CNN
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A New Jersey mother and her son with severe autism, who were vacationing with their family in Aruba, were stuck in the country for two weeks after the boy had a meltdown before takeoff on their return trip, the family says.
The family’s ordeal ended with a return home by sea rather than air after an organization advocating for people with an invisible disability coordinated their trip home with a cruise line.
Jamie Greene, her three children and her boyfriend, Carlos Pacheco, flew to Aruba on May 7 for a family vacation. Greene said she wasn’t worried about her son Elijah, 15, who has autism traveling by air because he had been on a plane at least twice in the past.
Elijah is diagnosed with severe and non-verbal autism, a subset of the disorder that prevents him from speaking in full sentences, Greene said.
Elijah started to have what Greene described an autistic episode – triggered by sensory overload and fear – once the family boarded a United Airlines plane on May 17, headed back home to New Jersey, Greene told CNN.
Elijah started screaming the word “toilet,” indicating that he wanted to go into the bathroom – a safe, confined space for him without windows, Greene said. “We were taking him back and forth to the toilet, maybe three or four times, he would sit there, calm himself down and come out again,” she said.
As the plane was preparing for takeoff, Elijah’s episode escalated. He began pinching his mother and tried to head butt her, Greene said, at which point a flight attendant told the family that the pilot decided Elijah could not fly on the plane.
Greene says she doesn’t fault the airline crew members for asking the family to leave the plane due to safety reasons, but she hopes her story will galvanize the airline industry to become more accommodating to people like Elijah who have invisible disabilities, which include post-traumatic stress disorder, depression and anxiety.
“We agreed with them,” Greene said. “We don’t want to put it out there that they had treated us badly on the plane. It’s not their fault, I just think airlines don’t have any policies or procedures in place when these incidents arise.”
In a statement to CNN, a spokesperson for United Airlines said: “Safety is our number one priority and, in this instance, since we fly daily out of Aruba, we worked to find and offer alternative United flights that same week to the customers who were impacted.”
According to the US Department of Transportation’s policy on aviation consumer protection, once a passenger has already boarded the flight, “airlines are not permitted to require that passenger deplane, unless the removal of the passenger is required by safety, security, or health reasons, or the removal is due to the passenger’s unlawful behavior.”
United Airlines did not ban Elijah from flying, Greene said, but told her that he must follow the passenger rules after boarding the plane. The airline gave the family travel credits to rebook their flight home, she said, but they decided not to take another flight out of fear that Elijah might have another episode under the same circumstances.
Greene also explored the option of getting a prescription for heavy sedation medicine that Elijah could take to board the plane and stay seated without incident. However, Greene says airline representatives informed her it’s illegal to bring a person onto a plane who is sedated, unable to walk and fasten their seatbelt on their own.
“Planes are not inclusive. There are so many things that can trigger a special needs person on a plane and there is no policy in place if that happens,” said Greene. She added that certain accommodations such as allowing Elijah to get acclimated on the plane before other passengers or moving him to a quiet area would have helped to make him more comfortable.
A week after Elijah’s episode on the plane, Greene’s boyfriend and her two other children flew home because they had to return to school. At this point, she took her appeal for help to Facebook out of desperation, detailing their experience in hopes that her message would reach the right people.
Her post eventually caught the attention of Julian Maha, the founder of KultureCity, which is a non-profit dedicated to sensory accessibility and acceptance for those with invisible disabilities. The organization works with Carnival Cruise Line, which is the first cruise line to be certified “sensory inclusive” by KultureCity.
The non-profit trains venues, organizations, small businesses and other individuals on how to better engage with individuals with sensory needs. Maha told CNN that the KultureCity is set to work with a national airline – which he declined to identify – to make it the first sensory inclusive airline in the country.
“All of Carnival’s guest-facing crew have been trained to understand and help guests with sensory/cognitive needs,” Carnival’s website states.
The cruise line was more than willing to help Greene and Elijah return home and arranged for her brother to fly to Aruba and take the cruise back with them, Greene said. Maha said that Greene and Elijah’s experience is “very common,” which deters many families from traveling at all.
There are no airline policies in place that help crew members handle people with invisible disabilities, which are not immediately apparent, Maha said, adding, “it’s very much generalized disability training rather than specific sensory needs and invisible disabilities.”
“I do not fault the airline in terms of their policies and procedures,” Maha said. “There’s never an excuse for dangerous behavior because it puts everyone in danger.”
Maha said that the trauma from the experience and the fear that it might happen again ultimately prevented Greene from wanting to take another flight.
Greene was also burdened with the “sheer exhaustion of having to explain to someone that even though your loved one looks like a normal, neurotypical individual, they have all of these challenges that the world does not see because they do not look different,” Maha added.
A spokesperson for Carnival told CNN in a statement that Elijah, Greene and her brother boarded the Carnival Horizon ship on May 31 and arrived in Miami on June 5.
“Given Carnival’s close partnership with nonprofit KultureCity, our team has a deep understanding of the needs of individuals with sensory and invisible disabilities,” said Vicky Rey, Vice President of Guest Care & Communications at Carnival Cruise Line. “When the organization contacted us about Elijah’s situation and we realized we could bring him back to the United States on one of our ships, we did not hesitate to offer help,” the statement continued.