Suzi Littlejohn and her family arrived at Logan Airport for their trip to Walt Disney World just like any other passengers. They pulled up to the terminal amid a bottleneck of honking cars and buses. They stood in line to check in, under the bright lights of the high-ceilinged ticketing area. They snaked through the security checkpoint.
By the time they finally inched through the jetway into the tightly packed plane, Littlejohn’s 5-year-old, Henry, was in meltdown mode. He wouldn’t sit still. He wouldn’t let his mother buckle his seatbelt. The flight eventually left without them.
“It was a really hard moment,” remembered Littleton, who lives in Holliston. “It was not only that we were planning to go to Disney World; it was, this is one more thing we weren’t going to be able to do. One more limit.”
Henry is on the autism spectrum. Families like his — often round-the-clock caregivers under constant stress — really need vacations. But the limitations of behavioral or physical disabilities make that much, much harder for them than it is for other people.
“That 24-hour cycle of being on and being stressed is exhausting and, yes, our families need a fricking vacation, let me tell you, yes. And it’s so hard to take one,” said Wendy Fournier, president of the Rhode Island-based National Autism Association, who has an 18-year-old daughter on the spectrum.
Now some travel providers are accommodating families like these, and whose kids have ADHD or Down syndrome or whose parents suffer from dementia, Alzheimer’s, or Parkinson’s diseases.
One reason is that it’s a big market. In the United States, about one out of every 68 children has been diagnosed with autism spectrum disorder, according to the Centers for Disease Control. Meanwhile, baby boomers are aging into their own special needs.
“The industry is waking up to, hold on, there’s an audience out there we haven’t addressed,” said Alan Day, a Connecticut travel agent who has a son on the spectrum and specializes in helping families like his. “They are gradually beginning to get it. There are millions of people out there who are not traveling. It’s simple to accommodate them, and you will get first-mover advantage because there is pent-up demand.”
There’s also growing public awareness of autism and other conditions, said Ellen Kilicarslan, vice president for family support at the Charles River Center in Needham, which provides programs for people with developmental disabilities.
“So many people are touched by this,” Kilicarslan said. “Everybody knows somebody who has autism. It’s in so many people’s families or their communities.”
The family resort company Beaches has provided sensitivity training in autism to all 6,000 of its employees. So did Sesame Street Place near Philadelphia, just before it opened for this season.
Both worked with the International Board of Credentialing and Continuing Education Standards, which, until about a year and a half ago, taught mostly healthcare industry employees and educators how to deal with clients who have cognitive disabilities, its president, Myron Pincomb said. Travel is the organization’s newest market, he said.
Businesses in Myrtle Beach, S.C., are working to become autism-friendly; the local airport has opened a “quiet room” for kids who are easily overstimulated.
There are also options closer to home. An autism nature trail is under development at Letchworth State Park in New York’s Finger Lakes region, developed with the help of occupational and physical therapists, speech language pathologists, special education teachers and families. It’s noise-free with a nature center nearby in case of rain, and real bathrooms.
One of the leaders of that effort, Loren Penman, said she got the idea from a neighbor whose grandson is nonverbal and often in a constant state of agitation, except when outdoors. “There’s something about the incredible expanse of nature,” Penman said.
The Charles River Center launched a program with Massport called Wings for Autism that lets autistic children and their families simulate going to and flying from Logan, check-in desk to plane, and trains airline employees and TSA officers how to deal with them; the idea has since been rolled out nationwide.
“You would be amazed at how many people from the airport and the airlines come, just to help out for the day,” said Kilicarslan. Seventy-six employees from JetBlue alone volunteered for the most recent run-through, in April.
Airports present a particular challenge for some families. “It’s a big, echo-y, loud place with lots of people and you have to do lots of things to get all the way to your airplane,” Kilicarslan said. “It is very stressful. They can’t really anticipate how their son and daughter is going to respond to any of that, so it’s anxiety-provoking.”
And that’s just one hurdle for parents who have children with behavioral issues.
“The struggle begins when you start packing,” Day said. “Are they on a special diet? Do you have to bring special medications or supplements, and how are you going to get through airport security with those, and are we going to stand in line for a long time when we check into the hotel?”
Even once they’ve settled into their vacation destinations, some families face problems. Day remembered traveling with his then-8-year-old son to a Caribbean resort. “He got overwhelmed and it became hell on wheels. All we’d done was move our problems to the Caribbean.”
There remain obstacles. Many therapies and other special services aren’t covered by school districts or insurance, leaving families who have special-needs children little extra cash to take vacations, for example said Holly Beeson, owner of HCB travel, which also works with families like those.
Nor is the movement to accommodate such children widespread. “How many places are set up to deal with autism? The answer is, not very many,” Day said.
Even if employees of a tourist destination do have training, other guests may not.
“One of the other factors that plays into parents’ minds is the judgment of bystanders,” said Day. “When that kid gets overwhelmed and has a meltdown, it looks for all the world exactly like a typically developing brat having a temper tantrum, and people will stand around and judge.”
On the whole, however, Fournier said, “What’s really hopeful is just knowing that a [hotel or resort] cares enough to get that certification. That in itself makes you feel more comfortable about going someplace. I just want to be in an environment where I can relax and my kid can relax. So that is almost enough alone — that you are welcome here.”
Littlejohn has seen that more and more. After attending four successive Wings for Autism practice sessions, Henry, who is now 13, let her take him on a plane — flying is now one of his favorite things to do — and they finally made it to Disney World.
“There’s a heightened sensitivity, a better understanding of autism and other disabilities, and more training and education, which has gone a long way to help,” she said — “even if it’s just by someone understanding what you’re going through.”