Unsettling season: Noisy, bright, busy holidays are challenge for families of children with autism
SANDY —Here's an unforgettable Christmas scene from the past: a younger Brady Cook, agitated because his current obsession, a battery-powered toy drill that was under the tree, is not working. In the meltdown that ensues, he puts his head through the sheetrock wall. Meanwhile, as Robert and Sharon Cook try to calm their son, his brothers, Nick, Christopher and Coby, open their own gifts by themselves and play with them quietly.
When Brady's having a day like that, there's no visiting relatives or friends. Even on Christmas Day.
Brady, 16, was born prematurely, weighing in at a mere pound and a half. He's nearly blind and has other physical problems. But the one that changed the Cook family's lives is autism.
And as many parents of children who have an autism spectrum disorder (ASD) can tell you, Christmas is a challenging time of year.
The holiday season is full of changes and unpredictability, from the lights strung on houses to the blaring Christmas music. There are new sights, new smells, new sounds, much of it unrelenting for someone with autism. A life that has been deliberately structured to cope with ASD may start to unravel.
"It is not surprising that many individuals with autism struggle around the holidays, because the holidays present challenges in areas commonly difficult for those with ASD," says Dr. Deborah Bilder, assistant clinical professor in the University of Utah department of psychiatry, who works extensively with autism. Crowds are hard. So is visiting, whether family and friends come to you or you go to them. And "most families don't travel," Bilder said. "It's always a balance between meeting the need of the affected child and the rest of the family."
"We all have our holiday expectations and rituals ingrained in us from the time we were kids," says Kelly Green, of Monrovia, Calif., whose son Wyatt, nearly 13, stopped speaking as a toddler. "When you have a child that can't have the same ritualistic experiences the way we had it, it becomes kind of weird for the family."
It's hard, especially for the siblings of the child with the disorder, she adds. Her family has coped by making sure Wyatt has an escape when it becomes too much, a quiet place to retreat.
But adapting has to reach beyond the nuclear family — something that is catching on. Malls in states as disparate as Florida, Minnesota, Ohio and Nevada open for an hour extra early one day during the ramp-up to Christmas. They dim the lights, soften the music and tone down the ornamentation so kids of all ages with autism can spend a few moments with Santa Claus without being overwhelmed.
It's a cherished tradition that requires some planning. What is hard depends on the individual. Wyatt does malls OK; Brady has never been to one. It would be too much for him, although the Cooks have worked their way up to visits to a convenience store.
Green says you have to be flexible. At home the Christmas decor is "subtle lights, fewer decorations and less hoopla." She doesn't expect Wyatt to help make cookies or hang stuff on the tree. Sometimes she has to explain to family members one only sees once a year that he's not unhappy, just not interested.
"Don't get upset if he doesn't make a big deal of the present you picked out especially for him," she warns. "And he doesn't care about opening gifts. But once he sees (a toy) working, he may like it and play with it."
Preventing a meltdown
Like many parents who have experienced a holiday-induced brouhaha, Sharon Cook tries to head off trouble.
"The hardest thing is you never know when or what will set him off," she said. "You walk on eggshells. You don't know if you can visit five minutes or an hour or if it will happen when you're halfway there."
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