Is fear or anxiety a part of autism? It doesn’t feature in any clinical definition and yet it is usually there. Do parents of kids with ASD have fear or anxiety? Are you kidding? That’s the source of the stress that we almost all have. We have found that 3 fears/anxieties crop up very frequently when parents are considering traveling with their ASD child.
Fear # 1. I don’t like to share our diagnosis with strangers. This is understandable but shouldn’t be a barrier. Prevalence is now 1 in 68. Autism Awareness month events are all around us. The whole of the general public knows that autism is there, even if their understanding of what it means could improve.
You have lots of practice in sharing your diagnosis with every new physician, therapist and clinician that you meet. Of course, you do have the reasonable expectation that they know what autism is.
What about the travel industry? Let’s start by giving it its full title. It is the travel and hospitality industry. That word actually does mean something. Travel industry people are, by definition, welcoming and hospitable. What we’re saying here is that, if you talk to them, they will listen. You may need to give a little more explanation of what you need and why it’s important to you than you would with, say, a new clinician. However, most of the people that you speak with won’t judge you and will be eager to help.
For our last word on the subject we have to toot our own horn. When people come to us, they are sharing their diagnosis with a parent that is in the same situation and, from there, we take the strain and speak to the airline, TSA, the transfer company, the resort or the cruise line and you’ve only had to share your diagnosis once instead of half a dozen times.
Fear # 2. I worry about other people’s reaction when my child has a meltdown. This can be big, particularly if meltdowns are frequent, very visible or both. We face this everywhere and every day. It isn’t just something that is isolated to vacations.
So let’s look at a possibility that might work for you equally at the local supermarket or at the airport. Take a look at the Autism Button. The wording is very straightforward: I’m not misbehaving. I have autism. Please be understanding. Also, do take a look at the story behind it. The button was invented by a typically developing sibling who wanted a way for his non-verbal brother to be able to let strangers know that he wasn’t just being a brat.
We don’t use the Autism Button ourselves but use a little of the same thinking. When traveling, we all wear tee-shirts that have the slogan “Autism affects 1 in 88” across them. Of course, we now need to discard those and get some new ones with 1 in 68 on them!
In part, you’ll also have addressed this fear if you already tackled fear # 1. When you tell your resort/cruise ship about your diagnosis, you also get the chance to explain a little about potential meltdowns.
You can also address this fear, in part, by traveling with other families who have children on the spectrum. It’s highly likely that you are friends/acquaintances with such families. This does 2 things for you. Firstly, you are taking some part of your support network with you. Secondly, if your child is having a meltdown, your friends can give some well-needed education to frowning, tut-tutting strangers while you assist your child. You will do the same for them when it’s their turn.
Of course, you can take the logic of traveling with others to its ultimate conclusion and vacation with an entire group of families with kids on the spectrum. These are, not yet, very common but you can get a good feel for the idea by taking a look at our Magic For Autism project. That will be fully 50 families traveling together and not 1 of them wanting to judge you.
Fear # 3. Traveling involves so many changes and my child doesn’t “do” change. Here we are dealing with an inherent contradiction. Travel is all about broadening horizons and experiencing new things. Many kids on the spectrum don’t deal well with new things. Can this be a challenge? Yes. Should you let it be an insurmountable barrier? Absolutely not!
Let’s step back a moment and look at our job as parents. Our function is to prepare our kids for becoming adults and giving them the best opportunities that we can. It is our duty to make change as acceptable to our kids as is possible for them. The world is an ever-changing place and we are preparing them for it.
So, let’s look at how we make that challenge more “doable”.
First things first. Each child has their own specific thresholds when it comes to change. If this is a really big challenge for your child, try to break it down into smaller steps.
You could start out with just 1 night at a local hotel. You could move on to a short-stay weekend/3-4 day stay at somewhere further afield. If your child hasn’t flown before, you could look for one of the Practice Boarding Programs that are around. Try analyzing your “dream vacation” into a number of steps and practice each of them. By the time you come to realize your dream, some components of it can be familiar.
Next, is your child a visual learner? Kids on the spectrum mostly are. Can you create a visual story that will help to prepare your child for some of the changes to come? See our prior posting 4 people who can help you prepare for your vacation for some thoughts on this.
Of course, it will pay to keep constant those things that can be kept constant. There are many, many examples. Let’s just look at just a couple.
Hotel bedding is different, in the sensory way, from bedding at home. You can pack some familiar bedding and ship it ahead of you. This may be particularly useful if your child isn’t a good sleeper anyway.
Think about rental cars. It may be smart to rent a minivan while you are away, if you drive a minivan at home. If you drive a compact car at home, rent a compact car while away.
As we say, there are many possibilities for keeping some things constant. You are looking for those things that are portable to take with you or easily replicable at your destination, if too big to transport.
Fear # 4. We promised 3 and give you 4? Absolutely! We always try to go the extra mile. Here is the big thing. The biggest fear is fear itself. Heroes aren’t people that have no fear. They are people that overcome their fear.
In the end, it comes down to: Confront Your Fear. Overcoming it is empowering.
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