5
The Suspicion
No one who meets an autistic child
is unchanged by the experience.
In time, it became harder for strangers to reciprocate Kai’s love. This was painful because Kai still loved them. He still ran over to neighbors, to pedestrians, to the old folks on the benches. He didn’t hug them anymore. He had learned that not everyone liked that. He talked to them, as his language teacher had taught him, syllable by syllable: “Hello. I’m Kai.”
He was five years old now. His curls were even curlier, his eyes bigger, his nose even stubbier. On sight, strangers still greeted Kai with a smile. But his words didn’t have the same magic as his hugs. The more he said, the more people turned away from him. Henry and Anat saw it coming, the ungodly moment when the look on people’s faces started to change. Kai noticed it too, but he didn’t let that hold him back. He wanted to keep his friends close and ended up scaring them away altogether. He stayed behind, alone, angry at himself and the world. This hurt Henry and Anat terribly.
It wasn’t hard to recognize the flaw; it wasn’t hard to see why people looked at Kai differently now. Something about him screamed, “Me, Me, Me!” Kai’s world, which had once revolved around other people, now revolved around himself. The charm of his idiosyncrasies was wearing off. The kind of strangers who had once praised him as exceptional now whispered, “What a strange kid.” They didn’t know what to make of him.
Henry and Anat had hoped that preschool would do Kai good: new friends, experienced teachers, fresh discoveries. They enrolled him at a so-called open school, a democratic school if you will. Each child could decide for themselves whether they wanted to spend time learning or playing, whether they wanted to remain in kindergarten or actually go to school, whether they wanted to play in the sandbox or discover the wonders of numbers and letters. Every child could learn at their own pace.
Henry and Anat started to notice the way the other kids were developing. They left the sandbox for the blackboard; toddlers became schoolchildren. Only Kai stayed behind, still the little boy who followed airplanes in the sky, who only wanted to cuddle and listen to lovely fairy tales. The teachers started treating him differently, charitably, like he was slow. Kai stayed in the sandbox.
The other kids still liked him. But even if they showed up for his birthday, Henry and Anat realized they were no longer really his friends. Indeed, they couldn’t be. Kai didn’t see this, but he felt it. He courted them more intensely, offering them toys, talking at them. But it was no use. Eventually, the tears started to run, and he withdrew to his room, stranded between two worlds of friendship, one jam-packed with everyone who had ever greeted him, the other gapingly empty. He had the most and the least friends. He was the loneliest boy anywhere.
One day, Kai came home beaming. Anat was pleased to see this: “What’s going on with you?”
“Me and Jacob threw stones,” Kai said.
“Stones?”
“Yes, at cars.”
Kai didn’t know what he was doing, but his friend certainly did. A few of Kai’s classmates had started taking advantage of him. They saw that the teachers treated Kai differently, that they let him get away with everything. They got Kai to do their bidding.
Who threw the stink bomb? Kai.
Who broke the window? Kai.
Who threw the fireworks at that group of kids? Kai!
The fireworks caused a huge outcry. Kai never could have thought of that by himself. He was afraid of fire and loud bangs. He couldn’t stand noise.
What would become of him? With every inch Kai grew, their worries grew also. He started throwing tantrums. For no apparent reason, he would hurl himself to the ground, shrieking, flailing, pounding his fists. They had stopped taking him to the movies a while ago. On public transport, you couldn’t stop him from talking to every single person, from the sleeping drunk in the back all the way to the bus driver.
Kai was also becoming very particular about food. There were few things left that didn’t offend his increasingly refined nose and palate. He still ate white rice; meat that had been carefully rinsed of all sauce; sandwiches with peanut butter and cottage cheese; and cornflakes, unless Mom had poured a new brand of milk on them (“It tastes different”). In preschool, it took months for Kai to try the cafeteria food and sample a few macaroni.
This was supposed to be ADHD?
Henry kept noticing other tics. Kai took everything literally. If his sister said, “My ears are burning,” Kai looked at her with wide eyes and screamed: “That’s not true! You’re lying!” This quirk often led to disagreements. Other children often said things they didn’t mean. Kai took this to heart: his friends were lying to him!
Kai developed an almost manic love of technology. He immersed himself in computer games, constructed LEGO towers that deserved architectural prizes, and completed jigsaw puzzles so quickly it took Henry’s breath away. He didn’t even consult the picture on the box. He just looked at the shape of the tiles. If Henry was in his lab until late and called Kai to wish him good night, his son only talked to him about his current puzzle. What’s more, he spoke as if his father were in the room and could see the puzzle too. Kai didn’t seem to get that they were speaking over the phone. That’s almost autistic, Henry thought. He couldn’t be . . . ?
The World Health Organization classifies autism as a disease, a developmental disorder. Its cause, Henry had learned in college, is unknown. There are more than sixty theories seeking to explain the origins of autism. It took until the end of the twentieth century for a consensus to emerge. Certain people are genetically predisposed to autism. It is likely triggered by environmental factors, such as alcohol, mercury, or medications, when the brain is developing in utero. There must, however, be another factor. Why else would there be cases of identical twins where one child is autistic and the other is not, though they share the same genes and shared the same womb? It follows that what happens in the years after birth can also be decisive.
According to most influential books on the subject, autistic people are not social creatures. They cannot empathize with other people. They aren’t even particularly interested in them. They are reclusive and avoid eye contact. Many of them have compulsions. They place objects in a row, repeat sentences, or constantly rock back and forth. They hate change.
Autism manifests in various ways. Experts speak of a spectrum. If you know an autistic person, you know one and not all of them. Each person is different. Some require foster care. Others are superstars of music or math but are incapable of going shopping by themselves. Some live independent lives and resist being labeled sick or disturbed. To them, autism is a characteristic, a feature, like dyslexia or being left-handed.
Asperger’s is particularly well-known. It is considered a mild form of autism. People with Asperger’s often find a place in the world. Some have so-called island talents, also known as “savantism.” If anything, Henry thought, Kai has Asperger’s.
There were telltale signs.
His difficulty with language.
The way he talked past people.
His inability to understand figures of speech.
His clumsiness.
His tantrums.
The fact that he felt less pain than others.
Autistic people have a counterintuitive pain threshold. They can be seriously injured and not complain at all, but they can also shriek with pain at the slightest touch.
Ever since psychologists Leo Kanner and Hans Asperger first wrote about autistic children in 1943, their fate has touched people’s hearts. It is as if these children were from another planet. They seem to lack that essential human quality, the ability to socialize. Their eyes stray into the distance. They hardly speak, and when they do, their expression remains static. It’s as if they lack empathy, have no desire for closeness. They don’t react when their parents smile, don’t lift their arms when their mother reaches in for a hug. No one who meets an autistic child is unchanged by the experience.
As much as the fate of these children has moved people, they have been stigmatized even more. In the Third Reich, autistic people were sterilized or killed. After the war, society locked them away and blamed their mothers for their condition. Until well into the 1960s, it was widely assumed that motherly cold-heartedness caused this form of emotional withering. This theory spawned a medical term: refrigerator mother. Henry contemplated how this must have compounded the pain of these women. Preoccupied by his suspicion about Kai, he had pulled all his old textbooks off the shelf. He soon returned them, relieved of his worry. Kai couldn’t possibly be autistic.
Rituals are an essential characteristic of autistic people: that famous tendency to organize things, to constantly repeat the same actions. Kai didn’t do that.
Autistic people were also known to avoid eye contact. Kai looked you straight in the eye. Autistic people were reclusive, didn’t approach people. That couldn’t be said about Kai. Henry didn’t know anyone who sought social contact as much as his son. Psychologists call this being “hypersocial.” A hypersocial autistic person? That was unthinkable.
No, that wasn’t it. But what else could it be? Henry decided to look into it himself. To that end, he would take a yearlong sabbatical in the United States. There was so much he wanted to know. What exactly is ADHD? What is autism? How can one help the children affected by them? What does science know about these conditions, and how is this knowledge being implemented in medical practice? First and foremost: What could he do for Kai?