Traveling with children on the spectrum is one of the most difficult challenges for parents and can be equally confusing for onlookers. Who hasn’t ever seen a child crying uncontrollably at the airport? Did you wonder why his or her parents couldn’t control their own child?
Well, that reaction is common. It’s also one of the main fears that keeps parents from traveling with children on the spectrum, or with other invisible disabilities like ADHD, bipolar disorder, and Tourette syndrome.
Traveling with Children on the Spectrum: Stats
Parents and Certified Autism Travel Professionals (CATPs) report that fears over their children’s meltdowns and, consequently, what onlookers would think, have prevented them from traveling with children on the spectrum at least once. And the statistics bear this out: 87 percent of special needs families recently surveyed by IBCCES, the International Bureau of Credentialing and Continuing Education Standards, reported that they don’t travel, however, 93 percent said they would if they knew of more autism-friendly options or places where staff would know how to provide for their families’ needs.
Parents who do travel see the experience as a two-way street, a chance to educate as well as to learn. For them, it’s an opportunity for their children to explore the world and become global citizens. But it also allows them to serve as ambassadors. This way, the public can understand more about autism and how it manifests itself in those with the condition.
Traveling with Children on the Spectrum Starts with the Child’s Self-Acceptance
Parent Michelle Zeihr understands that gaining acceptance from others starts with self-acceptance: “Thessaly has been aware of her autism since she was very little; I’ve taught her to embrace it and let it empower her. Everyone is different and those differences make us who we are. Thessaly will often say to someone who does meet her: ‘I have autism and when I’m really excited, I flap my arms.’ She says it with a big smile on her face.”
The same approach applies to those with physical challenges. Cathy Winter, a CATP with EnVision Travel, has a son in a wheelchair who is “always getting ‘the look’ or being talked to like he’s ‘not there.’ I encourage him to take control of the situation before it happens by saying, ‘Hi, how are you today?’ It makes the ‘looker’ realize that my son is what you call ‘normal,’ but just in a wheelchair. I always advise people to talk directly to the person who may be challenged or disabled regardless of their cognitive level.”
Their wish is that onlookers accept their children as they have helped their children accept themselves, with empathy and without bias.
Traveling with Children on the Spectrum: Sensory Meltdowns
A sensory meltdown is a reaction to these stimuli and is something that neither the child nor the parents can control. It might be caused by sensory triggers, a change in routine, or the child’s frustration over an inability to communicate what’s wrong. This reaction can include crying, screaming, a total loss of control, and stimming, or repetitive, self-stimulatory behaviors such as hand-flapping or rocking back and forth. Here are some causes of what appears to be tantrums but are actually sensory meltdowns:
- Nonverbal Frustration– Over 90 percent of children with autism spectrum disorder have sensory issues. Many children with ASD are nonverbal (unable to speak) and can’t express what’s bothering them with words. This causes frustration, which in turn, can lead to a sensory meltdown.
- New Stimuli– All children, be they neurodiverse (those with autism spectrum disorder, ADHD, bipolar disorder, and etc.) as well as neurotypical (without those disorders) are creatures of habit and crave routine. The unfamiliar can be frightening, especially because it can open them up to a plethora of new and unpredictable stimuli. These stimuli can create a sensory overload.
- Other Triggers– What else can bring on a sensory overload? It varies. One of my own children couldn’t deal with going into department stores; the other would shriek in restaurants (not fun!) and couldn’t stand the smells at the local pet store (hay was a definite no-no).
Other sensory meltdown triggers can include:
- Strange visuals such as flashing or florescent lights with their accompanying hum
- Rooms with busy décor or bright wallpaper
- New smells, such as strong or unfamiliar scents (perfumes, cleaning agents)
- Strange sounds that neurotypical children take for granted — like those from construction sites, dogs barking, sirens, alarms, and crowds; and
- Physical sensations that can be caused by fans, excessive heat, clothing tags, rough fabrics, etc.
How to React to Meltdowns
So how should you, as an autism-friendly bystander react to a child’s sensory meltdown? Here are some tips:
- Know that your Curiosity is Natural
First, understand that as an onlooker, it’s natural to be curious—and even nervous about encountering something as unfamiliar as a sensory meltdown. Reacting to an outburst is normal. If you’re curious as to why the child is acting out, you can sometimes spot clues to the child’s condition. For example, the parents may be using some of the many products that identify a child as having ASD. These include buttons and lanyards with tags that say that the child is nonverbal, or cards they might hand out that ask for people to be patient with children that have autism. They may also be wearing a medical alert bracelet customized to the child’s specific disability.
- Silence is Golden
While your curiosity is only natural, think before you speak, and try not to stare. Jennifer Hardy, a CATP with Cruise Planners, and the mother of four children with special needs, has found it difficult to cope with unpleasant bystander reactions. “It has personally taken me a long time to ignore when other people look at my family funny or say something insensitive,” she says.
Hardy offers the following advice to other parents of kids on the spectrum, “The most important thing is to focus on your child and their immediate needs. Unless someone is offering to help you, tune everyone else out. You do not owe anyone an explanation, and no one deserves to come between you and your child in a time of crisis. I don’t even pay attention to odd looks anymore because the overreaction isn’t worth the attention.”
Sarah Salter of Travelmation knows that people mean to be kind or helpful, but often finds their comments and looks hard to take: “My son uses a ‘wheelchair as a stroller’ tag at Disney for when he’s getting his feeding tube. Even though this accommodation is in place, we still have interactions with other guests or cast members who are poorly trained.
“This was especially the case when we used a Keenz [stroller] wagon. Even though we followed procedure and had the appropriate tags from guest relations, we got a lot of ‘Sure wish I could ride around like that’ or ‘How lucky are you to rest in a wagon.’
“We also got a lot of side-eye, and ‘helpful’ people (other guests) pointing out where the stroller parking was.”
- Smile and Get Out of the Way
Giving the parent some space and empathy goes a long way, says parent and CATP Carl W. Johnson of Adventures in Golf. “For one of our children, it’s readily apparent that they struggle generally. Most people pick up on that notion quickly and will actually give us a brief smile. Or even sometimes, we find other people being helpful by moving out of the way near [airport] security to give us more room. Giving a simple face or hand gesture lets us know they’re aware that we need a bit of extra time or whatever we might need at that point.”
Onlookers should not be surprised or insulted, however, if a parent ignores your offer of help. Parents traveling with kids on the spectrum often develop their own ways of handling things and would rather be left alone. “Usually, I remove my daughter and take her somewhere to calm down without feeling the need to explain her actions to others, says Kristen Chambliss “Our daughter does great, though, so this hasn’t been an issue for us since she was three. We have a list of coping skills she can read and choose from to calm down, [These include] getting a drink of water, playing with a pop-it (a toy like bubble wrap), or taking some deep breaths.”
- Understand that Autism-Spectrum Parents are Doing the Best They Can
Many autism spectrum families arrange travel far in advance to eliminate potential triggers, and discomfort for those around them. “Usually, we pre-plan things so that they’re seated in quiet areas, take private tours, and are given opportunities to shine without needing to explain to all the mean people in the world,” says Sarah Marshall, a CATP with TravelAble.
But when issues do arise, spectrum parents appreciate kindness and sensitivity from other travelers. One anonymous mom was vexed by a fellow passenger’s lack of understanding: “Onboard our first flight when he was five, my son [with ASD] kept his voice low, didn’t demand anything, didn’t want to walk back and forth, didn’t cry or get upset during six long hours strapped into a chair. All he did — when not eating or watching a movie — was pop up and down in his seat or lean on his fold-down tray to draw. As far as I was concerned, he was gold, even though the woman sitting in front of him didn’t agree because her seatback would move as he drew.
“I assumed she’d never been a child herself and had sprung fully formed from her father’s head.” This mom’s advice to onlookers? “Try to remember that children are not adults.”