What Happens When They Grow Up

As knowledge about autism spread in the 1990s, families began to get more accurate diagnoses for children who might in the past have been labeled mentally retarded or emotionally disturbed, and the number of cases skyrocketed. Because of the Internet and extensive networking, parents around the country found allies and became powerful and articulate advocates. Even longtime autism researchers say families have really led the way. "Beyond raising awareness," says Dr. Thomas Insel, director of the National Institute of Mental Health, "families have become the real experts on this disorder. They have to figure out how to cope with a child who becomes explosive, disruptive, who could have a meltdown at any moment. They become highly skilled at knowing what helps."

Autism has set all these families on a unique journey and, while the road ahead is still unclear, they cherish small triumphs along the way. Grinker has a Ph.D. from Harvard and, in his community, many parents dream of sending their children to the Ivy League. He and his wife, Joyce, a psychiatrist, know that Isabel will never join them. But raising Isabel has its own rewards. Isabel's sister, Olivia, 13, is "like a third parent," says Grinker. The family judges Isabel not by the standards of others but by how far she has come. "When Isabel achieves something, I feel like we're a team, like we all did it, and I feel incredibly rewarded," he says. For now, that is enough.

© 2006