How families with disabilities travel together
Bethany Hildebrandt is meticulous about planning trips around her family’s needs as her eldest child, Kaylee, has cerebral palsy.
Payton Kirol, USA TODAY
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Traveling as a family forges bonds and priceless memories. Stuart Spielman and his wife Mona, who have been traveling with their two sons since they were young children, can attest to that.
Most recently, the Washington, D.C.-based family went to New York City to celebrate the 30th birthday of their son Zak, who has autism. The family met up with their younger son, who lives in Brooklyn, and other family who live in the area.
“Travel means an opportunity to bring the family together. That’s what it meant in this instance, to bring everyone together and celebrate a milestone in my older son’s life,” Spielman said.
The Spielmans have traveled far and near, like Paris, Hawaii, and Chicago. “My mantra is that everyone has a place in the world. Zak should not have a constricting life, Zak should have a full life, like the one I enjoy,” Spielman said.
Zak was diagnosed with autism right before he turned two, and at first, the family met challenges trying to ensure he was comfortable while traveling. He is non-speaking, expressing his needs and emotions in other ways. “For us, it’s persisting and enjoying ourselves as a family,” Spielman said.
Many of the over 20 million families with a child on the spectrum can relate to the Spielmans. Eighty-seven percent of families with an autistic child report that they don’t take family vacations, according to a 2019 survey of 1,000 parents by the International Board of Credentialing and Continuing Education Standards (IBCCES).
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Like the Spielmans, these families want to travel and explore new places with their children – the travel industry just isn’t accommodating to them. An overwhelming 97% said they are not satisfied with the current travel options for them.
Thankfully, the industry is changing, as more autism-friendly travel options, such as autism-certified resorts and flight boarding demonstrations are being introduced.
“Over the course of Zak’s 30 years, we are being met more often with smiles and encouragement rather than that impolite long stare,” Spielman said.
By now, the Spielmans have their travel planning down pat, although it took “trial and error” to get there. “We’ve had challenging trips and very easy trips,” Spielman said. Zak’s brother, mother and father know him well enough to know what he’s saying without speaking.
On their trips, the family “maintains the right pace” and stays “mindful of his physical comfort and his needs.” Typically, the family builds an agenda for their trip, adding breaks to the cafe car on their Amtrak ride and making sure there’s a casual restaurant that serves hot dogs and French fries, which are foods that Zak likes.
“We want to be mindful of what does a good vacation look like for Zak?” Spielman said. Like with any group travel, the family aims to meet the wants and needs of every member, but “it can be challenging in this case where Zak is non-verbal, but with 30 years of experience, we’ve got a little bit of insight.”
The family prioritizes Zak’s favorite activities, like walking or looking at water fountains and avoids circumstances that would make Zak uncomfortable, like going to the opera.
A frequent trip the family makes isn’t even far from their backyard – to Gettysburg, Pennsylvania, and the canal town of Harper’s Ferry in West Virginia. Zak enjoys walking along the canal and enjoying the day. Starting with smaller trips can help families learn more about the autistic member’s sensory triggers and be less overwhelming than a completely new environment, like a bustling city or far-away island.
Everyone can benefit from travel. Research has found that travel can benefit the personal development of autistic people by boosting their adaptability, building confidence (both with themselves and their parents), and helping them cope better with everyday stressors. The love and trust built through positive travel experiences are also meaningful.
In some instances, traveling with Zak has created connections that span borders for the family. “We often have this, we go to a hotel and staff will come up and say, ‘My brother’s on the spectrum, and we have some activities if you’re interested,’ ” said Spielman.
When Zak and his brother were toddlers, the family visited the Vatican Museums in Rome and Zak was vocalizing and caught the attention of a security guard, Spielman said. Thinking Zak was in trouble or was about to get kicked out, Spielman the guard actually told him, “My son is like yours.”
“I think everyone benefits from being around Zak,” he said.
One of Zak’s favorite things to do when traveling is go to the beach for the sensory experience. He enjoys walking in and out of the refreshing water and feeling the warmth of the sand and sun.
“The joys of seeing someone you care about kicking sand on the beach, just being content being in a different place and being happy, it means something special. With Zak, he’s part of our family, sometimes it’s harder to travel, but it’s just so important,” Spielman said.
Kathleen Wong is a travel reporter for USA TODAY based in Hawaii. You can reach her at kwong@usatoday.com.