Easing Travel Stress for Children with Autism

Author: 
Kristin Vanderhey Shaw
Published in: 
September
2014

Exciting as it is, air travel is also often stressful for kids. Disruptions to regular sleep schedules and unfamiliar food can turn cheerful children cranky in no time. For those with autism, though, an airplane trip can become downright traumatic.

Difficulties may begin long before takeoff - at the airport, where bright, flashing displays and a cacophony of flight announcements and unrelenting ambient noise bombard an autistic child's senses while waves of impatient adults jostle anyone in their paths. With too many variables up the air (literally and figuratively), a long-awaited trip can become memorable for all the wrong reasons. 

Some airports, however, are helping children and young adults with autism address their fears and uncertainties about air travel before their trips. To date, several U.S. airports have well-established programs that help prepare them for what to expect; and Montreal-Trudeau International Airport launched the first such Canadian event in April.

There's also a non-profit organization that offers its proven program to any interested airport (see sidebar for more details).

Thanks to a variety of these programs, families and airport staff alike are seeing how much it can help children with autism to tour their local airport and practice various travel processes (check-in, security screenings, boarding, etc.). With the most likely challenges addressed in advance, more and more family trips are getting off to a great start.

Navigating Autism

Minneapolis-St. Paul International Airport (MSP) offers its preparedness program - Navigating Autism - once per month on Saturday afternoons, when airport traffic is typically lightest. One week before the event, families that registered for the program receive tickets and directions to a designated parking lot, where they park for free and meet a program volunteer who brings them to the terminal. Participants receive security passes and are introduced to the TSA screening process in the family lane at the airport's Checkpoint 6. Families are encouraged to bring carry-on bags and anything else that helps simulate their real travel process as closely as possible. Next, volunteers lead each family on a custom tour of the airport based on their particular needs - families with young children often like to see play areas, while those with teenagers may be more interested in restaurant choices.

After the tours, participants are welcomed at the gate by a uniformed gate agent and practice handing over their tickets and boarding a plane. Inside, a flight attendant greets the participants, waits until everyone is seated, and presents the standard safety demonstration. Airline volunteers do everything but start up the engines - much to the disappointment of some participants.

Shelly Lopez, MSP's administrative and emergency programs coordinator, was the driving force behind launching the program in 2013. After hearing about a fledgling program at another airport, Lopez pitched the idea to Steve Wareham, her boss at the time, who encouraged her to start a program at MSP.

Building off the airport's existing practice of providing airport tours on a case-by-case basis, Lopez sought clinical guidance for a more comprehensive program from the Autism Society of Minnesota and Fraser Institute, a Twin Cities nonprofit that serves people with autism. Delta Air Lines, MSP's dominant hub carrier, enthusiastically agreed to help and provided access to airplanes, so families could experience boarding and pre-flight procedures.

"I was floored to discover how many parents weren't flying, because they were afraid their kids would not be able to handle it," recalls Wareham, who now works as a consultant with Trillion. "I had seen Rain Man, in which Dustin Hoffman's character refused to get on a plane, and I knew this program would be helpful for so many."

Rich Kargel, a first officer for Delta and father of a son with autism, was quick to offer his unique qualifications when he read about the program's trial run in an employee newsletter. "I thought it was a great idea," recalls Kargel. "We travel extensively with our son, and we realize there are some serious challenges. If I could help from a pilot's perspective, a father's perspective, and a Delta employee's perspective, I thought that would be worthwhile."

Even though Kargel is based in New York, he has been the point pilot for Navigating Autism since its inception and often engineers his schedule so he can talk to parents and their kids during MSP's Saturday programs.

Dawn Brasch, education and training specialist for the Autism Society of Minnesota and mother of a child with autism, led efforts to create the training program for the volunteers, airport employees, and TSA officers at MSP. Brasch and her staff continually tweak procedures and strategies in an effort to create the best possible experience for participating families. For example, they discovered it was very important to tell, and then remind, the children that they are not actually traveling anywhere on their training day. They also learned to be very careful about visits to the cockpit, so participants don't expect one on every flight. In any case, families are thankful for a chance to acclimate to the airport environment and practice various steps needed for air travel, notes Brasch.

"Some parents think they might not ever be able to take their child on a plane," she relates. "I know I was terrified for years, because you don't know how they're going to react. An airport can be sensory overload, so knowing where the quiet areas are located is helpful. Parents and caregivers need to know everything they can to give the child relief. It takes so much stress off the family."

Practicing Trust

One of the most difficult challenges for some children is giving up a favorite toy or comfort object at the security checkpoint. Many assume that if they allow a beloved item to be loaded into an ominous-looking X-ray machine, it will be gone forever. Practicing the process, however, gives them a chance to see how it really works. "Once, it took a child 40 minutes to put his toy car on the belt," Brasch recalls. "When it came to the day of the real trip, he was ready and he understood."

The MSP training program also teaches volunteers to tell families that contrary to some advice, boarding the airplane first isn't always best. Some children with autism may be better served remaining physically active for as long as possible and boarding last.

Chris Bentley, head of training development at the Fraser Institute, also helped develop the program and now market it to the local community. Fraser provides a range of support for children, adolescents, adults and families, including autism evaluations and services. Bentley or one of her staff personally participates in each session at MSP, offering help with logistical challenges or families who need extra support.  

"For some families, they know that they have some travel coming up, and it helps them work through the logistics of what might be a challenge, what to prepare for," she notes.  "The volunteers have tons of tips that are helpful, and it opens up the opportunity to travel." 

The amount of behind-the-scenes effort required for each event would surprise most families that participate. "While the tours are taking place, the pilot is finding a Delta plane that is going to be sitting for a couple of hours," Lopez explains. "The plane and the gate are available at the last minute."

Other airlines also help, but they simply don't have as many planes available at MSP as Delta. Lopez cites Southwest as an example: "When possible, they will load a family (from the program) who is planning to fly Southwest quickly, before a flight is boarded for its next destination."

According to Wareham, airline participation is critical. "Actually having a pilot and flight attendant in uniform spend their time with the kids - that is key," he emphasizes.

When MSP's program is complete, families are escorted back through the airport by their assigned volunteers, and receive bags stuffed with gifts from airport tenants including OTG, Host and McDonald's. Participants also take home instructional packets that help parents and caregivers repeatedly role-play and rehearse travel processes with their children until just before their actual travel dates. In addition, they receive a "social story" - a written document with pictures and easy-to-understand sentences that outlines travel processes as closely as possible.

Grateful Customers

Parents who have taken part in MSP's Navigating Autism program are effusive in their praise.

"Our son really struggles with new experiences, and I feel like the pace was set to what he was comfortable with and the explanations along the way were great," wrote one parent. "I didn't expect to experience so many things about the airport (actually riding on the tram, seeing the observation deck, locating the quiet places around the airport) and all of the details made us so much more confident about traveling in the future."

Another parent mentioned how helpful it was for the program to include service animals and stressed its overall emotional value: "The crew, TSA, volunteers ... everyone was so accommodating and seemed to understand what my son's issue was. It was comforting to know we could go through a program like this and not be judged."

Lopez often hears from appreciative participants after they return from successful trips. "Family after family tells me, 'Now we can fly'," she relates. "The program has really paid off."

"It's so worth it to volunteer for this program," adds Kargel. "Every now and then, a family gets off the airplane, and the parents' eyes well up, saying that they never thought they would be able to travel via plane  ... We're helping dreams come true. "

factsfigures
Project: Airport orientation for children & young adults with autism
Location: Minneapolis-St. Paul Int'l Airport
Program: Navigating Autism
Strategy: Provide tours & practice clearing security, boarding aircraft, etc. before actual travel
Program Frequency: Once per month, year round
Families Served: 10-12/month
Partners: TSA, Fraser Institute, Autism Society of Minnesota, Delta Air Lines, Southwest Airlines, OTG, Host
Project: Travel preparedness course for children with autism
Location: Boston Logan Int'l Airport
Program: Wings for Autism
Strategy: Allow families to practice airport/airline processes - twice
Program Frequency: Twice yearly (in April and Nov.)
Families Served: 1,000+
Developing Partners: Charles River Center; JetBlue Airways; Massport; TSA


Wings for Autism

Three years ago, Boston Logan International Airport (BOS) teamed up with TSA, JetBlue Airways and the Charles River Center (a local autism support organization) to launch a twice-yearly program called Wings for Autism. Since then, Massport has held six Wings for Autism events, benefiting more than 1,000 attendees.

Like MSP's program, Wings for Autism provides tours of the terminal, practice with basic airport procedures, etc. But the program at BOS also adds the element of repetition, an important teaching element for children with autism.

"We offer two practice runs," explains Brad Martin, deputy director of Aviation Customer Service. "The more repetitiveness for the children, the more comfortable they are."

The program at BOS was inspired by a family with two children - one with autism - that contacted the Charles River Center, relates Martin. "(They had) to cancel a vacation to Disney when the child with autism had a meltdown at the airport and they were unable to board the plane," he explains. "A few months later, we put together Wings for Autism with the Charles River Center to address the need, and it has been a huge success. It's a great community effort at Logan."

Nearly every domestic airline at BOS has supported the program with staff and/or aircraft, he adds. Often, flight attendants based elsewhere fly to BOS so they can volunteer for the April and November sessions. Once, Delta Air Lines flew in an empty aircraft when another plane couldn't be scheduled on the ground, Martin relates.

Despite heart-wrenching appreciation from attendees, BOS continues to work on improving the program and building awareness for the issue it addresses. Martin looks forward to a time when airport and TSA staff immediately notice when a passenger is wearing a Wings for Autism sticker and adjust their approach. "They will know there is a 'handle with care' message attached to the sticker," he explains. "That's our goal." 

 

Opening the Door to Air Travel (& Perhaps the World)

Airports interested in helping accommodate young passengers with autism don't have to create their own preparatory programs from scratch. Open Doors, a non-profit organization dedicated to helping people with various types of disabilities enjoy travel and tourism, offers its proven program - Autism Inclusion Resources (AIR) - for duplication throughout the industry.

Currently, four U.S. airports are scheduled to run the program before the end of the year: Los Angeles International, Newark Liberty International, O'Hare International and San Francisco International.

Open Doors Executive Director Eric Lipp hopes that list will soon be much longer. "All an airport has to do is call us to get started," says Lipp, noting that the format and curriculum were specifically designed to be repeatable. "We want this program anywhere and everywhere."

The program, created in 2008 by Founder/Director Dr. Wendy Ross, pairs a local clinician with each participating family. The 21/2-hour program starts at ticketing and brings the family through security and boarding, all the way to the gate and onto the plane - thus allowing children with autism to get familiar with the airport environment and practice key steps in the travel process. Participants are asked to bring packed bags - including liquids separated from their carry-ons - to simulate real travel as much as possible.

Ross was named a 2014 CNN Hero for the innovative program, which seems to have inspired similar efforts by individual airports.

Currently, AIR partners with United Airlines to provide aircraft for events scheduled through the end of the year; but Lipp notes that any airline and any airport can participate. It's a model that can, and should, be replicated throughout the United States, he emphasizes.

Lipp estimates the cost for airports to offer the program at $1,000 to $1,500. "The largest cost is time," he relates. "Open Doors pays for parking for the families, and we pay for the clinicians. We want this to be as easy as possible for anyone to implement."

For more information, visit www.opendoorsnfp.org.

 

Subcategory: 
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