2

Saved from the Wastebasket

Interesting, the man thought: a scientist
considering autism from a father’s perspective.

There they sat: professors from Texas, Kansas, and New York, a tower of papers stacked before them on the table. So many proposals for fewer than twenty-five grants. If they wanted to get through them all, they would have to narrow down the selection.

Let’s see what we have.

Cerebellar deformities? Good, foundational research.

Learning disabilities in autism? Crucial, crucial.

Do genes on chromosome 2q cause autism? Perfect, genetic research.

Genes that delay language acquisition? Two important topics in one. We’ll gladly support that.

Oh, and here from Israel: a certain Markram, Weizmann Institute. He claims that almost all autism research is focused solely on autistic people’s weaknesses, on genetic defects, and on the cerebellum. He wants to study the cerebral cortex, inhibitory neurotransmitters. Our good old friend, Professor Merzenich, has also been researching in that direction.

The professors grinned. If hardly anyone in the field was studying the cerebral cortex, there was good reason for this: because there was nothing worth studying. It’s nonsense, some of them said. A sideshow, said the others. The dossier sailed into the wastebasket.

But one person took notice, not one of the power brokers at the table but an unassuming man sitting on the sidelines. He represented the National Alliance for Autism Research (NAAR), a foundation started by a group of parents with autistic children. Nancy Lurie Marks, an heir to the Walmart fortune and mother to an autistic child, was a donor.

Interesting, the man thought. He would tell Nancy about this. She was looking for new ways forward. Unlike scientists, parents don’t have time to waste, nor do they always err on the side of prudence. They are willing to take a risk. Once the meeting was over, the secretary plucked the dossier out of the wastebasket.

What the young scientist had to say was impressive. He had reviewed the existing autism medications. All 625 existing patents were geared toward improving neural capacity, toward stimulating the brain. And they were all derived from research that focused on the deficits of autistic people: learning disabilities, speech impediments, genetic defects. Markram questioned that.

And that wasn’t his only point of criticism: the existing research was focused on the cerebellum. That, of course, was an important part of the brain but not the decisive one. If a child is born without a cerebellum, it still grows up fairly normally; the brain can delegate the cerebellum’s tasks to other departments. The cerebral cortex is much more important, particularly the part that Henry knew best: the neocortex. It contained memory, perception and emotion, those higher cognitive abilities that make us uniquely human—faculties that are impaired in autistic children. That’s where Henry wanted to focus his research. He wanted to study inhibitory neurons. At first glance, a sideshow. But didn’t people with defective inhibitory neurons experience seizures, just like every third autistic child?

Nancy Lurie Marks liked what she was hearing. That research proposal didn’t belong in the wastebasket. This man should get a chance. Her own family foundation would support his research for a year; the second year should be covered by NAAR: $96,800 in total.

Henry was so proud: his first foundation grant.

Since the early days of medical science, one of the central questions facing practitioners has been how best to introduce their lab discoveries into the real world. How do you determine if a medicine works? Since Paul Ehrlich’s day, the solution has been animal testing. This repels many people. “We should . . . refuse to live,” Mahatma Gandhi once said, “if the price of living is the torture of sentient animals.” What would the pregnant women who were prescribed thalidomide in the 1950s have to say about that? That drug, notably, had not been tested on pregnant animals. How do Parkinson’s patients feel about animal testing? We know that their shaking can be alleviated with neural implants only because we tried it on monkeys first.

It’s cruel to hurt animals, but it’s inhumane to refuse aid to our fellow humans. Humanity has thus come to a tacit agreement that it will continue to conduct research on animals. Henry, who today heads a project that could make a lot of animal testing obsolete, decided to do it also.

His research required breeding autistic animals, autistic lab rats. He administered them substances that were suspected of causing autism: mercury, alcohol, epilepsy medication. But it wasn’t quite working. Everything took longer than expected. Under the microscope, he didn’t see what he had hoped: that the solution was located in the cerebral cortex and that the inhibitory cells weren’t doing their job.

Day after day, he stared at the neurons, delving ever deeper into the cells. He couldn’t find anything. Perhaps the professors had been right, after all, and his dossier belonged in the wastebasket.

When Henry drove home at night, where Kai would be waiting for him at the door, he felt lost and infinitely alone.

It’s hard on parents when their children are sick or disabled. Many doctors and psychologists have taken an interest in this burden, writing books and essays about it. Bouma and Schweitzer, Hastings and Johnson, Sanders, Morgan, Weiss, all the usual suspects have weighed in. They all reached the same conclusion: no chronic illness, no disorder or disability causes parents more suffering than autism. Particularly if it’s a severe case of autism and the child withdraws from them entirely, offering them no recognizable love, no words, no smiles, their grief is as deep as humanly possible.

The parents cited in these studies all say variations on the same things: It costs you so much strength. You feel wired constantly. You’re always looking out for them. You stop doing things for yourself. You don’t go out anymore. You feel ashamed. Friends stop visiting you. You stop spending time with your partner because you’re both too tired.

Many marriages break up under that pressure. Other couples pull even closer together. You need each other, depend on each other. This can give a troubled marriage a new lease on life, one that may turn out to be temporary. That turned out to be the case for Henry and Anat.

The two of them met when they were young. Henry, the aspiring neurologist from South Africa, and Anat, the career student from Israel. They were so different, had so very much to say to one another, each exploring a new world. But over the years, they drifted ever further apart. Henry strove onward in the scientific world, going from success to success, while Anat immersed herself in color theory and meditation, searching for the meaning of life. Their marriage wouldn’t have lasted as long if it hadn’t been for the girls and Kai. But Kai couldn’t keep them together forever. One day the two of them realized that they weren’t lovers anymore, merely good friends and great parents. They separated but continued to live under the same roof. Their marriage was broken, but their family was not.