The Boy Who Loved Too Much

by Jennifer Latson

  Of course, theory of mind isn’t an all-or-nothing entity, something you either have or don’t have. It is one of the slowest-developing of our faculties. Some studies have concluded that theory of mind, and the empathy it instills, aren’t fully developed until our mid-twenties. Even when we have as much of it as we’re going to have, we fall somewhere on a spectrum, both as individuals and in groups. Women have stronger theory of mind and display more empathy, on average, than men. But some men, and some women, fall vastly above or below the average.

  While people with Williams struggle with the cognitive but not the perceptual part of theory of mind, people with autism tend to fail at both. Psychopaths, meanwhile, have the opposite problem: they have normal (sometimes even above-average) cognitive theory of mind but lack the perceptual ability to sense or respond to other people’s feelings of distress. As Harvard psychiatry professor Jordan Smoller writes in his book The Other Side of Normal: How Biology Is Providing the Clues to Unlock the Secrets of Normal and Abnormal Behavior, “psychopathic individuals have a neurobiologic impairment in the ability to recognize and process fear and sadness in the facial expressions or the voices of other people. It’s as though they’re blind and deaf to the pain of those around them.” Researchers have traced this impairment, at least in part, to the amygdala, which tends to be smaller than normal in people who meet the criteria for psychopathy.

  Where psychopaths and people with Williams overlap, surprisingly, is in the weakened reaction of their amygdalae to other people’s expressions of fear. However, in psychopathy, this blunted response also extends to sadness, to which people with Williams are highly sensitive. In addition, psychopaths can easily identify anger, while many people with Williams struggle to do so.

  Most of the traits of psychopathy, including egocentrism, callousness, and cruelty, are the polar opposites of those found in Williams syndrome. People classified as psychopaths show no guilt or remorse for exploiting or hurting another person; people with Williams are deeply disturbed just to hear about such harm being done. In fact, true psychopaths appear to be incapable of feeling anxious at all, while people with Williams are acutely susceptible to anxiety. So although both suffer from impairments of the amygdala, those impairments produce vastly different effects and are likely influenced by dysfunction in other parts of the brain. In psychopathy, researchers believe this includes the orbitofrontal cortex, which plays a part in learned behavior; it conditions most of us not to repeat actions that make other people suffer. Defects in this part of the brain could help explain why psychopaths develop a malfunctioning moral compass: they never learn that it’s wrong to mistreat others, while people with Williams are born knowing this.

  The neurobiology of autism, on the other hand, has yet to be clearly deciphered. But some researchers have suggested a correlation between the deficiencies in empathy and the great mathematical strengths that are common to the disorder, particularly in the ability to analyze and interpret numerical sequences, which the psychologist Simon Baron-Cohen refers to as systemizing.

  The fact that people with Williams are terrible systemizers is no coincidence, according to Baron-Cohen. He and other scientists believe there is a cognitive divide between the ability to think about and empathize with other people and the ability to comprehend the physical world in a mechanistic way. They argue that not only are these cognitive systems distinct from each other, occupying different regions of the brain, but each has a suppressive effect on the other, meaning that using one system inhibits our ability to use the other.

  Most people have a decent command over both systems, although almost everyone is stronger in one than the other. For the most part we can alternate between the two situationally, which results in the different neural regions being “pushed up and down like a see-saw, depending on whether the task involves thinking about physical mechanisms or internal mental states,” according to cognitive scientist Anthony I. Jack. Williams and autism, therefore, each represent an extreme in which one of the systems is almost entirely suppressed at all times.

  Baron-Cohen makes a logical case for this, arguing that the love of order and pattern that characterizes autism requires precise black-and-white thinking that renders the social world incomprehensible. “The world of people is a world dominated by emotions, where behavior is unpredictable. How someone feels is not something that can be determined with precision,” he writes in his book The Science of Evil: On Empathy and the Origins of Cruelty. “When we empathize, it is because we can tolerate an inexact answer about what another person may feel.” People with Williams are attuned to the imprecise world of emotions but flounder in the mechanistic realms of math and logic. Both extremes pose problems for a well-rounded life, although both have distinct advantages. The extreme empathy of Williams promotes altruism, while the extreme systematization of autism has led to innovations in technology, music, science, and engineering.

  Baron-Cohen acknowledges that both extremes represent an evolutionary disadvantage for individuals, even as they may benefit society. This explains why neither is our default mode: thousands of years of evolution have steered humanity as a whole toward a more stable middle ground.

  * * *

  MOST OF US AREN’T BORN with the same capacity for indiscriminate kindness that is innate to Williams, but many believe we should aspire to that standard. The precept “Love thy neighbor” is common to all major religions, from Hinduism to Islam to Confucianism to Judaism. The story of the Good Samaritan, illustrating the godliness of showing mercy to strangers, is among the most popular of Christian parables.

  Some of the hallmarks of the Williams personality, among them empathy and a desire to help others, are the cornerstones of a holy life in Western and Eastern religions alike. In Taoist philosophy, for example, the first of the “Three Treasures,” or core virtues, translates as compassion or kindness. Selfless service is one of the foundations of Sikhism and many Indian religions. And many Christians make an effort to embrace the same openness, trust, and wonder found in Williams syndrome, following Jesus’s admonition, “Unless you change and become like children, you will never enter the kingdom of heaven.”

  Even the most modern seekers of enlightenment strive for a state of Williams-like openness. This quest partly explains the popularity of the drug MDMA, better known as ecstasy or Molly, which is classified as an “empathogen” for its ability to elicit feelings of empathy and intimacy. The drug gained prominence in the 1970s as a therapeutic tool, used especially in couples counseling as a way to foster closeness and to help partners drop their defenses and communicate freely. One of the ways the drug elicits this sense of connection to others is by increasing the amount of oxytocin in the brain, just as Williams syndrome does.

  Although MDMA became illegal in the U.S. in 1985, it has reemerged recently in therapeutic trials for social disorders. A 2012 study found that people suffering from severe post-traumatic stress disorder whose symptoms hadn’t improved with other treatments found significant relief from MDMA in combination with psychotherapy. Researchers hypothesized that this relief was partly attributable to an effect that mimicked Williams syndrome, making patients’ brains more responsive to happy faces and less responsive to angry or fearful faces. “MDMA may enhance the therapeutic alliance by increasing the likelihood of detecting positive expressions and finding them rewarding, while at the same time reducing the chance of excessive reactivity to fleeting or unintended expressions of anger or disapproval,” the researchers reported in the Journal of Psychopharmacology.

  In 2014, researchers launched the first FDA-approved trial to determine whether MDMA could help people with autism overcome their social anxiety. Although treatments for social anxiety already exist for the general population, they rarely work well for people with autism. But people on the autism spectrum who’d taken ecstasy recreationally reported that it had helped them connect socially in ways they hadn’t been able to before. Of more than a hundred autistic people surveyed by the resea
rch team conducting the study, 72 percent said that recreational ecstasy use made them more comfortable in social settings, and 77 percent said the drug made it easier to talk to people.

  Even non-autistic people who take ecstasy sometimes describe it as a spiritual experience because of the feeling of universal kinship it inspires. Like Williams syndrome, MDMA obliterates inhibitions and creates an overwhelming urge to connect with other people. Unlike Williams, however, its effects only last for a matter of hours. The drug takes users on a kind of vacation in a Williams-like state of raw vulnerability and harmony with humankind; then it wears off, returning them to the real world and their ordinary inhibitions and defenses. Glimpsed in this way, the world of Williams can be magical, even though—or more likely because—the experience is fleeting. It’s a nice place to visit, but most of us wouldn’t want to live there.

  Twenty-Two

  Science Class

  Near the end of Eli’s eighth-grade year, his science class reached its final unit: genetics. Each student had to turn in a research paper on a genetic disorder, except for Eli, who attended the class with an aide but whose assignments were modified to suit his abilities. The others chose from the disorders listed in their textbook. There was Down syndrome, which appealed to many students because of its familiarity. There was Turner syndrome, a condition affecting girls who lack two full X chromosomes. There was phenylketonuria, an enzyme deficiency that can lead to developmental disabilities. And there was Williams syndrome.

  Although most of his classmates had gone to school with Eli since kindergarten, they were unaware that this label applied to him. All they’d known until then was that he was different; the reason for it had never come up. Now it would, and his science teacher, Kathy Holzer, e-mailed Gayle to ask her how to proceed. She promised not to mention that he had the disorder if Gayle objected, but suggested that it might help promote awareness if the students could connect the genetics lesson to a real person in their midst. She invited Gayle to come in as a guest speaker to drive the lesson home and to offer her own insights about the disorder.

  Gayle was surprised to hear that the class was studying Williams syndrome. She was sure it hadn’t been part of the science curriculum when she was in eighth grade. Throughout Eli’s life, it seemed like no one he’d ever met, educators included, had even heard of Williams before. Now everyone in his class would know the intimate details of the disorder.

  She felt torn. Normally she jumped at the chance to explain what Williams syndrome was and how it affected Eli. But eighth graders were a tough crowd. The last thing she wanted to do was give them more ammunition for taunts and teasing. She was already uncomfortable with the prospect of other students doing projects on Williams syndrome and seeing Eli as a research topic, a specimen of genetics gone wrong, rather than just their classmate. She posted her dilemma on the Williams syndrome Facebook page.

  “On one hand, I feel it is great awareness, but on the other hand, not sure about the maturity of the other eighth graders,” she wrote. “I am feeling a little stumped about what to do. The information about Williams syndrome is out there, so it isn’t an issue of me wanting to ‘hide’ Eli’s WS or anything like that. Would you want classmates doing a ‘project’ about your child?”

  But the responses were mostly encouraging. Several other parents urged Gayle to seize the opportunity to educate Eli’s peers and open the door to a frank discussion about how and why he was different. Terry Monkaba, the executive director of the Williams Syndrome Association, replied that her son’s eighth-grade class had also covered genetics, including Williams syndrome.

  “I went in that day to help explain how Williams affected Ben specifically,” Terry wrote. “Ben loved it and the kids asked very thoughtful questions. It was a great experience for us.”

  In the end Gayle decided to go for it, although she shared two concerns with Eli’s teacher: first, that Eli’s condition was being described as a “disorder” and that he would pick up on the negative connotations of that word; second, that some classmates would turn the lesson into a new way to make fun of him.

  “This is the first time I’ve encountered this situation, so I really am very open to suggestions,” Kathy replied. “We do use the word ‘disorder,’ as it’s technically correct, but I definitely understand your concern. One of our challenges at this level is getting students to understand the difference between a disease and a genetic disorder, so we address what we mean by ‘disorder’ early on in the unit. But generally we just call the disorders by their names—Down syndrome, Turner syndrome, Williams syndrome, etc.—so I’m not sure Eli will feel any stigma related to the terminology.

  “As far as the maturity level, well, this is a tougher one. This class is one of my more behaviorally challenging (trying to be nice!). The crazy thing is, as disrespectful as they can be to me at times, they are AWESOME with Eli. If you have no objection, I can share with the class tomorrow that Eli has one of the syndromes I plan to teach them about and see if they can handle it responsibly. I honestly think they will be great about it, and eager to learn more, as they’ve known Eli for years. They’ve fooled me before, but this might be a great opportunity to further open some hearts and minds. But I don’t want it to backfire, either.”

  The next day she e-mailed Gayle to say that the eighth graders had taken the news of Eli’s condition with sober curiosity. Some said they’d always wondered what made him the way he was but didn’t think they could ask. Kathy was convinced that they’d be gracious and attentive listeners to Gayle’s presentation. She also raised the stakes by asking Gayle to speak to each of the eighth-grade science classes—Eli’s plus five others—as well as to some of the teachers and staff who’d expressed an interest. Gayle agreed, and took a full day off from work to fit it all in. She, too, hoped it didn’t backfire.

  * * *

  THE MORNING OF HER PRESENTATION, Gayle chose her outfit as carefully as a teenager on the first day of school. She knew how easy it was to evoke the disdain of thirteen-year-olds, so she put some effort into making herself eye-roll-proof. She paired a gray baroque-print tank top with a black shrug over black jeans and pulled her hair into a loose ponytail. Even her nails, painted a fashionable slate gray, coordinated with the ensemble.

  The first class started at 7:40 a.m. Gayle arrived early and Kathy led her to a modern library in a brand-new building adorned with rows of gleaming Macs and Ikea-style furniture. The classes would meet in a corner of the room, where round café tables were arranged in a cluster around a high-tech smart board. Gayle had come prepared with a flash drive filled with Eli’s baby pictures and some more recent photos, which she plugged directly into the board to run as a slideshow while she talked. She reasoned that the photos would help humanize him, showing his classmates that he hadn’t burst fully formed from a genetics lab but was once the world’s cutest baby. She’d picked photos showing him with Santa as a toddler and playing sports as a preteen, to demonstrate that he shared their interests and some of their abilities.

  “I’d like for the kids to know that, even with all the differences, he’s just a kid who wants friends and wants to be a part of things, like them—probably even more than they do,” she explained to the science teacher. They had agreed that Eli shouldn’t attend the presentations himself so he wouldn’t feel like he was under a microscope, and so his presence wouldn’t keep the other students from speaking candidly.

  The first class filed in, and two dozen sleepy-looking students attempted to find seats as far away from their teacher as possible. Gayle tried to project an air of composure, although she was starting to wonder if she’d make it through the class without choking up. It was so rare for anyone, even her closest relatives, to ask point-blank questions about the challenges of living with Williams that she feared the words would catch in her throat. Kathy’s warning that there were a few wise guys in the first group made her even more apprehensive about breaking down in front of them. She took a deep breath.

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nbsp; When the students had settled into their chairs and stopped rummaging through their overstuffed backpacks, Kathy introduced Gayle and started the slideshow. Eli’s baby pictures flashed on screen, one after the other. Each one revealed the same beaming, gap-toothed smile. The girls in the class cooed. Gayle relaxed a little.

  The students had written questions for Gayle beforehand on index cards that Kathy, a scientist to the core, had collected and classified into four categories: scientific, pragmatic, emotional, and ethical.

  Gayle tackled the scientific questions first, which ranged from the basic—“How did Eli get Williams syndrome?”—to the specialized: “Did he have a fluorescent in situ hybridization (FISH) test?” The student who asked the latter question admitted that she was doing her research project on Williams; she’d already guessed that the answer to this question was yes.

  Several students asked about Eli’s health. Gayle explained that, as with everyone who had Williams and was vulnerable to stenosis, he had to be checked every year to be sure that the blood vessel leading away from his heart wasn’t narrowing. The students seemed surprised to hear about this, except for the one who was writing her report on Williams.