10

Great Expectations

I knew at that point that this was going

to be the greatest disaster of all time.

I knew it.

Kai has slept badly. His neck hurts. He yawns every ten minutes. He has a cold to top it off. Kai is in a bad mood. Lake Geneva glitters below, the Alps tower on the horizon. Springtime in Lausanne.

Kamila and Henry pick Kai up from the airport. How will the experience be this time? You never know with Kai. It can be lovely, funny, or loud and tearful. But one thing is certain: it never gets boring.

KAMILA: Remember Christmas?

HENRY: Oh, dear.

KAMILA: Kai loves Christmas.

HENRY: He started the tradition of us all singing together, the songs we sang when he was seven, eight.

KAMILA: Jingle Bells.

HENRY: Father Christmas. Whatever.

KAMILA: He starts singing each song. No one else is allowed to start. Otherwise, Christmas is over.

HENRY: Yes, Christmas is over then. (Laughs.)

KAMILA: The girls just watch, mesmerized. It’s so funny.

HENRY: And Kai plays Santa every year. One time, he was sitting in his room wearing his costume, and you could see that something was seriously wrong. “Kai, what’s going on?” He didn’t know how to say it: he had forgotten his Santa pants in Israel. (Laughs.) A very serious situation. We went shopping, got a whole new costume. Saved the day, last minute.

KAMILA: He also hands out all the presents.

HENRY: He usually panics before unwrapping his own gift. Last Christmas, we decided to give him a very special gift: an Oculus Rift, a virtual reality headset. When you put it on, it’s like in a movie. You can be in a hang glider. When you look down, you see the ground below you, the woods, the meadows. It’s exciting.

KAMILA: Henry thinks he always needs to buy Kai the most amazing gadgets.

HENRY: I always fall into the same trap. I buy the best gift, and it turns out to be a fiasco. Last year, I said, “Let’s buy him a remote-controlled plane.”

KAMILA: That was not last year. That was many years ago. The first of many disasters.

HENRY: A beautiful helicopter, huge.

KAMILA: Like a drone.

HENRY: No, drones are easy to fly. This helicopter wasn’t. We went out into a field—

KAMILA:—and when it finally got going, after all this back and forth with the batteries and the technology—

HENRY:—the helicopter flies right into the forest.

KAMILA: It just disappeared, after exactly ten seconds.

HENRY: We spent a whole day preparing it and then never found it again.

KAMILA: Kai was cursing. All we heard that day was “It’s all your fault. You guys are stupid.”

HENRY: “You always buy me these dumb presents.”

KAMILA: Since then, I’ve been in charge of gifts.

HENRY: The headset was my idea, though. The cream of the crop. It was a big package.

KAMILA: Kai always gets the biggest present.

HENRY: Of course, he said, “What is it? What am I getting?” And I made the same mistake I always do. I said, “You’ll never guess.” He responded: “Oh, yes I will.” And then he spent an eternity guessing what it could be. Of course, he couldn’t guess that it was an Oculus Rift. That wasn’t in his repertoire.

KAMILA: He mentioned everything: Wii, PlayStation—

HENRY:—Xbox, everything. He had the biggest present under the Christmas tree, and he couldn’t guess what it was. He started hyperventilating.

KAMILA: I knew at that point that this was going to be the greatest disaster of all time. I knew it.

HENRY: It had long ceased to matter what was in the package. His expectations had outgrown it.

KAMILA: Perhaps we should give him an iPhone every year? We gave him that once, and it exceeded his expectations. Give him an iPhone every year, and everything’s fine.

HENRY: He can use that. When he’s mad, he needs something to throw against the wall.

KAMILA: He’s destroyed several iPhones that way. We didn’t want to buy him one that year, because the last one had hit a wall. So, we said, “He’ll get one next year again.”

HENRY: So, we open the Oculus Rift. We had to get it to work.

KAMILA: A twenty-four-hour operation.

HENRY: On Christmas Eve, with two little girls. There’s enough going on as is. You don’t really have time to start an Oculus Rift. You first have to install the program on the computer. We tried that and realized that you couldn’t install it on a Mac. So, I drove into the office to get a PC, the newest graphic card. We had everything one could possibly need.

KAMILA: Except a little thing called a driver.

HENRY: We realized this four hours later.

KAMILA: And Kai is standing behind you the whole time: “Is it working? Is it working?” And you always say, “Yes, Kai. Yes, soon.”

HENRY: And I had to tell him to his face that I can’t do it, especially not on Christmas. I had to call in a developer to solve the problem. Luckily no cell phones hit any walls. It was a miracle.

KAMILA: The magic word is expectation management.

HENRY: It does not change anything about the autism, but it’s still important for everyone. A strategy for everyday life. You’ve got to think ahead and keep up with his expectations. When you don’t fulfill them, when autistic people expect something and you suddenly do something else, it’s a massive trauma. If you say we’re going bowling at 7:00 p.m., Kai will start ­waiting at 4:00 p.m. In those three hours, he builds up such expectations, that if you think you can go bowling at 7:05 p.m., you have a problem. That will cause an explosion. It’s all about expectation management.

KAMILA: Sounds easy, but it’s the hardest thing because it’s the opposite of what we normally do.

HENRY: Average brains can adapt. Can’t find your shoes? Well, we’ll be five minutes late then. That’s a good enough reason. But not for them. To Kai, you had three hours, from 4:00 p.m. to 7:00 p.m., to find your shoes. You can save yourself the apologies.

KAMILA: And because you think differently, you keep making the same mistakes. And sometimes you’re so dumb that you even kindle his expectations.

They went to Venice last summer. Kai was already giddy with anticipation days before. Italy was the land of his favorite foods. All he could think about was pizza and spaghetti Bolognese. In a thoughtless moment, Henry and Kamila said, “Kai, we are going to buy you the best pizza and spaghetti Bolognese in all of Venice. It’s going to be delicious. It’s going to be a hoot.”

And what a hoot it turned out to be.

They were traveling with friends, to make matters more complicated. After a long drive, they arrived at the hotel, one of the finest in Venice, five stars. “Where’s the restaurant?” they asked the receptionist. Kai hadn’t eaten all day. He had been waiting for his spaghetti since the day before and in the meantime had been stockpiling twenty-four hours of weapons-grade expectations. The fuse was lit.

Minutes later, they were sitting at a table with a thick white tablecloth and silver cutlery, surrounded by distinguished faces, busy managers, artistically inclined Venice Biennale visitors. The fountains spouted, the music murmured, the conversations did both.

“One spaghetti Bolognese,” Henry said, before even looking at the menu. He was distracted by something the waiter couldn’t possibly see: the burning fuse.

“Sir,” the waiter said in a tone as fancy as his white shirt, “we are a vegetarian restaurant.”

“Oh, my god,” Henry let slip. Kamila’s mouth gaped. And their friends, who knew what was going on, looked on as if they were about to be arrested.

“Vegetarian?” Henry whispered.

“Yes, the only five-star vegetarian restaurant in all of Venice,” the waiter said proudly.

“Couldn’t you . . .” Henry whispered, studying Kai out of the corner of his eye. Kai hadn’t grasped the situation yet. In his mind, he was already spinning the noodles through the sauce, the most delicious Bolognese he’d ever tasted. And he had tasted a lot. It seems fair to assume that no person in the whole world had sampled more Bolognese than him.

Could they perhaps make an . . . ? His son had spent the last days . . .

“We have the most amazing grilled vegetables here. You will be surprised. Our guests fly in from all over the world because of our kitchen.”

“Yes, of course. But, you know, children . . .” The waiter looked with some surprise at Kai, with his peach fuzz and his cell phone in hand.

“They can be a bit picky about food. Could you make an exception? The rest of us, of course, will gladly order your delicious vegetables.”

“Well, unfortunately that’s quite impossible. We don’t have the ingredients. We don’t even have spaghetti, and it’s nighttime.”

Henry took the waiter aside. Kamila started to prepare Kai; both their faces contorting when they heard what the other had to say. Henry warned the waiter: if he wanted to prevent a scene that he and his guests would not soon forget, he would be wise to give up on the menu and at the very least bring a pizza.

And indeed, at the last minute, a pizza came, a margherita, and Kamila and Henry topped it elaborately with words of consolation: it was the best pizza ever, and tomorrow, first thing, Kai would get his beloved Bolognese, the best in town, he would see, it would be better that way. And Kai sat there, looking down at his feet, his fingers in a restless twiddle, his teeth gritted. But then, miraculously, he somehow managed to maintain his composure, only mumbling, “Good, I won’t eat anything then. I’ll sit here and eat nothing.”

“It was unbelievable,” said Kamila. “After twenty-four hours of anticipation, even I would have lost my temper.”

They were proud. They thought they’d made it to safety.

The next day, they hopped a vaporetto boat to the Biennale. The wind was blowing, the sun smiled, Venice smelled as it does, and a good-humored Kai looked out at the old buildings as they shrank into the distance and then grew again as they approached. He didn’t care about the Biennale, needless to say. If it were up to him, a quick dash to the nearest restaurant would have been the first thing on the agenda, but Dad and Kamila had bought tickets long ago, so they decided to just eat there, in the sprawling food court next to the pavilions.

Then the scandal: no spaghetti Bolognese. Lots of sandwiches, curries, salads, cakes, all manner of things, but no Bolognese. Kai was beside himself. That was it. No Biennale, then. They jumped on the next boat, back to town, back to what mattered. They raced across cobblestones and bridges. Over there: that place behind the church looked good. Scanning the menu outside, they found relief: Bolognese, pizza. Kai ordered both. When the food came, he inhaled the vapors and ate the two dishes at the same time. Their three faces finally relaxed.

Here comes Kai. They spy him through the window at the gate. White T-shirt, blue chinos, white sneakers on his feet, four pearl bracelets on his wrist, a big silver watch, earphones in his ears, gel in his hair. He’s wearing cologne. Seems like a normal, cool guy. Some people look at him a tad disapprovingly. A bit vain, they might think. They don’t know better.

He wears these clothes because the fabrics are high quality, meaning they are softer on his skin. He loves the bracelets because Kali got them for him in the Philippines. He wears the medallion because his girlfriend wears the other half, and if you put the halves together, it says “Best Friends.” He loves the watch because it’s a gift from his father. And still, one has to admit there is a bit of vanity at play here. Poor Henry—who is gripped by horror when Kamila wants to take him shopping every six months—was dragged by Kai from store to store, examining two hundred watches, enduring two hundred sales pitches. Henry had already lost all hope when Kai finally said, “Yes, that’s the one.”

“He’s the most spoiled child in the world,” Anat sometimes complains to Henry when he has granted another of Kai’s wishes, buying him a watch or cologne. Unfortunately, the cologne doesn’t just smell of citrus. It also has a sad note. At first glance, Kai’s no different from anyone else: he wants to look good and smell good so people like him. But it goes deeper than that. He wants to look good and smell good because he is—in the expert’s jargon—hypersocial. He seeks human contact like no one else. And, of all people, he is the one whom people turn away from most. Because he is different. But maybe, just maybe, Kai thinks, if he smells good enough and looks good enough, people will like him.

Kai has a slender face, peach fuzz on his chin, black hair, chestnut eyes, and a kind of roundish nose you often see on teenagers as they go through their final growth spurt. He is twenty-four years old, but his nature, the way he feels and thinks, is ten years younger. He recently called his father from Israel.

“Dad?”

“Yes?”

“I would like to get an earring.”

“What did your mom say?”

“She said I should ask you.”

Henry was silent. This was an important moment. Better not screw it up. He had to think about this. He couldn’t say no, but he also couldn’t say yes. Eventually, he said, “Kai. You can get an earring. But I want you to really think it through before. Make sure that you don’t just want it because others have one. Think about what’s good about an earring and what’s bad about one. Let’s talk about it again this week. Then we’ll decide.”

I’ve done everything right, Henry thought, when of course he had done everything wrong. That week was a nightmare for Kai, not to mention Anat and Kali. The whole week, Kai did nothing but sit there and think and wait for the phone call.

“Kai, would you like something to eat?”

“No, I have to think.”

“Kai, feel like going shopping with me?”

“No, I have to think.”

And once he had decided:

“Mom, in six days I’m getting an earring.”

“Mom, in five days I’m getting an earring.”

He counted down so often that the whole family wished they could skip a few calendar days or at least fall into a deep multi-day stupor, just so they would never have to hear the word earring again. “Never set a deadline,” Henry says in retrospect.

Kai got his earring. A while later, he called his father. “I have to tell you something,” he said. “It’s good that I had to think about the earring. Unfortunately, I didn’t think about it enough.”

It was a funny call. And it gave Henry hope. Autistic people are almost helplessly at the mercy of their compulsions. They find it hard to change their behavior, to steer it. It requires painstaking work. The prerequisite is that they even recognize their compulsions, that they recognize and nurture their weaknesses as well as their strengths.

These moments, when Kai reconsiders his behavior instead of seeing himself as a person without agency, are important.

They drive home from the airport. It’s going to be a nice evening. They talk a bit more, but Kamila can’t quite get through to Kai. He has discontinued his medication. She can feel it.