8

Monica Is Crying

We want to find a cure, and that’s wrong.

Tania moved on and became a professor in her own right. Monica Favre, a young graduate student, joined the team. Her professor back home at Duke University had taught Henry’s work. Monica loved that seminar. She was a behavioral scientist and was fascinated how molecules and neurotransmitters can guide our behavior. During a visit to Switzerland, she paid the Markrams an impromptu visit. They talked, liked each other. “Why don’t you do your PhD here?” Kamila suggested. Monica dropped everything and started.

“Henry and Kamila have incredible possibilities,” she says. All the equipment, funds, and employees.

Yes, Monica thought, all would go well. She didn’t suspect that she would soon be standing in front of Henry and Kamila crying her eyes out.

Monica was tasked with reintegrating autistic rats into general rodent society, mitigating and reversing their symptoms. The efficacy of her therapy would resonate in their cells and their behavior. Over the course of a year, Monica prepared the test series. Which rats would she choose? What medication would she administer? What experiment would she subject them to? Everything had to follow strict scientific rules.

She settled on this experiment: She would raise autistic rats in two cages and expose them to stimuli. But in one cage the stimuli would be predictable, and, in the other, surprising. What would that do to the animals?

Monica got to work. She first had to breed the rats. She administered an injection on the twelfth day of pregnancy, just as Tania had done. Only this time, the rats did not become autistic. Day after day, Monica sat in that incredible lab, equipped with “incredible possibilities,” and didn’t manage to produce anything even remotely credible. To be honest, she’d achieved nothing at all.

She gave the injections according to plan, as Tania had recorded it, but nothing happened; it seemed the rats had become immune to the drug. It went on like that for months—she worked thirteen hours a day—and she hadn’t even managed to establish the prerequisite for her study.

Henry, Kamila, and Monica met on a weekly basis. At the beginning, Monica looked forward to these meetings. A weekly coaching session with a world-famous professor: What more could a medical student want? But over the course of those months, her mood shifted, and the meetings became torturous.

“So, what’s new?” Henry asked every time, and she sat there, staring at the ground. Even her wild curls seemed to hang cheerlessly. “I was in a downward spiral. I didn’t want to say anything or show anything to them. No data, no analysis, nothing. I went to the meetings and showed them nothing.”

Henry let her work. He saw from the start that Monica was good. It wasn’t her fault. “We have all been through what you’re experiencing,” he said. “Discoveries don’t come easy. It’s easy to devise a plan but realizing it can take some time.” He gave her little tips here and there. “Try this, try that.” Perhaps they were injecting the pregnant animals with another medication? The old brand no longer existed. Or they were procuring the rats from another breeder? The animals had another genetic structure. Such changes can influence the testing procedure. For the rats to become autistic, one had to inject the right dose at exactly the right moment. And the animal’s exact genetic predisposition could factor in, as well.

Monica looked at Henry gratefully. “Yes, that makes sense. . . . Yes, I’ll try that.” She didn’t want to give up that easily. Tania had also hit a rough patch in her research and ended up winning a prize.

Back to the lab, day after day, but the whole thing seemed jinxed. She tried everything, injecting a bit earlier, a bit later, injected a bit more, a bit less, waited for the animals to be born, but nothing, no sign of autism.

After a while, Henry and Kamila also started to worry. Kamila involved herself more, but her help didn’t change anything. Before she knew it, another year had passed without the test series even starting. They had one last idea. A vet should examine the animals. And indeed, he ascertained that the rats had worms. So that was it. Parasites can affect animal behavior, their drives and fears.

“It was a catastrophe,” says Henry. “We had to start over from the beginning.” The animal house was cleared, disinfected over six months, and new animals purchased. The third year passed. All Monica wanted to do was cry. She had given up everything—for what? “I reached my limit. I started asking myself: Is this worth it? I worked thirteen hours a day, sacrificed my personal life. It got to the point where I said to myself: I don’t need to be doing this. I promised myself: I’ll keep going even if it goes nowhere. It would be all right not to finish my dissertation.”

Once that was settled, having made peace with herself, she resumed the work, without pressure. She would try a few things she hadn’t tried before, new techniques from molecular biology. She was still excited to try the experiment with the two cages. But meanwhile, her personal life took a turn; she became pregnant, took maternity leave, and then calmly divided up her time again.

Her doctoral examination drew closer—it was four months away—and she had nothing to show for it, but she refused to fret. She would do what she could. Kamila and Henry were supportive.

And then the day came when the numbers, the cells, and the rats in their respective cages started doing what Henry and Kamila had written five years ago. Monica could hardly believe it. She called her mother.

She asked her to visit for a few weeks and look after her daughter, freeing Monica to immerse herself in experiments, in data and molecules, and sit unshowered in the lab or kitchen for days on end, working in her pajamas, watching the puzzle take shape. All she needed now was time, time to transfigure this giant idea into a study that could withstand all scrutiny, providing evidence that the intense world theory had real world utility. Those were hard months. The weekly meetings continued, but now they were a pleasure. It was like Henry had said: discoveries don’t come easy. He and Kamila were as excited as Monica. Henry’s voice still lifts when he talks about those months in 2015.

KAMILA: Monica made a huge contribution.

HENRY: Her idea with the cages was great.

KAMILA: We raised the rats in two cages, big cages that they could play and interact in. They both grew up with more stimuli than the classic lab situation. Not much happens in a lab, usually.

HENRY: Rats are very social. If you stretch out a fine-mesh net in the cage between two specimens, they immediately meet in the middle, and sniff each other through the net. Autistic rats don’t sniff each other; they avoid each other and prefer to play with wooden blocks. If you place them on an elevation, they get very scared and stop moving, while other rats will climb up anything and have no fear of heights.

KAMILA: Autistic rats don’t like change. And things did change in our two cages: smells, food, and so on. In the first cage, these changes occurred in a constant and predictable way.

HENRY: And in the second cage, the changes came unexpectedly.

KAMILA: Like in real life.

HENRY: We introduced balls into their environment, which were easy to exchange. Another color, another size, another material. The little rats couldn’t predict what would happen next.

KAMILA: We had the same setup in the second cage, but the changes were predictable because they occurred on a regular basis.

HENRY: We had to be very disciplined. We would introduce a new ball every Friday, a new smell every Saturday, a new wall in the cage on Sundays. And the results were spectacular. All their fears, all their feelings of confusion, were eliminated. They no longer avoided the other rats. They stopped playing with the wooden blocks and instead explored the other animals. And they did very well in our intelligence tests, for example, at recognizing and distinguishing between different sounds. They performed a lot better than before.

KAMILA: The same thing happened in the memory tests we did.

HENRY: Their strengths finally came to the fore. The more their weaknesses vanished, their fears, their rituals, the more their intelligence asserted itself.

KAMILA: The bottom line was that you can reverse the symptoms of autism.

HENRY: And prevent autism from developing. Monica’s work has supported our theory.

And now? How will things continue in 2019 and after? Henry and Kamila are once again standing at a crossroads. Their theory is established, receiving more and more attention, and the research continues, but they are stretched to near capacity. They don’t have enough time to conduct large-scale experiments with human beings and write more scientific papers. Their company, the science publisher Frontiers, is demanding; their other children, Olivia and Charlotte, are also around. Other scientists will have to build on their work, refine it, continue it. People like the research team at Harvard University, whose study demonstrated how important predictability is to autistic people. People like Ron Suskind, the Pulitzer Prize winner. His son, Owen, stopped talking when he was two years old and spent all his time watching Disney movies. It took Owen four years to break his silence. When his brother cried on his own birthday, Owen said, “Walter doesn’t want to grow up, like Peter Pan,” only to fall silent again.

Suskind understood that these movies could offer him a way into Owen’s world. He sneaked into Owen’s room, slipped a puppet of Iago, the parrot from Aladdin, over his hand and started a role-playing game. Owen found his voice again. Suskind wrote about it. In the course of his research, he visited the Markrams and asked them to explain what he had done instinctively right as a father. Today, he’s the one giving talks and lectures to professors. He and his son seek to disrupt the clichés surrounding autism. He and the Markrams write each other every so often. They just got an e-mail from Suskind:

Holy Markrams,

There’s joy in Suskindville. The Pope has designated us leaders of the global neuro-diversity movement—I’d submit, a central civil rights struggle of these times. After that meeting of Owen and Francis, our young champion was awarded a Pontifical Medal for his advocacy on behalf of the neurodiverse around the world.

Of course, it’s our movement. The Suskinds and Markrams are both in the forefront. And we have more company and adherents than when we all conspired.

Suskind reports that scientists at Harvard and MIT have each started new tests, which seek to use artificial intelligence to get a deeper understanding of autism.

Harvard and the Suskinds: scientists working hand in hand with affected families. The Markrams are both. Naturally, they are still on the frontlines, as Suskind writes, while he carries Henry’s message around the world. It sounds simple but can change everything: “Autistic people don’t lack empathy. We lack empathy for them.” This is a message that can be applied to many disorders and diseases of the brain.

“I have learned a lot from Henry,” says Monica. “That there is another perspective. Real life. It’s easy to lose sight of that in the lab. If you listen to what autistic people have to say, on YouTube, in blogs, when you hear that famous autistic woman, Temple Grandin, speak—they don’t want autism to be cured. But that is precisely the first thing that we scientists want. We want to find a cure. And that’s wrong. Meeting Kai and Henry was a turning point for me. The work I do in the lab is not about curing autism; it is about finding the biological reasons for its worst symptoms—the fear, for example. Find out where this fear comes from, if it’s bad for the person, and then try to remedy it. Beyond that: let autistic people be as they are. Their brains are different, but we don’t want the brain of every person to be the same. We just want them to give them a chance to be healthy, happy, and independent.”