For a long time, it was thought that autistic children lived in a poor, own world. The researchers Kamila and Henry Markram have proved the opposite – and thus changed the life of their son Kai.
How people looked! Kamila Markram was ashamed. Every day the same game: The platform, the white line, her stepson Kai, seven years old, looked at her. He was sweet, that smiley boy smile. “Kai,” she warned. One foot over the line. “Kai! The line is taboo.” The second foot went over it. “Not over the line!” He stepped to the edge and the people looked, Kamila jumped up, grabbed him by the ear, and Kai screamed. “You have to hear!” He screamed louder. She had just grabbed him lightly. Into the train.
“I’ll tell my dad.” “Well, tell your dad.” When Kai realized that it did not work, he started to rock his foot, he looked at her and bobbed until he bumped her knee. “Kai! Leave that.” And so it went the whole way to school. She would have liked to freak out in 2003, Kamila Markram says today, but she wanted to take Kai for herself, and so she denied the trouble: breathed when they were home, at Papa, the Kai told the same, how mean Kamila was. Henry Markram looked at her guiltily, he knew his son, wild curls, wild spirit.
The neuroscientist from Frankfurt got to know the brain researcher Henry Markram at a congress – they shared the same interests not only privately
At a congress for brain researchers in the Alps, Kamila Senderek, a neuroscientist from Frankfurt, Germany, met brain researcher from South Africa in 2001, Henry Markram. He was tall, his voice gentle, at noon they talked about “synaptic plasticity”, in the evening they stood at the bar, kissing goodbye. A pendulum life began, Kamila researching at the Max Planck Institute in Frankfurt, Henry in Israel at the renowned Weizman Institute, until they went to Lausanne in 2003, to the Polytechnic University, where Henry Markram launched a major project on brain research: the human To simulate the brain with supercomputers to really understand diseases such as Alzheimer’s, Parkinson’s or even depression.
After initial successes, the EU promised a billion euros grant. Markram, who has received numerous awards and was courted by elite universities, became world-famous outside academia. Kamila got to know Henry’s family. The divorced wife Anat, the daughters Linoy and Kali, and Kai. “He’s a little different,” Henry had said. Autistic.
Kai has always been different: he actually saw the world with different eyes
Autism is a developmental disorder, created in the genome, and is probably triggered in the womb, for example by medication. Autists find it hard to interact with people. They avoid eye contact and are difficult to empathize with. Some sufferers need care. Others are superheroes in mathematics. Still others live an independent life.
Kai had Asperger, a milder form of autism. When Kai was very small, people loved him for being different. Often he ran to the people, the postman, to the old people sitting on the benches. Kai opened his arms and wrapped her legs without saying anything. He spoke with his hands. And beamed from the inside. Kai, 24 today, had these wide eyes from birth on, constantly sensing sounds and lights. Such a look had never seen Markram, who had worked in a children’s ward while studying medicine. Kai looked almost purposefully. That was impossible. Only those who come close to them see babies sharp. The doctors examined him. “All right,” they said, and Henry’s fears turned to pride. Kai was the station’s fastest child.
Kai was open like no other child: He spoke with his hands and embraced even strangers
Kai grew up to be a very own child. In the hoard, he walked with his hands behind his back from table to table. He spoke only the essentials. Did he want to play with a child, he did not ask, he touched it. Often children thought he wanted to push them and pushed him back. Only his sisters seemed to understand him. “He was a bit wild,” says Linoy. At some point he did not embrace the people when he ran to them; He had learned that not everyone likes that.
He began to circle more and more around himself. He became lonely and his parents began to worry. ADHD , the psychologists said, because Kai could not sit still. Henry had another suspicion. Kai smelt of food, ate only what his nose liked. He took everything literally, one said, “Quick, my hat is burning,” he looked at him and shouted, “You’re lying.” He loved putting puzzles, he did not look at the picture, only at the shape. Almost autistic, thought Henry. No, the doctors disagreed as openly as Kai went to the people!
I had the feeling not only to fail as a father, but also as a brain researcher.
Kai became more difficult and Henry more helpless. “Most people thought I could help my child more than other fathers,” he says. “But I fainted, feeling like I failed not only as a father, but as a brain researcher.” He took a break, one year he went with his family in the US. What does research on autism know? Little, Henry realized. On vacation, Kai approached the cobra of a snake charmer and patted her. Finally, after a long search, just before Kai came to school, he was diagnosed.
That was two years before Kamila entered her life. Kamila Markram, 43, is sitting in her office in Lausanne, her eyes are smiling, her face is soft, her voice changes between German and English; the more scholarly it becomes, the more English its sentences become, the more it goes back in time, the more German. She studied philosophy in Berlin, a lecture “Philosophy of Science” made her want to become biopsychologist. “I wanted to get into real life,” she says, exploring how sending and firing neurons in the head changes behavior. Her grades were outstanding, so she applied to the Max Planck Institute for Brain Research. She was about to do her doctorate when she met Henry. After moving to Lausanne she went to the newly founded Brain Mind Institute,
Kamila and Henry began to work together – was Kai perhaps quite different than research claimed so far?
Kai made it difficult for Kamila. The first year she was covered in bruises. Still, she loved this boy. “Kai pushes you to your limits, but just as easy with him, he’s special, but also warmhearted, open, if you pay attention to him, he’s very grateful,” she says. She had more patience than Papa, put on the right thing for him, the soft sweater, brought him to sleep, with the right songs and the pillow in the right place.
Henry kept talking to Kamila about Kai. He wanted to understand him. He followed the trail of a colleague he knew from Berkeley. The idea: nerve cells can amplify or inhibit signals. The signal to pull your hand off a hot stove strengthens your brain. Patting a cobra, as Kai did, inhibits it. Was the error here? In cells that do not inhibit? Kamila and Henry started to work together. Henry, the biophysicist, looked in detail, examined how impulses moved in cells. Kamila, the biopsychologist, looked at the big picture of how emotions move in the brain. It was a bit like the superheroes in comics. They united their strengths. But they became a power only through Kai. The three of them took a path that no one else in autism research had ever gone before:
A first insight: Kai has high-performance cells that enhance his perception of the world
Kai’s mother, Anat, was there for Kai, so Kamila and Henry could spend the nights exploring. They made experiments with autistic rats. Without result, over two years. Henry wanted to throw it down when his colleague Tania Rinaldi looked at those cells that amplified signals. And they discovered: These were high-performance cells, incredibly adaptive, the impressions raced through the brain.
Kai must therefore live in an immensely intense world, said Kamila. So intense that she became an enemy. Everything was amplified, glistening, noisy, stinking, scratching; No wonder that Kai how many autistic children cried when combing, when dressing, when bathing, a hot shower turns into a thousand hot needles. The intensity is unimaginable. Not only did the autistic animals feel more, they did not forget either. Just as Kai never forgot when he was sitting where Kamila forced a leaf salad on him. Every pain burns, nourishes fear. The retreat was not the fault, it was the reaction.
Henry Markram and his wife feel guilty: Did his childhood hurt the boy even more?
This realization contradicted the old doctrine. She saw a deficit in autism. The research looked like monkeys were operating out of the emotional center and trying to get the brain going again. Henry counted 625 patents for autism drugs, all stimulated the brain. But they had found no deficiency, but an excess. Kai was a boy who felt too much. Kai also disagreed with the proposition that autistics lacked empathy. Why did Kai manage to poke Kamila like that?
After seven years of research, Henry and Kamila saw clearly. And it hurt, because they recognized their mistakes. “We should have left Kai at home as a small child,” says Henry. “Gently talk to him, raise the lights slowly, never approach from behind, just touch tenderly.” But they flew with him around the world, pushed him into MRI tubes, stimulated the brain. Everything too loud and colorful. They felt guilty. Was it too late? They researched for another eight years. And found that the fears of mitigating the retreat can be avoided. An autistic child should grow up in a normal world, but with only as many stimuli as it can handle without stress. It helps at any age, but especially in the first six years, when the brain undergoes the greatest development.
There is criticism of their “Theory of the Intensive World”: Autism is too complex to explain it alone. But new studies support them. Physicians from Toronto and Cleveland found that the brains of autistic children at rest have to process 42 percent more information than normal children; They expressly praise the work of the Markrams.
It is not the autistic that lacks empathy, but empathy – for them
Two years ago, Henry and Kamila advised the creators of the autistic documentary “Life Animated,” which was nominated for an Oscar. It is about a child who – contrary to the old doctrine – was left rituals: watching Disney movies. One day his father finds out: When he appeared as a movie character, his son talked to him. He had gone into the child’s world and so it slowly came out. “People say autistic people lack empathy,” says Henry. “No, we miss her, for her.”
Lausanne, in the premises of Frontiers, Kamila Markrams publishing house, which she leads and founded with Henry. It is located on a hill, overlooking Lake Geneva. Frontiers is an online publisher, publishes scientific journals and studies. 500 employees, international offices. The idea of the publishing house: Scientists publish their findings in professional journals, the studies are checked and freely made available via the net. Kamila has won several entrepreneurial awards for this. Her first publication in 2007 was her work on autism. They have stopped wanting to pull Kai into their world. They protect him from too much stimulus, have chosen his school after, their free time, they plan with him the day, keep every promise.
This is what Kai’s life looks like today. He is not cared for but needed
Kai lives in Israel today, with his mother Anat. As often as he can, he flies to Lausanne, also for the weekend. He likes to come to the publisher, especially on Fridays, when there are small celebrations in the kitchen and when he plays music. In anticipation, he sits in a niche, fills the mobile song lists. He has a slim face, beard, wears a wide T-shirt. He laughs, looks into the eyes of the other person, and talks about bowling, his music. With excitement he swallowed syllables. “I feel things differently,” he says. “In the past, I used to have a lot of garbage, but I grew up.”
After the special school, where he graduated in some subjects, Kai worked in an archive, now in the court, in the security. He calms the atmosphere in the courtroom with his warmth, his otherness, says Kamila. Kai is not cared for, but used, is part of society. At 17 o’clock the kitchen fills up. Chatting, laughing, champagne and vegetable sticks on the table. Kai plays pop, then three own songs he has recorded. An employee picks up his saxophone and agrees. You can see Kai grow. He starts singing, Hebrew, about love, about going bowling with dad. He raises his thumb, Kamila smiles and Kai grows even more and goes to his father, who teases him right away, because he sings cuddle songs since he has a girlfriend. Kai laughs and plays with Henry’s shirt buttons. Kai knows the girl from school. “She’s a bit fat,” he says. “But I love her as she is, you can not change anyone.”