Bringing Up Jeremy MRI
Page Three
Jeremy’s ability to focus on singular details also has led to a fascination with and aptitude for computers. He’s learned several computer platforms, nearly even memorizing entire books on how they function. A self-proclaimed “computer hack,” he’s broken codes of online gaming systems. As a member of his school’s “Botball” robotics team, his programming skills have proved vital: Jeremy’s robot can talk, and he even has designed ways to make it paralyze enemy robots.
About one child in 150 develops an autism spectrum disorder, according to a study released in February by the Centers for Disease Control and Prevention. With roughly 560,000 U.S. children struggling with these disorders, they are more prevalent than pediatric cancer, AIDS and diabetes combined. Although autism’s cause is unknown, scientists have long suspected that it stems from the way the brain is wired, that the circuitry is different from the norm.
In 2003, a study revealed that a particular gene (known as neuroligin) was mutated in many patients with autism. For Jim, those findings represented a chance to build a bridge between his work and his life.
Neuroligin is involved in synapse formation, or how nerve cells communicate with each other. From his many years of working with roundworms, Jim understood how he could rewire the creatures genetically. The worms have nerve cells similar to humans. What, wondered Jim, would happen if he disrupted the worm’s neuroligin gene? And what might that tell us about autism in humans?
Jim applied for and received a grant from Autism Speaks, the nation’s leading funder of private autism research. He now is studying the behavioral changes in worms with neuroligin disruptions. The worms, Jim has discovered, have sensory deficits and restrictive exploratory behaviors. “These are characteristics often associated with autism spectrum disorders,” he says.
The research may help scientists figure out whether they can stimulate the synapses to form in children. It also could help them learn how such treatments might offset problems in brain “wiring” associated with autism.
The Rands’ younger son, 12-year-old Marty, also has been diagnosed with a mild form of autism known as pervasive developmental disorder. Like his older brother, Marty often has difficulty grasping the importance of day-to-day tasks. Why is it important to comb your hair? Who cares if you brush your teeth? Kathy and Jim can teach the basic skill, but the struggle comes when the boys see no need to perform the act.
“When people have children, they envision being able to share the things they feel, things like taking care of other people and making the world a better place than how you found it,” says Kathy, who now serves as president of the Autism Society of Central Oklahoma. “It’s really tough for us as parents, because concepts like empathy and emotion are hard for people on the autism spectrum to understand.”
Increasingly, people are beginning to understand. Autism diagnoses have risen tenfold since the 1980s, and the once obscure disorder has garnered cover stories in Time and Newsweek and countless features in national and local news media. In December, President Bush signed the Combating Autism Act, authorizing nearly $1 billion over a five-year period to fight autism through research, screening, early detection and early intervention.
As Jeremy prepares for college, where he plans to study computer engineering or physics, he is doing his part to increase autism awareness. He works with his teachers to help them understand more about the autism spectrum, and he also participates in panel discussions on the topic with educators and fellow students.
Although he recognizes that he’s wired differently than most people, Jeremy doesn’t necessarily see it as a disadvantage. “I may have Asperger’s, but I’m not stupid,” he says. “I just sort of keep the hard facts and my emotions segregated. When teachers tell me to do something, I just ask why. If they say I can’t wear hats at school, I want to know why.”
Kathy and Jim have spent more hours than they can remember explaining why. That’s why, for Jim, the chance to research autism represents a rare opportunity. “It’s not that I’m going to go to a lab and come back with a magic bullet,” he says. “But there is a lot of anguish associated with having children with disabilities, and if I can help, that would be important.”
