Life behind the labels
The journey from diagnosis to treatment is not one for the faint of heart, as Karen Enfield, a mother of two in San Jose, CA, can attest. Last July her son, Asher, was diagnosed as autistic at age 2.
Like many parents, Enfield could tell almost from the moment Asher was born that he was not like other infants. "He seemed to have an amazing gift to be at peace," she says, recalling how he never cried for her to come pick him up.
At about 18 months, however, she saw Asher's behavior differently. Her toe-walking little charmer did not communicate. He didn't say "Mama" or "Dada" or point to things he wanted. At the playground, he had no interest in other children; he didn't even seem to register their existence, preferring instead to roll anything with wheels back and forth obsessively. Enfield had to teach him how to put his arms around her for a hug.
At his 24-month checkup, Enfield asked the doctor if Asher could be autistic. "Lots of kids aren't talking yet at two years," the pediatrician assured her.
But she wasn't reassured because Asher hadn't met other milestones appropriate for 2-year-olds, such as kicking a ball, jumping, and pointing at things. A local preschool for autistic children steered her to Lucile Packard Children's Hospital at Stanford, which concluded that Asher was autistic, but not severely so.
"I felt crazy up until then because people would tell me there was nothing wrong with him," she says. "When they came back and said he qualified as autistic, I was almost happy because I knew he'd get help."
Today Asher is enrolled at a special preschool, where he gets extensive "floortime" therapy, an intervention based on the theory that getting down on the floor and intensively engaging in the child's play has the best chance of fostering social communication.
Asher also receives speech and occupational therapy, which, like his tuition, is paid for by the county. And Enfield perceives real improvement: Asher notices now when she leaves and when she comes back, and has even said "Hi, Mom!" -- his first-ever unprompted words to her.
Still, Enfield's son's diagnosis puts a strain on her. "Some days I can't move," she says. "I feel exhausted and worry I may not have devoted enough time to him that week. But I remind myself that he's got a lot of strengths and is making a lot of progress."
That progress involves the whole family. Even Maeven, Asher's 5-year-old sister, helps with giving Asher one-on-one attention and eye contact. And Enfield devotes her days to shuttling him between appointments or continuing the floortime therapy he receives at school, trying to create a safe and predictable environment so Asher won't shut down and disconnect.