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The first time I met Eli, in the late winter of 2011, he was waiting for me at his front door. Gayle had told him to expect a visitor: a writer who wanted to observe him “in his natural habitat,” as Gayle put it. She always waited to deliver exciting news like this—a guest!—until the last possible moment, so the anticipation wouldn’t overwhelm him. Still, Eli had been restlessly awaiting my arrival for the two hours since he’d gotten home from school.
At first, all I saw were pudgy fingers wrapped around the door, which was open just a crack. I heard Gayle’s command: “Do not go out there, Eli.” An eyeball appeared in the crack between the door and its frame. It bulged wide when it saw me. Then the baby-faced boy, who had just turned twelve, flung the door open. He rubbed his palms together, beaming as if he were about to open a Christmas present. Then he waved frantically, as if I might not have noticed him and might simply turn and walk away. “Hi, Kenny!” he bellowed into the snowy parking lot of his apartment complex.
Eli spoke with exclamation points: earnestly and emphatically. His voice was deep and loud—a man’s booming baritone—but cheerful and childishly nasal.
I heard Gayle’s voice again, in a stage whisper: “Her name’s Jennie.” He corrected himself without pausing, without embarrassment. His smile never faded. “Hi, Jennie!”
The greeting was comically hyperbolic, yet Eli radiated sincere earnest warmth. Meeting me truly was as exciting as opening the biggest present under the tree. I reminded myself, before my ego swelled in proportion to Eli’s enthusiasm, that meeting anyone was this exciting for him.
When I first heard of Williams syndrome, it had been described to me as a “cocktail party syndrome” that made people socially fearless, quick to greet strangers, and to strike up a charming conversation laden with compliments and endearments. Fascinated, I began searching for more information about the disorder. I came across a news story that called people with Williams syndrome indiscriminately loving and “biologically incapable of distrust.” Another account dubbed Williams “the anti-autism”: a genetic fluke that stripped one in every 10,000 people of the inherent wariness, skepticism, and inhibition that were hardwired into the rest of us—especially introverts and New Englanders, both of which I happen to be.
Initially, I felt partly envious of this social ease and partly indignant that our conformity-loving culture saw fit to label it a disorder. Who are we to tell them they’re doing it wrong? I thought righteously, concluding that, in another time and place, people with Williams would have been canonized as saints, not diagnosed with an illness. If they love and trust everyone unconditionally, I thought, maybe they’re the ones doing it right. Maybe it’s the rest of us who need treatment.
As a journalist, I felt driven to probe more deeply. I wanted to know what Williams could tell us about the genetic basis of our personalities. How could a flipped switch that shuts off about two dozen genes—a tiny twist of the 20,000 or so genes that form a DNA strand—make us inherently loving, trusting, and outgoing? And why wasn’t that our default mode?
The more I came to understand Williams syndrome and to meet a wide range of people who had it, the more I saw that the social impulses that partly defined the disorder weren’t so clearly a gift. Their unique combination of gregariousness and guilelessness exposed a paradox in Western culture: we say we like extroverts, but when an extreme extrovert comes barreling toward us with open arms, we shy away. It’s not just warmth or openness that we value; these traits must be coupled with a more sophisticated sense of when to turn them on and off. People with Williams syndrome never turn them off. They have the social drive but not the cognitive ability to use it effectively.
With their unconditional love for humankind, people with Williams seem to come closer than any of us to what religious leaders, gurus, and self-help authors tout as an ideal. But the truth is more complicated. The response I’ve seen to people with Williams has ranged from warmth to amusement to pity to contempt. Reverence rarely makes an appearance. Nor do their overtures of friendship tend to meet with genuine reciprocation. The cruel irony of the disorder is that the very people who crave social connection the most aren’t well adapted to get it. Their insatiable drive to connect is, in itself, what ultimately pushes people away.
If not a model of behavior, then, Williams struck me as a lens that magnified some of the fundamental challenges of being human. All of us risk being taken advantage of to some degree, but what would it be like to go through life this irremediably vulnerable, biologically unable to peel your heart from your sleeve and lock it safely inside? All parents fear for their kids’ safety, but what would it mean to be the parent of a child who lacked the defenses most children come by innately? The disorder exponentially increases a parent’s normal anxieties and exaggerates one of the universal perils each of us faces: the danger of opening our hearts only to be met with rejection or exploitation. Maybe that’s one reason why some of us inwardly recoil when we see people with this condition. They hold up a mirror to the part of ourselves we’re trying our best to conceal: that utterly defenseless, deeply tender inner part that yearns for connection and kindness—and can so easily be crushed.
In 2012, after becoming immersed in the world of Williams and establishing myself as a fixture in the lives of Gayle and Eli D’Angelo, I attended the biennial Williams Syndrome Convention in Boston, where I joined a group of first-timers—parents whose children had recently been diagnosed—at a bittersweet “welcome lunch.” By then I knew enough about the disorder—which typically entails moderate intellectual disability and serious health complications along with the social symptoms—to recognize that Williams was not simply an invitation to an endless cocktail party. So did the parents, many of whom stared red-eyed at plates of lukewarm pizza. Their babies, meanwhile, cooed at everyone they saw while toddlers tore across the mauve carpets to hug new people and older children greeted each other exuberantly.
Karen Levine, a developmental psychologist who specializes in Williams, stood at the front of the banquet hall, working her way through a PowerPoint presentation about the disorder. Although she runs a busy private practice and teaches at Harvard Medical School, Levine gives off an easygoing, carefree energy. She smiled warmly as she delivered a speech that was part pep talk, part primer—a version of the talk she’d once given Gayle, who had brought Eli to her office for an evaluation when he was four.
Levine hoped the last slide of her presentation would offer some perspective, or at least some comic relief, to the roomful of dazed parents. In it, she offered a clinical diagnosis for a little-known disorder called TROUS: The Rest of Us syndrome. Seen from the perspective of someone with Williams, this disorder includes traits such as extreme emotional distance, pathological suspicion of strangers, and a critically limited capacity for hugging.
Although I had come to accept that Williams syndrome was justifiably labeled a disability, I was gratified to hear Levine echo my initial sense that the world would be a kinder, gentler place if people with Williams formed the majority, and the rest of us were the ones with a rare clinical disorder.
“These people very rarely say ‘I love you,’” Levine noted of TROUS sufferers, still channeling the Williams worldview. “They might only say it a few times a day.”
Excerpt from The Boy Who Loved Too Much by Jennifer Latson. Copyright © 2017 by Jennifer Latson.
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