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What Have We Done?

We say that autistic people lack empathy.
No, we lack empathy—for them.

Henry cried. The desert blurred before him. Thirteen years of searching. Seven years since the diagnosis. It had been a long, hard journey: Kai’s eyes in the clinic, his silence in kindergarten, his tantrums, San Francisco, Lynda. After the diagnosis, with the mystery solved, he had continued to work in the wrong direction. When you ask the wrong questions, you get the wrong answers. Powerlessness, impatience. But who can be patient when their son is suffering? The search had become a hunt, and no one showed him the way. To the contrary, all the experts and textbooks had led him astray. How lucky he was that Kamila, another searcher, had joined him. And now it fell like scales from their eyes. They understood.

“If God created the world,” Einstein once said, “his primary concern was certainly not making it easy for us to understand.” A scientist can never be sure, can never be satisfied. Progress is slow: you sneak from hunch to insight. It’s like one of those jigsaw puzzles that Kai was so much better at than his father. A scientist finds one right piece, then another, and can be happy if the two fit together, but you’re always far from seeing the big picture. You keep searching, keep trying new pieces. It never stops. This time, however, though important pieces were still missing, they could see the big picture. This is usually an unforgettable moment for a scientist, but to Henry it was a mere sideshow. Something far greater had eclipsed it: after thirteen years of trying, he finally understood his son. It was as if he had just gotten to know Kai. If only his son had been there with him, he would have hugged him. The hunt was over. Peace filled him.

And just as they sat there, with the sun sinking before their eyes, one thought after another rose to Henry’s head. Oh, that’s why Kai had done this and that. But not just Kai. He began to understand other children, like his friend’s daughter who suffers from autism. Every time she was supposed to shower, a drama unfolded. She resisted like a cat, scratching, biting, water-fighting. Her angry father scolded her: Can’t you just take a shower? It’s just a shower! Everyone showers! Don’t make such a fuss! It’s only water! But she wasn’t making a fuss. The drops of water felt like hot needles to her, torturing her. And since, like many autistic people, she didn’t talk, she responded with her hands and feet, trying to save her skin with desperate force. Was that so hard to understand?

Yes, Henry thought, that’s what it’s like for parents and their autistic children. They speak different languages. They experience the world in such a different way. And while these thoughts unfolded in him, and he was thinking of the other father, it came to him: And what did I do? What have I done to Kai?

Going to the movies.

The vacations. Every trip was one too many.

India.

Death Valley. Where Kai refused to walk another step. They had to carry him for miles.

Henry couldn’t pursue that train of thought. He felt a deep sense of guilt. He felt the pain he had caused his son.

His awareness of Kai’s struggle had evolved decisively. First, they understood it; now they could empathize.

Henry and Kamila realized that things were upside-down. Instead of dwelling on the supposed mind-blindness of autistic people, we should be discussing our blindness to their needs. Rather than talking about autistic people’s flaws, we need to focus on society’s flaws. “We say autistic people lack empathy. No, we lack empathy. For them.”

It cannot be said often enough. “We say autistic people lack empathy. No, we lack empathy for them.” Could Kai ever forgive them?

As they wondered about this, another terrible insight dawned on them. Perhaps Kai could forgive, but he certainly couldn’t forget. Henry and Kamila knew all too well how the animals in the lab had behaved. Not only were their feelings amplified and their senses overdeveloped, but they also couldn’t forget. Every trauma, every minor pain branded them.

Again, they thought of Kai, who at the age of five could snowboard better than Henry, and now, after several falls, refused to ever get on a board again; who foolhardily rolled down the slope in India and now hikes only with the utmost caution. Fear guides him through life and away from everything his father wanted him to experience. Every overwhelming experience is a bad experience. And you cannot make up for it.

“We only had one thought,” Henry says in retrospect: “it’s too late.”

Though they stayed on in South Africa, their vacation was over. From then on, it was all about the article, typing and writing page after page in English and scientific jargon, supplementing their findings with numbers and tables, sources and studies. The intense world theory of autism. Translated into everyday language, the piece began like this:

Intense World Syndrome

Until now, no theory could explain autism in its varied manifestations. We are proposing such a theory. It is based on cell research and behavioral science.

Autism is multifaceted and ranges from disability to superability, with the latter being the exception. Most autistic people are considered stunted. Building on that assumption, established medical treatments have attempted to stimulate the brain.

We believe the opposite is true. The autistic brain is not stunted—it is too powerful. It is excessively interconnected and stores too much information. Autistic people experience the world as hostile and painfully intense.

Henry and Kamila explain how they went about their research. They write about cells and molecules, about the cerebral cortex and the amygdala. They do not mention Kai.

The word they use most frequently in the piece, 221 times, is the prefix hyper-, meaning “above, beyond.” And it’s easy to see why. So much about the autistic brain is above and beyond the norm: how stimuli overwhelm them, how the cells interconnect, and how their brains can change.

Infants are programmed to seek out stimuli, to absorb the world. They imbibe breast milk and information, and both are vital to their future growth and development. Kai absorbed everything. And he did so through broader pathways than normal children. That can go well, for a while.

Until they start to feel overwhelmed. Only those who are well-acquainted with the child can see the change. There’s something wrong with its eyes. Its linguistic development starts to lag. The child doesn’t feel pain. The jumble in its head prevents it from sitting still.

No one saw Kai’s suffering. He seemed happy. He was drawn to the lights in the hospital, sought contact with others as an infant, shrieked for joy in India as he rolled down the slope. All this was a festival for his senses. He matured in fast motion. The autistic brain matures—meaning grows—unusually fast. The more stimuli there is, the more growth. But a system that grows too fast is destined to fail. Every biologist, sociologist, and management consultant will tell you that.

The autistic brain eventually collapses in on itself. Exposed to all that overstimulation, parts of the brain get out of control. Some areas overheat; others shut off entirely. The brain becomes unbalanced. And since the world is what your brain makes of it, autistic people live in another world. Their world is limited and at the same time incredibly vast.

Flooded with stimuli, the autistic person can only perceive the world in snippets. They focus on these snippets with excessive attention and a frighteningly good memory. This leads to savantism but also to social withdrawal and repetitive behavior.

This is important and points to a fallacy in many old studies. Scientists have often shown autistic people pictures of faces while observing the part of their brain that let them recognize those faces. If there was no discernible reaction, it was seen as supporting the scientist’s conclusion that their brain wasn’t working properly, i.e. autistic people suffered from a neurological deficit. It follows that one could cut out that part of the brain to see if they could live better without it. All that is wrong, says Henry. Many autistic people can’t recognize faces because their brain is overloaded, limiting its application. If you show an autistic child the faces of its favorite superheroes, instead of human faces, the apparently dead part of their brain is suddenly animated. It sparkles and rejoices like our brains do when we run into a long-lost lover. The feeling is indescribably intense. The child’s brain is so preoccupied with these sensations that it has no space for other faces, for people who aren’t part of its world.

If autistic people have a hard time dealing with other people, it is not because they cannot interpret their feelings or cues. Autistic people are neither oblivious to feelings, nor do they lack empathy. They just experience the world as so painful that they retreat.

Their wealth of emotion makes them seem devoid of emotion. Three areas of the brain are primarily affected: the frontal lobe, the neocortex, and the amygdala. In some cases, the autism is more in the frontal lobe; in others, it’s more in the cerebral cortex. In some cases, the cells fire particularly wildly; in others, only a bit stronger than normal. All forms of autism can be explained this way—the first overarching explanation. The children who become the most reclusive have the most powerful brains. It’s infinitely tragic: the kids who feel the most are the least capable of expressing it.

Kamila and Henry use the technical term hyperplasticity in their essay. Plasticity is Michael Merzenich’s area of expertise, Henry’s colleague from San Francisco. His theory that the brain can be changed by thoughts alone was long dismissed, until it was proven that the brains of sea nomads adapt to life on the water. Plasticity is the basis of all learning. Like the brains of these sea nomads, the brains of autistic people adapt. They block out dangers: the noisy world, us.

In 2017, ten years after Henry and Kamila wrote that a lack of eye contact doesn’t imply a lack of interest, Nature magazine published a study by a neuroscience institute in Boston, a partner university of Harvard, that used new technology to inspect what occurs in the amygdala when autistic people look someone in the eye. The closer they look into the other’s eyes, the stronger their brain reacts to it. The scientists write:

Individuals with autism spectrum disorder often report that looking in the eyes of others is uncomfortable for them, that it is terribly stressful, or even that “it burns.” Traditional accounts have suggested that ASD is ­characterized by a fundamental lack of interpersonal interest; however, the results of our study align with other recent studies showing oversensitivity. The results have potential clinical implications: during behavioral therapy, forcing individuals with autism to look in the eyes might be counterproductive and elicit more anxiety.

Even a look into happy, attentive eyes only arouses one thing: fear!

In their research, Henry and Kamila found themselves on the same path that Kamila had been treading since her time at university. No, not inductivism: they didn’t just do experiments, tabulate results, and try to derive a law from them. Instead of trying to confirm their thesis, they tried to refute it. They tried to square it with reality. For two years, they tested their theory against other studies again and again. No mistakes now. Kai’s future was at stake, not to mention their reputation. Their theory had to stand up to scrutiny and had to explain why other studies had reached different conclusions. They took the other studies seriously. It was inconceivable that so many great scientists, whose books they had read, whose lectures they had visited, could have been wrong about everything. The lab results of the most important studies had to be in line with their results. Kamila had read through hundreds of papers. Indeed, the data was consistent, but their interpretation was quite different.

Henry and Kamila’s work was a revolution. It was also an affront: to the American Psychiatric Association, which classifies autism as a mental disorder in their famous DSM manual; to the adherents of the mind-blindness theory, which says that autistic people can’t empathize; to the research scientists who surgically removed the emotional centers from monkey’s brains; to the corporations, whose autism medication stimulates the brain. None of their data or numbers could undermine the Markrams’ theory.

Henry and Kamila didn’t question that autistic people have trouble later in life empathizing and communicating with people. They only objected to the popular assumption that autistic people lack interest in those exchanges, as well as the notion that autistic amygdalas underperformed and had to be stimulated. Autistic people are very interested in social contact, but unfortunately their amygdala works so hard that they avert their gaze to avoid blowing a gasket. Their brains do not need to be stimulated. They need to be calmed down.

The guardians of the old doctrine knew all too well that autistic people were sensitive—this had been stated many times. But they saw this as one among many symptoms, another hint that a child might be autistic. They didn’t dwell on it further. Only years after Henry and Kamila’s breakthrough did they start to place more emphasis on it. The American Psychiatric Association made sensitivity one of the core criteria for autism in their famous DSM manual.

The decisive flaw in the old doctrine was not its conclusion but its initial outlook, the emphasis on deficiency. If you’re on the wrong track, you’ll never make it to the finish line, no matter how far you run. What Kamila had learned in her time studying philosophy had been substantiated: nothing is objective. Expecta­tions guide results.

Henry and Kamila had also started in the wrong place. They would have never arrived in the autistic world, if Kai hadn’t shown them the way. Everything had been turned around. They started in the hope of bringing him into their world. In the end, he opened up his.