1

Powerless

“Most people assumed that I, as a neuroscientist,

could help my child more than other parents.

They were wrong. I felt even more powerless.”

As quietly as autism had sneaked into their lives, it now settled in all the more noisily. Their family life was progressively built around Kai’s tics. Of course, he was still the sweet little boy who livened and shook things up at home. He loved skidding in water, so when Anat cleaned the house on Saturdays, she flooded the whole floor, and the kids slid by, laughing, with Kai laughing loudest. On New Year’s Eve—usually a quiet evening in Israel, hardly anyone celebrates—they sat in the kitchen, drowsy and bored, until Kai leapt into the room. “It was five minutes to midnight, and he arrived with a bag of confetti,” Linoy recalls. “He had spent the whole evening punching it out of paper. ‘Everyone get up!’ he cried. And we had to count down: ten, nine, eight, seven, six . . . Happy New Year! And he flung the confetti! We really celebrated New Year’s. It was wonderful.”

Like almost all autistic people, Kai started accumulating more and more rituals. Christmas became his chief ritual. He sorted the carols into his preferred order well in advance. He sang the first word of every song and then the family had to join in. Woe to anyone who started too early or didn’t sing along until the last note. The girls sat there with mirthful eyes. Kai was a bigger attraction than Santa.

In everyday life, though, his rituals became a burden. Every morning, it was a struggle to find socks and underpants he was willing to wear. In the evening, he wouldn’t go to bed without his cottage cheese sandwich and only if his preferred pillow was in the right place. The battles wore on them. Even Kali could no longer understand her little brother. Henry found it hard to mask his impatience when he was already late for work and Kai was throwing another tantrum over socks.

Apparently just getting started, Kai began enthusiastically throwing his toys out of the window. The neighbors rang the doorbell, and Henry said, “Yes, we know, we’re sorry, he’s autistic.” The neighbors still shook their heads, but at least they didn’t ring the doorbell anymore.

Rituals grow out of fears. Kai, the explorer, had become a scaredy-cat. The boy who used to rush over bridges, slide down hillsides, and snowboard faster than anyone in the family, now refused to climb a hill or set foot on a board. Henry’s compañero, his son, who was just like him—boom! eyes open, ready to take on the world—was no longer available. No became the operative word in a life defined by retreat and refusal. Henry had no idea what to do. Was he not being nice and patient, as Lynda had suggested? Was he not doing everything the textbooks said: encouraging the boy, limiting his rituals? It was no use. Helplessly, he watched Kai turn away from the world just as he was turning away from his family. In some ways, they could count themselves lucky. Kai still spoke to them, after all, let them touch him, and even returned their kisses. And yet, it hurt when they would say something nice to him, give him a present, or lovingly cook him dinner and he couldn’t muster joy. All thoughts of the future were fraught with fear. Who would take care of him when they were no longer there? Not to mention the constant nagging of their guilty conscience. They didn’t have enough time for Linoy and Kali, for friends, for a normal life. In short, they experienced what almost all parents of autistic children go through. Except that, in Henry’s case, there was another layer to the suffering.

“Most people thought that, as a neuroscientist, I could help my child more than other fathers. That was false. In fact, I felt even more powerless.”

Henry felt that he was failing as a father and a scientist. He couldn’t even understand what was happening in his own son’s head. All his illustrious essays and prizes were of no use when he was back in Kai’s room feeling helpless. He dove deeper into the books, sought more counsel from experts, but it only made matters worse. Other parents could hope. They could entertain the illusion that doctors could help them. Henry knew better. The doctors didn’t even know where autism came from or what one could do to fight it. “You’re the one who should know,” they would say to him. “You’re the neuroscientist. We’re just doctors.”

“You feel guilty. You think you ought to know. It starts to feel like a great big farce. You feel like a failure.”

The sabbatical had only made things worse. “The frustration of not understanding is what compelled me to go to America in the first place. That was the mission: to understand. The goal was to bring together scientists and patients. How can we neuroscientists help people in a tangible way? I took a year off for that. I was totally dejected afterward. We scientists had no influence. There was a wall between our research and the patients. We were in an ivory tower, so divorced from the rest of the world.”

Henry had to make a decision. He could continue as before, keep applying himself to the minutiae. Some scientists make a big difference with their minor contributions. Many more, however, get bogged down in specificity. A neuroscientist studies memory and delves ever deeper, from the cell to the synapse to the memory synapse. Soon, he will no longer have anything to do with the world outside. The better you are, the more bogged down you get. That’s what happened to Henry.

“You join the best lab for memory synapses. You request the best grants available for the study of memory synapses. Then you publish articles in journals that deal exclusively with memory synapses (such journals really exist). You go to conferences for memory synapses, where you meet other experts on memory synapses. And they become your friends, your memory synapse friends, and you love what you do, and you undertake the next great experiment, write the next important paper, give talks, travel the world, collect prizes, until your world is just one gigantic memory synapse.”

Kai alone had torn Henry out of his cosmos. He wouldn’t be much help to his son as a personified memory synapse. If Henry was honest with himself, his work was no longer in line with what he’d set out to accomplish as a young man. It had nothing in common with the mission his grandfather had underwritten with that check. He had strayed off course. Even if his current path was paved with glory, it remained a dead end.

Henry decided to change direction.