Testing Autism and Air Travel

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 Ms. 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 Ms. 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 Ms. 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 1 in 88 children has been identified as having an autism spectrum disorder, health officials say. 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, have offered hundreds of parents and autistic children “mock boarding” experiences, allowing them to practice buying tickets, walk though 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 in 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.”

Such misunderstandings can have dramatic consequences.

In August, Delta Air Lines forced a mother traveling with her 3-year-old autistic son to get off a plane that was taxiing on the runway when the child began crying inconsolably, disturbing another passenger.

“She was in tears,” said Ms. Sarkis’s brother, Tarek Trad, who said she was still too distraught to discuss it.“It was a harsh reality for a mother that just found out that her son is autistic.”

Delta Air Lines officials have apologized to Ms. Sarkis for what a spokesman described as an “unfortunate string of events” on the Delta Connection aircraft. The spokesman, Morgan Durrant, said that Delta is reviewing the episode and remains committed to striving to “accommodate all customer needs.”

Hoping to avoid such 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 lengths of time.

But over the next year, as his older daughter travels to visit colleges for the first time, Lukas will not come along. Mr. 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 Mr. 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, the assistant administrator who handles disability issues for the T.S.A., 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.”

Ms. Napoleon, the flight attendant, can’t quite envision a trip without hiccups. She likes to joke that her favorite part of flying with her son is landing. “I want to kiss the ground,” she said.

But the truth is that nothing quite compares to the wonder in Keanu’s eyes when he looks out the window at the bright city lights sparkling in the night. “There’s this huge world out there,” Ms. Napoleon added, explaining why she and other parents keep flying. “I want him to know that it’s out there and how it works.”

TIPS FOR THE TRIP: EASING THE PROCESS FOR PARENTS

Taking a child on an airplane for the first time is often a stressful experience, but for parents with children with autism, that stress is multiplied. What follows are some suggestions on how to minimize the anxiety and the potential for surprises.

• Pick a short flight — an hour or so.

• Visit the airport ahead of time to familiarize your child. If possible, participate in a mock boarding experience. If none is available, call your local airport to see if they will allow you to show your child the ticketing counters, security lines and waiting areas in advance. Parents interested in participating in a mock boarding experience at Boston Logan International Airport, either Nov. 3 or next spring, can use this link —http://bit.ly/W7zNh9 — to register. Washington Dulles International Airport plans to offer additional mock boarding experiences in the spring. Check the “What’s New” section of the airport site — mwaa.com/dulles — next year for information.

• Call the TSA Cares hot line — (1-855) 787-2227 — 72 hours before your flight to alert them that you might need assistance going through security. Some parents ask to go through the handicapped line with children who have difficulty in crowds or waiting in long lines.

• Call the airline ahead to alert them that you might need to board early or require additional assistance onboard.

• Tell your child what to expect, including delays and long waits, in the airport and on the airplane. Philadelphia International Airport offers a story —www.phl.org/passengerinfo/Accessibility/Documents/SocialStories.pdf — that can be read to children to help them prepare. It is designed for mock boarding experiences, but can be adapted to any trip.

• Pack a carry-on bag with anything that might be soothing during a rough patch. Be sure to include documentation of your child’s diagnosis that you can share with security and airline personnel.