6

Don’t Cross That Line

“Don’t get your hopes up,” the principal said.

“An autistic child will never be normal.”

What do you know? Henry thought to himself.

“Please take a seat.”

Henry sat down.

“I’m glad you’ve chosen to enroll your child with us. I’m sure you have questions.”

“You have a good reputation,” Henry said. “You have experience with autistic children. Now you’ve met Kai. What’s your impression of him?”

“It’s too soon to judge, but I think he’ll be in good hands here. As a private school, we can offer Kai a lot that other schools can’t afford. We adapt our approach to the child’s needs. Each student has their own teacher.”

Henry and Anat were pleased and nodded. After so many false starts, they had spent a long time debating what school would be best for Kai.

“Also, we teach according to a special methodology. The ABA method. The child learns through rules, rewards, but also through sanctioning.”

“I see,” said Henry. “We didn’t exactly have the best experience with that at the Montessori school.”

“Montessori?” The teacher raised an eyebrow.

“Yes, and Lynda Thompson from the neurofeedback clinic.”

“Neurofeedback?” She raised her second eyebrow.

“Yes. Lynda said there were three ground rules: be nice to him, be nice to him, be nice to him.”

“Well,” said the teacher, “the ABA method was developed specifically for autistic children. And studies have shown that it works: whether it’s intelligence or language acquisition, the children develop more successfully than in generic therapies.”

Henry and Anat stared at her vacantly. They had their doubts—and so did Kamila, whom they had consulted at length. Then again, they weren’t teachers. They had to trust someone. They faced the same dilemma as every parent with an autistic child. There are so many forms of autism, so many approaches to therapy. How do you proceed? Whom can you believe?

Lynda would have wrung her hands if she’d known that Kai was going to be taught according to the ABA method. “Behavioral therapy like ABA doesn’t work for Asperger’s,” she says. “It’s geared toward symptoms. If a child avoids eye contact, they force him to do exactly that. That isn’t good for the child. If you want a child with Asperger’s to open up, you should try to approach him through his preferences. I call that participation and redirection. For example, if you want a child to learn to read, you should find out what interests him, what excites him, and give him books on that topic.”

The successes of ABA that the teacher mentioned had been achieved only with classically autistic people. And those successes were controversial. Certainly, some parents had good experiences. Others felt their child was being trained or conditioned. The child was doing what the teachers wanted only because he or she had been drilled to do so. This didn’t seem to make them happy. How well would it work for Kai? Henry felt at the mercy of chance, like all the other parents. He had yet to reach his own conclusions—suggesting that there is a therapy that works for all forms of autism.

They decided to put their trust in the teacher. If only they had trusted their inner voice instead, as Anat usually did. What the teacher said on their way out should have been enough of a red flag. “Don’t get your hopes up,” she said. “An autistic child will always be autistic and never be normal. Kai will never be able to do certain things.” She didn’t say this in bad faith. She meant well; her tone was considerate. Henry and Anat could hardly believe what they were hearing.

What does she know anyway? Henry thought. He was a scientist. He believed in progress. He would find a way. Kai would go to work someday, find a wife, and live a normal life, like everyone else. There is no false hope. Hope is good.

Their doubts solidified, but did they have a choice? Kai had to go to this school.

They had tried a different one before, an Israeli school. They’d assumed the teachers and students would speak Hebrew and hoped this would make it easier for Kai to adapt, but unfortunately, they were mistaken. This was Lausanne, and everyone spoke French, of course. Kai sat there and didn’t understand anything, and the kids bullied him, pulling his hair, pouring water down his pants, laughing at him. Kai started hiding in the restroom or jumping out of his seat in the middle of class and walking around, yanking his classmates’ textbooks away. If he couldn’t learn, they wouldn’t learn. He wanted the other kids to play with him, to pay attention to him. He wanted to be the center of attention. The principal kept calling Henry and Anat. Their pulse rose every time the phone rang. Eventually, he said, “Kai is a nice boy, but we can’t take responsibility for him anymore. The other children have rights too. We can’t keep him in class.”

Autistic children often get expelled from school:

Because they are wired differently and tend to disturb the smooth hum of operations.

Because they need small classes, as well as time and space to be alone.

Because they might need to go for a walk during the second period to get away from the noise.

Because they can’t sit still, and they hold their ears shut.

Because they become stubborn when something changes suddenly, like a class, or a classroom.

Because they scream and bite and spit.

Because teachers aren’t prepared for children like that.

After Kai’s expulsion, Henry and Anat interviewed at a lot of other schools. “I can’t expect that from my teachers,” one principal said. Others rejected Kai with no explanation. Only a school for the mentally challenged was willing to accept him.

They had no choice but to ignore what the teacher had said and pay a steep tuition for a questionable teaching method.

Henry had heard stories about ABA schools. He heard that the children had to eat things they didn’t like, that they had to remain seated when everything compelled them to move, that their rituals—the very things they loved most—were driven out of them. If they stopped playing with the water, they got to eat dessert. If they stopped placing cards in a row, they got their teddy bear back. If they wanted to always keep their teddy by their side, it was taken away from them. If there was a special person they always wanted to keep close, they were allowed to see them less. Instead, they had to solve tasks, recognize faces, stand still, and talk to strangers, and they were praised excessively and rewarded if they succeeded. They were trained like dogs, opponents of the method said. Henry repressed these thoughts.

He had no way of knowing that this form of education contradicted everything he would come to discover in his own research. ABA was as wrong for Kai as it could possibly be. It was the next mistake in a tragic string of them, mistakes made only because they wanted to be the best possible parents. Kamila says:

The school itself was quite good. Everyone had their own teacher. But the ABA method was not good. These children are comforted by their rituals. The rituals represent something they do well, something they understand. When you take that away from them, they panic. According to our theory, you should let your child indulge in its rituals, play along with them. Accept their world; delve into it. If you do, they will come to you.

This is especially important if your child has particularly severe rituals. Kai isn’t so extreme; he speaks, interacts. He’s not one of those kids who stop talking altogether, who just sits alone and builds LEGO towers. It’s especially bad for those poor kids if you try to take away their rituals. To give a good example: Ron Suskind wrote a bestseller about his experiences with his autistic son, which was made into an Oscar-nominated documentary. He visited me and Henry while making the film, interviewed us about our research. Suskind’s son watched Disney movies from morning till night. That was his world. He was reclusive and didn’t talk. The doctors advised Ron and his wife to forbid their son from watching those movies: he had to do something else. The Suskinds tried to take him away from his movie collection and into other contexts. They did it with the best intentions, because that’s what authorities in the field said was the right thing to do. It turned out not to be good for their son. He felt comfortable watching those movies and learned a lot from them.

Eventually, Ron learned something remarkable: if he spoke like a Disney character, his son could talk to him. The Suskinds managed to connect with their son through this Disney world. They could start a conversation with him because they had accepted his comfort zone as the foundation. That was the revelation: “Okay, I first have to enter your world, and then, slowly, I can show you another world.”

Kai stayed in that school for a year. The kids had all forms of autism. Sitting them all down in a class together was impossible. One kid could crunch numbers like Einstein, while another couldn’t find the classroom by himself. One sat quietly in the corner, while another talked nonstop. It was good that Kai had his own teacher. That is not to say that the man did everything right. When Kai had to go to the bathroom, the teacher wanted to guide him there by the hand. Kai hated that and showed it. The tasks became stricter, the punishments harsher, the rewards more seldom, and Kai grew decidedly more strange. He picked up habits from other children. One of them threw himself to the ground; suddenly Kai started doing that too. Henry thought this would pass, but it didn’t.

They drove him to school in the morning with growing reluctance. In the afternoon, they picked him up again. When Kamila was on pick-up duty, she had to take the subway because she didn’t have a driver’s license. Kai got a kick out of testing her boundaries. He no longer just teetered on the curb; he marched right into the street.

“Kai! You can’t walk into the street.”

He just laughed.

Kai knew just as well that he wasn’t supposed to cross the white line on the subway platform. He looked up at Kamila—he was cute, those two big eyes, that mischievous smile—as if to say, “I’m going to do it.”

One foot over the white line.

“Kai! That line is off-limits!”

His second foot crossed it.

“Kai! Don’t cross that line!”

He stepped to the edge and teetered. People looked at them, went “Oh!” and Kamila grabbed him by the ear. Kai screamed!

“You listen to me!”

He screamed louder than you can imagine. The people gawked, though Kamila had grabbed him gently. They boarded the train, where he kept crying.

“I’m telling my mom.”

“Good, tell your mom.”

When he realized this wasn’t working, he started swinging his feet back and forth, looking at her and swinging, until he hit her kneecap.

“Kai! Stop that!”

He kept swinging his feet and bumping into her, pestering her until they got home. The little schemer knew exactly how to push her buttons. Kamila was on the verge of flying off the handle, but she didn’t let herself. All kids are like this, she thought. They throw themselves to the ground in the supermarket. In their terrible twos and thrashing threes, they say “No!” to almost everything. The difference was that Kai was still doing this at age eight. Indeed, he was doing it more than ever.

She tried her best to recall the golden questions: “What does Kai like? How can I understand his world?” Music, bowling, pizza: that’s how she made friends with him again. She wouldn’t let him go for anything in the world, that cheeky devil who melted her heart when he cuddled her, helped her cook, helped her shop, and told her the funniest things. He saw the world so differently.