Every parent wants to give his or her child a set of vacation memories; that’s no different for parents of people with autism.
But while most trips for “typical” families are pretty straightforward, traveling with someone who has Autism Spectrum Disorder is indeed more of a journey. It requires research, very deliberate decisions, and the kind of empathy that comes from putting yourself in the shoes of someone whose brain is wired in a completely different way than your own.
How do I know? Because I have a son with autism. And while every person with the diagnosis is unique, many share Joseph’s traits: sensory processing challenges, difficulty making transitions, and an inability to communicate. And many parents have shared experiences with these challenges, one of which is the difficulty of planning the “typical” vacations we all want to enjoy in our lives.
My wife and I weren’t willing to give up our dream of building the set of family vacation memories we wanted Joseph to have. Here are some tips from our own journey that will hopefully help you set off on yours:
Preparing your child. Joseph has been in a full-time residential program called Anderson Center for Autism for many years. We have access to their experts and staff, who can help us understand exactly what Joey might need when he travels. We’ve learned to start with them. Not only have they helped us identify “must-haves” for our trips, but they’ve worked to help him become more prepared. The training he receives at Anderson has led to a dramatic decrease in self-injurious behavior (SIB) and aggression, and has also helped him understand how to wait for those things he wants. This shift has helped us overcome the biggest obstacles that had historically kept us from fulfilling our travel goals.
Planning for sleep. Without rest, how can anyone enjoy a vacation? We discovered that easing into a multi-night stay was the best way to go. Start with one night, then work your way up to two nights and more. At first Joey would not go to sleep in a hotel room because he was used to sleeping in his room at Anderson – but each time we went away it got a little better. When we would go away for two nights sometimes he would not sleep the first night until early in the morning and then the second night he would sleep. As he got older and more used to going on trips he began to sleep better. Sometimes you just have to hang in there and keep trying, but take it one step (sleep) at a time.
Trains, planes, or automobiles? Think about transportation to your destination and what will be easiest on your family. In November of 2017, we went to Disney and Universal in Orlando for a week. We took the auto train which was great for Joseph because your car and baggage travels on the train with you, and we essentially had our own family bedroom. We also paid extra for quick “off-boarding” so that Joseph didn’t have to wait when it was time to move to the next step of our travels. Coming from New York, it was a bit out of our way to drive the six hours to Virginia to hop on the train, but he loves car rides and the auto train worked beautifully overall.
Be patient with those who are not aware. On the same auto train trip, we did have an incident when a woman became upset as Joey went through a ten-minute behavioral episode. Instead of growing angry with her, I reassured her that it was okay. Travel is not only an exercise in being empathetic to our own children, but in acknowledging that others may not have experience with autism and that is not their fault. We need to be mindful of the fact that it’s easier to gently explain what’s happening than to express frustration with the lack of knowledge. It’s a win for everyone when, as parents, we can remain calm in our exchanges with others.
Travel to resorts and locations that are autism-friendly. We know from our experiences on the auto train that Amtrak is very accommodating. We’ve also learned that Disney and Universal are equally as welcoming and helpful to families like ours. In fact, to mitigate the stress associated with waiting on long lines, Disney offers a Fast Pass for families of those with special needs. This made SUCH a difference! And there are businesses and even entire communities around the world who are getting trained to become autism-supportive – places like the historic village of Rhinebeck, an Autism Supportive Community that is part of the first-of-its-kind Autism Supportive County, Dutchess, in the Hudson Valley region of New York State.
Communicate! As parents, we all know that we are the best advocates for our kids. Joseph sometimes goes from being excited to upset very quickly. We assess what in his environment needs to be modified, and we tell a staff person immediately. People are inherently good and want to be of support; we have been amazed by the willingness of folks to do what they can to ensure Joseph’s contentment.
Ask yourself: what does my son or daughter want? We always have to remember that if Joseph is happy and comfortable, we’re happy and comfortable – so we really need to drop our own agendas and consider what he’ll truly enjoy as we plan our trips. He loves going to the indoor water parks, which are great for most families impacted by autism, because everything is right in the hotel. We went to Camelback in the Poconos for the Thanksgiving holiday and then we went to Great Escape Lodge in Lake George for Christmas Eve and Christmas. Like many people with autism, Joseph loves the water, especially the “lazy river”, in which we can float around for hours. Relaxing for all involved!
Be flexible. At times if Joey is not doing well or something is bothering him (hard to tell because he is nonverbal) we may leave the hotel or outing earlier than planned and return to Anderson, which happens seldomly, but it does occur from time to time. It’s important to also let children (and adults) with autism move at their own pace and lead the way a bit. If they want to engage in an activity, fine. If not, that needs to be fine too. For example, when other children are playing water basketball and Joey wants to take the ball and instead of throwing it into the net wants to throw it way up in the air, that’s okay. Another example: Joey doesn’t like to sit in one place for very long – but one time when we were at the mall he took me by the arm and led me into the movie theater. We sat down for ten minutes watching the movie, and then Joey got up and did not want to stay any longer, which was okay. Recently, we went to see a movie, and he sat down for an hour and 10 minutes. Whatever the success, we celebrate it and we go with the flow.
Show gratitude to those who make the journey possible. Anyone who has a child with autism knows that there are many other people responsible for making a journey possible. In addition to thanking the staff at resorts, on the train, and the fellow guests on a trip, we always remind the teachers, therapists, and team at Anderson – Joey’s home away from home – that his progress and ability to travel is possible because of their good work all year long.
Traveling with a child who has autism is indeed a reminder that we are on this journey with a much larger circle of people, and even if they aren’t physically present when we go away, they’re all important faces in our set of vacation memories. We couldn’t have these “typical” experiences without the people whose dedication is anything but typical; we are ever grateful.