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A woman directed her daughter through the metal detector during a mock flight for children with autism and their families.

, McClatchy News Service

Getting around the bumps of traveling with autistic kids

  • Article by: RACHEL L. SWARNS
  • New York Times
  • November 21, 2012 - 3:12 PM

 

For Dana Napoleon, a flight attendant in Tacoma, Wash., zipping in and out the nation's airports every week is second nature. Yet she is still filled with dread every time she flies with her 10-year-old son.

Other children might scamper through the airport, delighted by the moving sidewalks and dreaming of sand castles. But for Napoleon's son, the crush of unfamiliar faces, the creeping pace of security lines and delays in boarding and takeoff can trigger excruciating anxiety.

So before flights, Napoleon worries: Will he dash through the metal detector without stopping? Will he disrupt other passengers by kicking the seat incessantly? Will he have a meltdown onboard, screaming and crying and hitting himself in the head, and get the entire family forced off the flight?

Her son, Keanu, is autistic. So for the Napoleons -- and many other parents of children with autism -- family vacations can be an agonizing exercise in parental endurance.

"My stomach is in knots," said Napoleon, 41, describing her apprehension whenever she arrives at the airport with her husband and two children. "It's so unpredictable. That's what's so stressful."

The Centers for Disease Control and Prevention estimates that one in 88 children has been identified as having an autism spectrum disorder. And for the parents who struggle to navigate the nation's airports and airlines with these children, aviation officials are providing more help.

Over the past two years, Washington Dulles International Airport, along with airports in Atlanta, Boston, Bridgeport, Conn., Manchester, N.H., Philadelphia and Newark, N.J., have offered hundreds of parents and autistic children "mock boarding" experiences, allowing them to practice buying tickets, walk through security lines and strap themselves into a plane that never leaves the gate.

As of now, Jet Blue, AirTran, Continental, Frontier, Southwest and United Airlines have participated.

The early word suggests that the programs, which are free, seem to help. Autism experts and parents say that increased familiarity with busy airports helps autistic children and their caretakers travel more comfortably. And airport and security officials say they gain a better understanding of the difficulties experienced by autistic travelers.

"We recognize how intimidating to some people, particularly those with special needs, a facility like this can be," said Christopher Browne, the manager of Washington Dulles airport. "We think the anxiety and uncertainty and trepidation can be greatly reduced."

The Transportation Security Administration has also set up a hot line, TSA Cares, to help disabled passengers and their caretakers better navigate airport security checkpoints. Thousands of people have called since the hot line was started in December. More than 320 calls involved passengers with autism.

But these fledgling initiatives don't reach everyone. And many parents complain that aviation officials and fellow passengers still remain unaware of the enormous challenges faced by children whose hypersensitivity to light, sounds, unexpected events and subtle shifts in routine can often trigger emotional outbursts and anxiety attacks.

"Awareness of autism has certainly increased; there's no question about that," said Jennifer Repella, vice president for programs at the Autism Society, an advocacy group. "What's challenging is that autism is a hidden disability. People see someone they think is just a spoiled brat or a kid misbehaving and they don't realize the origins of that."

Hoping to avoid unpleasant experiences, many parents are developing their own survival strategies. Some carry letters from doctors describing their child's autism diagnosis, pack noise-canceling headphones and dress their children in brightly colored T-shirts that declare "autism awareness," trying to make the invisible disability visible.

They ask to go through the handicapped lanes in security and to board the airplane ahead of time. And even before setting foot in the airport, they painstakingly walk their children through the journey step by step, often showing them photos of the airport and airplanes so that they can visualize what they will encounter.

Given the challenges, some parents opt not to travel. Others take long drives or train or bus rides. Marcus Melton, a business consultant, has flown successfully with his nonverbal 12-year-old son, Lukas, who often laughs and squeals loudly and unexpectedly and struggles to sit for extended periods.

But over the next year, as his older daughter travels to visit colleges for the first time, Lukas will not come along. Melton and his wife decided that it was simply too hard, particularly since his daughter wants to visit some campuses in California.

"From an emotional standpoint you get sad about it," said Melton, 43, who had always dreamed that college visits would be a family affair. "But the prospect of flying cross-country is in and of itself intimidating. That's just a lot of time to keep him happy and occupied and try to keep things from going wrong in the air."

Kimberly Walton, an assistant administrator who handles disability issues for the TSA, said that the agency is committed "to doing our part to demystify the screening process for the parent and the child, so when the real trip to Disney comes up there are fewer or no hiccups."

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