When Nicole Thibault had her first son, she vowed to keep travel as a focus for her family. “We weren’t going to let having kids hold us back from traveling,” she said.
Then traveling started to become “tricky” when her son was about 2½.
“Things he loved on our earlier trips just became nightmares,” Thibault said. At Disney World, a place he used to love, he started to dislike the characters, loud noises and crowds.
Six months later, he was diagnosed with autism. One in 36 children in the U.S. is on the spectrum, according to 2020 data by the Centers for Disease Control and Prevention.
Not wanting to give up family vacations, Thibault reached out to support groups with fellow mothers who had children on the spectrum to ask how they were able to travel.
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“I can’t even go to the grocery store with my kid without a meltdown,” she said. “What was so sad was most of the parents that I met … were saying, we don’t travel … it’s too difficult. We just skip the family vacations.”
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Only 13% of parents with a child on the spectrum said they take vacations as a family, according to a 2019 survey by the International Board of Credentialing and Continuing Education Standards, or IBCCES.
Thibault was determined. “We’re going to keep trying. We’re going to figure this out.”
The family started small, taking her son on a day trip, then a weekend trip before going on a plane. “Over time, we learned so much about sensory triggers and how to avoid them, how to plan ahead, and what to do if you’re having a sensory meltdown in public,” she said.
As a mother of three – whose youngest child, now 15, also has an invisible illness –Thibault owns the agency Magical Storybook Travel, where she helps families with members on the spectrum plan and prepare for trips.
“(It means so much) when I can help those families who in a million years never thought they’d be able to take a vacation, and I help them get through it and make awesome memories with their kids,” Thibault said.
Barriers to travel
For many children on the spectrum, “The thought of going someplace new they’ve never been before … is very overwhelming, which can cause a huge amount of anxiety,” Thibault said.
“Families do not want to put themselves in a situation where their child is dysregulated and without a trusted environment to bring them back,” said Jennifer Hardy, an accessible travel specialist and mother of four children with invisible disabilities.
Travel has had a huge impact on Hardy’s kids.
“Our children often struggle to understand social norms and expectations and traveling helps them to understand new cultures, learn some flexibility and independence skills, and have new experiences such as new foods, new modes of transportation, and hear new music,” she said.
When Hardy’s youngest child was 5, he realized how much he loved roast duck on a trip – “This is a big deal for a kid who literally wants to eat nothing except butter, fries, and Nutella sandwiches!”
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For many years, the hospitality industry has not been inclusive to those with invisible disabilities. Ninety-seven percent of families with autism said they were not satisfied with travel options for families with autism and 93% said they would take more trips if there were more autism-certified options, according to the IBCCES survey.
The travel industry is becoming more inclusive as more cruise lines, hotels, theme parks and even cities work to become autism-friendly. “You know when you get there, they’re going to be ready for you,” Thibault said.
In 2019, Mesa, Arizona, became the first autism-certified city, offering about 60 certified businesses and organizations, compared to just one or two in most places.
Taking it step by step
“With every child on the spectrum being different, the level of planning and preparation required to get ready for a vacation is going to vary, even place to place,” Hardy said. “The important thing is that we tailor the planning steps to familiarize the child beforehand with what to expect and how to handle disruptions while focusing on how best to meet their individual needs.”
As Dawn Barclay, author of “Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible, and the Neurodiverse” said, you never spring a trip on any child, especially one with sensory triggers. Introduce the concept of travel slowly, and make adjustments as needed.
When you can have a successful experience, that becomes a positive frame of reference for your child, Barclay said.
Here are a few expert-recommended tips:
- Read books, even picture books, with travel situations, Barclay said.
- Role play in “social stories,” which walks kids through what to expect in different travel situations, step by step, according to Hardy.
- Take your child on digestible but new experiences, like the zoo or a restaurant that serves new cuisine, according to Barclay.
- Thibault relies heavily on YouTube videos to help give kids a preview of what to expect. Many cruise lines have videos of their staterooms and parks have videos of their rides.
- If your child has never stayed in a bed other than their own, ask a family member or friend who lives in another house to let your family stay overnight, she said.
- To reduce barriers when traveling by air, the organization Wings for Autism introduces people on the spectrum to flying. Check out their calendar if there’s an event in your area soon.
There are also many resources to help parents with their trip planning. Barclay routinely updates her blog Traveling Different with new certified destinations and events. Another helpful website is Autism Travel, which provides a directory of autism-friendly businesses and travel agents.
What is it like to work with a Certified Autism Travel Professional?
“Parents doing their first vacation, know that you don’t have to do it alone,” Thibault, who is a Certified Autism Travel Professional, said.
A credential that was introduced in 2018, a CATP can provide support and travel-planning services for families who have someone on the spectrum. There are over 700 CATP professionals to choose from and many are also parents to a child on the spectrum, so “they probably live it as well,” Thibault said.
Working with a CATP starts off with a pre-counseling session that’s a full download of your child’s needs, including any room preferences, dietary restrictions and desired activities. Once things are booked, they go over the itinerary, including watching videos of the rooms or parks.
“You can avoid so many sensory meltdowns … if you really take the time with their client,” Thibault said.
Other travel tips for families with autism
- Don’t be afraid to call the hotel and be honest that you’re traveling with someone with autism who has certain needs, such as requesting a room far from the foot traffic in the lobby or what sort of detergent is used, Hardy said.
- Come up with some backup indoor activities to do in case the weather is bad, Barclay added.
- Consider booking a hotel or vacation rental with a kitchen or kitchenette so your family can cook their own meals, Barclay said.
- “Instead of trying to cram four to five things into a day, do one or two things and spend the rest of the day decompressing by the pool,” Barclay said.
“When you’ve met one person with autism, you’ve only met one person with autism,” Thibault said. “Each trip that I plan is tailor-made to that family and that family only.”
Kathleen Wong is a travel reporter for USA TODAY based in Hawaii. You can reach her at [email protected]