To Siri with Love

by Judith Newman

  If only.

  * * *

  Oh my God, though, the boredom. Before Gus, I’d always seen ennui as a character failing: if I was bored, that was my problem because the world is too fascinating a place. I now know when I began to question this belief. I was looking back at an email I’d written to a friend, venting about John. It was long before we had kids. Because we never lived together, we tended to call each other frequently. John lived on the Upper West Side of Manhattan, and I lived downtown. This was the email:

  It’s 9 am, and John and I have already had three conversations about the subway. I live in dread of changes in the subway system, because every time the #2 temporarily goes local or the N & R aren’t stopping on Prince Street, I must listen to several daily updates. The phone rings. “Good morning! Did you hear that today the uptown F is not stopping at . . .” and I want to scream, HELLO, HAVE YOU NOTICED THAT A) I BARELY EVER LEAVE MY HOUSE AND B) I DON’T GIVE A SHIT? But if I didn’t listen to this, I think he’d be calling up strangers and discussing the MTA with them.

  It’s one thing to admit that your husband’s love for unwavering routine is tiresome, but who wants to admit your own child bores you? And I don’t mean just the boredom of being with a baby—what my friend Moira describes as “hanging out with a crapping, screaming roast beef.” I’m talking about the boredom of being with a sentient human. Teenagers may be many things, but dull is usually not one of them. Henry is an obsessive sports fan, reluctant reader, and hater of musical theater, meaning the overlapping area in the Venn diagram of our common interests is the size of a pinhead. But at least we bond over politics and cute animal videos. Why couldn’t I find something to share with Gus?

  We all have different ways of coping with the boredom. For me, all it takes is a couple of cosmos, and I can feel my frustration slipping away. After thirty years living here, I still have a crush on New York City. And there is such promise right outside my door. All I have to do is slip on this little black dress, wedge myself into my highest heels. Then, soon, the throbbing of the music, the square-jawed stranger waiting for me, and the zipless . . .

  “Mom, have you been hitting the sauce again?” Henry says the next morning as he looks around the kitchen. Lemon carcasses and Brussels sprouts are scattered everywhere. My head hurts.

  What I actually do when I’m bored and drinking is search Epicurious.com for something I can make that very minute with ingredients around the house. Family, I spit on your bourgeois pizza-and-chicken-finger lives! Under the influence—which might mean two, maybe three drinks, because I’m an animal—the idea of making Brussels sprout chips seems a sound one, even if it means spending an hour in the kitchen separating the sprouts into individual leaves. Then, I guess I must have thought that the chips would need a spritz of lemon, and I found I had an entire bag, so I got out my hand juicer and went to town. Finally I must have exhausted myself, because I didn’t actually make the chips but stuffed the leaves in a plastic container in the refrigerator and left the juice in a flask on the counter. Later I found I had grated the lemon peel and placed it in the freezer, neatly sealed in a Baggie.

  But for a couple of blessed hours around midnight, I was not discussing weather, trains, or Disney villains. PS, Brussels sprout chips are awesome tasty close to edible a totally lame food.

  * * *

  Recently Gus and I were standing at the top of a very steep escalator, looking down on people’s heads. In the past ten years I have probably spent more time watching escalators than going to movies. While there, I try to see what he sees. There are the people fidgeting and bobbing, the unpredictable swirl of color and motion. They are juxtaposed against the predictable grid of silver marching stairs. It’s the stairs he loves most of all. “Mommy, look how beautiful,” Gus says, enthralled. “Look!”

  I see people riding an escalator. Maybe it requires magic mushrooms to see it the way he does.

  * * *

  The desire for repetition and predictability is not just emotional—it’s a physical need as well. Hence the autistic behavior known as stimming. “Stimming” is the shorthand term for self-stimulation. No, not that. It’s a repetitive behavior that is both calming and pleasurable to people on the spectrum—rocking, flapping, spinning, or, in Gus’s case, making the click-clack sound trains make. He’ll do it with toy trains, but when they’re not readily available he’ll do it with pencils, or maybe salt and pepper shakers. This makes for good times at restaurants.

  One of great debates among parents is: To (let your child) stim or not to stim? Parents ask themselves, What else could my child be doing instead of spending hours in a seemingly meaningless activity? I pondered this for many years, heard differing opinions from parents and teachers. Finally it occurred to me to go to some people who really might have the inside scoop on stimming: autistic adults. And while there’s debate about how much stimming and when, the consensus seems to be: Let ’er rip. Because if the person doesn’t spend at least some time in the day stimming, he can pay a steep price.

  Amythest Schaber, who looks like everyone’s favorite manic pixie dream girl, has created a series of videos on YouTube called Ask an Autistic. (She also makes T-shirts with slogans like “Neurodiversity,” “Disability Is Not a Bad Word,” and—my favorite—“Flappiness: When it comes to expressing happiness, there are no wrong ways.”) These videos should be required viewing for every parent of an autistic child. Stimming happens for several reasons, the most important being self-regulation for those suffering from sensory disorders. For example, for Schaber, bright overhead lights are not just uncomfortable to her, but “like spears of hot pain going into my eyes.” She is not being a drama queen here. This oversensitivity (and sometimes undersensitivity) to sensations like sight, hearing, smell, and taste is very real for ASD people. In her case, Schaber copes with the lights—and other sensory awfulness, like people chewing gum or talking loudly nearby—with a variety of stimming behaviors: rubbing an eraser, or tapping something, or maybe spinning a little in her chair.

  When Schaber was a kid her parents always discouraged her from these behaviors, in a (certainly understandable) attempt to make her appear normal. But normal, Schaber argues, is overrated. She asks the question all of us should ask: If a behavior looks weird but doesn’t hurt anyone, why stop it? If, say, your kid has done his homework, eaten dinner, and taken a bath, why get upset if his source of joy is holding a flashlight to his face and flicking the light switch on and off for two hours?

  “Looking normal drains your energy,” Schaber says. “It’s terrible when you have to put up with all the negative sensory input without being able to self-regulate . . . You get exhausted, and maybe you could spend an hour at a party instead of ten minutes if only you were able to spin.

  “When it comes to looking normal versus being able to live and be a happy functioning autistic person who stims, I take the latter,” Schaber adds.

  Me, too.

  * * *

  The passion for sameness and repetition will probably never leave Gus. In a person of great cognitive ability, our world can change because of autistic single-mindedness. Isaac Newton, rumored to be on the spectrum, did not discover gravity in between his many other hobbies; he just thought about this subject all the time. In a person of Gus’s more modest abilities, it means that when he’s hanging out in our lobby, every person who is unsure how to get somewhere by subway knows that all she has to do is ask Gus and he’ll tell her the quickest route. Lots of neighbors know they don’t need to check Google Maps anymore. Gus is their Google Map.

  I do my best to put Gus’s desire to do the same thing all the time to good use. He is my little Sherpa, happily running up and down the stairs to shut off the lights if I am too lazy. Every night, right before I go to bed—and whether I need it or not—he brings me a glass of water, with a great flourish. To get him to move off a piece of music he loves is difficult. But then isn’t that the essence of practice?

  Does he even understand that m
ost people are not entranced by escalators? That he doesn’t see the world the way most others do? I’ve tried to approach the question a few times—“Do you know you are autistic?”—and he always acts like he doesn’t hear me. I want to understand what he’s thinking. Is he thinking?

  I keep trying.

  * * *

  I am a seeker of novelty. Most journalists are. But my own love of the New, powerful as it is, doesn’t stop me from occasionally grasping what Gus feels.

  I have an office in my apartment building, three floors above my home. One day I was pontificating to my officemate, Spencer, about how I don’t understand why people cling to useless material things, and after listening to me gas on for a while, he said quietly, “Your parents have been dead five years. You have everything in a storage locker. You’ve never even gone up there to look.”

  That’s where he was wrong. About a year after my mother died, I went up to the huge storage unit that housed a life’s worth of goods. It smelled like the mold that took over my parents’ house in the last years of their lives. Much of it was worthless, though I thought there could be some treasures among the dreck. I had an appraiser come up there. We were going to go through everything. I would be ruthless.

  I opened the door, looked in the unit. There was one particularly ugly lamp that had stood next to my mother’s bed for forty years. It was brass, and had little cherubic figures dancing around its base, accompanied, for some reason, by sheep. It would be the first thing I’d dump.

  I stared at the lamp, shut the locker, paid the man for his time. It’s been five years of paying storage for things I’ve never liked, even when I was a kid. And I’m still not ready.

  Same is sometimes not a choice.

  Four

  I, Tunes

  Gus got a card in the mail today. It was a CD, plus a letter from Laurie.

  LAURIE!

  Hi Gus!

  It makes me so happy to know that you still enjoy my music. You are such a wonderful person and I’m so glad I know you.

  I hope you never stop making and enjoying music!

  Love, Laurie

  She signed her CD:

  Keep on singing—and shining bright!

  Laurie Berkner

  Now if you don’t know who Laurie Berkner is, that is because you have not had a child under six in the past decade. It means you cannot recite the lyrics to “Victor Vito” in your sleep, and furthermore you do not know that Victor Vito and Freddie Vasco (who ate a burrito, with Tabasco) are composite names of Laurie’s accountants. Or that “We Are the Dinosaurs” (“Marching, marching”) originated as a song when Berkner was teaching preschool, and she wanted a song that could help the kids work off a little steam. You also are unlikely to have a special Laurie-designated stuffed animal so that when you’re attending a concert and she starts in with “Pig on Her Head” you are prepared with your own personal pig (or cow or, in our case, giraffe, because that’s how we roll). You have not, in other words, experienced the Phish of four-year-olds.

  And that’s too bad, because she’s actually a wonderful singer and composer. None of this “Baby Beluga” crap that’ll make your ears bleed. Laurie Berkner’s music is so catchy that I used to suspect people borrowed other people’s kids just to go to her concerts.

  Of course, if your child is over eight, he or she has probably moved on to Taylor Swift, Katy Perry, or, God help you, Miley Cyrus. Laurie is a memory for a certain enchanted period of youth. Your kid is not going to be subbing “We Are the Dinosaurs” for Mendelssohn’s “Wedding March” on that special day.

  At least, most kids won’t. But there is fandom, and there is autistic fandom. This is the story of Laurie and Gus, and how sometimes, no matter what, there are people and places you just can’t quit.

  * * *

  Nobody knows for sure why music means so much to so many people with autism. There are theories, though. Brain-imaging studies on those with autism show abnormal activity in areas of the brain associated with language and the processing of social information, like faces. But the parts of the brain that are receptive to music are undamaged, and may even be particularly well developed. Autism is considered a communication disorder, but before there was language there was music—or at least that is what more and more evolutionary scientists think. (Charles Darwin talked about our ancestors singing love songs to one another before they had articulate language.) Repetition, rhythm, melody, tone, duration, volume—all can reach even profoundly autistic people in a way language and visuals often can’t.

  At various points in his life Gus has taken music therapy, singing lessons, and then, when his voice began to change, piano lessons. Whatever the class, it was always the highlight of his week.

  The musical group therapy was, to my ear, a group of kids banging on random instruments. In fact, it’s much more. Alan Turry, Gus’s teacher at the Nordoff-Robbins Center for Music Therapy, has seen music reach kids who never spoke or reacted to anyone. Turry believes that certain scales reach them before they are ready for more sophisticated ones. Pentatonic scales for example—used in Chinese and folkloric music—are open-ended, and don’t call for resolution the way dissonant chords do. They are seductive and meet you on your own terms, he says.

  “It’s wrong to generalize about people on the spectrum, but I will say that music can be not only a connection, but eventually a first form of conversation, a back-and-forth that people who can’t use words can take part in,” Turry told me. For those like Gus who do have words but still have trouble expressing themselves, music can be a language more fluid for them than regular conversation. “Gus is so musical that in some ways he may gain more self-awareness through music than he does through conventional language,” Turry adds.

  Turry then illustrated his point with something I’d forgotten from years ago. When Gus was little, I could never get him to wait his turn. I chalked it up to impulsivity, part of his condition. But in fact he could wait just fine if he was asked to do so in music therapy class. When he was sitting with a bunch of kids playing percussion instruments, he learned about turn taking easily because his instrument organically came in at a particular time in a piece that they played. Ergo, music could convey an idea to him where I couldn’t.

  When I think about it now, this has always been true. From the time he was a baby, sound had meaning to Gus where words did not. When we talked to him, Gus generally didn’t pay much attention; often he wouldn’t even turn his head in our direction. But if we played music, he’d snap to. A music box—literally a plastic box with sides that you smacked and snippets of classical tunes would come out—was his constant companion for years. He would cry if I played certain songs, particularly the theme song to Cheers. (Hell, I could make myself cry with that one. Plaintive melody + the lyrics, “You want to go where everybody knows your name” = Wahhhhhh.)

  As he got older, he would listen to my iPod for hours, staring at the titles as they cycled through. He didn’t always listen to the songs in their entirety, which annoyed me. But clearly he absorbed them. That iPod resulted in his favorite party trick: identifying any of the hundreds of songs from just two or three notes and, often, just a fraction of one note.

  I still have no idea how he does this. But I do know that if someone reinstates that old game show Name That Tune, Gus will be a millionaire. As it is now, Henry has turned this talent into a betting game with unsuspecting friends. Henry needs to get some new friends, because by now they all know not to bet against Gus, and his source of easy money has dried up.

  From an early age Gus loved Mozart and Beethoven and Chopin, and he had perfect pitch, a talent that pleased his father, the singer. This gift is not even unusual. But at the same time, the pleasure of finding out he was musical at least softened the blow of his many limitations. Plus, it’s kind of nice having a karaoke bar in my own home, as Gus tends to sing along with whomever he’s listening to on YouTube. He sings as much as he talks.

  I wanted to play up his strengths
, so when Gus was seven, in addition to the music therapy classes, I enrolled him in a voice and music class with neurotypical seven- and eight-year-olds. He was kicked out after one session. He got the idea of reading music right away. But then he wandered off, put his fingers over his ears, sat in a corner, and started making train noises. I felt an overwhelming despair for him; he couldn’t do the thing I knew he loved. The teacher saved the day, as teachers often do. “He can’t have lessons in groups,” she said, “because when he hears people singing off-key, it kills him.”

  Of course. I should have remembered. Now, Gus’s inherent way of seeing the world means he never says a bad word about anyone—every woman is pretty in Gus’s eyes, every man handsome—but there is one exception. I love to sing, know the lyrics to dozens of musicals, and am tone-deaf. As soon as Gus sees me preparing to belt out, say, “Oklahoma,” he claps his hands over his ears and runs out of the room, screaming, “NO NO NO NO NO NO!”

  When he got individual voice lessons with no chance of encountering singers like me, he flourished.

  * * *

  The day Gus discovered Laurie Berkner I remember thinking, Oh, thank God, I won’t have to listen to Barney anymore. There she was, every day, on Nickelodeon, all boingy red curls and mismatched neon jeans and tops, a look that complemented her traditional folkie voice. The songs tapped into the things the littlest kids loved—being chased (“I’m Gonna Catch You”), their fascination with their own babyhoods (“Five Days Old”), their worries assuaged (the dark is not so frightening once you hear “Moon Moon Moon” since now you know the moon is “your nightlight”). He was hooked. So was I. There are several songs that are meant to be happy, but bring adults to tears. Henry enjoys making me cry by playing Laurie’s “My Family” (“When you’re in my heart / you’re in my family”) juxtaposed with all different kinds of family configurations—go ahead, put this book down and YouTube it now. I dare you to get through it without blubbering.