Friday, February 11, 2011

Travels with Autism

I've just come into the hotel room to find my son asleep, under a heavy comforter and sandwiched between two pillows. The computer is on the bed beside him,an antique Nintendo game paused on an emulator on the desktop.

It's 8:30 on a Friday night in Ho Chi Minh City.

I had taken a walk around the block, having had supper and killing time before coming back to the room. The streets in this district are alive right now with tourists and hustlers and working girls. Young men and women his age wander around with eyes wide and wallets full for mischief.

My boy should be with them, but he's playing a 16-bit video game in his room instead. And he's perfectly happy.

He's 21, and he has autism.

If you don't know, autism causes profound differences in the way you see and hear and think, the way you react to people, places, situations. You become wrapped in your own world, your own interests, habits, phobias, perceptions. It's different for every person who has it, comes in different degrees. Our son is very loving, responds to the world, but has the social and emotional skills of someone maybe 10 years younger.

On the trip it's a challenge. He won't pee in a urinal, let alone a squat toilet. That limits your itinerary in SE Asia, I can tell you. He's picky about his food, though you can work around that. In cultures that are still deeply superstitious and rule-bound, his tics and compulsions are looked on askance as he walks down the street, talking to himself and shaking an invisible hand over and over.

He's terribly absent minded, and has little of what we would call 'common sense'. That's not to say he's not intelligent... he's knowledgeable on many subjects, and can have great conversations with you about all sorts of interests. But that particular kind of thinking that allows you to understand how others think and feel and behave- whatever part of the brain serves that function- has just never developed fully.

I'm in Ho Chi Minh City now because he wouldn't go to a tropical island, with white sand beaches and thatched huts. Because the toilets wouldn't flush. It was his birthday, and he wanted Burger King and an arcade. We left his mom and sister to the beaches and headed inland.

Today, we found an arcade, and I gave him a handful of tokens to play a game. I left for 20 minutes. When I came back, he was gone.

I searched frantically for him. Panicky, anxious, angry circuits of the mall floor we were on. There was no sign of him. Everything that could possibly go wrong flashed through my mind.

Finally, on my third go-around, I found he had returned to where I had left him.

Yeah, I gave him heck. Like I did the day before, when he started walking up to people at the Vietnam War Museum, asking what they thought of the photos of American atrocities. Like I did the day before that, when he blew his nose over-the-top loudly in a restaurant. Like three days ago, when he wandered away at the 15-minute bus stop in the middle of Crapnowhere, Cambodia. Like the day before that, when he picked a scab and had a dribble of blood down his leg, to the alarm and disgust of our tuk-tuk driver.

Sometimes, when he's particularly whiny about the food or the hotel or that his Christmas wasn't good enough this year, I've sworn I'm going to send him on the next flight home.

Sometimes I'm not the greatest father.

We're always on him, to protect him, to protect others, to avoid embarrassment- and it can't be easy for him. And time and time and time again he's taken our shit and accepted it. He'd never dream of snapping back, of arguing. And his acceptance just makes me feel even worse after I'm done.

People say we're pretty special parents for taking him along with us. We don't deserve it, he's really just a regular young man in so many ways. And the way he puts up with us, our constant fear and worry that spills over into anger and frustration- that's what's special. He's the one with the courage, the strength- to stay so far out of his comfort zone for so long.

Two months in, this trip has shown us there are kind people in the world. People sense he's different, even through the culture gap. We have received gracious gifts and wonderful breaks from people who have far less than us. Hotel owners make special meals for him, bend the rules on computer use or refund our money when he balks at staying at a particular place. The world can be cruel, but every once in a while humanity shines through.

They say travel expands the mind. It's true for him as well. In his own way, he has worked so very hard to be flexible, to try new things. We take the small wins- like when he peed in a non-flush toilet when there was no option. When he drank orange juice for the first time. When he found his own way safely on a bike down a busy highway in Laos.

And he can bring joy too. Cole's world is limited, but there's wonder and magic to be seen there. When we open up the trip to his agenda, sometimes you see things in special ways, behind doors we'd never explore.

He was dying to pet a cow. For weeks he would drop hints and ask if we could stop by a farm. Finally a friend in Vientiane brought us to see some cattle. They were in a slaughterhouse yard. It was 80 degrees and these animals were tied on short ropes in the hot sun, no water or food. Cole approached one. Animals can tell he's different, and respond. An old cow, destined for the butcher the next day, let him pet her. I'll never forget that moment she sensed his love. They spent about 15 minutes together, Cole giving her the last comfort she'd ever have.

Cole has another agenda on this trip. Like anyone his age, he's desperate for someone to love. Autism is so cruel. He hasn't the social skills or emotional maturity to even begin thinking of dating, but every burning  hormone in his young body tells him he wants it.

“Dad,” he said before we left. “Do you think it's possible I might meet the girl of my dreams on this trip?”

He's been oblivious to a half-dozen chances of meeting that girl. Among the 20-somethings drinking and flirting on our two-day boat ride down the Mekong, The bikini'd babes on the beach and bars at Koh Lipe and Sihanoukville. The friends of friends in Vientiane, who came to our house to party one night.

“Yes Cole,” I replied. “If you are kind and open to new ways, if you learn to talk to people to make friends, you could meet that girl.”

She could be down on the streets of Saigon below us right now. I wonder if he's dreaming of her.

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