Iowa Alumni Magazine | April 2005 | Features

A Different World

By Kathryn Howe

Few toddlers can pronounce “pachycephalosaurus.”

Steven could.

Even fewer three-year-olds can name 100 other dinosaurs by heart.

Steven could.

And it’s doubtful that even the brightest and most precocious preschooler can converse with a paleontologist at Chicago’s Field Museum.

That’s right. Steven could.

Besides their son’s staggering knowledge of all things dinosaur, Steven’s parents noticed other ways in which their little boy seemed different from other children. His memory was simply incredible. The high-pitched squeal of a fussy baby gave him fits. The smallest disruption in routine could send him into a rage, making a simple trip to Wal-Mart a very risky business.

“We were just breezing through parenthood with our two older girls,” says his mother, Jamie Orton Achrazoglou, 88BA. “Then along came Steven.”

Steven Achrazoglou

The answers to John, 81BA, 94MA, 03PhD, and Jamie Achrazoglou’s concerns came in fall 2001. Steven had Asperger’s syndrome. Characterized by average to above-average language skills and an obsession with certain subjects, Asperger’s is but one manifestation of a baffling disorder that produces a wide spectrum of symptoms, abilities, and behaviors.

That disorder is autism—and with a substantial increase in diagnosed cases in the past two decades, it’s currently the fastest-growing developmental disability in the United States. According to the U.S. Centers for Disease Control and Prevention, autism may affect as many as one of every 166 children.

No one knows exactly why; experts disagree over whether these numbers actually represent more autism or improved diagnostic vigilance. But, whatever the reason, the phenomenon has captured public attention and most notably that of the federal government. In recent years, lawmakers have convened several expert panels to discuss approaches to the problem and devoted millions of dollars to research.

Autism currently has no cure, but a number of institutions, including the University of Iowa, are hoping to learn more about this devastating illness. Ultimately, researchers such as the UI’s Thomas Wassink, 97R, 98F, 99F, want to discover why autism robs its victims of what he considers “the things so basic about being human.” The ability to respond to loved ones with smiles or hugs, to meet the gaze of a friend, to build meaningful relationships—in the autistic child, these capabilities are either absent or damaged.

“It’s like you landed on another planet and you don’t know the language, you don’t know the customs, and you don’t know the social rules,” explains Sue Baker, 74BS, state consultant for the UI’s Regional Autism Services Program (RASP) in the Child Health Specialty Clinic at the Center for Disabilities and Development, which provides a variety of resources to parents, professionals, and schools across the state. RASP (see sidebar) serves 2,700 Iowans ages three to 21 who have autism.

This past fall, Baker participated in an expert work group in Washington, DC, to help the Centers for Disease Control, the National Institutes of Health (NIH), and the Autism Society of America develop a national roadmap for comprehensive autism services, from early screening to insurance coverage. For Wassink’s part, he’s continuing the work of the UI’s former leading autism researcher, Joseph Piven. In collaboration with the University of North Carolina, where Piven now works, Wassink’s team is halfway through a five-year NIH-funded project to examine the biomedical and behavioral aspects of autism.

Once viewed as the consequence of “refrigerator mothers” or “cold parenting,” autism wasn’t even considered a biological disorder until the 1960s. While the causes behind autism remain a mystery, each day scientists inch closer to understanding. The illness derails the brain’s circuitry, but discovering just how is like piecing together a giant jigsaw puzzle. Slowly, the clues surface. Researchers know that children with the disorder show an elevated level of serotonin, a neurotransmitter that regulates brain function and behavior. They know that their brains show excessive growth from six months to two years and that siblings of autistic children are 25 to 50 times more likely to develop autism.

It’s now clear that an underlying genetic factor, most likely coupled with an environmental component, triggers autism for some. Concerned parents’ groups have pointed to vaccinations containing mercury preservatives as the possible environmental culprit, but a 2004 Institute of Medicine report and other recent studies have found no link. Some experts believe the timing of vaccines such as the MMR (measles-mumps-rubella) simply corresponds with the age at which autism symptoms become more obvious. Diagnosis often occurs when a child is between 18 and 36 months old.

Autism is considered a “spectrum disorder” because the range and intensity of symptoms is great—from the more severely impaired hand-flapping child who avoids eye contact to higher-functioning children such as Steven who are intelligent but lack social skills. The occasional “Rain Man” savant may come along, but that’s extremely rare. While many nuances exist, three common factors are present in affected children: a delay in communication, the inability to forge social ties, and odd, repetitive behaviors—in Steven’s case, he picks the rubber off the bottom of his shoes. Other similarities include a vulnerability to food allergies and gastrointestinal problems. Many children fixate on certain objects, favor routines, and don’t like loud noises or human touch.

Autism is four times more likely to occur in boys, although no one can explain that, either. In their Greek-Orthodox family, having a son after two daughters was a big deal for the Achrazoglous. A serious and alert baby, Steven hit all his major developmental milestones. He talked early and showed great proficiency in the subjects that intrigued him, namely computers and prehistoric beasts. He never showed much interest in anything that required fine motor skills, such as coloring or puzzles, and he was easily agitated and physically clumsy. Now eight years old, he still struggles to tie his shoes.

A team of specialists, including child psychiatrists from the UI, diagnosed Steven with Asperger’s at age five and constructed an individualized education plan that would meet his needs at school. In Iowa, children with autism are placed in classes with the general student population whenever possible.

While Steven shows interest in other people, he’s happiest when left to his own devices. He likes to wander around the house, play video games, or perhaps sit alone in the family car. Every now and then, a college-level word comes floating out of his third-grade mouth. Words come easily; making friends is another matter. Steven attends regular class at Shimek Elementary in Iowa City, although he has weekly “pullout” sessions with speech, occupational, or behavioral therapists. He also has a “safe spot” in the school’s special education room, where he can retreat if he feels overwhelmed or upset. Like many Asperger’s children, he relates better to adults, so playground and lunchtime with peers can be challenging.

“School’s tough on him,” says Jamie Achrazoglou. “I worry all the time. Just when things are going well and I relax, something else will flare up. It’s like having a two-year-old who never grows up. I think about him living at home forever.”

Nancy Shaffer has similar worries about her son Bob. A 17-year-old sophomore at City High School in Iowa City, Bob falls in the middle of the autism spectrum. Diagnosed at age four, after his parents noticed his delayed verbal skills and penchant for behaviors such as spinning pans on the kitchen floor, he’s now a happy teenager with a great deal of self-confidence. He never misses a school dance, manages the boys’ basketball team, participates in track and Special Olympics, volunteers in the community, and has many friends. Upon meeting someone new, he might break the ice with: “Hi, I’m Bob and I’m autistic.”

Learning is hard for Bob because of his literal thinking, which is common among people with autism.

“My husband once teased me about how everything was in black and white when I was growing up,” says Shaffer, a development associate with the UI Foundation. “We were talking about television. Bob took that to mean the whole world was in black and white.”

No two children with an autism spectrum disorder are alike. Some children have symptoms from the start; others develop language skills only to lose them. Wassink, a laid-back 40-something in blue jeans, says that autism is likely caused by multiple interacting genes and that these interactions differ from one person to the next. At his lab in the UI’s Medical Education Research Facility, Wassink and his colleagues analyze DNA from families with a history of autism to identify genes or genetic variations that may predispose people to the disorder. “Nobody has definitively found a genetic variant that they know is related to autism,” Wassink says. “Autistic people tend not to have children, and people who have autistic children tend not to have more. This makes studying the hereditary and genetic links more complex.”

To help locate genes, the Iowa scientists are attempting to distinguish their study families on the basis of certain characteristics such as language impairment or a specific, repetitive behavior. This approach has helped them identify four chromosomal regions that appear most likely to contain diseased genes, which is perhaps the project’s most significant accomplishment to date. With further funding, Wassink hopes that these efforts will eventually lead to more targeted treatments based on autism’s underlying genetics.

Until there’s a cure, specialists prescribe various therapies. One widely used approach is applied behavioral analysis (ABA), which uses repetition and reward to teach children verbal and social skills. Such therapies require a significant commitment on the part of professionals and parents. In ABA, a therapist may break a simple task such as asking for a glass of milk into many parts and teach that skill over the course of several hours. Parents learn to reinforce progress at home, siblings can strengthen skills through play, and even a pet can help a child establish important bonds. The earlier the treatment, the better the outcome. Children treated before four years old show marked improvement because their brains are better equipped to receive new information.

In their pursuit of the magic bullet, some parents try more experimental approaches such as chelation therapy, which uses drugs to strip the body of metals believed to contribute to autism. Others pursue controversial diets and vitamin therapies. Because so much remains unknown about autism, it’s hard to judge what works. But Baker is steadfast in her belief that “children can improve and be the productive citizens we want them to be. Families can be happy families. It just takes effort and time.”
She points to Temple Grandin, an animal behavior expert, author, and college professor who happens to have autism. Grandin’s research has produced ground-breaking insights into how people with autism think, and she stands as a shining example of the possibilities that exist.

Shaffer attributes her son’s smooth adaptation and success to the interventions and inclusive atmosphere that the Iowa City school district offers. By law, schools must provide appropriate education to all children, and Iowa excels at that. Baker points out that Iowa has the fewest lawsuits from parents who feel their special-needs children aren’t receiving proper schooling.

But, the older her son gets, the more frustrated Shaffer becomes with the resources available to him. Both she and the Achrazoglous agree that the existing structure expends much time, energy, and money on children with autism, but not enough on adults. Some people with higher-functioning autism do attend college, establish careers, and marry. Some live in group homes and others require lifelong care.

Iowa offers a particularly unique service in the Homestead, a living and learning center in Runnells, where about 25 autistic adults find a supportive home and working environment. But most states offer few residential and vocational options for adults living with autism. Some still end up homeless or in institutions, because typical programs that serve people with mental retardation often don’t meet their needs.

“The social issue is a huge problem for autistic people, and there are few things for them to do in the community,” says Shaffer, who hopes Bob may be able to attend a small college for vocational training and live and work independently.

Bob has additional plans. He wants to get married and have two children. If his dreams come true, perhaps new medical breakthroughs will mean his kids will grow up in a different world—one without autism.