I received an message on my Facebook today from a most distraught mother whose family was kicked off an airplane when her autistic daughter wasn't able to fasten her seat belt because of her anxiety with flying.
The airline's response to the mother was:
When a passenger tries to open the doors of the plane while the plane is rolling to the runway, we are as an airline committed to intervene immediately and to react. The safety of our passengers is always at our forefront.
The mother told me that her child had never tried to open the door as she was sitting next to the window on a three-person row. It would have been impossible for her to go across all of them and open the door.
As much as I empathize with the mother, I can also see the airline's position. Safety is paramount and if the flight attendants do not understand autism, a panic attack can seem threatening. Ideally, airlines would educate their employees about autism. But I have also learned ways to help with successful airline travel and I now travel easily with my seventeen-year-old severely autistic and non-verbal son, Neal.
This wasn't always the case. I recall being in a similar situation shortly after 9/11. Jeff, my boyfriend at the time (now husband) and I were traveling with Neal from LAX to Washington, D.C.
Neal was just shy of nine years old and about 4' 7'', almost my height. To outward appearances, he looks like a "typical' or "normal" kid." In some ways, this is to his advantage; in other ways it's not. For most people it's easier to feel compassion for a child in a wheelchair, or for a teen with a seeing-eye dog. But autism is an "invisible disability." Most kids with autism look like other kids -- but tend to exhibit "bad" behavior.
At the airport, as we wait to board, Neal stares excitedly out the window at the huge planes. I turn my head for a second. I hear the sound of an alarm. Neal has raced to the exit door and tried to open it so that he can go outside and be with the airplanes. Now, the loud alarm has set Neal off. He's freaking out. People glare at him. Security races over.
"It's okay sweetheart," I tell Neal, then I call out to the panicky crowd, "It's okay everyone! He has autism! He just likes airplanes! He didn't mean any harm!" Then we board the plane.
We are seated in coach, about eight rows back from first class. Neal puts his backpack under his chair and snaps on his seatbelt. He covers his ears with his hands before take-off just as we rehearsed.
Soon, the flight attendant comes over and asks if we want anything to drink. We practiced this too, and Neal knows to ask for water. He does. Success. But then Neal wants to go to the bathroom. He needs to go, NOW. The flight attendant's cart is blocking the aisle. This is not something we rehearsed.
He can't wait the thirty minutes it could take for the attendants to get to the back of the plane, so Neal and I get up from our seats and I ask one of the flight attendants if Neal can use the bathroom that's right in front of us. As I ask, a man from first class, clearly able to overhear me, heads into the bathroom, pushing ahead of Neal.
"No," the flight attendant tells me curtly, "That restroom is for first class passengers, only."
"We know this," I say, calmly, but determined. "But my son has autism and he really needs to go to the bathroom."
"Well," she answers, "he's going to have to wait like everyone else."
Neal sees an opening. He darts towards the bathroom door. Another man jumps in front of the door and glares at him with the cocky condescension of a first class citizen. Neal tantrums.
"Return to your seats," demands the flight attendant.
Neal grabs her eyeglasses off her face. She panics and calls for security.
All this happens within twenty seconds. I'm losing it. Jeff steps in. He calms me, then calms Neal enough to get him to wait behind the cart as it passes each seat. He then takes Neal to the bathroom. I go back to my seat, fuming: if that stupid flight attendant hadn't been so stuck on her rules, if that guy in first class hasn't been so arrogant none of this would have happened.
Today, I know that I need to call the airline in advance and let them know I'm traveling with a child who has special needs. When I do this, they are more than accommodating, especially on smaller airlines. I also practice with Neal everything that is going to happen weeks before we board the plane. I call this "Rehearse for Life." Here are some of the things you can do in advance:
With the rise in autism (1 in 110 children) there will be more and more people with disabilities traveling. I encourage everyone to be more conscious of those with "invisible disabilities" and to be less fearful of things you may not understand. In a perfect world, those with autism and other special needs can teach us all to be more compassionate and patient.
Please share with me your travel stories -- Both positive and challenging.
Elaine Hall
Author: Now I See the Moon: a mother, a son, a miracle (HarperCollins July 2010)
Co-Author with Diane Isaacs: Seven Keys to Unlock Autism (Wiley October 2011)
Follow Elaine Hall on Twitter: www.twitter.com/COACHE
Also, a good flight attendant would have allowed Neal -- with or without a disability -- use the first class restroom. My kids have done that plenty of times and flight attendants understand that sometimes kids can't wait. That flight attendant had "issues" because they do this all the time in order to prevent an accident.
We're so quick in our society tell people who have disabilities what they should and shouldn't do, but where are the people who will actually step up to the bat and help so that we can make it to our destinations safely the same as everyone else? Where's that American spirit of helping your brother man?
My son is seven and has "moderate-to-severe" autism. I was petrified to fly with him a year ago but for us to see the specialist that he needed to see in Texas it was what we had to do. I suppose in a perfect world we could've driven (so as not to disturb the perfect flight for everyone else)...but in my reality it wouldn't be possible to miss that much work or for him to miss that much school.
My son actually did very well with the help of social stories, new toys, noise-cancelling headphones, and VERY understanding passengers and flight attendants.
There's so much I would like to say to some of these commenters below...but I suppose that you are so set in your ways and can not for a second have empathy and try to imagine someone's life from another point of view that I would just be wasting my breath. But please, PLEASE, stop referring to my baby and so many more like him as "r-people". Are we to the point of name-calling? With the prevalence of autism continuing to be on the rise, it could very well be your own family in these shoes one day. I pray that you have more understanding people surrounding you.
And when an autistic kid starts having a meltdown on board, they could run the very real risk of hurting themselves or someone else.
Whether we like it or not, there are always going to be families travelling on board with their autistic kids. If the primary caregiver of an autistic child needs to travel long distance- and taking a car is not an option- do you really think they can just leave that kid alone with random relatives or neighbours? I don't know what a suitable compromise would look like. Maybe upgrading to first class (more leg room, less noise, less waiting time for toilets) might help some, but I can't imagine that would be financially feasible for many families. I'm sure a little less judgementalism would go a long way, though.
I do understand the concerns. Flying is an inherently stressful situation. We're not meant to be packed like sardines a couple of thousand feet in the air. We get dehydrated. Our stomachs bloat uncomfortably. We can't sleep. We get antsy and irritable. The last thing anyone wants is a screaming kid on board.
I am tired of "my child is an r-person" being an excuse.
If I had a problem that would cause a large inconvenience to the other passengers or flight staff I would remove myself from the flight. I expect other people to be as courteous.
If you do not want to control yourself or your children on a flight, then you should start flying private.
In the above incident, cart was serving drinks to folks, increasing airline revenue. How many times do we read about incidents involving drunken passengers, conditions increased by airline looking for profit by selling drink? So, should we ban selling drinks on airplanes?
Look in a mirror and think about what your life will be like if you develop a medical condition. Do you have an "end game" plan so as not to bother greater society? Perhaps you might consider pre-emptive action.
The story begins with a reference to a family who was "kicked off" because the autistic daughter refused ("wasn't able") to buckle up. She DIDN'T buckle up; it's not that she COULDN'T. There's a distinction. Disability activists agitated for EQUAL access. They didn't agitate for BETTER access than others, or exemption from normal rules. Don't wanna/"can't" wear a seatbelt, for WHATEVER reason ("She's autistic and doesn't understand, etc.")? You don't get to fly. Flying isn't some constitutional right, and the disability laws specifically state that flying isn't considered an activity required for normal functioning. If your autistic "refuses" to buckle up or follow the rules, they can't and shouldn't fly. As long as they refuse to follow instructions by caregivers, their lives will necessarily be circumscribed.
Words to live by for the parents of special needs children of any stripe. It's not always possible. However, if it is a voluntary situation where it is actively unsafe for my child to participate, or that he cannot cope with what is needed to participate safely, it IS necessary to have backup plans. Or to sensibly choose not to undergo that level of stress on him, myself, and everyone around him. Flying is a voluntary situation.
My family will not be flying again for the foreseeable future.