When Pond was diagnosed with autism almost 30 years ago, his mother, Debbie Pond, kept her expectations high: She told a parent support group she wanted him to attend school, make friends, go on an LDS mission, fall in love and raise a family.
"[The parent leader] slammed his hand down on the desk and said: 'You guys need to get real. Your son will never do these things,' " she remembers.
She explains this while sitting with Pond and his wife, Leann, in the couple's town house. Pond served an LDS mission, works as an armored truck guard, has an associate's degree and plans to get his bachelor's.
His level of success is rare, according to University of Utah researchers who recently tracked down adults who were diagnosed with autism from 1960 to 1984 and had higher scores on intelligence tests as children.
Nevertheless, the researchers and his family say Pond can offer inspiration in a state with a higher-than-average rate of autism, a disorder marked by unusual behaviors and difficulty communicating and interacting.
"We thought that could provide some hope," says William McMahon, chairman of the U.'s psychiatry department, who is overseeing the study and is director of the Utah Registry of Autism and Developmental Disabilities. "We wanted to find out, at best, what can you tell parents about what their children might become 20 years later."
'For us, that's hope.' In the 1980s, McMahon, other Utah researchers and the University of California School of Medicine in Los Angeles painstakingly found every autistic Utahn under age 25. The team reviewed their medical and education records, tested their IQs and interviewed their families.
Back then, there were four autistic children and young adults per 10,000 people. Today, autism is diagnosed 20 times more often among children.
But researchers know relatively little about the lives of autistic adults. Two years ago, U. doctoral student Megan Farley began tracking down the Utah children who had IQs of 70 or above (the average is 100).
She interviewed 41 adults, spending eight hours with the now 22- to 46-year-olds and their parents or spouses, assessing whether they would still be considered autistic, since the standard has changed. She tested their IQs and evaluated their quality of life.
McMahon and Farley were surprised to find half were doing better than what parents and teachers thought was possible. They had full- or part-time jobs. A few are married and have children. They have friends or acquaintances. One man is no longer considered autistic, having taught himself how to interact by watching movies and reading books.
"It surprised us that some of them drive, just because of all of the unexpected things that occur while you're driving," Farley says. "For us, that's hope."
A peek down the road. But the other half live in group homes or with parents. They may have jobs but need supervision. They have few to no friends. One works as a janitor two hours a day and returns home to his rituals: watching movies and routinely checking for the mail. Some lost abilities.
"For us to be able to get a peek at what happens down the road from interventions that happened 20 years ago, that's incredible," says Pete Nicholas, director of the Carmen B. Pingree Center for Children with Autism in Salt Lake City. "There are those great outcomes and everybody should strive for the best they can do for their children. Recognize there will be those [children] you'll be excited about because they learn words."
The study's findings may be published later this year. McMahon and Farley hope to interview the remaining adults and eventually learn what made a difference. In explaining the quest, McMahon points to the 2006 book Send in the Idiots, in which author Kamran Nazeer tracks down four autistic classmates 20 years later.
The word "autism" comes from the Greek "autos", which means "self," Nazeer noted.
"So much of what animates our lives - conversation, thought, creativity, friendship, politics - draws on understanding the world of other people," he wrote, "and yet autistic people may only be able to rely on one 'autos,' their own."
'They can make it.' Pond says he felt alone and unaccepted growing up. Struggling to understand what was going on in grade school, he would blank out so intensely that adults worried he was having seizures. As a teen, he wished he could take a pill to make his disorder disappear.
While Pond is still considered autistic - he struggles to comprehend what he reads and he is socially awkward - he feels he has beaten the odds. He credits his parents and good teachers.
He and Leann, a special-education teacher, met on a blind date and were married in the Mount Timpanogos LDS temple four months ago. They say they share values and goals, including eventually having children.
"I do have my downfalls and weaknesses," Pond says, "but at the same time, I don't use that as an excuse."
Leann says his autism didn't scare her. "Who can define normal anymore?"
Pond added: "I wanted to be able to show that someone who is dealing with an autistic child, they can make it."
hmay@sltrib.com
