My 29-year-old Son Is on the Autism Spectrum — but It Doesn’t Stop Us From Traveling the World

For Travel + Leisure’s column Traveling As, we’re talking to travelers about what it’s like to explore the world through their unique perspectives. We chatted with Stuart Spielman, senior vice president of advocacy for Autism Speaks, about how travel has been freeing for him and his 29-year-old son, Zak, who is on the autism spectrum. Here’s their story… 

Zak is my firstborn son, who will be celebrating his 30th birthday in June. He didn’t reach his developmental milestones early on, and over a period of time, we began to be more concerned that he had a developmental disability. The diagnosis unfolded in stages. We saw professionals who progressively indicated with greater certainty that he was autistic. He received an early diagnosis, just before he was two years old.

Zak can’t speak. He lives with me and my wife, Mona. He can express his feelings in different ways, and certainly makes his wants known. When he’s particularly happy, for example, he will literally jump up and down for joy. It’s like adapting to anyone you know quite well. You have to understand what he does and doesn’t like and try to reach an agreement. It’s that give and take we all have when we’re interacting with one another. 

Travel has always been part of our world. Mona and I have felt it’s important to expose the kids and ourselves to different experiences. We’ve gone to national parks and to Europe. Zak has been to London, Krakow, Hawaii, Venice, and Paris — even the top of the Eiffel Tower. My younger son, Ben, is 28 now and he’s independent. He’s also an ultimate Frisbee player and we’ve been to his tournaments in Milwaukee, Cincinnati, and all over the world. We travel a lot as a family. Where we go, Zak goes. 

When the boys were in their late teens, we went to Lake Louise. We stayed at the Fairmont [Chateau Lake Louise], with its unbelievable views, and asked for a recommendation for a hike we could all do. Soon, I realized the trail went along the face of a cliff with a pretty sheer drop off.

It was one of those parenting moments when you think to yourself, “How did I get us here?” The funny thing is, Zak is very sure-footed — he always has been. I was grabbing his hand and he was totally fine. I learned I have to relax, not be an excitable dad. Zak just makes his way in the world. That’s what gives me a lot of joy: Wherever we go, he will find a way to do what he needs to. 

Of course, there can be challenges. Zak likes predictability, like familiar foods and having access to a refrigerator. When he comes home from his day’s activities, he’ll go to the refrigerator and start pulling things out that he’s interested in. You can’t do that as readily when you’re traveling in a different place.

When the environment changes, it can sometimes concern Zak; other times, he’s fine with it. My wife and I always have to be sensitive to how he’s approaching things: Is he hungry? Is he comfortable? Is he tired from traveling? He can’t say he’s tired or if he has a headache, so I have to use my eyes, ears, and all my senses to figure out where he is.

Zak usually does well on flights. Generally, he goes with the flow. He doesn’t mind the lines at airports because he knows the routine. He has familiar people around him — including me, his mom, and sometimes his brother and grandma — people he knows and cares about, so he can stretch out or put his head on our lap if he’s tired. Plus, one of Zak’s favorite things is Coca-Cola. He knows that on flights, if you ask for Coca-Cola, they will give you one. That’s comforting to him. 

Actually, one of the most difficult experiences we had traveling with him was when I saved up a lot of miles and we flew business class. That unsettled him because he was used to the little cramped space. So, it’s important to have an environment where he’s comfortable. 

Living near Washington, D.C., many of our travels are to sites in the area with significant history. Recently, we went to the Monocacy Aqueduct, a gorgeous structure with a fascinating Civil War past. We’ve been to Gettysburg a number of times, as well as Harpers Ferry along the canal. We’ve also visited lesser-known spots, like Edward’s Ferry, which is one of our favorites. It’s where union balloonists ascended from during the war — and it’s very peaceful. 

For Zak, it’s less a matter of understanding the Civil War history and more about the experience. It’s about being in the moment and appreciating the view of rushing water or seeing a wild turkey. It’s simply great to be out and about, and see and meet people,

During the pandemic, when we were all looking for places where there weren’t lots of people, we started going to a spot off the C&O Canal in Maryland, called McKee-Beshers Wildlife Management Area. Not too many people go here since it’s a swamp, but we walked around and enjoyed ourselves. Even though it was close to home, it was one of my favorite travel moments because it was transparent how happy he was — there was no guile.

One of the experiences of disability is that your world can constrict you. There are environments where you don’t want to stand out, where you become self-conscious. For example, if we went to the theater, I’d want to be conscious of everyone since Zak can make some happy noises. But being outside and walking by sunbathing turtles, birds, and people who are enjoying the scenery — it’s liberating. We’re doing what everyone else is doing and feeling that freedom. 

In a place like Edward’s Ferry, Zak and I can yell at the top of our voice and no one will hear us. This is the natural world and it’s important for us to be part of it as father and son.

When we were at the Louvre, he was really young and there were all these people trying to see the Mona Lisa. We ran into an Australian mother and son and started talking. We learned her son was autistic. So, there are these moments of connection with other families, whether in places you’d expect, such as the Louvre where tourists from around the world congregate, or in places you don’t expect, like the trails, outskirts, or areas where there’s greater solitude.

There have been a few times when people will say things like, “Wouldn’t your son be happier in a different restaurant?” More often, the lack of concern is expressed by a stare that goes beyond the normal taking in what’s in your visual space. You understand children are curious, but you expect more from adults. There’s no license to stare at Zak because he’s different from some people.

It’s important for people to see my family as part of this world and not narrow our experience because of Zak’s disability. By understanding and interacting with us, they can perhaps think about travel in a different way. Travel is for everyone, not limited to those who are neurotypical.

But generally, people are supportive and encouraging. I can’t tell you the number of times we’ve walked past someone who has a beaming smile because they appreciate how important it is for Zak to be in this world. This is the world we live in, and we all have a place in it.