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Taking a Flyer on Autism
"And so we must say to every American: Look beyond the stereotypes that blind us. We need each other -- all of us -- we need each other. We don't have a person to waste."
-- candidate Bill Clinton in the 1992 speech accepting the Democratic Party's nomination for president
It is this outlook that Dr. Wendy Ross brings to her practice as a developmental and behavioral pediatrician at Albert Einstein Medical Center.
While she could confine her practice to office visits and prescribing medication, her commitment to her patients compels her to reach further, through a program she designed to include patients with autism in normal community activities, such as visits to museums or air travel.
These activities are potentially terrifying because of the way that they alter familiar routines, something to which children with autism can be especially sensitive.
Yet, says Ross, her work is about more than a single community experience: "It is about shifting the focus of the country from the discussions about causes, cures and controversies of autism, to everyday living and community experiences.
"The hope is that by increasing the ability of children and families to function in the community, we will also one day improve adult functioning and acceptance."
According to Ross, the program started with museums because they are a childhood destination. "Play is considered a human right, and if you don't intuitively know how to play, you need support around this interaction."
Ross joined forces with Roger Ideishi from the University of the Sciences and others to create meaningful experiences for museums and children. From these visits, a seed was planted: If patients and their caregivers were prepared to adjust to other new settings, they could venture out more often and with more confidence.
After starting the museum program, Ross learned of the difficulties experienced by a patient whose parents had taken her with them on a trip to Florida. During pre-boarding on the family's return flight from Florida to Philadelphia, the daughter became agitated when airline personnel allowed only one parent to board with her, thus making it impossible for the entire family to go on the flight, delaying their return home until the next day.
At that point, Ross intervened, and the airline adjusted their routine guidelines to accommodate the family.
Ross realized that she could apply the principles learned from the museum program to help more families negotiate the labyrinth of airport check-in, security and boarding. While airlines have begun to take steps toward assisting passengers with overt physical special needs, education was still needed.
And so the airport accessibility program was launched at Philadelphia International Airport.
Ross routinely trains personnel from the airport, airlines and transportation security administration to recognize and respond in more adaptive ways to families dealing with autism.
Families are also provided with a supported practice experience at the airport. Patients are first prepared with "Social Stories," developed by Carol Gray for those with autism, or scenarios about air travel by international autism expert Carol Gray.
These stories touch upon many aspects of air travel, and are written in simple, accessible language.
Families are also given a reminder sheet, "Family Travel Tips," with such suggestions as what to wear (slip-on shoes, easily removable outerwear) or not wear (bulky or baggy clothes, clothes with metal), and instructions for carrying food and liquids.
Time to Fly
Then patients are taken through a mock travel experience at Philadelphia International Airport. This includes all the steps that passengers go through from arrival at the airport to boarding their flights, beginning with check-in, and proceeding through security, and finally walking through the jetway and onto the plane.
Once on board, they experience take off and landing protocols, and have a snack in between.
For the parents of the patient who inspired Ross to begin this program a year ago, this preparation made all the difference. Their daughter is no longer reluctant to travel.
Yet it is no easy task to coordinate all the planning that must go into the program. The team that makes it possible includes not only airline, airport and security personnel who participate, but also a multidisciplinary team of clinicians.
For example, Rick Dempsey, Philadelphia International Airport ADA coordinator, was impressed during a recent training session with the "collaboration among different groups," who "all came together to serve customer needs," assisting with all the facets of air travel.
Ross hopes to expand the air-travel program nationwide. If she succeeds, the effect will be far-reaching, "opening doors," says Dempsey, "not only for the child with autism but for the family."