This is a post by Margalit Sturm Francus, Autism TravelingMom. In 2009, Margalit established a nonprofit website, Autistic Globetrotting, to inspire and encourage autistic families to explore the world. Margalit's blog Autistic Globe Trotting: Autism Travel Made Easy is dedicated entirely to autism travel. Margalit lives in sunny Southern California with her husband of 20 years and her two teen sons, one of whom is on the autism spectrum. Read the full post from Margalit on TravelingMom.com here!
People with autism are not like everyone else. They have special needs, especially when it comes to traveling. To the untrained eye, these children may come across as immature or odd. As the mother of a now adult child with autism, I have experienced both well-meaning and ill-intended comments from fellow travelers; mostly because people don’t understand this specific special need condition.
Here are 20 things that I wish people knew about traveling with a child with autism:
Children with autism struggle to understand the concept of waiting. They are impulse-led so don’t adjust well when things don’t happen when they think they should. They really battle to wait for long periods of time, so when or if you see parents asking to cut the lines with their kids, it doesn’t mean they are rude. It could be that they are trying to keep their child from having a meltdown because he had to stand or wait for long periods of time.
2. Sensory Stimulation
Some children with autism are sensory avoiders and do not like to be touched. Some children with autism are sensory seekers and touch absolutely everything including things they aren’t supposed to. As a member of the public, you do not need to intervene. As the mother, I know best how to handle the situation and will be the one to calm my child in the event of a meltdown.
One of the telltale signs of people who are on the autism spectrum is that they are quite inflexible. Changes in plans that come with no warning can be met with the volatility of an erupting volcano. Please be aware that very little can be done to console my child and any attempt on your part to help will not be received well, especially while a meltdown is occurring.
4. Physical impulsivity
People with autism may have involuntary muscle movements as well as common repetitive behaviors such as hand flapping, rocking, jumping and twirling. Fellow passengers on buses, trains or airplanes can find this disruptive and disturbing. Talk to me, the mom. I know best how to make my child understand what is appropriate or not. Inappropriate behavior can ever help the situation.
Since many children with autism have sensory issues, they attach a very strong sense of identity to their belongings, especially some items of clothing. This becomes a problem when luggage gets delayed or lost by airlines or cruise lines and the clothing can’t be replaced. Please understand that my child is not being petty. He has lost something extremely dear and valuable to him.
Many children and adults with autism don’t understand the concept of “personal space.” It is very likely that they may encroach on the space of others unintentionally. This is evident in airplanes where they might take over more than their own seat armrest or allocated space. If you feel invaded, please speak to me and I will know how best to get my child to comply.
7. Noise Sensitivity
Children with autism are not always spatially aware when out in public. They may not always remember their inside voice in restaurants or movie theaters, so they appear to be loud, disruptive and rude. There have been many times when people have incorrectly perceived my repeated verbal prompting to remind my child how to behave as bad parenting.
8. Muscle Tone
Sometimes, children with autism may spill food items on themselves. This is due to coordination or balance issues and not because they are careless. When traveling, it sometimes happens that you share tables with strangers in restaurants or have no choice but to be in close proximity. You may have to see this or experience being spilled on. Please be aware that this was an accident and completely unintentional.
As hard as we try or they themselves try, some autistic children may stick out in a crowd because they are dressed differently. Based on their sensory needs they may wear sandals and shorts in the dead of winter or a favorite jacket to the pool. It is part of their identity and security and they are not trying to draw attention to themselves.
Some people with autism can be really picky eaters. Some kids only eat certain items at certain temperatures and can experience a meltdown if they aren’t duly accommodated. This means that as parents we need to run around and find food venues that have specific items that our child can and will eat. Please understand that my running around is to try and avoid a meltdown that will affect your dining experience.
It is important to know that you can’t really reason with a child with autism when things go awry. Once a meltdown begins, it is nearly impossible to calm them down. As the mother, I am very well aware of what will ensue and what will not work. Preventing meltdowns is everything and that is why getting pre arranged accommodations from airlines, cruise lines, hotels and theme parks are so important to us.
Different textures, smells, sounds, tastes and light (especially strobe lights) can trigger extreme reactions. I usually know what the triggers are and try to avoid them, but once in a while a new trigger might surface. Should you witness a moment like this and want to help you are more than welcome to ask something mundane and non intrusive like ‘Can I help in anyway?’ but please don’t judge me while I comfort my son.
Sometimes we need an escape from things that are going on around us. This applies even more so to children with autism. Simply put, their coping resources can be impaired. This is when they need a quiet place to regroup and rest. As the mom, I know what is best for my child and when I am looking for that quiet place, it is with my child and fellow traveler’s best interest in mind.
When dealing with autism, even older kids may wander off and can find themselves in unsafe situations like bodies of water, pools and lakes without knowing how to swim. They can dart off into traffic if left unsupervised. Please realize that I am not being a “helicopter parent.” I am aware of what my child’s safety needs are.
For children with special needs and autism, following directions may be extra challenging. These children might need reminders from staff as well as parents to sit in their seat on a plane or buckle up on a ride for example. If this takes extra time, please be patient.
Sometimes, special needs and autism manifests in communication difficulties. If they have a language deficiency, explaining their needs and wishes clearly can take more time; sometimes they need help with ordering in restaurants or purchasing items in stores. Some are non-verbal so they use sign language or type on their tablet. It is important that we have patience with them as the extra frustration can lead to a meltdown.
17. Social Cues
Many children with autism might not make eye contact, especially with strangers. They also are known to echo and repeat words or phrases over and over and not quietly; all of which may be interpreted as rude by fellow travelers. Please know that it is not from lack of trying on the parents’ part to educate the child in manners.
Because children with autism struggle with change and transition, it is important to factor in longer times to prepare between activities. Doing this effectively during travel, which requires more flexibility, takes extra time and as a mother I am always thinking and anticipating how to segue more smoothly. This might explain why I as the mother seem preoccupied.
It is common knowledge that many children with autism have difficulty socializing; particularly with their peers. They find participation in conversations and group games a struggle, so they might need additional staff to help when attending resort or cruise-line kids clubs. As the mom, I am often astounded at people’s reactions when they say things like, “She thinks her son is better than anyone else!”
This is such an important point for all people, not only kids with autism. They are not retarded, so please don’t talk about them like they don’t understand or aren’t there. It is a matter of courtesy and makes my job as a mom easier when I don’t have to defend my child’s intelligence as well as his other challenges.
Because you cared enough to make it through this long post, my first reaction is to hug you.
Thank you for learning more about my son and so many others on the autism spectrum. If you wish to help – then please help us raise acceptance and more understanding. The next time you see a parent comfort their child in a restaurant or trying to cut through the line in an airport, please remind yourself you may not know the entire story.