John learned to love planes, sort of.
By Sue Swezey
As summer approaches, autism families may wonder how to make travel as pleasant as possible—or how to survive it. Here are some suggestions, drawn from the experience of John, age 54, who has flown annually since infancy and has been through good trips and bad. The key to success is thorough preparation. It also helps to have realistic expectations, unlimited stamina, nerves of steel, superhuman patience, and when all else fails, a sense of humor—qualities that autism families possess in abundance. A resource is listed at the end. Bon voyage!
Travel, and welcome to it! How we survived travel with autism and learned to enjoy it
Fear of flying
If you traveled with John in the early days, you'd remember him. He was the Screaming Baby in a seat near you. He was the adorable toddler, carried on board asleep in his mother's arms, who bolted awake on the plane and howled for the next five hours. He was the cute 9-year-old (not yet toilet trained), who left a damp seat encrusted with Froot Loops—this in the era when planes were routinely hijacked to Cuba and you had to bring extra food, just in case.
In the years before deregulation, we often hastily changed airlines for the return flight so no one would remember us from the outbound. In short, travel was a total nightmare, but with us in San Francisco and our family in Chicago, we did plenty of it. ABA hadn’t been invented yet, so we were winging it, literally.
Love of flying
All this changed when John was 10. For the first time in his life he was exposed to special ed, and the transformation was miraculous. By summer vacation, he had learned to talk (a little), read at 2nd grade level and write almost legibly. He was happy about everything, including flight.
We wrote social stories about flying. We rehearsed in chairs tilting backwards for takeoff and forwards for landing. We made noises like airplanes. We bought beginner books about flying, which John studied over and over. He became the world's most enthusiastic traveler. When he was in his teens, he got his first computer, learned keyboarding, and wrote long stories (always identical) about plane flights. These were not literary fare for airplane magazines but more like lists of every detail he remembered, including bumps in the road on the way to the airport. He collected these in a secret box, which he presented to us when it was full—apparently in anticipation of having “earned” a flight.
John also became a huge fan of United Mileage Plus. He collected Mileage Plus memorabilia. When my husband and I began to receive late notices for our Mileage Plus VISA bills, we were puzzled—until we discovered that John lifted the bills as soon as they arrived and stashed them in a hidden Mileage Plus box. He seemed to think that the more items he collected, the more likely it was that he'd take another trip.
Flights themselves became a treat, even for our long-suffering daughter who accompanied us. John especially loved takeoffs, which delivered an unsurpassed vestibular jolt. He loved to take maps and look at “United States of America on the ground.” He even loved O’Hare, a claim few travelers can make. We took him on business trips and Hawaii vacations, and after my husband retired, we let him pick a destination for a yearly outing (with somewhat limited choices, such as ruling out Frankfurt in favor of Portland).
We developed coping skills. When flights were late or luggage delayed, we wrote social stories; if we wrote that the plane was late but would leave at 3:30, he believed us. Then we would pray it really would leave at 3:30, but if not, we wrote another story. Delays were acceptable if he could look out the window and watch airplanes. We always carried snacks, paper and pens, toys. We tried to anticipate every frustration. There was lots of coaching and thorough over-preparedness.
There were also minor mishaps. Once when takeoff was delayed by a mechanical issue, we were offered free mimosas or screwdrivers; John demanded loudly, “TAKE THE SCREWDRIVER, FIX THE AIRPLANE!” His carefully prepared special diet was confiscated by Agricultural on our first trip to Hawaii. I lost him in the St. Louis airport, a brief moment of total panic. He was rarely interested in our destination but wanted to go home the minute we landed. By and large, however, travel was a treat, a challenge, and a great experience for us all.
Fear of flying revisited
As summer approaches, autism families may wonder how to make travel as pleasant as possible—or how to survive it. Here are some suggestions, drawn from the experience of John, age 54, who has flown annually since infancy and has been through good trips and bad. The key to success is thorough preparation. It also helps to have realistic expectations, unlimited stamina, nerves of steel, superhuman patience, and when all else fails, a sense of humor—qualities that autism families possess in abundance. A resource is listed at the end. Bon voyage!
Travel, and welcome to it! How we survived travel with autism and learned to enjoy it
Fear of flying
If you traveled with John in the early days, you'd remember him. He was the Screaming Baby in a seat near you. He was the adorable toddler, carried on board asleep in his mother's arms, who bolted awake on the plane and howled for the next five hours. He was the cute 9-year-old (not yet toilet trained), who left a damp seat encrusted with Froot Loops—this in the era when planes were routinely hijacked to Cuba and you had to bring extra food, just in case.
In the years before deregulation, we often hastily changed airlines for the return flight so no one would remember us from the outbound. In short, travel was a total nightmare, but with us in San Francisco and our family in Chicago, we did plenty of it. ABA hadn’t been invented yet, so we were winging it, literally.
Love of flying
All this changed when John was 10. For the first time in his life he was exposed to special ed, and the transformation was miraculous. By summer vacation, he had learned to talk (a little), read at 2nd grade level and write almost legibly. He was happy about everything, including flight.
We wrote social stories about flying. We rehearsed in chairs tilting backwards for takeoff and forwards for landing. We made noises like airplanes. We bought beginner books about flying, which John studied over and over. He became the world's most enthusiastic traveler. When he was in his teens, he got his first computer, learned keyboarding, and wrote long stories (always identical) about plane flights. These were not literary fare for airplane magazines but more like lists of every detail he remembered, including bumps in the road on the way to the airport. He collected these in a secret box, which he presented to us when it was full—apparently in anticipation of having “earned” a flight.
John also became a huge fan of United Mileage Plus. He collected Mileage Plus memorabilia. When my husband and I began to receive late notices for our Mileage Plus VISA bills, we were puzzled—until we discovered that John lifted the bills as soon as they arrived and stashed them in a hidden Mileage Plus box. He seemed to think that the more items he collected, the more likely it was that he'd take another trip.
Flights themselves became a treat, even for our long-suffering daughter who accompanied us. John especially loved takeoffs, which delivered an unsurpassed vestibular jolt. He loved to take maps and look at “United States of America on the ground.” He even loved O’Hare, a claim few travelers can make. We took him on business trips and Hawaii vacations, and after my husband retired, we let him pick a destination for a yearly outing (with somewhat limited choices, such as ruling out Frankfurt in favor of Portland).
We developed coping skills. When flights were late or luggage delayed, we wrote social stories; if we wrote that the plane was late but would leave at 3:30, he believed us. Then we would pray it really would leave at 3:30, but if not, we wrote another story. Delays were acceptable if he could look out the window and watch airplanes. We always carried snacks, paper and pens, toys. We tried to anticipate every frustration. There was lots of coaching and thorough over-preparedness.
There were also minor mishaps. Once when takeoff was delayed by a mechanical issue, we were offered free mimosas or screwdrivers; John demanded loudly, “TAKE THE SCREWDRIVER, FIX THE AIRPLANE!” His carefully prepared special diet was confiscated by Agricultural on our first trip to Hawaii. I lost him in the St. Louis airport, a brief moment of total panic. He was rarely interested in our destination but wanted to go home the minute we landed. By and large, however, travel was a treat, a challenge, and a great experience for us all.
Fear of flying revisited
"I used to wonder what would happen if we ever had a really bad flight.
I suppose it was inevitable that we’d find out."
I suppose it was inevitable that we’d find out."
I used to wonder what would happen if we ever had a really bad flight. I suppose it was inevitable that we’d find out. Eventually, the joy of travel began to diminish; maybe the novelty had worn off. But the annual trip had become a fixture by the time John’s dad died; I did not know how travel would work in the future, yet it seemed a shame for him to be deprived of both dad and vacations at the same time. We resolved the issue by bringing a male respite worker, who came along to help especially with security and bathrooms.
At the same time, changes were occurring in the airline industry. Airports were more crowded, security lines longer, delays more frequent. We had some tense moments in security. John liked to grab his shoes off the conveyor belt and immediately plop on the floor to put them on, a move not popular with TSA. One agent ripped his ID from around his neck because it had a metal clip. When passengers were first required to step into a booth, spread their legs and raise their hands, John exclaimed, “JUMPING JACKS!!” TSA was not amused.
The flights themselves began to go awry. For the first time, John fretted during mild turbulence. He had always tolerated landings, even when planes wobbled as they sank, but we finally encountered a missed approach. Descending through fog into San Diego, our pilot found himself landing on top of a building and pulled up sharply and precariously. Luckily, the roar of the engines drowned out John’s shrieks. When we returned to the airport to go home, he announced to TSA, “NO MORE PLANE SWING!” I was puzzled, until I realized that the landing was like a swing; we had descended, swooped up, then descended again (after a slight detour over Mexico)—like a swing, but definitely no fun.
Unbelievably, we had a second missed approach two trips later, when an Air China jumbo jet blocked our path as we approached SFO. This time John’s protests were louder than the engines. Finally even the beloved takeoff went sour, as we were bounced around in the wake of a larger aircraft. John was now anxious about every aspect of flight. United had just lost its biggest fan. Yet he still expected an annual trip, and I wanted him to have something to anticipate. Amtrak didn’t have the same appeal. What to do?
At the same time, changes were occurring in the airline industry. Airports were more crowded, security lines longer, delays more frequent. We had some tense moments in security. John liked to grab his shoes off the conveyor belt and immediately plop on the floor to put them on, a move not popular with TSA. One agent ripped his ID from around his neck because it had a metal clip. When passengers were first required to step into a booth, spread their legs and raise their hands, John exclaimed, “JUMPING JACKS!!” TSA was not amused.
The flights themselves began to go awry. For the first time, John fretted during mild turbulence. He had always tolerated landings, even when planes wobbled as they sank, but we finally encountered a missed approach. Descending through fog into San Diego, our pilot found himself landing on top of a building and pulled up sharply and precariously. Luckily, the roar of the engines drowned out John’s shrieks. When we returned to the airport to go home, he announced to TSA, “NO MORE PLANE SWING!” I was puzzled, until I realized that the landing was like a swing; we had descended, swooped up, then descended again (after a slight detour over Mexico)—like a swing, but definitely no fun.
Unbelievably, we had a second missed approach two trips later, when an Air China jumbo jet blocked our path as we approached SFO. This time John’s protests were louder than the engines. Finally even the beloved takeoff went sour, as we were bounced around in the wake of a larger aircraft. John was now anxious about every aspect of flight. United had just lost its biggest fan. Yet he still expected an annual trip, and I wanted him to have something to anticipate. Amtrak didn’t have the same appeal. What to do?
The solution came unexpectedly last year, when our stalwart respite worker was unavailable. John settled for one night in a hotel with a view of the runway at SFO. He could look out the window and watch planes take off and land. He and I could walk along the shoreline trail for a better view. Best of all, the hotel offered both swimming pool and hot tub, always a travel highlight. As a bonus for me, the excursion was far cheaper than a trip with plane tickets. We adapted to the situation, a skill at which autism families are unsurpassed.
So this summer you will find us back at SFO, sitting on a bench watching the planes go by. John mentions this trip frequently, and always ends with the same request: “NO fly an airplane!”
Fine with me…
So this summer you will find us back at SFO, sitting on a bench watching the planes go by. John mentions this trip frequently, and always ends with the same request: “NO fly an airplane!”
Fine with me…
- Ready, Set, Fly is a great program designed for individuals with autism, developmental disabilities and their families, co-sponsored by The Arc of San Francisco and SFO. The program helps families plan and prepare for travel and familiarizes children with the airport experience. http://www.flysfo.com/community/readysetfly
- For information about this year’s schedule, contact Meredith Manning at The Arc San Francisco, [email protected]
Sue Swezey is a co-founder of Autism Society San Francisco Bay Area. She currently serves on the board of SFASA and lives with her son John in Menlo Park. More by Sue:
When Dad Goes to Heaven: A Vintage Autism Mom Reflects on Loss, Coping, and New Love
When Autism Moms Age Out: A Vintage Mom Worries About the Future
“What will the neighbors think?” Dealing with ostracism
When Dad Goes to Heaven: A Vintage Autism Mom Reflects on Loss, Coping, and New Love
When Autism Moms Age Out: A Vintage Mom Worries About the Future
“What will the neighbors think?” Dealing with ostracism
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