Unsettling season: Noisy, bright, busy holidays are challenge for families of children with autism
Debra Hosseini, co-founder of California-based The Art of Autism, says the hardest part of the Christmas season for her son, Kevin, is that school is out for an extended period. Most children with an ASD need predictability. The transition to time off can be brutal. Still, Kevin, like many with autism, has gotten somewhat accustomed to the Christmas chaos.
Her friend Keri Bowers, whose son Taylor will be 23 on Christmas Eve, experienced that, too. "When he was younger, his autism collided with the holidays, the smells, the distractions, large groups of people, social interactions and his desire to touch if not dismantle the tree, among other things," she says. The Los Angeles, Calif., woman, a filmmaker who created "Normal People Scare Me," has been making recycled cardboard Christmas trees for families who are less experienced with autism. It's an alternative to a real tree an autistic child might be determined to shred.
Bowers has systematically prepared Taylor for Christmas using stories and pictures to remind him of what happens. She includes him in holiday activities, with time limits on how long he has to be present at gatherings. She's not above the occasional bribe: "Stay and share some time with family; I will take you to your favorite movie afterward."
She taught him to make ornaments so "his desire to tear them down was diminished by his buy-in and pride of ownership." She has taught Taylor to give, starting small and building. At 14, he began doing small jobs to buy Christmas presents for the less fortunate.
Help them prepare
Such strategies make the holidays easier, but no two children are the same in either stressors or what relieves them. Degree of disability varies widely, as well.
For the Cooks, family outings have long been challenging, worries intense that someone else would get a toy Brady would fixate on. He once fell in love with a 6-inch-tall porcelain snowman with which, fortunately, a friend was willing to part. He slept with it for six months, in love with the texture. Taking it away, says his mom, would be beyond hard.
So on Christmas Day, the family holds its collective breath. "All the other kids would want to go see their cousins. But if Brady had a horrific day, we didn't dare take him."
One Thanksgiving, she got the best holiday gift ever. She told her brother they couldn't come for dinner. Brady was stressing and she feared he'd put his head through the sheetrock again. "What do you do when he does that?" her brother asked.
"We fix the sheetrock."
"Then bring him out, and if he puts his head through the sheetrock, I'll fix it," he told her.
Strangers can ease the load by suspending judgment, Bilder says. Don't toss them nasty looks or make snide remarks when a child who looks perfectly fine behaves badly. You don't know what's going on.
People wonder why parents of a child with autism can't control him. "You have to make it through a tantrum to teach the child there are limits, but it's hard because there are lots of judgments around them," Bilder says.
Green has friends whose own families don't make them welcome "for fear their perfect party might be trashed. There are some vile reactions, through ignorance," she said. She tells them Wyatt's never going to be like other kids, but he's "a lot of fun to be hanging out with once you understand the kinds of things you can and can't do" with him.
Green, who founded Autismhwy.com, a social network for families with an ASD child, works hard not to shelter Wyatt — or the world from him. "He travels with me. We take a little bag of tricks" filled with things that calm him. "He's sweet, happy, a little oblivious."
The only time she really saw him upset was in a grocery store, where he was twirling and working his hands, same as always. Someone glared at him, obviously angry. "He has no clue about grocery store etiquette. But he felt the bad vibes and started to cry."
"I think it's important, especially around the holidays, to be respectful of people with adult children or younger children who have challenges," says Lisa Goring, vice president of family services for Autism Speaks. "Welcome them into your homes. Ask questions in advance. 'What would be helpful?' "
Her group has tips and tools for friends and family. Parents often find that putting together picture books and talking an ASD child through what will happen helps.
Green thinks people have it a little backward. The Wyatts, Kevins, Taylors and Bradys won't necessarily fit, in social skill terms, into the rest of the world. But the world could try a little harder to welcome them, she says.
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