The Boy Who Loved Too Much Read online

  In sixth grade, Eli’s closest acquaintance was a boy on his school bus with autism so severe that he was essentially incapable of speech. Eli loved sitting next to his mute companion, whom he regaled with anecdotes about his favorite things. It didn’t faze Eli that the boy never answered Eli’s questions or chimed in with his own thoughts. At home Eli talked about him often, sometimes imitating the sounds he uttered instead of language, apparently in an affectionate homage. But Eli saw him only on the bus.

  As a toddler, Eli had gone on occasional play dates. Now that he still behaved like a toddler among twelve-year-olds, no one invited him over. The last time he went to a classmate’s house, a few years earlier, he had interacted more with the boy’s mother than with the boy. He spent most of the afternoon playing by himself with the other kid’s toys.

  But on the whole his classmates were kind to him, even if they rarely interacted with him outside of school. They’d known him since kindergarten, and some had grown so protective of him that they told their parents—who told Gayle—whenever someone mistreated him. The incidents had so far been minor, although devastating enough as far as Gayle was concerned. At lunch one day, a group of boys tried to persuade Eli to swear. Eli, as uncomfortable with harsh language as he was with physical violence, refused. Eventually he broke down crying, and the boys laughed at him. An eyewitness account from a classmate made its way to Gayle; she called the school to ask why Eli’s aide, who worked one-on-one with him, wasn’t there to put a stop to it. She was told that the aide tried not to hover in the lunchroom, since Eli would never make friends with an adult stuck to his side.

  “Tell her to hover,” Gayle said. “He’s not making friends anyway.”

  She spoke hastily, half in anger. But her words were the product of hours spent thinking through this dilemma: Should she allow Eli time with his peers, unsupervised, in an effort to give him access to normal social opportunities—but also run the risk of having him mocked, bullied, or exploited? Or should she shelter him, keeping him safe but depriving him of those opportunities? She leaned toward the latter, reasoning that he didn’t seem able to navigate the middle school social world successfully in any case. But she still wanted him to be included in the regular student body, albeit in a limited, supervised way. She still hoped he would learn from and model the behavior of the typical students, as long as that behavior didn’t consist entirely of teasing and ostracizing him.

  Eli, meanwhile, seemed oblivious to the daily rejections. Classmates often slid farther down the cafeteria bench when he sat near them. He slid down after them. They sometimes pretended not to hear him when he asked a question. He repeated his question, louder. A teacher once told Gayle it was agonizing to watch Eli at lunch, because he spent the whole period looking around for someone to talk to. But it wasn’t agony for Eli. He looked forward to lunch every day, walking to the cafeteria with a bounce in his step and a smile on his face. He high-fived everyone he saw, including the boys who’d recently reduced him to tears, whose taunts he quickly forgave, or forgot. When asked, he’d call them his friends, regardless of whatever they might have called him instead.

  * * *

  ELI SPENT MOST OF HIS school day in a special-education classroom, where he took part in a life skills program for students with intellectual disabilities. His own IQ was difficult to gauge precisely. Although one test put it at 45, in the bottom tenth of a percentile for his age group, his teachers believed the true number was higher. They blamed his distractibility for undermining his performance. But while Eli consistently bungled the standardized tests he took, he always did so with panache. The previous year, he had taken the Wechsler Intelligence Scale for Children and scored in the “extremely low” range on every section. He couldn’t reproduce simple designs with blocks. He was flummoxed by wh- questions. When asked, “Why do people brush their teeth?” he mimed tooth brushing and said, “Use toothpaste.” Asked, “What is a cow?” he answered, “Moo.”

  But the test administrator noted that his comparatively sophisticated rhetorical moves belied the starkness of his score. When he didn’t know an answer, he tapped his forehead with his finger and said, “Let me think.” Asked for a definition of a word he didn’t know, he said, “It is a word.” It was hard to argue with that.

  While his classmates in the life skills program displayed varying degrees of intellectual and social disability, they were all vastly different from Eli. He was the only one with Williams; in fact, none of his teachers had ever encountered someone with Williams before. No precedent existed for his unique combination of skills and deficits. And, like many kids with Williams, he didn’t quite fit in anywhere in the school system. In many ways he was the highest-functioning student in the life skills class, but he couldn’t manage the coursework or social niceties of a regular class.

  Few teachers, even those well trained in special education, know much about Williams syndrome; it simply isn’t common enough. As a result, they often misunderstand the quirks inherent to this disorder but to no other. Because they’re more likely to come across students with Down syndrome, which shares some attributes with Williams (distinctive facial features, a tendency to be overly affectionate, and a similar overall IQ, on average), this is the standard to which kids with Williams are sometimes compared. But the contrast makes students with Williams seem willfully disobedient, since their impulse control tends to be so much weaker. Eli’s teacher had much more success in curbing the overfriendliness of students with Down syndrome. Eli, on the other hand, knew he wasn’t supposed to hug everyone but couldn’t stop. One day he’d be the model of obedience, and the next day he’d go on a hugging bender.

  Compared to kids with Down syndrome, he also had a lower tolerance for frustration or boredom. Even though he could entertain himself for hours simply by flicking the sheets of paper he pretended were flames, any attempt to get him to do something less entertaining, like math, made him restless and uncooperative. One of his greatest challenges in school, as his teacher once concluded in a progress report, was that he could stay on task for at most fifteen minutes at a time.

  He was more focused, or perhaps more motivated, in the regular classes he attended outside the life skills program. These were electives—gym, art, and tech ed—as well as social studies and science. His aide accompanied him to these classes, partly to help him with note-taking and the modified versions of tests he was given, and partly to monitor his behavior. If he grew too antsy, she’d escort him back to the life skills classroom. She did the same if he was too friendly or too chatty, disrupting the rest of the class. Just as he hounded his family about the things he was looking forward to, like cake and presents on his birthday, he often hounded his teachers and classmates about his favorite parts of the day: lunch and recess.

  One May afternoon, in his social studies class, Eli sat through a twenty-minute movie without interruption, although he kicked his legs impatiently under the desk throughout. As soon as the movie ended, he called out, “Are we going to recess?”

  “Yes, but not just yet,” his teacher said. She gave the class a handout to read. Since Eli read at a second-grade level, his aide helped him with some of the words. Finally, the teacher told everyone to get ready for recess. Eli burst into song, bouncing happily in his seat. Although a few students giggled, most chatted among themselves, ignoring him. They’d heard him sing many times before.

  Back in the life skills class, he was praised for his attentiveness during most of social studies but gently reminded not to interrupt class to ask about recess—or to sing about it. The life skills curriculum was roughly equal parts academics and social training, with an emphasis on breaking down the barriers that kept Eli from integrating with his peers. His teachers used a token system to reward him for interactions that didn’t involve hugging, for example, or for conversations that didn’t center on floor-cleaning implements. Today he earned a token for sitting quietly throughout the movie and for respecting his classmates’ personal space. If he ea
rned enough tokens, he could trade them in for a reward: time spent drawing floor tiles on paper, for instance, which he would then pretend to scrub, or watching YouTube videos of floor scrubbers on the classroom computer.

  Another technique his teachers used in school, and that Gayle used at home, was an adaptation of what are called “social stories,” first developed by an autism specialist. Each story was a sort of script for a situation that might provoke inappropriate behavior; for Eli, these included lunchtime and gym class. The teacher would outline what was likely to happen in that situation and what a socially acceptable response might be. For lunch period, the story might go something like “There will be a lot of other students in line. You’ll say hi to the people around you, but you won’t hug them. You’ll get your food and carry it to your table, and then stay in your seat, talking only to the people sitting near you.” Eli might be given a prompt and asked to brainstorm some actions that would be appropriate in that context. He could usually name these in the abstract. But social stories and tokens had only made marginal differences in his behavior. The fact, obvious to everyone but him, that his overfriendliness was pushing away the very people he hoped to befriend had done nothing to change his approach. And as off-putting as it was to his typical peers, it could be just as abrasive, or even more so, in his life skills class and in extracurricular activities with other students with special needs.

  In a special-needs sports league called Buddy Baseball, Eli had tried to befriend a boy named Josh, a tiny kid who resembled a bobblehead doll in his oversize batting helmet. Josh was on an opposing team, but the teams played each other frequently and Eli had taken a shine to him despite the fact that Josh, who had autism, seemed to find Eli’s friendly overtures an acute form of torture. At one springtime game Eli was playing second base when Josh hit a double, which Eli believed presented the perfect opportunity for them to catch up.

  “Hi, Josh!” Eli shouted, welcoming him to the base. In reply, Josh held his arms out stiffly, as if pushing Eli’s words away, and screamed. This didn’t strike Eli as antisocial; he continued his side of the conversation in the same pleasant tone.

  “How you doing, Josh?” he asked.

  “AAAAAAAGH!” Josh shrieked, his face scrunching in fury.

  “It’s nice to see you!”

  “AAAAAAAGH!”

  “How was your vacation?”

  “AAAAAAAGH!”

  Finally, the next batter hit a line drive and Josh bolted to third, then made a dash for home. Eli applauded gleefully.

  “Josh, you’re doing it!” he called out as his opponent rounded home plate.

  The irony was not lost on Gayle that Buddy Baseball, despite its intended purpose, seemed an unlikely place for Eli to actually find a buddy. But, to Eli, Josh was a buddy. It would have been impossible to convince him otherwise, since his definition of friendship was nothing like his mother’s, or the dictionary’s. It didn’t depend on shared interests or mutual affection. A friend was simply someone he’d interacted joyfully with—a definition that encompassed nearly everyone.

  * * *

  THE LIKE-SEEKING-LIKE PRINCIPLE OF CHILDHOOD (and adult) friendships is what sociologists call homophily, and it’s what some believe undermines many of the goals of inclusive education. In itself, it’s not an inherently evil tendency. We’re all drawn to others who resemble us. So are animals. A 2013 meta-analysis of mating habits in 254 different animal species found that members of each species tended to mate with partners that were similar in size, color, and other outward traits. In human societies, peer groups typically form around shared interests, abilities, and appearances. It can be hard to join a group unless you look, talk, and act like the others in the group. If you’re different from everyone else, you may find yourself excluded everywhere.

  So while efforts to promote tolerance and inclusion of people with special needs have made great strides over the years, it has been an uphill battle. The disability rights movement of the 1960s succeeded in bringing intellectually disabled students out of separate facilities and into the same public schools as nondisabled students. And the passage of the Education for All Handicapped Children Act, a 1975 law requiring special-needs children to be educated in the “least restrictive environment,” gave them greater access to the academic and extracurricular opportunities available to typical schoolchildren. The inclusion movement went even further, pushing for disabled students to be taught in the same classrooms as their typical peers, with an aide and modified assignments if necessary, rather than spending much of their day in a special-education classroom. While educational benefits were the movement’s first priority, emphasis has shifted over the years to social goals. Parents expect inclusion to help their kids learn social skills and, ideally, make friends.

  But acquiring social skills—and making friends—doesn’t necessarily follow simply from sharing the same environment. In 2007, special-education researchers Per Frostad and Sip Jan Pijl studied schoolchildren in Norway, which has one of the world’s most inclusive policies toward special-needs students. By asking seventh graders to name up to five of their friends and comparing the overlap between lists, they found that students with special needs had roughly half as many friends as their typical peers, on average, and that a quarter of them had no friends at all. “The data presented here give no grounds to be very optimistic about the social position of these pupils,” they wrote.

  They also found that seventh graders with special needs scored worse on tests of social skills than did fourth graders with special needs. Their abilities seemed to be eroding as they became more socially isolated over time, the researchers concluded. And while undergoing special training in social skills yielded short-term gains, it made little difference in the long term. Friendships still failed to blossom, and the newly learned skills faded over the course of a few months.

  “This is not because they do not master the skills, but because the peer group does not change its attitude and behavior. Their image of the trained pupils does not change,” Frostad and Pijl wrote. “The trained pupils do not have many possibilities to practice their new skills, the training does not pay off for them, and after some time the new skills seem of little use and are dropped.”

  Some studies have found that inclusion can actually backfire as a way to foster friendship, since classroom interactions highlight the differences between people with special needs and their typical peers, and can lead to rejected social overtures that leave students with special needs feeling embarrassed, hurt, and lonely.

  Others have come to more optimistic conclusions. A 2014 study assessed young people with autism spectrum disorders who had undergone an intensive three-month social skills training program between one and five years earlier. The teens and young adults had mostly maintained—and even improved upon—the skills they’d been taught and, more importantly, reported having closer friendships and more friends overall.

  Still, adults with social disorders like Williams and autism often name adolescence as the hardest time of their lives. Researchers say that’s partly because social rules are more complex and inscrutable among teens than among children or adults. It’s also because teenagers, including teenagers with Williams and autism, are consumed by the drive to establish their identities. And the easiest way to establish identity is to be part of a group. Without friends, they feel not just lonely but adrift, unsure of who they are or where they fit in the world.

  Eli didn’t seem to be facing this existential crisis, or at least not yet. But others his age, and some even younger, were already struggling with it. One eight-year-old girl with Williams came home and broke down crying after her classmates shunned her at school. “I know I’m different,” she sobbed to her mother. “Why am I different?”

  Another girl with Williams—Chelsea, who was the same age as Eli—performed so well academically that she took the same classes as typical students, although her assignments were modified. But this didn’t mean she was any better integrat
ed with her peers. While she easily charmed adults with her warm, gregarious personality, she, too, often came home in tears after being rebuffed by her classmates.

  It’s not uncommon for people with mild disabilities to suffer more social angst than people with severe disabilities. According to one study, those on the high-functioning end of the autism spectrum were abused by their peers more often than those with profound autism, partly because they were placed in less protective settings where social expectations were higher. Compared to people with severe autism, those with fewer autism symptoms and a higher IQ were also more likely to suffer from depression and anxiety, partly because of their heightened self-awareness.

  Likewise, Chelsea’s intelligence and sensitivity both helped and hurt her. Among other talents, she was a gifted storyteller, inventing elaborate tales at the dinner table to entertain her family. Her parents wrote many of them down. One day, for a sort of open-mic event in her middle school, she chose a few of her best stories to perform for her class. But before the event, her teacher called to talk to her father.

  “She told me it would be good for me to be there with Chelsea, so the other kids could see that her father is . . . a man. Like their fathers,” he later recalled. Intensely shy himself, he was sure she could perform better on her own than with his assistance. But he took the teacher’s words to mean that her classmates saw her as so different from the rest of them that she might as well be the offspring of aliens.