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When a gift can be hurtful
For austistic children, the best present is one that they want
Saturday, December 25, 2004

What child doesn't enjoy opening a gift-wrapped package on Christmas morning?

Lake Fong, Post-Gazette
Marie Mambuca of Ross with her autistic son Tony, 13, left, and daughter Kayla, 14.
Click photo for larger image.
Sadly, this isn't a rhetorical question. For many children with autism, opening a gift package is as much fun as a stiff slap. And even those who can appreciate a present aren't keen about the noise and commotion of a typical holiday get-together.

It's just the nature of this complex developmental disorder, explained Dr. Nancy Minshew, a pediatric neurologist and autism researcher at the University of Pittsburgh School of Medicine. People with autism have difficulty with interpersonal communication. Their brains are wired in such a way that new people, new places, new experiences -- even pleasant surprises -- can be unwelcome.

"I remember one book written by an autistic child who said, 'I will make you a deal about Christmas. I will open a Christmas present under the condition it is not a surprise -- I know exactly what it is before I open it.' "

"Surprises," Minshew said, "are not happy for them."

Marie Mambuca of Ross said her 13-year-old son Anthony Mambuca Capanzzi, who has autism, does enjoy opening gifts. But he is sorely disappointed when he doesn't get something he wanted. And he often asks for things that just aren't available -- videos of the Mercury and Gemini space missions, or Power Rangers toys that were discontinued years ago.

She made sure that Anthony this morning received plenty of DVDs -- a TV junkie, he doesn't necessarily watch an entire movie, but likes to jump to parts he likes and repeatedly watch the same scenes.

What has been harder for Anthony is the holiday family gatherings. "I have a huge family," Mambuca said, who headed off to a party last night with Anthony and her 14-year-old daughter Kayla Mambuca Capanzzi. "Whenever we do get together, I'm over in the corner with Anthony."

As Anthony has gotten older, however, he's begun to appreciate family, she said. As long as she is able to keep things structured, by including breaks for swimming or shopping, Anthony remains relatively happy.

"It just takes a lot of planning," she added.

"The hard part is that relatives don't understand," said Minshew, noting that people who aren't used to dealing with an autistic child can be put off by a child that isn't interested in presents, or doesn't display appropriate emotions when greeted or given a gift. "The expectations by people who don't know them well is considerable."

Minshew recommends that parents arrange a room to which the child can escape when necessary. If the child can tolerate groups for 15 minutes at a time, plan to extricate the child within 10 minutes, she advises.

"Everything is so stimulating" around the holidays, Minshew noted, which can overwhelm some children. Noise in a particular can be a problem.

But because of her son's need for routine, it's not just the holiday celebrations that can be a challenge, but also the post-holiday lull.

"Christmas day is nice," she said. "The hard part is all of the time off from school."

First published on December 25, 2004 at 12:00 am
Correction/clarification (published Dec. 26, 2004: A photo caption accompanying a Dec. 25, 2004 story about how autism complicates Christmas contained incorrect information about Kayla Mambuca Capanzzi. She does not have autism. Science editor Byron Spice can be reached at bspice@post-gazette.com or 412-263-1578.
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