s ailment will be imperceptible.

“He’s not where I want him to be, but—are you kidding me? He will get there,” she says. “My message is a message of hope. He will continue to thrive and make wonderful strides.”

Kattouf’s message is echoed throughout the autistic community. The developmental disorder has not been cured, but those with autism are learning to thrive.