9

Lynda Sees It First

Lynda loved dogs and koalas.

She didn’t have to say much to win Kai’s heart.

Then she looked into his head.

“Point to the pencil,” Lynda said.

Kai looked at a picture of a nail and a pencil and pointed to the pencil. Lynda noted this.

“Please, point to the red dot, Kai.”

Kai had a page in front of him with four dots: blue, yellow, red, and light blue. Kai pointed to the red dot, and Lynda noted his response.

More than any child, Kai had awakened Lynda’s protective instincts. He didn’t seem as if he was almost six years old. He seemed more like three. Everything he said or did was like a plea for love and affection. Obediently, he did as she instructed.

Kai liked Lynda. She had the thickest hair in the world, she was nice to him, a picture of a koala hung in her room, and she had a dog. The dog nudged him with its snout. Kai stroked its ears. How soft they were! When Kai got bored, he could walk around in her garden. Then Mom called him. He had tasks to do.

“Kai, please click the mouse when you see the number one. But definitely don’t click if you see a two. Do you understand?”

Kai gritted his teeth and stared at the screen with grim determination. When a number appeared, he didn’t just click, he scrutinized it carefully. That way, he missed a few but didn’t make any mistakes. He never made the mistake of clicking a two, even if it popped up quickly and treacherously between ones. Lynda watched, scribbling notes.

The Markrams had arrived in Toronto the day before. When Henry began taking an interest in ADHD and autism, he inevitably came across Lynda and Michael Thompson, a psychologist and a child psychiatrist, respectively. The two of them ran a private ­hospital, one of the most hopeful places for ADHD in North America.

Lynda’s story was remarkable. Her love of the German language had brought her to Hannover, in Lower Saxony, as a young teacher. She admired one of her students there. He was highly intelligent, had great marks for class participation, but tested miserably. What’s more, he was difficult to the point of being out of control. The other teachers wanted to kick him out, but Lynda fought for him. He simply had to get a chance to graduate. She lost that battle, and that’s when she decided to become a child psychologist. Her dissertation dealt with Ritalin and its effect on children with attention deficit disorder. She met a man, a psychiatrist named Michael, who himself had traits associated with ADHD. The son they had together developed the disorder. When he hit puberty, he slipped away from them almost entirely. Everything bored him. He was distracted. He had to drop out of public school, enroll in a private one. The only class where he showed any promise was PE. Maybe he’ll go pro, the PE teacher said, trying to console them.

How can we help him? Lynda and Michael wondered. They didn’t want to give him Ritalin, which is prescribed to three of every four children with ADHD. Lynda knew all about its side effects from her dissertation research. Ritalin can make you drowsy, dizzy, and a whole lot more. And it doesn’t cure you. It merely dulls the symptoms, and if you discontinue it, you’re as bad off as before.

She heard of a new, unlikely method: neurofeedback. Patients learn to steer their own brain waves. Mainstream doctors considered it quackery. Epileptics and people with ADHD swore by it. She wanted to give it a try. What did they have to lose? Her husband, Michael, took part in a workshop. They wired up his head and sat him down at a computer. A bar appeared on the screen. When Michael strained his attention, the bar rose, and when he got distracted, it sunk. The goal was to balance the bar somewhere in the middle.

After several treatments, Michael felt better. Excited, he called his wife: “There’s something to it.”

They moved to the United States for a year to learn how to do it themselves—no one in Canada offered that kind of hocus-pocus. Their son learned it too, and his grades improved. Soon he was able to leave private school and transfer back to a “normal” one. He graduated with honors, went to Penn State, and became a well-known sports psychologist. Many studies would go on to prove the efficacy of neurofeedback. Even the American Academy of Pediatrics would eventually acknowledge it as a viable alternative to Ritalin. Henry couldn’t have known that this would happen back then, in the year 2000, but he did know that all of today’s standard practices had once been considered experimental. He’d always been drawn to professors who thought outside the box.

In Toronto, the tests continued, and a few days later, Henry and Anat were sitting back at Lynda’s desk. “So,” she began, “we did all the tests and have arrived at a diagnosis.” Henry’s pulse rate rose. Anat went pale.

“We did a picture-vocabulary test and found that, linguistically, Kai is indeed a bit behind. Eight months or so. His scores line up with the average results of a child who’s four years and nine months old. I’m not worried about that. It may be related to the fact that the test was in English. Something else, though, made me think. Remember the test where Kai had to click a button when he saw a certain number? He hesitated and made no mistakes. That’s not how children with ADHD respond to the test. They’re impulsive, click intuitively. Contrary to what some colleagues may have said, Kai does not have ADHD.

“In the early years,” she continued, “autism is often mistaken for ADHD. In both cases, children have trouble focusing. You can tell the difference when children interact with each other. Autistic children have a harder time with that. They often talk only about their own interests or seem like little professors. They’re also very sensitive. They can’t stand noise, labels in their clothing, someone combing their hair. Their motor skills are often bad. And they disappear into their own world. Now, people with Asperger’s do seek contact with others. They just don’t know how to go about it. Children with Asperger’s often speak like adults. And they take everything literally. If you say, I’ll be there in a minute, they will hold you to that. When they get mad, they’re hard to calm down. They’re honest, naive, wonderful people—if you treat them right. The three most important rules are as follows: Be nice. Be nice. Be nice.”

“We have developed a method to ascertain if someone has autism,” Lynda said finally. “We monitor their brain waves, and if a particular one breaks away, that points to Asperger’s. And that’s the case with Kai. Other forms of autism could also be at work here. Kai is absolutely a candidate for neurofeedback. The question is whether we can convince him to do it. He has to want it. Ritalin is certainly the wrong way. It makes everything much worse for autistic people.”

Henry sat there silently. He heard what she was saying. He didn’t hear it as a doctor. He wasn’t thinking like a doctor at that moment. He was sitting there as a father—feeling small, vulnerable, at the mercy of Lynda’s words—and once she had finished, silence filled the room and his insides.

When Henry and Anat left, the word autism followed them, at once silent and shrieking.

The same diagnosis can elicit profoundly different reactions. Some people are overcome by fear and sadness. They never lose that feeling. They never return to their old life. They are changed. There’s one life before the diagnosis and another afterward. If all goes well, and the disease is at least contained, time might bury those feelings deep down, but they never go away.

Others experience the diagnosis as a liberation. Those tend to be the people who have been suffering for longer but didn’t know from what. Nothing demoralizes you more than an enemy you can’t see. They feel relieved that their adversary has finally shown its face. They can do something about it now. Fight or flee. For a while, they manage to leave the fear and sadness behind them. That’s what happened to Henry.

“It felt like our journey had finally come to an end. Now we knew what it was. Sure, in retrospect we didn’t really know, but it felt that way. When you hear the statement, ‘This is it,’ you’re so appreciative that someone knows what’s going on. You assume they know how to go from there.”

They had suffered for so long, each in their own way. Anat protected Kai, showered him with love and understanding; she fled inward, she slowed down. Henry’s despair drove him out into the world, into the lab, into libraries; he accelerated. “His father seems agitated, hunted,” Lynda noted in her case history. Like all parents with children who suffer, Anat and Henry wished they could bear Kai’s burden for him. That would have been easier on them than watching helplessly. Parents are meant to protect their children. Nature arranged it that way.

Lynda had given them hope. “It wasn’t a bleak diagnosis,” Henry says. The two of them felt as if they had finally arrived, like at the end of a long journey when you arrive at the hotel at night and just fall into bed. You can unpack the suitcases tomorrow.

They decided to give neurofeedback a try. It would be fun for the girls, like those drawing classes in India. Everyone participated, steering bars, dots, cars, and airplanes with the power of their minds, dashing through the overgrown brain maze. Only Kai refused to do it. The helmet hurt his head. He found the gel under the electrodes gross.

His parents’ outlook darkened again. Their relief turned out to be temporary. They were far from the end of their journey. It was just the beginning.