Experts used to say that autistic people lack empathy, that they hardly have feelings. But after years of studying his own son’s disorder, neurologist Henry Markram concluded that the opposite is true. His son Kai doesn’t feel too little, he feels too much. His senses — what he sees, hears and feels — are too fine for this world. He withdraws to protect himself from overstimulation. And this theory is finding ever more advocates. For months, journalist Lorenz Wagner accompanied the Markram family. Now he tells the story of a moving father-son relationship, which delves into the father’s research, and vividly captures his groundbreaking findings about autism and previously unknown sides to the human brain. THE BOY WHO FELT TOO MUCH is a fascinating book that lets us see autism in an entirely new light.
Lorenz Wagner: You are one of the best-known neuroscientists in the world. How was your work advanced by your son’s autism?
Henry Markram: At first, not at all. People tend to think that as a neurologist I could help my child more than other fathers. But I felt even more powerless. I didn’t know what to do as a father or as a neurologist. And when I delved into the existing material, I became painfully aware of how little we understand autism.
LW: So you took the research into your own hands. How did Kai change your work?
HM: In the past, working in the laboratory was enough for me. I conducted detailed studies, about nerve cells for example. Now I started asking questions: What good is my lab work? How much of it affects matters in a hospital? Does it help people like Kai? I realized how far estranged my work had become from what had first drawn me to the job. When I started my studies, I wanted to be a doctor, I wanted to help people. When I went into research, I wanted to understand the brain and its sickness better, to help heal them. I returned to that. It was no longer about scientific research and a thirst for knowledge. It was about my child.
LW: What did your research look like?
HM: I took a year sabbatical, travelled to meet experts around the world, visited clinics in the USA, Canada, Asia. I wanted to know: What is the current state of research? How are doctors treating it? I assembled a laboratory in Switzerland, a team of experts, including behavioral scientists. We did studies on autistic rats. We examined neurons in different areas of their brain, while observing their behavior. We compared our findings with those of the most prominent studies. But they didn’t overlap. Initially we thought, okay, we must be doing something wrong. But then there was Kai. I saw him every day. And he also didn’t behave as autistic people are supposed to, according to studies. We started questioning the established knowledge. So Kai was doubly important. Without him, we wouldn’t have started the study at all. Without him, we wouldn’t have had the bravery to trust ourselves rather than the existing consensus.
LW: What was the problem with the existing consensus? Why didn’t it apply to Kai?
HM: They always said that autistic people don’t have empathy. That autistic people couldn’t approach people. That they couldn’t put themselves in someone else’s shoes. But that wasn’t true of Kai. He loved people, walked over to them, hugged them and talked to them. And he could read what was happening in your head. He looked at you and saw what you were thinking. If he wanted to annoy you, he would balance daringly on a street side curb. He knew what reaction he was going to get.
LW: Your research had a surprising conclusion, which stands in opposition to the established consensus. Could you explain the difference?
HM: The problem with the autistic rats was not that they were unfeeling. To the contrary: the areas of their brain where perception and feelings come from were overstimulated. Their impressions sped through their brains, they were more pronounced. They weren’t feeling too little, but too much: the light was too bright, the sounds too loud, the water too warm. They developed fears, isolated themselves. The retreat wasn’t the disorder itself, it was a reaction to it. Measurements of human brains support this theory. We called it the Intense World Syndrome. Autistic people live in an unbelievably intense world.
LW: What does that mean for the way we deal with autistic people?
HM: Particularly children have to be wrapped in cotton wool. If we carefully introduce them to the world, it will allow many of them to live a relatively normal life. The important thing is that their world is predictable to them. That’s exactly what we did wrong with Kai. We took him to the movies, to ski, to India. It was always said that one should urge autistic people to break out of their routine. We wanted to open up the world to him. And in doing so, we actually closed it to him. He started to retreat.
LW: How happy were you about this breakthrough?
HM: It was more of a feeling of peace. Finally we understand autism. That is to say: finally we understand Kai. That changed everything. And it can change everything for other affected persons and their parents. One can do something about it now. But there is also a sad part: for Kai, this recognition came far too late. Once we started to realize how one needs to protect children, he was already a teenager. Much of that is irreversible.
LW: So it’s a tragic story?
HM: No, the comforting thing is: even if much is not reversible in his case, the daily routine has gotten much easier to manage. This new knowledge helps us avoid crises. We don’t, for example, say thoughtless things like: “tomorrow we’re going sledding.” Otherwise he will be standing at the door early in the morning: okay we’re going sledding; when are we going? And if we don’t leave at 9am, he will start flipping out. No, we tell him when what is going to happen, and we do it exactly that way. Or we prepare him that there could be deviations: okay, perhaps we’ll go sledding tomorrow. But first we are going to eat breakfast and rest for thirty minutes, and we will not leave before 11.
The next step is simulating a brain on a computer. I’m leading a project like that in Lausanne. In the long term, it could be the key to a cure. But we are just at the beginning.
LW: What was your most important finding in fifteen years of research?
HM: Kai taught us one thing: we, not autistic people, have to change. It is wrong to say that autistic people lack empathy. No, we have a lack of empathy — for them. That has to change in society and therapy.