My husband and I have always traveled: Europe, North Africa, Asia, Central America, the Antilles, South America…we were the type of people who would leave with only what we could fit in our backpacks and without a second thought. When we learned that our first son, Xavier, was autistic, the question of how we would continue to travel was bound to come up. Leaving without a second thought and with little preparation was now completely out of the question. But, long story short, it was still possible… with some organization, patience, and the determination to not allow these challenges to take over our lives.
When I say that my son is autistic, people often tell me that they can’t tell by looking at him. I respond by asking what an autistic person looks like. In fact, the word autism is often accompanied by plenty of preconceived prejudices because people know so little about it. I don’t blame them. Before having to live with someone on the infamous spectrum myself, I didn’t know anything either!
Incidentally, it is called Autism Spectrum Disorder (ASD) because the characteristics of autism are really very vast. The Quebec Federation for Autism defines autism as a neurodevelopmental condition characterized by “significant deviation in two areas: persistent deficits in communication and social interactions, combined with restricted and repetitive behaviors, activities and interests.” These symptoms represent a continuum that varies from mild to severe and limit/alter daily functioning.
These children (who grow up to become adults) have to live in a world in which they only understand some of the rules and are often attacking them. Furthermore, sensory hypersensitivity or hyposensitivity are often present, which can cause them to have an extreme reaction to sensory stimuli that might seem ordinary to those who are neurotypical (not autistic). This sensitivity can be tied to different senses like touch, hearing, vision, or smell. My son, for example, is triggered by certain odors, sounds, and physical contact. This sensory hypersensitivity can cause a lot of confusion when he is faced with certain stimuli and is the source of breakdowns that are confusing to bystanders.
If you are a parent of an autistic child, you adjust your daily life in order to create the most stable and least triggering environment possible for them. Yet traveling, by definition, involves a deviation from your daily life and new stimuli that can be complicated to handle for the entire family.
Before going further, I would like to clarify that all of the advice mentioned in this article comes from parents of autistic children and specialists who work with children. These tips may not be perfect for everyone and every situation because they are very general. Autistic or not, each child is different and unique and only you know what is good for them and know their limits and strengths.
So it doesn’t matter if you decide to go away for a weekend close to home or for months to the other side of the world. Do whatever you can! But I (as well as all of the other parents that contributed to this article) am convinced that our planet is magnificent and that each family, no matter their challenges, deserves to appreciate its beauty and diversity. So here are some tips to help you prepare for your next trip…
BEFORE YOU LEAVE
If you’re like me, you are the type of person that packs at the last minute and decides to leave on a sudden impulse, but having an autistic child means that you have to anticipate more.
Help your child understand exactly when the trip is happening
Certain autistic children, like my own, have difficulty getting their bearings in time. Personally, I have a calendar in my kitchen with spaces that are large enough to write down what is planned for each day. When we plan to leave, my husband and I tell our son only once that the date and destination of our vacation are concrete and not long in advance (a few weeks), otherwise, he might think that he’s leaving the next morning and that will destabilize his routine. Once the date and destination are decided, we draw a picture on the calendar because he has some difficulty reading. And together we all count the days until we leave. Every morning, a new “X” on the calendar helps him to understand that our vacation is getting closer.
You could also use different colors on this same calendar to identify the duration of the trip and your return date. Bring the calendar in your suitcase in order to write or draw the planned activities for each day during your trip.
Bring along familiar objects
In order to allow your child to understand that they are going to go on a trip, it could be good to prepare some luggage with them and suggest bringing some security objects that will reassure them and that they could have beside their bed or take along while away from home.
Also consider everything that they use in or out of the house to calm them: music, headphones (regular or noise-canceling), sunglasses, laptop, tablet, blanket, sensory tools, etc. If they need it every day, they will need it even more in places and situations that are unfamiliar to them.
Xavier, for example, hardly ever leaves the house without a stuffed fox he has named Bernard (who has definitely seen better days). It is out of the question to leave without him!
Stéphanie is the mother of Louis, seven years old, who has a motor disability associated with an atypical form of autism. Louis can’t speak (but he expresses himself in his own way and has made great progress through the TEACCH method) and requires help with all of his daily needs. Louis needs routine and stability, and his parents, who live in France, travel all over the country and even abroad with him. Every time, they provide him with as much security as possible by bringing familiar objects like his giant hippopotamus that never leaves his side. But his greatest comforts are still emotional and not material: his parents and his two brothers…
Take Advantage of Visual Aids
Autistic children are typically very visual, this is why pictograms are often used as an effective tool for communication, whether they are verbal or non-verbal.
Take the time to show them the places that you are going to visit by using photos or videos online. One mom that I have talked to prints out pictures of the different places they are going to visit and makes a laminated book that her child can bring with them during their trip so that they have landmarks and know where they are going. What a great idea!
If you’re traveling by plane or train and it’s your child’s first time (and even if not, it can’t hurt to have a refresher), why not also prepare your child for the different stages that lie ahead, especially at the airport? :
- Checking luggage
- Going through security
- Going through customs
- Waiting to board
- Boarding
- Seating assignment in the plane, etc.
Depending on the degree of comprehension of your child, you can find books at the library that will help you to visualize these steps. Some parents go to visit the airport with their child before their day of departure in order to allow them to familiarize themselves with the sights and the sounds.
You probably regularly use social stories in order to anticipate or comprehend certain situations. These little comics help us to create social situations in which our children find themselves and speak with them so that they understand how to act or react and what is expected of them and others. By the way, the Montreal-Trudeau international airport put a video online of a social story that shows everyone the steps from arriving at the airport to the exit at the point of arrival for children with ASD. It’s a must-watch! It can also help guide other members of your family!
Furthermore, every year for the past 7 years, the Montreal-Trudeau international airport has organized a day for familiarization with the airport intended for autistic children and their families. This unique day allows children with autism spectrum disorder (ASD) or functional limitations to familiarize themselves with the airport processes in order to reduce their apprehension about air travel. See if your regional airport has something similar…and if it does not, suggest it!
Consider the Challenges
You are the expert when it comes to your child. No one else knows them better than you. Therefore, before choosing a destination or activity, think about what might be a challenge for them:
- Are you going to visit large cities where there will be crowds?
- Will they often be in noisy places?
- Are you going to change places often?
- Will there be significant temperature changes?
- Is there a possibility that food will be a problem?
There are certain trips that I will never do or certain cities that I will never visit because I know that it is not possible to go there with my son at the moment. But the world is large and the possibilities are endless: so we will choose what works for us.
Think about Food
Many autistic individuals have a particular connection with certain tastes or textures of food. It is always preferable to have food with you in order to make sure that, wherever you are, your child will eat.
Xavier eats almost anything, so that isn’t a challenge. On the contrary, he doesn’t feel hunger coming on, and he will announce out of nowhere that he is hungry. If he doesn’t say anything, anyone can see that his behavior changes dramatically. He becomes increasingly aggressive and impatient, and we can’t do anything else until he has eaten.
Believe me, I never leave home without food in my bag, especially since I also have a little man of 3 who also needs to eat quickly. This is only an example, but the idea is to proactively think about potential difficulties for your child and anticipate them so that everyone has a good time… because that is the ultimate goal, isn’t it?
Suggested items to bring in your luggage from parents of children with ASD:
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Now, what to do at the airport? The next article will give you tips to help get you started and help you get on the plane as well as get around by car.
Read Part 2: Traveling with An Autistic Child: Tips for The Plane and Transportation
and Part 3: Traveling With An Autistic Child: Tips to Make Your Trip Easier, During Your Trip:
Thanks a lot to Viviane for her exceptional contribution, and get to know her a little more thanks to her short biography below
A big thanks for their contribution:
- Eileen, familiesgo@gmail.com, FamiliesGo!
- Muir, muir.halleron@gmail.com, Twitch Content Creator
- Lisa, lisalane@projecthopesc.org, Project HOPE Foundation
- Dr. Raun Melmed
- Mackenzie, mmartin@boltpr.com, Bolt PR
- Kristen, mommnagingchaos@gmail.com, Mom Managing Chaos
- Merriam, saundersmft@gmail.com, Merriam Sarcia Saunders, LMFT
- Vanessa, vbush103@gmail.com, Vcreativeart16
