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t’s before sunrise on a Monday morning in late September, and Danyel Couture opens a white bedroom door. Light from the hallway beams onto the small face of her 3-year-old: Owen.Owen’s eyelids flutter open and shut a few times. Couture tiptoes across the plush white carpet toward his bed and switches on a small dinosaur-shaped lamp. “Wakey, wakey,” she whispers. “How’d you sleep?” She kneels down to stroke Owen’s arm and kiss his head.
Owen slowly rolls onto his back and kicks off the blanket. The excavator on his pajama shirt matches a yellow stuffed toy at the side of his bed. Couture picks up a small white bear, his near-constant companion. She squeezes ‘Bearsie Wearsie’ and places it next to Owen’s pillow, where it begins to vibrate and play a soft lullaby.
“You ready to get up?” she prods. “We have such a big day ahead of us. It’s going to be so awesome.”
Today is Owen’s first day of “school” — and it has come earlier for him than for many children. Owen was diagnosed with autism in May. His doctors recommended he start intensive behavioral therapy as soon as possible, which prompted his parents to look for a facility that provides it.
This day is also the culmination of a long and arduous struggle for the family. For more than two years, Couture could not get any doctors or therapists to take her concerns about Owen’s lack of social interest or his delayed crawling, walking or language seriously. After his diagnosis, the family’s health insurance company twice declined to cover the cost of autism therapy for Owen. And it was only a week ago, after months of waiting for the insurance to come through, that Owen was given permission to start at the Prism Autism Center in Farmington, Connecticut, a school-like medical facility about a 30-minute drive from the family’s home.
The family’s experience is hardly unique: Early diagnosis and intervention can lead to a better outcome for autistic children, and yet many families struggle with long delays. “It’s just such a common course of events,” says Lisa Shulman, a developmental pediatrician who specializes in autism. Because of problems with screening tests for autism, a lack of training for pediatricians and limited access to experts for families, the average age of diagnosis in the United States is 4 years, even though the signs of autism are usually evident much earlier.
The long wait times can make an already fraught process much more stressful. “I’m so nervous about today,” Couture says. “I’m not sure how it’s going to go.”
She and her husband, Christian, have been preparing Owen over the past week, talking with him about what to expect at Prism. Owen often becomes distressed when his mother leaves the room. And since he was 6 months old, he has spent most weekdays at the same local daycare center. Any changes to his routine might throw him off kilter.
“Do you want to wear the new outfit we got yesterday, or do you want to wear something else?” Couture asks Owen as he crawls out of his bed, clutching a small white blanket.
“Something else,” Owen says, draping the blanket over his head.
She coaxes him out from under the blanket and dresses him in navy shorts and a plaid blue-and-white collared shirt that Owen picked out. “What do we do every morning?” she prompts. “Brush your teeth, do your hair?”
“Your hair,” Owen echoes. The two head down the hall to the bathroom. A few minutes later, they go downstairs. Owen plops down to eat a pastry in a large chair in the living room, where his father is watching a bit of the morning news before work.
“Owen, you’ve got to get ready,” Couture says. “Give Daddy big hugs and kisses.” Owen hops down from his chair and embraces his father.
“Bye, have fun at big-boy school,” Christian Couture says.