When a young patient with autism was traumatized by a travel experience, Dr. Wendy Ross, director of the Kevy K. Kaiserman Center for Developmental Medicine and Genetics at Albert Einstein Medical Center in Philadelphia, wanted to ease the experience for others. With a multidisciplinary group of child development experts, she created a program that lets families with autistic children simulate the travel experience from curb to cabin and back: checking in at the ticket counter, going through security, waiting at the gate, boarding the plane, taking a simulated flight and collecting luggage at the baggage check. The experience gets children familiar with the sights and sounds of travel before they take a real trip on an airplane. The program also educates personnel from airports, airlines and the Transportation Security Administration (TSA) about the needs of families affected by autism.
Ross initially worked with Southwest Airlines, Philadelphia International Airport, the TSA, the University of the Sciences in Philadelphia and the Gray Center to develop the program. Now U.S. Airways, Continental Airlines and others are planning personnel trainings and practice sessions for families.
What sparked the idea for this program?
I am a developmental and behavioral pediatrician. Every day, I diagnose and manage children with issues like ADHD, learning disabilities, sleep disorders, and autism. To compensate for regularly telling parents that their child has autism, that moment of truth telling, I used to just do a lot of advocacy, making sure that therapies and educational plans were in place so that each child and family could reach their potential. Over time, it did not feel like enough.
Everyone in the country seemed so focused on a cause or cure or the controversies surrounding autism, and no one was worried about how these families get through the day. When my patients’ parents go to bed at night, they are wondering what will happen to their children one day. In my mind, this has everything to do with the ability to function in a community. Children with autism are not socially intuitive. Additionally, they can get overwhelmed by new sights, sounds and other sensory information. Families seemed reluctant to go out when their children were susceptible to meltdowns. We wanted to provide the opportunity for scaffolding and practice involving community experiences. We feel very strongly that every year that children with autism are not learning or exposed to social situations directly affects the trajectory of their futures.
During our spare time, a multidisciplinary group of us from different organizations began to work with museums to promote inclusion of children with autism. The collaborators include Roger Ideishi, an occupational therapist nationally recognized for his work on inclusion; Angela Jones, a psychologist; and Rebecca Jackel, a speech and language pathologist; as well as Carol Gray, an international autism expert. When one of my patients, an adorable 4-year-old girl with autism, had difficulty flying home, I went to the airport to convince them to apply our strategies there.
Was it difficult to get airlines to participate?
The airport program took a lot of personal time and energy to get off the ground. The American with Disabilities Act coordinator, Rick Dempsey, at Philadelphia International Airport, was immediately receptive and supportive every step of the way. He connected me with TSA and helped us to get photographs that we needed to help prepare the children. He set up trainings that we delivered at all employee shifts (i.e., all hours) to educate them about autism. He helps us regularly run practice sessions for families. The first airline was the hardest to get, but since then, we have had several airlines involved, and their commitment, from the use of a plane to a volunteer crew, has been remarkable. At each practice, we are required to have a security escort for every three non-ticketed passengers that cross security, which also involves a whole other group of volunteers from the airport.
What do participating families experience?
Participating families do everything from curb to cabin and back, except for fly. They check luggage, cross security, wait for a plane, engage in takeoff and landing simulations with a snack and visit to the bathroom in between. Afterward, we all go to baggage claim before departing. The experience lasts about three hours.
How do you train employees and help them understand how best to handle, and empathize with, autistic passengers?
We mainly explain the criteria for autism and the many ways it can present, and provide them with strategies for interacting with families. It has been a rare training where someone does not know someone with autism. Even those with no personal connection have been very engaged. What makes our program unique, I think, is that it does not just work with the children or even the families; it also prepares the community organizations, in this case, the airport. With each side increasing their skills, they can build a bridge between them.
How many families have been involved?
I have lost count. The best part for me is that, when we follow up with the families, they seem to have benefited in some way. Many just needed the confidence to buy an airline ticket. Others needed our team to provide them with more specific strategies. It has been enormously rewarding.