4

A Strange Boy

Kamila had to sit down.

Where was his mother? Where was his father?

She didn’t understand what just happened.

Kamila had rented a boat and rowed out onto the lake. Lausanne bobbed before them. The cathedral, the old city, the harbor, and the people on the banks slowly shrank into the distance. Kai had armbands on, he was only eight, and Kali let her hand glide through the water. Kamila plunged the oars into the water. Left, right—it wasn’t easy. She started to work up a sweat. She lifted her head and took it all in. The Alps, the city: still foreign to her but beautiful that day. It was her first excursion with Kai. How would he respond to her?

Everything had gone well with Kali and Linoy, thirteen and ten years old at the time. Henry had spoken to them beforehand. They had listened silently. They went to the movies with Kamila, and Kali cuddled up to her. Linoy kept her distance but flashed her a smile. She was grateful to the girls. She was only twenty-nine. Dating a man with three kids didn’t come easily. Kai hadn’t come along to the movies. Movie theaters were not his cup of tea. And so, they decided to go for a boat ride. Kamila felt ready. Kali was joining them, thankfully. Kamila planned to make an effort, buy them ice cream, take them both for a swim. Kai loved swimming. What could go wrong?

“Are you sure you don’t want me to come?” Henry had asked. “Kai is a bit particular.”

“No,” she said. “We’ll make it work.”

She loved children. She was patient and had steady nerves. Kai would feel comfortable.

Sometimes, Henry warned her, Kai threw these tantrums. They appeared out of the blue like a thunderstorm on a hot summer afternoon. Make sure not to overwhelm him.

How would she overwhelm him?

They paddled onward; the sun was shining, the wind sweeping through their hair, the boat coasting. She wasn’t so bad at this. The children were laughing, having fun. And then, without warning, something changed in Kai’s expression. The look in his eyes hardened, his teeth gritted, and suddenly he was no longer himself. The boy with the armbands took command of the boat. He started shrieking. Kamila didn’t understand what was going on. She forced herself to calm down, in the middle of the lake with two kids on board.

“What’s wrong, Kai?” she asked. “I’m sure it’s not so bad.” Kai only grew more frantic, started spitting and swinging his fists. The boat wobbled. The shore was awfully far away, and so was Henry. If only he’d come along! Kamila pretended everything was fine and kept paddling, albeit back toward shore. Kali started quietly talking to Kai, who seemed to calm down but then erupted again, saying things to Kamila that angered her, words she would never repeat, even back on shore, when she recounted the episode. He raged and rampaged, and in her helplessness, she reached out and grabbed him by the nose. She would never hit a child, never attack a child, but it turned out, in panic, on a rocking boat, she could grab this particular one by the nose. Her gesture seemed to say, “Not going to fly, kiddo, not going to fly.” Kai was scared stiff. Kali took Kai by the hand, whispered in his ear some more, and Kai seemed soothed by her words while Kamila paddled toward shore, toward his parents, toward firm ground. Kai had a wild look in his eyes, but eventually, after what felt like an eternity, they reached the shore and hopped out of the boat. Now the ground seemed shakier. Kamila had to sit down. Where was his mother? Where was his father?

“My nose. My nose. It’s all red,” Kai complained when Henry arrived. “Kamila did it.”

Henry stared at the ground. He knew what had happened. He would have preferred to spare Kamila the experience.

“During that first year,” Henry says now, “Kamila was just covered in green and blue bruises.”

“No, that’s not true,” she retorts.

“Yes, it is,” he says, and she falls silent.

Kai spat, punched, bit and scratched. And she didn’t even know why—not the first time he did it, nor the hundredth time. What had she done wrong on the boat? Kai had seemed so excited about the trip. Perhaps he was mad that he didn’t get to row or he had suddenly panicked that they were so far from shore. Henry had explained to her that Kai panicked in situations where other kids would jump for joy.

These misunderstandings were commonplace early on. And Kai knew how to get back at Kamila. The little boy had an unparalleled ability to get under her skin. If she walked him to school, he balanced on the curb of a busy street. The looks people gave them! She warned him and eventually grabbed him by the ear. Kai screamed: “I’m telling my mom. I’m telling my dad. My ear is all red.”

“Tell your mother. Tell your father,” she said, but deep inside it hurt her. She wanted to do better. It was a constant dilemma. You mean well, you try your best, but still you say and do the wrong thing.

Despite all the bruises, she loved Kai. He was an open-minded, warmhearted little person who cuddled and hugged her. He talked to you, you talked to him; mostly you talked past each other, but it didn’t matter. He remained lovable. He would tell you all sorts of things, about bowling, about swimming, about the many things he loved. You could play games with him, make music, prepare food together. He wasn’t a tender little flower you had to handle delicately; you could take him by the hand and do all kinds of fun things. Bowling, swimming—everything was a hit. So was boating, usually.

Kamila came to understand him better. Henry saw how she brought structure into Kai’s life; how she dressed him in the right clothes (the softest sweater); how she patiently made him his cottage cheese sandwich; how she helped him with his chores (not the easiest task for either of them); how she got him in a sleepy mood at the right time, with songs, stories, and the right pillow. Kamila was good for Kai. She became his second mother.

Henry and Kamila spoke about Kai constantly. When they visited a doctor who doubted that Kai was really autistic, she asked Henry to explain how it all fit together and what else it could be. She started downloading research papers, buying books. She wanted to know everything. This strange boy was no longer a stranger. He was part of her life. It was as Linoy said: Kai was always the center of attention. When he stepped into your life, he ran the show.

Kamila started drawing conclusions. Scientists are like that: They have a question, and they feel compelled to find an answer; that’s the fundamental instinct you’ll find in every one of them. She soon knew as much about autism as Henry, though she came to it from a different angle. Henry had the outlook of a doctor, an obsessed biophysician. He dwelled on the particulars, delved into the cells, into impulses and molecules. She saw the big picture. She had the outlook of a biopsychologist, a behavioral scientist with a philosophical background. While Henry did his research through the microscope, she analyzed Kai’s mimicry, his gestures, his words and fears. Henry knew how electric impulses flowed from one cell to another; she knew how feelings arise in the brain and the effect they have on a person’s memory. He saw the lightning strike, the eruption, while she saw the fear, the pain. They were a bit like superheroes who combined their strengths and balanced out each other’s weaknesses. We’re stronger together, they soon realized. But it was Kai who turned them into a force. He brought something to their research that is often lacking in scientific inquiry: the constant confrontation with reality. Together, the three of them were a force. They were strong enough to go where no one in autism research had gone before: the fusion of life and learning.

Talking to Henry and Kamila today, fifteen years later, it seems as if they’re just starting to grasp the interplay that occurred back then, this act of providence.

HENRY: On the way over here, I was thinking about the influence Kai has had on our life. It isn’t that easy because so much just happens—you don’t really think about it. Imagine what our life would be like without Kai.

KAMILA: Hmm.

HENRY: Our work has become a shared passion. That has influenced our research.

KAMILA: That’s true, but Kai isn’t the reason you became a scientist.

HENRY: No, I was born a scientist.

KAMILA: We are both born scientists. We wanted to understand things. It’s a compulsion: counting, tallying, and explaining why one thing leads to another. But Kai spurred us on. It couldn’t happen quickly enough, even if we were already too late—

HENRY:—and had made every mistake that one possibly can.

KAMILA: We didn’t know any better.

HENRY: For sixty years, everyone has said that autistic people have no feelings, no empathy.

(Kamila is silent.)

HENRY: When you come at it from another perspective, you reach another conclusion.

(Kamila remains silent.)

HENRY: The problem is that many scientists have never met an autistic child.

KAMILA: They have. They’ve just never lived with one.

Kai changed everything. Without him, they would have never become autism researchers. Without him, they, the renowned professor and the PhD student, wouldn’t have been strong enough. They might have dared to start along another path, but they wouldn’t have had the drive to continue when there was no apparent way forward. They knew the established doctrine as well as anyone, the studies, the papers, the assembled knowledge of autism research. They knew the “mind-blindness” theory of autism, the famous experiment that seemed to prove that autistic people can’t feel empathy. But Kai didn’t behave as an autistic person was supposed to. He contradicted the studies, the doctrine. For a while, they tried to reconcile Kai’s behavior with the old consensus; now they tried to reconcile the old theories with Kai’s behavior. They dared to do something they never would have if it hadn’t been for him: they questioned the old dogma.