Saturday, August 27, 2011

Autism and Airlines: How Can Airlines Make Travel Easier?

Now that we're done getting ready for the impending arrival of Hurricane Irene, I'm catching up some blogging that didn't happen this week. We had to lay in some provisions – bottled water, some food, flash lights, sheet plastic and gaffer's tape. And we had to move our garden off the fire escape.  And we had to recharge everything that has batteries. And now I guess we're about as set as we can be and I can get back to things that were meant to happen Thursday, including blogging about the rest of our experience with Virgin America.

You might have read about our awful experience with Virgin America last week.  Once we were back in New York their customer service department contacted us, expressed their apologies, and credited us for the cost of our flight.

But they did something even more important than that.

They asked us how their airline could make traveling for people on the spectrum and their families easier.

I said that I had my own ideas, but that the spectrum is broad and that we should hear from adults on the spectrum as well as parents.  So I said I would post their question to the autism and nuerodiversity community.

What would you like airlines to do to make your travel with them easier?

Please post your comments and @virginamerica will use your suggestions in upcoming employee training.  Thanks, everyone.

18 comments:

Anonymous said...

Don't make people come to the airport two hours early to get assigned disability friendly seating. Assign seating when customer's call in.

Have staff read some blogs or books by folks on the spectrum -- or see films on the about the spectrum as part of training.

Emphasize the some disabilities are completely invisible -- until they aren't, that is, until the person with the disability "loses it." Examples: anxiety disorder, ASD, Tourette's, bipolar disorder, seizure disorders.

Don't push people over the edge. Be cool and helpful when you see someone is anxious. Note: anxiety often presents as irritability and rigidity.

Michele Tivey said...

Thanks for asking (part 1 of 4)
Below is my letter to Jet Blue at the request of their COO who has yet to discuss this with me as he promised. Kudos to Virgin America for asking the question. I pray they truly listen to the answer.
Dear Jet Blue,
After several comments from me on Twitter, you invited me to explain to you once again, this time in an email, what my experience has been traveling with my son on your airline. There is now about 30 days time and distance since our last trip, but the heartache is no less present.

My concern is that this email will leave you unmoved, and perhaps that is why I hesitated to write it. Talking about your child's disability and their needs is very difficult for a mother to do, especially to a "non-person" stranger who has already demonstrated nothing but indifference to my pleas.

But because I truly wish to make a difference for your airline and for other families, I will try it one more time.

This is not about my son, and I do not wish for him to gain more attention because of what has happened to him at the hands of your employees. He already gets plenty of attention in the form of staring, disapproving head shaking, eye rolling and rude comments. But he is a brave and brilliant little boy. And if he were able to understand that he might help other kids like him, he would want to be involved, too.

First, you should know that I am a former attorney, and I practiced law for 15 years before I became a mother. During that time, I also worked as a political consultant and ran campaigns for national candidates from Governors to Congressmen. I worked for two Presidential campaigns, in 2000 and in 2008. I have worked at the White House, for President George H.W. Bush. I have both the ability and the connections to make lots of noise about Jet Blue. Nothing would make me happier than to do what my son really needs, which is to fly private jets for the rest of his life.

But I choose to try to change how you see people with Autism. Then to convince you to change the way in which you train your personnel. And finally, to help you make even MORE money as a result of it. Because even if my son were able to fly privately, millions of others will never have that ability. And we ALL deserve dignity, respect, and assistance.

Autism strikes 1 in every 110 families in this country every year. That is a Federal number, recognized by the Center for Disease Control and represents more children than are diagnosed with heart defects and diabetes and cancer COMBINED each year. The real actual true number is really much greater, more like 1 in every 70 families. That means on a full plane, you DEFINITELY HAVE somebody on board who is touched by Autism. Either a passenger themselves afflicted, or a parent, grandparent or sibling. You do nothing to cater to this enormous market. Nor does any other airline. Yet.

Michele Tivey said...

Thanks for asking (part 2 of 4)
Autism is called a "spectrum disorder" and that is because no two children with autism look exactly the same. Some are completely non-verbal and rock back and forth in place while looking off into the distance and humming to themselves. (all of those activities are to quell the barrage of sensory PAIN they are feeling because their brain does not process light, sound, motion and touch in the same way that yours and mine does.) When you see a child like that, they are actually feeling physical discomfort because of the world around them, but they are unable to communicate that pain through speech, because their brain also fails to process language. Yet inside there, the most likely can understand everything they are hearing. Some have even been known to have a grasp of complex languages like Hebrew and be able to perform high level cognitive functions like calculus. If they can ever stop rocking and spinning and humming.

But in a sense, those children have an advantage over the children with Autism who are known as "high functioning." Because if that child I just described approached your counter with his parents and said they needed assistance getting through security and boarding, you would not think twice about assigning an assist for them. You can SEE that child's disability.

My son, and millions like him, appear to the outside world to be "normal" children. That means, to your untrained eye, they are just like every other kid getting onto a plane. But they FEEL THE SAME THINGS that the lower functioning children with Autism feel. They just express it differently.

The fluorescent lights in your airport are very painful to my son, so he often keeps his eyes shut very tight while he is in the terminal. Or sometimes he wears his stuffed animal on top of his head to block out the light.

He can speak, and in fact has been tested to have a very high IQ in the gifted range, so you may see him sitting in a stroller and hear him talking like a much older child than his 4 years. What you could not know is that he is reciting things he has memorized from television and books ("why, Mommy, that is a SPLENDID idea!" or "Sesame Street has been brought to you today in conjunction with a grant from the Children's Television Workshop").

You do also not realize that he is in that stroller (which is far too small for him) next to his baby sister because he has a very common disorder within autism known as "bolting" or "wandering." When in an unfamiliar place for reasons we do not know, he will take off, usually running, and could get lost or hurt or worse. Keeping him with us is the only way to keep him straight.

Michele Tivey said...

Thanks for Asking (part 3 of 4)
He also has extreme anxiety about anything new. We spend weeks preparing him for an airplane ride. We take pictures of the airport from curb to airline seat. Let me say that again. We take pictures of everything from curbside to seat so that we can prepare him for the flight and allay his anxiety. We explain in great detail, everything we are going to do, down to the most minute detail. Still if we walk into the airport terminal and we proceed to the right, and he feels more comfortable going to the left, he could start to yell and scream and cry. His anxiety is so extreme that he is most comfortable alone, and usually avoids other people, even other children. The unpredictability of a stranger's touch will cause him to flinch if you go to shake his hand or pat his head.

So ripping him out of his stroller,

yanking off his shoes,

robbing him of that stuffed animal that he has on his head to keep out the light,

and the binky attached to it that he seems way too old to have,

forcing him to walk through a magnetometer toward a complete stranger who is going to TOUCH him,

all very quickly while a large group of people are hovering behind in front and to the sides of him ...

is almost criminal for me, as a mother, to do to him.

And as a result, most families with Autism might not travel. And in fact, we do not travel often. But this was an opportunity to go to Disney World. (where, FYI, children with Autism are treated like the kings and queens of the place, and given every accommodation and benefit of the doubt. It is not only the happiest place on Earth, but also the one place in the world where children with disabilities are treated like PREFERRED guests, and not like nuisances.)

So, to you, there is a precocious little boy being spoiled by his parents who let him ride in a double stroller despite his size, we allow him to wear a stuffed animal over his head and suck on a binky, and scream and cry and carry on because we are indulgent parents and our little boy is poorly behaved.

So, as I approach your counter,

(1) with my handicapped parking placard that I needed medical documentation of his disability to obtain from the State DMV, and

(2)with a special sticker on the stroller that says "Stroller to be Used as a Wheelchair," and

(3) I have made a notation on my reservation that we are flying with a child who has a disability, and when

(4) I have made a call prior to the flight once the seats in the front of the plane were released and we are sitting in row 6 because of that disability and

(5) I have had the concierge from my 5 star hotel make a special call and have specific instructions that say I am to have a "Meet and Assist" from curb to seat and

Still

Nobody

Cares

you can see how I could be frustrated, disheartened and angry as hell.

Michele Tivey said...

Thanks for Asking part (4 of 4)
In early December of 2010, my parents took 18 of us to Disney World. All flights were booked together, on Jet Blue. My mother, who is in a wheel chair was with us, as was my son. All of the preparation and special accommodations I described were made. It was a busy travel day and Westchester County Airport was very crowded. Despite my having approached him to explain the size of our party, the number of children under age 10 (which was 8) the mother who could not walk in the wheelchair and the child with autism, we were not allowed to pre-board. Instead, your "more leg room" customers were called "along with anybody who needs a little extra time to pre-board or passengers traveling with children."
Of course, everybody surged toward the gate at once, and we got lost in the shuffle. Our party was separated. My husband and I were pushing the double stroller, carrying our youngest girl's car seat in a backpack harness, holding a carry-on bag of snacks and crayons and diapers. Waiting in the small space with people pushing started TJ's anxiety (it was of course, not what we had prepared him for) and by the time we got to the door of the airplane, he refused to get on the plane. He was screaming, and crying, lying on the floor blocking the door. This inconvenienced the entire flight. It NEVER needed to happen.
During this terrible experience, a fellow passenger got into my face and gave me a good talking to about how I should learn to control my child, and that "the entire airport was sick and tired of my over-parenting." TJ needed to be carried to his seat. I took the car seat harness, the carry on bag, and the 16 month old, folded the stroller, and brought my daughter onto the plane while my husband carried a screaming crying TJ back to the 26th row. All of this while the other 120 passengers were unnecessarily bothered. I reached my seat and burst into tears. What my boy had to be put through. I could have prevented it by staying home.

We have had to drastically change our lifestyle to allow for payment of TJ's therapies, such as Occupational Therapy, Physical Therapy, Speech Therapy, ABA Behavioral Therapy, Vision Therapy, Aqua Therapy and Cranial Sacral Therapy. We are moving to a town with better school services, and our house in Connecticut is on the market while we rent an apartment in that town so he can have the best possible services and schooling. We sold an investment property in Florida to pay for these additional medical needs.

On April 2, 2011, ironically "Autism Awareness Day," at the beginning of Autism Awareness Month, we traveled from JFK to Tampa to close on the sale of our winter home. Our customary preparations were made. When we approached a Jet Blue representative and asked for assistance to the gate, TWO different people looked at us, looked at the stroller, ignored my handicapped placard I showed them, ignored that I said my son had autism and I had called ahead, ignored the sticker that said we use our stroller as a wheelchair, looked back at us and asked, "What is the problem?"

Michele Tivey said...

Thanks for asking (part 5)
During that TSA adventure, TJ's meltdown happened when had to get out of the stroller because we were being yelled at: "You cannot let him hold up the line" and we removed his stuffed animal and binky from him at the beginning of the process rather than at the last possible minute. One TSA person actually STEPPED OVER MY SON as he lay face down on the floor crying. My husband was caught back behind the glass divider, I was through the magnetometer with Cecelia (now 19 months old) and they WOULD NOT LET ME BACK THROUGH TO GET TJ. So there he lay, crying, screaming, and covering his face, frightened, alone and in pain.

We boarded that plane with all the other pre boarders, instead of one step ahead as I had requested. The gate agent did the same up-and-down look at my stroller, the same indifference to my explanation, and the same disregard of my handicapped placard and stroller sticker. Your Extra Leg Room travelers actually walked around us to board as we struggled to get TJ out of the stroller and onto the plane this time.

We asked our concierge at the Waldorf Astoria in Orlando to assist us for the flight home. He made some calls and we reached a live person who was horrified at my storied. She told me NOT to check in prior to arrival. She said she would put on the reservation that we were to have a Meet and Assist at the curb and we were to check in curbside.

Michele Tivey said...

Thanks for asking (part 6)
When we arrived, we found that your contracted company doing curbside check in had no access to the Jet Blue system, and any record on our reservation was unseen by them. They were RUDE, and ignored everything I said and begged for, this time with tears in my own eyes. They had nobody available to assist us, they said. So, we went inside to the counter, waited online while TJ screamed and cried and covered his face. This time, Jet Blue counter workers, two of whom were standing around talking to each other, were the ones staring at us. Nobody asked if they could help. I stood on line and my family stood off to the side, my husband trying to comfort my son. Finally, from back near the ropes I couldn't take it one more minute. "I NEED A SUPERVISOR PLEASE!! IS THERE A FLOOR SUPERVISOR HERE?" I shouted from my place, worried that I might be escorted from the airport by the Feds for causing a scene. A Jet Blue person shouted back, "What’s the problem?" "THAT IS THE PROBLEM," I yelled, louder now, pointing at my son, "YOU ARE CAUSING THAT BY JUST STANDING THERE. I WAS PROMISED A MEET AND ASSIST. I NEED A MEET AND ASSIST AND I NEED IT NOW."

Finally, I was called over to the counter. I went through the entire thing yet again. Showed my documentation, explained the autism, showed the placard, and they ostensibly found the note made on my reservation by the woman contacted by the Waldorf Concierge. I was crying now, tears streaming down my face. Seeing my son the same way, and swearing I would never do this to him again. At least they were helping now. The same look. To my screaming son in the stroller and then to me.

WRONG. No Meet and Assist to the gate. No assist at all. They were too busy, the woman who had been chatting with another employee told me, despite the fact that there was no line at the counter, no people snaking through the ropes at all. She did not have the bodies to send somebody with me. She called the curbside people. Their supervisor came over. He had remembered me from a few minutes ago when I insisted that I was supposed to have an escort all the way to the boarding phase per the woman my concierge had spoken with. He told me again: NO Meet and Assist. He pointed off to the far side of the terminal where a man was pushing an older gentleman in a wheelchair that was followed by two adults. "He is taking that wheel chair person now, you can follow them."

So, we followed them. No assistance. The guy pushing the wheelchair never even turned back to look at us once. When we reached TSA's wheelchair line, he pushed his wheelchair around the line of people, and disappeared. We waited and went through it all again.

Michele Tivey said...

Thanks for Asking (FINAL part)
And so, I want you to know how ANGRY I am.

I am ANGRY that my son has Autism.

I am ANGRY that something my husband and I love to do, travel, is probably closed to us, at least on your airline.

I am ANGRY that your COO is a jerk who actually thinks people follow him on Twitter because he is important and not because it is a way to get him information directly, which he ignores.

I am ANGRY that despite all of this information, and everything I have said in this letter, nothing will change.

And I am ANGRY to tell you this:

Despite the huge market share of families affected by Autism, no airline has stepped up to take the mantle and say we will treat you properly. Your airline, should you do this, would gain publicity and more revenue, and all that would be needed is an Autism Ambassador named by your company to train employees, handle passenger concerns pre-flight and complaints post-flight. With very few changes, you would reinstate that thing your Brand used to have ... compassion for your passengers.

Autism is marked by a light blue puzzle piece or ribbon; ironically you were made for each other.

I hope to never need to fly your airline again, but more than that I hope that the passenger with Autism who is boarding a flight at this very minute is not suffering the indignity of passed judgment by ignorant Jet Blue employees who are deciding that the person who walked to the counter and sat in a wheelchair with no questions asked should get an escort all the way to the airplane door, while the little boy with the stuffed animal over his eyes is not important enough to help.

Very Truly Yours,
Michele Tivey
PS - we have made three trans-continental business trips since this letter, none on Jet Blue. We are scheduled to fly JFK-LAS on Virgin America for business in September. Our son will not be with us.

MothersVox said...

Dear Michele,

*Thank you* for this set of comments.

Your story have left me with heart pounding and eyes filled with tears. I am so sorry that this happened to you and your son and your husband and your mother on Jet Blue. Sorry and angry. You deserve better. We all do.

You are right that no airline has stepped up to deal with creating an autism-accommodating flying experience. Hopefully airlines will see this as an opportunity to serve their customers and improve their bottom line rather than continuing to treat our kids and ourselves as nuisances. It seems that Virgin America may see it that way, though the proof will be in the implementation.

What you wrote about Disneyland rings true for us. Disneyland and Legoland are the two places where our daughter has received reasonable accommodation. And had fun. Sometimes other park guests would stare and point at us when we got to enter rides without long waits because invisible disabilities are hard to explain. You explain it well. We need to expand the campaign to raise awareness of invisible disabilities.

Your story about the TSA is my worst nightmare. Once, on our way back from a summer trip, we had a change of plane (now we try to fly non-stop unless there is no other option).

At the change of plane in Miami, they decided that our family was the one that should have the special security check: unpack bags, take off shoes (this was before the shoe bomber, when shoe-stripping became routine), and pat down if indicated by anything else.

Our girl was about 7 years old. The TSA person would not let me take off her shoes. She wanted to take them off. I was flashing back to an neurologists appointment where a thoughtless doctor pulled her shoes off and ignited a 90 minute episode. I implored the TSA person to let me take off her shoes. She said no. And then she took off our girl's shoes, and amazingly, our girl was fine with it.

That is one of the things that is so difficult. Not only is this a spectrum among people, but reactions also vary widely within people.

And you're right about the private jet. I know many autism families who can't fly at all because their kids could just not take the stimulus of the airport and the airline. I want them to have the opportunity to travel, too.

And finally, we did picture training with my daughter for the airport when she was younger. I think it helped. Now she is pretty good with the airport unless they confiscate her food at the TSA, in which case it is a disaster because she won't eat any airport or airline food. After a long flight when she's hungry, she can completely lose it. Now we do just about anything to get her food through the TSA checkpoints.

So I guess what autism families need is

1) a meeting with the head of the TSA about accommodations for folks on the spectrum and their families
2) airlines to step up and deal with neuro-diversity and do the same -- set up accommodations for folks on the spectrum.

This is a civil rights issue because our kids and our families and our kids when they are adults have the right to be in public places and to travel as any one else would.

Thank you again.

heather81 said...

I recently flew with my 4 year old Son who also has Autism. We flew Delta. We called ahead to get our specail seating in order. and were told to call several days before we were supposed to fly home to get our seating again. Well I did and was told by a women on the phone there was nothing she could do we had to speak with the perosn at the gate. flight one not a problem. The only issue on the first flight was that they at first told us we could not use the car seat I explained to the women we used it on the way down with not problem and that my son needs it. Not for saftey reason more for a comfort measure. Its something that he is used to at home and he knows when he sits in it he is going some where. Fianlly after 15 minutes of my son screaming they let us use it but it did not fit in our seats so we had to swap seats with people and then we were off. The 2nd flight they had us all in different rows and could not get us all sitting together. I was rather upset. So after 15 minutes he was able to sit 2 of us together but not all three. But thankfully some one swaped with us. Its rather frustrating to have to go to all the security my son does not like to ahve his shoes off and being touched sets him off as well. I think they all need a little more training. I feel like becuase these kids look like your average kids that people dont take it seriously. Which is upsetting and frustrating to me. I dont think that my son should miss out on these things becuase of his Autism. I refuse to let this happen. I think the airlines need to chagen and fast before they end up with a law suit

Anonymous said...

The issue seems to be twofold:

1. TSA seems to have no concept of dealing with kids or adults on the spectrum. We were fortunate that we didn't have issues going through security - it could have gone so very wrong.

2. The service you get from the airlines seems to be solely dependent on who you talk to - it's luck of the draw. It took 3 separate calls to Delta before we got a customer service agent who would reassign our seats so that my husband and I could sit together with our 3 year old.

We were fortunate. But we realize we might not be so lucky next time. And that's the problem. I was armed with a letter from my son's doctor, but I was not naive enough to think that would necessarily help after hearing horror stories about people's TSA experiences. But I figured it was better than nothing.

I think that you should get your seats assigned (together) by the airline the first time you notify them that you are traveling with someone with special needs. I'd also like to see TSA "officially" allowed to exercise a level of discretion in dealing with folks with special needs.

Any airline who is going to suggest that they are "friendly" towards travelers on the autism spectrum need to have something in place with TSA to ensure that's truly the case.

Rethink Kent said...

I'm really so sorry to hear all of your stories about traveling our insensitive airlines- you really would think that the sheer number of families affected by ASD and similar disorders would cause them to put in place simple policies that wouldn't take more than a day of training and could potentially avoid bad press, law suits, and the loss of customers.

But there are rays of hope- airports and airlines are conducting mock flights for first time flyers: http://articles.philly.com/2010-11-16/business/24952763_1_flight-attendants-autistic-children-autism and there are more and more autism friendly vacation packages being offered every year-

I think its these kinds of incidents that are going to lead companies to step up to the plate and listen to their customers, so I applaud these efforts and I hope that companies can learn from their mistakes.

If anyone wants to share other travel stories or information- or need additional resources, stop by our facebook page & say hello! We believe in supporting all kinds of awareness and progress in the autism community. :)

MothersVox said...

Hello Anonymous! Thanks for your comment. You are right that there are separate issues here:

1) getting the TSA to provide respectful reasonable accommodations for persons on the spectrum and their families, and

2) getting airlines to also comeup with and implement respectful reasonable accommodations.

These need to happen in tandem for their to be any improvement for people on the spectrum who are traveling, because once you've been triggered at the security gate by being "patted down" (gropping really does seem more accurate), then it's hard to settle down for the rest of the flight.

An interesting thing happened to my husband and daughter when they were flying out to the west coast on American (I was already there and they were meeting me.)

When my husband showed up at the counter with a note about our daughter, he was escorted by an American agent through the 1st class TSA security checkpoint. When they got to California I was amazed because she got to keep all of her food, icepacks, and even a full-size bottle of acne OTC medicine. It's like they barely even checked them.

But once again, it was the luck of the draw to have that kind of very thoughtful accommodation.

We will keep working on this and listening to people's ideas. Maybe Michele Tivey and I could pull it together and take it to the airline industry association. I assume there is one.

Michele Tivey said...

I am grateful for all of the posts here, and I apologize for my VERY LONG story.
I especially appreciate the comments that have summarized what we need to do moving forward.
I disagree with your view that we should meet with the TSA. Not because I believe that it is a bad idea, its a GREAT idea. But because I believe that they do not care and I am not entirely sure that they should. Don't get me wrong, I want everybody to be treated with respect by the TSA, but especially with the 10th anniversary of 9/11 upon us, security is and will most likely remain their first and only concern. I put nothing past the people who brought down our World Trade Center towers, even using a child to trick security.
But I do believe that my preferred solution would work. Airlines should provide a "meet and assist" for all children with autism who board an aircraft. That meet and assist should have a SPECIAL CARD that is flashed to TSA agents, allowing parents to be present and assist with the child's screening. The meet and assist person should not leave the child until advance boarding (ie. PRE pre-boarding) is complete and the child and family are safely in their seats. As I said in my long post, a wheelchair gets that treatment. Our kids, because they travel in their own stroller as my son does, or on their own two legs, are seen as somehow "less disabled" than any Tom or Jane who requests a wheelchair but can otherwise walk themselves perfectly fine most of the time. Second, Airlines should have an "Autism Ambassador" who provides training to staff and is on site at all times to assist families traveling through crowded, sensory nightmare airports. Lastly, airline websites should ask you when booking if you are traveling with a child on the Spectrum, and the information should appear on your ticket so that passengers can be assured the same quality of service regardless of location or education level of agents.
It is really just THAT SIMPLE. They can do it, and they will. Or I will throw a major tantrum myself! =) Hugs to all of you!!

MothersVox said...

@Michele Tivey I love your idea of an autism ambassador. It could be very helpful for some families. At this point my own family probably wouldn't need that sort of intensive support, but the
the idea of having seating done at the time the tickets are booked and the tickets marked with a designation is also great. . . not necessarily just autism, but other invisible disabilities like Tourette's . . . could be indicated.

For my part, I think the TSA, like other security forces (police, sheriffs, etc), need training on neurological diversity. It should be mandatory. People who have acute tactile aversiveness should not have to got through a pat down. They have enough technology to assess any risk significant risk without frisking people, especially kids, on the spectrum.

Love all these ideas you've had. Now - how to make it happen?

Long Island School for the Gifted said...

Thanks a lot for sharing your thoughts with us, its amazing to read your informative stuff and we hope to know more from you.

autistic globetrotting said...

We are a family of four from Califoria that has been traveling every other month nationally as well as internationally with our two autistic kids.You might want to readour blog with advice and tips on how we did it.Our website is www.autisticglobetrotting.com I do understand that other passengers have encountered problens and I would love to get some of you on board with constructive ideas.Feel free to contact me via Twitter ,Facebook or the web site as I believe making certain changes could improve the travel life of many.

Russell Hornig-Rohan said...

I found the article interesting because boys who are on the autism spectrum usually have a stronger tendency to raise their hands in class at inappropriate times than girls do. I also found the article interesting because girls can sometimes raise their hands in class at inappropriate times but to a lesser degree. The Paddle for Autism Awareness is taking place on Saturday August 4th from 9:00 A.M. to 4:00 P.M. at Valentino Park in Red Hook, Brooklyn.