The first time Gus felt the need to be closer to Laurie, he was five. Laurie was staging a toddler Woodstock in Central Park, and we were there with Gus’s then love interest, Tressa. At that point in his life, Gus had no compunction about wandering away; the caution that hits most kids around two or three, that it’s safer to stay near the Big People, had not occurred to him, and wouldn’t for many years. This is why Gus had a rope tied around his waist. Tressa’s father, a man with the same luminous, sad eyes as his daughter, was not the kind of person to judge. As we spread our blanket out in the park, cheek to jowl with other kids and parents, I sat on the rope so Gus couldn’t go anywhere. But he had enough room to bounce around and was happy. The concert over, the “Good-bye” song sung, I went to pack up our stuff, noting a little wistfully how Tressa clung to her father’s leg. In that moment that I stood up, Gus was gone.
Thousands of kids, acres of meadow. Why didn’t someone stop him immediately?
“What does he look like?” the policeman asked as I hyperventilated.
“Well, he’s got straight brown hair and is wearing overalls and, oh yeah, he’s dragging a twelve-foot rope behind him.” How hard could it be to find him?
At that moment I answered my own question. “I know where he is,” I said, and the policeman sprang after me. “Can you get me backstage?”
When I got backstage, Gus was eating an apple with a four-hundred-pound tattooed roadie.
“Huh, I thought that rope was a little weird,” the guy said. “But he was back here, so I figured he belonged to one of the musicians.”
Soon after this incident, I wrote an article about Laurie so I could score good seats and make sure Gus got to meet his hero. That ploy worked a little too well, because he then wanted to meet her after every concert he went to for the next ten years. And he did.
One day, when he was around eleven, we were walking around our neighborhood when a mop-topped redhead shouted, “Hi, Gus!” and Gus shouted back, “Laurie, hi!” and we went on our way. I realized at that point that Laurie Berkner tended to cycle through fans, so if the older ones were six or seven, maybe Gus’s age made him memorable. Well, that and the hopping. He would worm his way into the front row of whatever show she was doing and become the Human Pogo Stick. It’s not the way most of us hop, with just our legs. Gus throws his head back and closes his eyes, as if looking at the source of joy would just be too much for him; then he bounces with such force he practically levitates. It’s pretty hard to miss.
After one concert he managed to barge his way into her dressing room. Mortified, I yelled at him to get the hell out of there, and I heard Laurie serenely saying, “Hey, Gus, I just need to change and I’ll be out in a few minutes.”
There is no celebrity easier to love.
* * *
A bedtime conversation, when Gus and Henry were ten:
Henry: Girls want to hold your hand. I’m never getting married.
Gus: I’m going to marry Laurie Berkner.
Henry: Gussie, I know Mom says old women are good, but she’ll be like seventy when you can get married.
Gus: I am going to marry Laurie Berkner.
Henry: YOU CAN’T.
Gus: [bursts into tears]
Henry: Wait, wait, let me think . . . Oh, she has a daughter.
Gus: [sniffling] Lucy?
Henry: Lucy. Maybe Lucy can sing.
Gus: [brightening] I’m going to marry Lucy!
* * *
One day recently I decided to call Laurie. This is not like getting Madonna on the phone, though it’s harder than it used to be. Until a few years ago, the forty-eight-year-old singer had a listed phone number, but then one too many hedge fund managers called to see if they could get her to play at their three-year-old’s birthday party. Anyway, I reached out to her because I had to know: Was Gus the only one? Did she have other fans this long in the tooth, desperately clinging to the shores of their childhood by faithfully attending her shows when their peers had all become Katy Kats or Swifties? And were there perhaps other Flappers in her fan base?
“Oh, Gus is totally not the only one,” Berkner said. “A bunch of kids on the spectrum are obsessed with me. I wish I knew why. I have been trying to get more insight into this myself, because whatever I’m doing, I’d like to do it more.”
Berkner directs me to a blog called Autism Daddy, where the dad describes his nonverbal twelve-year-old sleeping with a framed photo of Laurie like it’s a teddy bear. A mom of an autistic child told Laurie that her son’s first word was “pig” because he wanted to put a pig on his head at one of Laurie’s concerts. Prior to that, “he had never wanted anything badly enough to ask for it verbally.”
There is something about Berkner’s music—its simplicity; its clear, focused ideas—that makes it immediately memorable. And in her own life, she appreciates simplicity and repetition. “I’m a huge Philip Glass fan, and I love West African music that does the same thing over and over again. A lot of kids find that kind of music comforting. But maybe autistic kids even more so.” Before she started writing for kids, Berkner played in an all-women rock band—and, for her day job, worked at a program for profoundly autistic adults. Some were violent; one would spend all day turning in circles. They had their musical obsessions, too. “One guy would only listen to Gil Scott-Heron, and another, only Spanish music radio programs. He listened through headphones and wore them most of the time. I never forgot how powerful that experience was.”
On some level, Berkner says she understood. “My parents both worked and I didn’t see them until late at night,” she says. “And even though I had a brother, I remember feeling lonely a lot. I would do all these very repetitive or very weirdly focused things. Like, I would stare at one diamond-shaped-pattern fence at my school, cross my eyes, wait for the diamonds to pop out. All these habits that must have looked strange to other kids, but they helped me soothe myself.”
Berkner’s other little secret? “I don’t listen to music that much. It’s too much stimulation, and I can’t take it in. Maybe that’s why I identify a little bit. When I find something soothing, I’ll listen to it over and over.” And that, Berkner says, is how she writes for kids: she goes back to the person she was, the anxious little person, and asks, Would I have liked to listen to this?
“For those of us who are alone in our heads a lot,” Berkner continues, “music can draw us out.”
That’s what Berkner’s concerts do—for everyone, of course, but maybe a bit more for someone like Gus. When he was little he wanted to spend all his time alone. He couldn’t have a real conversation with other kids. A Laurie Berkner concert was his first chance to be a full and equal participant in a shared community.
* * *
Here’s another thing about music. It’s obviously an emotional wellspring to most of us. But for autistic kids, it can teach them about other people’s emotions.
One outgrowth of the autistic person’s lacking the “theory of mind” is that many cannot read other people’s facial expressions. When Gus was little and had done something to make me crazy, I spent a lot of time pointing at my head and shouting, “SEE THIS FACE? THIS IS NOT A HAPPY FACE,” and he would cock his head like a Scottish terrier, trying to suss out what my face meant. Eventually he learned to distinguish Happy, Sad, and Angry. But think how many expressions there are. He could no more tell you what frustrated or wistful or jubilant looked like than he could tell you the square root of pi.
And that’s where music came in. Because music does one thing for kids on the spectrum that words often can’t do. Geraldine Dawson, a psychiatrist and the director of the Duke Center for Autism, studies the effect of music on the brain; she explained it to me one day. “You know how so many kids on the spectrum love Disney movies?” Dawson says. “Everyone has been trying to figure out why. But we think it’s because the music in the movies gives the kids emotional cues—cues that they wouldn’t pick up just by looking at people’s faces or listening to what they said
.”
Dawson’s theory seems so right. At a certain point Gus became obsessed with the song “Poor Unfortunate Souls” in The Little Mermaid. This is the point in the movie when the octopus witch Ursula, who is willing to give Ariel a human form if she forsakes her beautiful voice, is singing about all those creatures who have given voices to her. Gus would sing that song again and again and again, turning to me, with eyes shining bright, explaining: “Ursula is a villain, ha-HA.” She was a safe introduction to the idea, previously completely missed by him, that other people could be “in pain, in need”—and that there were some people (or octopuses) who enjoyed that. Ursula was Evil, neatly packaged and explained. Once the music cued Gus in to evil, there was sort of a cascade effect in recognizing the signs that a person may be up to no good.
Around the time “Poor Unfortunate Souls” was in heavy rotation and Gus was wanting to wear his Ursula costume to school every day (the eight legs were cumbersome), I found him studying a website called Evil Eyebrows. It featured images of the Joker, Scar in The Lion King—and Jack Nicholson in The Shining (which really could have been Jack Nicholson anywhere, I suppose). “Yup, those are evil eyebrows all right,” Gus said with satisfaction. “You see, Mommy?” And then he gave me his best Evil Eyebrows, which were really more like Groucho eyebrows, but never mind; he was practicing connecting a facial expression with an emotion. An emotion that is far subtler than mere Happy, Sad, or Angry, and therefore very hard for him to see. It was the facial-recognition equivalent of the SATs. He is still getting there, but it was music that sent him on his way.
Whenever I think I can’t stomach one more minute of Gus’s constantly repeating the same videos and music on the iPod and on YouTube, I think of my conversation with Geraldine Dawson. The fact that Gus can control the movie on YouTube or Netflix—can stop it, rewind, play it over and over again—or can stop and replay music on my iPod so many times it makes my ears bleed—all this seemingly annoying behavior means he can take in the world on his own terms and at his own pace. Starting and stopping, breaking a song or a movie down into notes or frames, repeating ad nauseam—it all looks insane. But these damn screens and machines give him entrée into all the communication we take for granted. The screens may not be real life. But just maybe they are providing scaffolding to help him create that life.
* * *
To this day, Gus’s everyday world is defined more by music than words. If I ask him to do something, he may ignore me; if I sing that same request, he obeys (even when I’m out of tune, which is pretty much all the time). Sometimes he seems to have a form of synesthesia, a confusion of sights with sound. I realized this when we were walking to school recently and he saw a rainbow.
“MommyMommyMommy, look!” he said, pointing at the sky. “It’s a major-chord day.” Dark, rainy days are minor-chords days, and if he knows something fun is going to happen at the end of the day, the day is a crescendo.
John’s dreams for Gus’s future have always centered on music. (And for a while there, Henry’s career centered on being Gus’s manager.) When Gus took singing lessons, he was a perfect boy soprano, and his teacher wrote me gushing notes about his musicality. The problem was that he couldn’t look at the audience, so his performances were facing backward while he hopped. This worked pretty well for Pinocchio’s “I’ve Got No Strings (To Hold Me Down)” but not much else. When Gus could finally move his fingers separately and thus take piano lessons, I was shocked to find him listening to songs online, then going over to the piano and playing them by ear. He’s not a savant—he makes mistakes and takes a few tries to get it right—but he can do it almost effortlessly, and with great feeling, too. In fact, too much feeling: He sat down to play “Scarborough Fair” after he heard it, and made himself cry. Then he did it again, and cried again. And now he won’t play it at all.
And therein lies the problem. It doesn’t matter how good he gets; I can’t imagine him performing in any way. Or, rather, before he does, he has to have that thing he has yet to develop, that theory of mind, so that he understands he is doing this for others, not just himself. You can’t be a good performer if you haven’t mastered the concept of audience, of playing for the enjoyment of others.
But really, who cares? He revels in the music for himself. At night he’ll sit down and play the eclectic collection of pieces he loves: “Für Elise,” Disney songs, Lady Gaga, the Beatles, scary music in horror movies (he enjoys those notes of warning we get just before the severed head plops out of the closet). But I’ve noticed this: he won’t play Laurie Berkner, ever. He can listen to her all day. He knows every song. But he will not even attempt to play her, despite my cajoling. I ask him why, and he just shrugs.
I have a theory, though. I think it’s the same reason he wants to watch the buses go in and out of Port Authority, but doesn’t want to ride on them. Some things in life are perfect just the way they are.
Five
Vroom
I can’t stand it. He did it again.
There he is, doing the perp walk. Head bowed, hands cuffed behind him. Another poor black man arrested in his ill-fitting Nike-knockoff windbreaker.
Only it wasn’t guns or drugs. And this wasn’t just another lost soul to me. Every time I look at Darius McCollum, I’m reminded how innocence can be misunderstood and twisted, and worry for Gus’s future.
On November 11, 2015, Darius McCollum walked into Port Authority, the United States’ busiest bus terminal, and took a bus. He got behind the wheel, drove it out of the station, and motored through Brooklyn. Then he got caught. And now he’s behind bars. Again.
A bus is generally the last thing most people would want to steal from Port Authority. (I’d opt for Cinnabons.) But Darius is not most people. He was fifteen when he began his career as a serial transportation thief, impersonating an engineer and driving an MTA subway for six stops before getting caught. Well, that was cheeky for a teenage boy, and Darius became a local hero. He grew up in Queens, in a modest family; he had a fascination with trains, planes, and buses from the time he was a little boy, and by eight had memorized every stop on the New York City subway system. Large and lumbering and decidedly one-note in his interests, Darius was bullied at school; he sought refuge at the terminus of the F train near his home. There the MTA workers, charmed by the smart young teenager, taught him everything they knew. He was a good student. A little too good.
Darius is now fifty, and over the years his habit of purloining public transportation became less adorable. He’s been arrested twenty-seven times—and those were only the times he was caught. He has probably stolen buses hundreds of times, because when he makes off with a bus full of passengers, he doesn’t exactly terrorize them. What he does is drive them on their appointed route, very politely and correctly announcing the stops. Nobody knows they’ve been hijacked.
That Darius is on the spectrum should be a surprise to approximately no one. For the crime of loving public transportation, Darius McCollum has spent over a third of his life in jail. Even when he’s already in deep trouble, he finds a way to sabotage himself. A few years ago, he was living in a new place and told some acquaintances how he could steal a bus nearby. Unfortunately, that place was Rikers Island—there are buses there to transport inmates—and the people he told were his jailers. And that is how a man who never hurt a single person in his life became a flight risk with restrictions on his incarceration greater than your average murderer.
That was in 2013. McCollum had been free for less than two years. This time, when he was caught, he had a fake Homeland Security shield and gave officers the ID. McCollum was charged with grand larceny, possession of a forged instrument, impersonating a police officer, unauthorized use of a vehicle, possession of stolen property, and trespassing, police said. At his arraignment several days later, his attorney, Sally Butler, said what anybody who has spent thirty seconds with an autistic person was thinking. “If Darius can walk onto a bus, they should hire him to teach them how to catch terrorists
. . . Why not? Let one hand wash the other. If anyone can just walk into Port Authority and steal a bus, you think maybe we need some assistance?” When I read this, I thought about the 2002 Leo DiCaprio movie Catch Me If You Can, based on the true story of Frank Abagnale. Before he turned twenty, Abagnale had impersonated so many people and pulled off cons worth so many millions of dollars that finally the FBI hired him to help catch other check forgers. Admittedly, there isn’t as big a market for transportation thieves as con men, but surely there has to be a way for the feds to put McCollum’s skills to use.
A few months later, from his cell at Rikers Island, McCollum asked for help. He explained that the obsession that had put him behind bars for half his adult life was out of control. “I can’t seem to get myself out of this on my own,” he said in an interview with the Associated Press. “But what am I supposed to do? There’s no AA for buses or trains.”
* * *
Many, many little boys go through what I think of as the Choo-Choo years: usually sometime between two and seven, trains (and often planes and buses) become everything to them. Then the passion ends.
But for many people with autism, it never goes away. In fact, it often intensifies.
Certainly it did for Gus. For the first year of his life we couldn’t travel by subway because Gus would shriek from the moment we walked onto the platform. But that agonizing fear of the noise and action turned within a year to rapture. The first sound he made was not “Mama” or “Dada,” but the “bing . . . bong” that warned of the subway’s closing doors. Before he could form his own sentences, before he would even ask for milk or juice, he would turn to me and say, apropos of nothing, “Stand clear of the closing doors, please.” Later, when he began watching YouTube, that directive would be repeated in its various permutations around the world: UK, “Mind the gap”; Germany: “Türen schliessen”; Japan, “Happoufusagari!” When he and Henry were three, their Thomas the Tank Engine and Friends toy trains were marked with bits of red and yellow tape, respectively. Gradually all the trains were tipped with yellow, as Henry became adept at ripping off the red tape and marking all the trains as his. But when Henry’s train love gave way to Power Rangers at five, Gus got them all and continued to expand his collection. Today, we have all ninety-nine characters (or is it a hundred?) and many multiples. He will not give them up. When he needs to unwind, he stims with them, making that click-clack sound trains make. He’s confined to doing this in his room because the sound is as annoying to everyone around him as it is relaxing to him, and frequently I ask if he’s ready to donate the trains to a younger kid. “I will,” he says. And then, after three seconds of thought, “But not now.”
To Siri with Love Page 6