Traveling with Autism is getting harder, not easier. Why?

Traveling with Autism is getting harder, not easier. Why?

Dear Phoenix,

It is not uncommon to see public spaces with accommodations of various types.  Restaurants have high chairs for little ones who can’t reach the tables quite yet.  Shopping malls have strollers for children and wheelchairs for elderly who find it difficult to walk the entire mall.  Even in states with public smoking restrictions, many of these places still have smoking areas.  The Atlanta airport has smoking lounges.

Yet when it comes to disability accommodations are becoming harder to get than they were 5 years ago.  How did that happen?

Today, I am at home in deep compression, following travel.  It shouldn’t have to happen this way.  I had to abort a work day too. Not good when you need to pay bills.

Airports and airplanes are overstimulating, even if you love to travel as I do.  True, the tight spaces and noises in the airport itself are part of the issue, but those are just the obvious ones.

  1. People on Domestic US flights are, as a whole, unhappy travelers.  People get upset about everything from security backups, changing rules, long lines to board, and limited overhead space for luggage.  This means most people are vibrating with negative energy, and putting off stress hormone odors. As an Autistic person, I can smell every one of them as they step on the plane, and feel their negativity make my spine sting.  It makes my teeth hurt, and my skin sensitive.  I am in pain, but to everyone around me I just appear quiet and disciplined.
  2. Planes are noisy.  Engines aren’t the only things that make sensory overloading noises.  Shoes walking on the asiles, luggage being loaded, the fans to circulate air, jewlery clanking, people eating food, opening plastic bags, drinking, coughing, sneezing, mobile phones ringing, and that awful sound of the seat belts latching, just to name a few.
  3. Planes smell like portable toilets to me.  When I board, I can smell the previous passengers.  I smell their perfumes, their stress hormones, food they ate, foot odor, and breath circulating through the airplanes air system.  If I am made to stit near the washroom on the plane, I can smell if it has been used at all that day, and the chemical agent used to clean it.  When they refuel the plane, my mouth starts to taste like I am eating copper.
  4. People refuse to follow simple rules about where to put their baggage.  Sorry, but that bothers me.  People cram jackets and shopping bags in the overheads taking up precious space.  They also jam things violently when something blocks their suitcase, which is often my violin case.  I had to purchase a tougher case to protect it.  I am bothered even more by people taking exit row seats that are not really capable of helping in an emergency.  On a recent flight, the attendant allowed a woman with a fresh knee injury (they gave her a bag of ice for it) to sit on the exit row while denying a 6 ft 8 inch man the seat. This woman had to hop down the aisle holding onto the seats.  She could not walk without help.

With all of this going on, my nose and mouth become numb, and my speech retreats.  People I travel with often complain that I am too quiet to be heard even though I think I am speaking loudly.  Sometimes, I just can’t talk at all.  So you can imagine how hard it is when I have to explain to 4 different people between the counter and the gate why I get priority boarding.

On a recent trip with Delta, I had to take 3 flights to get to my destination.  On one flight, I was flying with my son from Buffalo to Atlanta and back.  We both have an official on-paper diagnosis, which I carry with me.

When I booked my flight online, I filled out the form for disability assistance, requesting priority boarding and assistance through security for my son.  He has only traveled twice and still needs a little support with the confusion of security. (Last time he left his suit case unattended, and this time he forgot to take off his shoes).  Delta then called and left a message.  The message was impossible for me to understand.  Not one word.  The only reason I knew it was Delta that called was because they followed up with an email to say they couldn’t reach me but left a message.  There was no option to text, email, or chat via typing.  Only a phone call.  So, I decided to do it the old fashioned way and visit the counter at the airport.

At the Delta counter in Buffalo, I stated as I always had, “My son and I are on the Autism Spectrum.  We would like assistance with this flight.”  When she asked what kind of assistance, I answered, “we request priority boarding and assistance for my son through security.”   She then asked me a bunch a questions I was not used to hearing, and even dismissed assistance through security because I was with him.

We stood in the regular security line and I scrambled to help my son.  He gets panicked in security, which draws attention to him.  Once he takes off his belt, his pants will no longer stay on unless he holds them, which also troubles the TSA.  He ended up getting a pat down.

Once through security, we were stopped at nearly every gate and told we could only get priority boarding if we were in a wheelchair.  I had to show on my ticket where it said “assistance requested”. and explain why.  On our return flight home from Atlanta, the hub of Delta where I KNOW they have received plenty of advice by their disability advisory board, I was told I would not be allowed priority boarding based on disability because my paperwork was more than a year old.  A diagnosis must be written within a year in order to be, and I quote, “compliant with the law.”  She finished by saying, “We can’t just give everyone priority boarding.”

It took a very stressful conversation, but she finally allowed us the status.  I was told no one was available to assist Jacob with security.  So, I approached the disability assistance line and the TSA allowed us in that line.  This time I got the pat down, with no warning they were going to touch me.

We weren’t questioned at the gate this time, but they did allow first class passengers to shove their way in front of us needing assistance during the pre-boarding process, totally destroying the whole point of getting on the plane before the masses.

I didn’t meltdown, so no one will be able to post a picture of them helping me calm down.  Instead I held it together, appearing only timid or tired to others.  What they don’t know is that the day after travel is when I get attacked by you, Phoenix.  Montezuma takes his revenge on my system, my ears ring, my teeth hurt, my nose remains numb, and I get sleepy and disconnected.  Today, instead of cleaning my apartment and working as I once was able to do after travel, I am wrapped tightly in covers trying to ease the nerve pain.  I even had to leave an appointment today because I was starting to melt down in public.  My vision pulsates, and everything looks like there are transparent creatures running through my world.  I get jumpy, confused, and sometimes forget where I am.

Thankfully, Lyft can be called using an app, so I was able to avoid the long, noisy bus ride home.  Total meltdown avoided.  Ten more minutes, and I would have been stuck in public places for a few hours.

Why is this still an issue?  Is it really so bad that someone with Autism, even if you can’t see it, gets to board a plane first?  You think that isn’t fair?  I pre-pay to check my bag to make my trip less stressful, and then watch dozens of people get free checked bags when there isn’t enough room on the plane for bags, mostly due to people carrying on more than allowed and stowing it where they are not supposed to.  That means I pay for what others get for free, yet I don’t expect a free checked bag.  Besides, you chose what to pack for a trip.  I did not chose to have Autism.

Airline travel is not great for anyone, but people with Autism feel that flight for days after.  If I could get priority boarding stamped on my ticket at the counter, and board unquestioned to my destination, like I once could (or still do with Southwest), I can actually function the next day.  That few minutes of quiet settling in, placing on my headphones, and adjusting to the smells gradually, can make or break a trip.  5 minutes.  Can’t everyone spare 5 minutes?

I have another flight with my son on Delta to San Diego in September to speak at the Love and Autism Conference.  I do hope they can redeem themselves.  Otherwise they are ignoring the work of the 15 advisors working hard for people with disabilities.

Hopefully better things to write tomorrow, Phoenix.

Love,

Laura (snamuh)

Stone Shadow

Join me as I debut my new shadow song, Stone Shadow.  In honor of Autism Awareness Month, I will perform on my violin along with Allana Rain on:


Nancy Grace
Monday, April 22, 2013
8:00 pm EDT
 
 
If you enjoy the song, you can help me make more.  Using Indiegogo, a fundraising website, I am raising funds to travel with a crew to 4 major US cities in order to experience new shadow songs.  I am calling this adventure, A Song A City.
 
Beginning in Atlanta, we will visit Boston, New York City, Denver, and Los Angeles.  As we visit each city for a minimum of 3 days, I will compose songs for each city, and along the way, my crew of two will broadcast a web series of my trip so you can follow along.  Ending in Los Angeles  I would release the A Song A City album of all the songs I compose on the trip.  Donors at the Platinum level would also get to enjoy exclusive behind the scenes material, and even a chat session via Skype!
 
So many wonderful new things can be born in the next few months.  Please tune in to Nancy Grace and hear us play.  Then, follow up with a visit to Indiegogo and make a contribution.
 
 
Thank you for your support!  I have amazing fans!!
 
Laura

The Wasp and the Wind

There is this little spot where the wind always whispers to me when I am in most need of wisdom.  Not far from my home, on the southwest summit of Stone Mountain, I find comfort in sitting upon a rock under a gathering of strangely dwarfed pine trees.  The view is spectacular, especially at sunset when the warm orange hughes dust over the clouds leaving the Atlanta city skyline as nothing more than a gray silhouette. It is no wonder I am so inspired by the wind there.
 
One afternoon I ventured to my little spot to enjoy the warmth of the midday sun.  Tired from the climb, I placed my backpack upon the ground, sat facing into the wind and sipped water from my travel bottle.  I thought it odd when my eye caught a wasp walking towards my bag.  He delicately trembled when he walked stopping every few steps as if to catch his breath.  As he crawled onto my bag, I began to panic.  I did not want to be stung by this wasp especially since I was allergic to his sting.  My seemingly rational fear swarmed through my mind, causing me to jump up and pace around my bag.  How was I to get this wasp off my bag so I could concentrate on the wind?
 
My fear turned to vigilance as I cooked up little schemes for getting the wasp off of my bag.  I tried tipping the bag over so he was forced to fly away but he did not respond to my initial light tap.  So, I increased the intensity of each bag tipping incrementally until I was finally forced to pick up the bag and shake it with short violent thrusts .  My boldness was alarming, especially since I was so afraid of the wasp.  Yet this wasp was unfazed.
 
I sat back down, nearer the bag than before, puzzled and perturbed.  Why won’t this annoying wasp leave me be?  Why would he not respond to my nearly violent bag shoving and pacing about?  A moment passed and I was then struck by the thought, what if he could no longer fly?  I had never thought that a wasp could become ill or lose the ability to fly even though it is an inescapable truth that all things die.  My fear of this little creature had not only made wasps angry and aggressive, but also immortal.  
 
A calm warmed over neck and shoulders like being wrapped in a fleece blanket.  I was no longer afraid of the wasp.  I sat quietly and watched as this little wasp, never wavering in his courage, wobbled up to the southwest summit of my backpack.  Upon reaching the top, he reared up and lifted his arms into the wind.  A tremor ran through his body as he struggled to move his wings.  Strain after strain, tremor after tremor; for nearly twenty minutes, this little wasp struggled to take flight.  Breathless, he wilted, only to give himself up to ultimate failure.  How was it that something with such an angry sting now garnered every ounce of my empathy? 
 
This day on my sitting rock beneath the tress I did not hear the wind whisper.  Instead, with a roar, the wind screamed into my mind that despite it’s ugly sting, life offers us these unexpected little moments to be courageous, empathetic and free all at once.  Sometimes, we are so disturbed by what we are taught is beauty that we wither into to a blindness by fear and a deafness by our selfish internal murmurs.  Although I cannot promise that I won’t continue to panic when I am confronted by a wasp, at least now I know I am only afraid of the pain of the sting and not the stinger.  Maybe this is why no matter how deeply we are pained by the sting of loss, disappointment and failure, we cannot fear moments to be courageous, empathetic and free.
 
Laura Nadine