To Siri with Love

by Judith Newman

  I don’t immediately notice we’ve switched gears. “Oy, dahlink, you’re getting a little heavy, maybe it’s time to switch to cottage cheese and melon?” I say to the elephants.

  “Mom, seriously, what do you think? You know he wants to live in New York City. How will he afford it?”

  Gus walks into the living room. Henry turns to Gus. “Gussie, where are you going to be living when you’re twenty?”

  “Here.”

  “How about when you’re forty?”

  “Um . . . here?”

  “Mom!” Henry’s getting worked up now. “What if I can’t make enough money to keep him here? Are you leaving enough? This apartment is very expensive. I don’t care if it’s paid for, I saw your maintenance bills.”

  “Oh, look, baby sloths! Hanging upside down, this is murder to my paws. The arthritis . . .”

  “Mom, focus.”

  Money worries are never far from Henry’s mind. Perhaps this is natural if you’re the kind of person who needed to know how interest rates worked when you were six.

  Gus is ignoring Henry, albeit for different reasons. “I am going to live here, and help out Jimmy, Jerry, and Dennis.” These are our doormen. “And I will go everywhere by myself someday. Right, Mommy?”

  “Honey, we’ve talked about this.”

  “I know how to go everywhere by myself,” Gus says.

  “I know you do. That’s not the problem. The problem is that you talk to whoever talks to you first.”

  “I’m a friendly guy,” Gus says adamantly.

  “You are friendly to people talking to Jesus through the fillings in their teeth,” Henry interjects. “And then you give them your money.”

  “They need money.”

  This is a well-worn subject, and because of it I keep promising I’ll let Gus walk to school by himself—only six blocks away—and then I break my promise. In fact I picked his new high school, the Cooke Center Academy, partially for its proximity, partially for its excellent job-training program for its graduates, and partially because it is run by the nicest humans on the planet. Gus’s teacher is funny and smart and great in the classroom, but before she did this, I have no doubt she was great in her other career, as a plus-size burlesque dancer. I respect people who’ve had a few different lives. Normally Gus doesn’t want to do anything for himself. Walking to school is the one thing he wants to do on his own.

  But the bigger question, Henry’s question, is mine, every moment of every day. Is my little guy going to make it on his own?

  On bad days, I focus on all the things he can’t do rather than the things he can. And then I think of all the things he couldn’t do five years ago that he can do now. Life becomes a series of “on the one hand/on the other” propositions.

  On the one hand, there are so many little bad habits that still need to be broken. The front of his shirt is not a napkin, for instance. On the other, he can put on clothes the right way around. This is no small feat. It was only when I realized that there was something consistently wrong with his spatial perception—it wasn’t a matter of chance; he would put his shirt and pants on backward 100 percent of the time—that I came up with the genius solution of saying, “Put them on the wrong way.” Now he knows that the way that is wrong to him is right. This is working with hair, too. I tell him to brush his hair back, and he ends up looking like a cockatoo. Then I realized that “brush it forward” means he’ll slick it back like James Dean. I’m not sure we’ll ever have success with grown-up shoes, though. One day I was lamenting to Mr. Tabone, the principal of his school, that my son would never learn to tie his own shoes. “You know, Judith, you really have to pick your battles,” said Mr. Tabone, pointing to his own feet. Mr. Tabone rocks Velcro, and so will Gus.

  Why exactly is it that he can’t tie his shoes or use buttons, yet can play the piano with fluidity and grace? There are some things I will never understand. But it may be as simple as this: music matters, and the other things don’t.

  On the one hand, there is no sign that he will be able to completely handle his own finances. Maybe I shouldn’t be comparing him to his brother, Alex P. Keaton, but the whole notion that Gus will ever be able to pay his bills himself or keep money from the predations of, well, anybody seems absurd. “I will have to manage his money,” says Henry firmly. “Which means you’ll have to leave me a little more. As a consultant’s fee. Right? Mom?” But on the other hand, Gus no longer thinks that the way you get money is that you go to a bank machine, put in your card, and it comes out. For the longest time, as far as Gus was concerned, money didn’t grow on trees, but it did live in ATMs. And why not? Machines have always been very good to him. This was just another instance of their kindness. At least he now knows that you work for money. Everything else about it is a little fuzzy.

  On the one hand, Gus says hello to everyone he meets, asks them where they’re going, asks about their kids, whether they want to talk or not. On the other hand, he genuinely wants to connect, even if it’s on a superficial level. And sometimes that very superficiality is welcome. I sometimes get emails from neighbors if Gus isn’t downstairs waiting to say hello in the evening. As one said to me a few days ago, “There’s nothing like being greeted by Gus at the end of a tough day.”

  On the one hand, Henry still completely dominates him, and Gus will never cross him or fight back in any way. On the other . . . Well, here, too, technology has come to the rescue. At the beginning of the summer Henry and I were having a major blowout over him going to a week of summer camp. Somewhere around the time he was screaming, “You hate bugs and no air-conditioning, what makes you think I would like them?,” I received a text from Gus, who was stationed in the other room, listening to us: “Henry is a fool a idiot he always drives you and Daddy crazy.” I was so amused, I was able to ignore Henry’s ranting for a while—“Why don’t you just put your money in a pile and burn it?”—and had time to reflect on what this scene would have been like a couple of years ago. It would go something like this: Henry would start to shout, and then Gus would escalate with his own hysterical screaming for no reason whatsoever since no one was even talking to him. Then he would run into his room and slam the door, and I’d have to follow him to make sure he hadn’t passed out—because he would probably also be holding his breath.

  As I’ve realized over the years, autism is a dysfunction of empathy, not a lack of it. In the past Gus would often wildly overreact to any discord going on around him; he was incapable of minding his own business. Again and again this got him into trouble, particularly in school, where he would insert himself into every minor fracas if it involved someone he cared for. “Henry is a fool” may not seem like the most helpful response, but it showed a certain sense of proportion—not to mention a correct reading of the situation. Bonus: he didn’t try to make himself faint.

  * * *

  The government has responded to this increasingly common mental condition by throwing lots of money into research. Every week seems to bring a story about a discovery that may lead to better understanding of the condition. Genes that seem to be implicated, structural differences in the brain. Different neural connections of autistic people, different microbes in the gut, mitochondrial disease . . . tantalizing clues, but nothing even close to definitive.

  Science moves slowly—too slowly for many impatient families living with spectrum kids who only want to know, What are you going to do to make it better? For example, in 2015 the National Institutes of Health put $28 million toward the Autism Biomarkers Consortium project, which purported to be able to identify children with autism earlier. That sounds good, except what they were identifying were not quantifiable markers like autoantibodies, immunoglobulin levels, T cell counts, and other biological measures of disease. Instead the NIH decided “face processing,” “eye tacking,” and social communication are biomarkers to be tested by overnight observation in a hospital with repeated EEGs. (If you think being tethered to electrodes and then ordered to sleep in a strange
hospital bed is tough for a neurotypical kid, try doing it with a kid on the spectrum. There aren’t enough vanilla Frappuccinos in the world to get us through that.)

  Using these biomarkers, the goal for early identification of autism is six months. But approximately 40 percent of children develop autism symptoms after the age of one, and even with the best early intervention, only a very small percentage of kids lose their autism diagnosis. For that reason, research funds spent on early diagnosis have been of questionable value. Far better, I think, to channel resources to prenatal genetic testing and treatments to see if something in the womb environment is causing increased rates of autism. Or spend it on investigating environmental causes. Perhaps most important, in addition to research, spend money on treatment; help autistic people to recognize their potential, whatever it may be. I don’t need biomarkers for anxiety, or poor eye contact, or poor spatial perception. You only have to go to Gus’s school, sit in a chair, and note that half the kids are staying as far away from you as possible, and the other half are speaking two inches away from your face—and almost none are looking at you. There, NIH, I just saved you $28 million.

  * * *

  “I remember my dream from last night,” John said recently over dinner. “You were hitting Gus over the head with the blunt end of a gun.”

  “So this may not be the best time to ask you if you think I should let him walk to school himself,” I said.

  “He cannot,” John said.

  “He is fourteen.”

  “He will see a fire truck, wave, and get run over by some other car.” This was about the five hundredth time John had said the same thing.

  “You know, I don’t think he will anymore. I’ve been following him.”

  “By the way, did you read that story . . . ?” John began.

  “Let me guess,” I said. “Leprosy is making a comeback. Or maybe it’s about how I can be cured of some disease if I eat Brazil nuts.”

  “No,” he said, “well, not today. It’s about that Simon Baron-Cohen. There was a riot.”

  It was only a riot in John’s fevered imagination. But we’d been talking about the psychologist and autism researcher Baron-Cohen, who was the originator of the ill-fated Autism Spectrum Quotient test I had made John take. The story John had read in some British paper was this: Baron-Cohen was denounced by a group of disabled students for a lecture he’d been giving that suggested that within the next five years there would be a prenatal screening test for autism. The disabled students at Cambridge were outraged. Autism was not something to be cured—or eliminated. Instead, it was something that had to be understood culturally, with a shift toward the idea of neurodiversity. Autism was a natural variation in the human condition, and not one meriting alteration or eradication any more than homosexuality.

  Henry walked in at that moment, crunching potato chips so loudly that it took me a while to concentrate on what he was saying rather than on my desire to chuck the chips into the garbage.

  “So what do you think?” Henry said. “If you could have had the test and known Gus was going to be autistic, would you have taken it?”

  “Yes,” I said.

  “And if you find out tomorrow there’s a cure for his autism, would you get it?”

  At this point John looked up from his paper.

  “No,” I lied.

  Actually, I have no idea. Autism is a spectrum, and wherever Gus has landed on that spectrum, he is currently a happy person. I adore him just as he is, and autism is so much a part of his Gus-ness.

  But over a lifetime, many people suffer deeply. A 2015 study in the British Journal of Psychiatry found that people with so-called high-fuctioning autism are about ten times more likely to commit suicide than those in the general population.

  So whether or not I would “cure” Gus if given the chance is impossible to answer. On every autism discussion board and support group in the world, there are fights breaking out between adults with autism who hate the idea of a cure, which insinuates that they are damaged, versus parents who are desperate for that very thing. It is the ASD equivalent of the fight in the deaf community about cochlear implants, or among those with dwarfism about limb lengthening. Why can’t there be a community and culture of deafness, or little-people-ness, or spectrumness? Why is “normal” always the goal?

  Well, it’s not, and it shouldn’t be.

  But at the same time, it’s not for the disabled students at Cambridge to condemn the idea of a cure for autism. If you are on the spectrum and you’re at one of the finest universities in the world, you cannot speak for the person alone in a room, forever spinning the bright shiny object.

  * * *

  Often when I watch Gus now, I hear this refrain from “Puff the Magic Dragon”:

  A dragon lives forever but not so little boys

  Painted wings and giant rings make way for other toys

  One gray night it happened, Jackie Paper came no more

  And Puff that mighty dragon, he ceased his fearless roar . . .

  It’s at this point that I get weepy and Gus, having no idea what I’m thinking about, comes over and asks me if I’m OK. Admittedly I think “Puff the Magic Dragon” is the saddest song ever written. But now it confuses me. Am I crying at the idea that Gus is moving on from childhood, or the thought that maybe he won’t be able to?

  But this much I know: today’s grim certitudes give way to tomorrow’s cheering possibilities, often at the most unexpected times.

  I decide to ask him the question I’ve been prodding him with for the past year. “I haven’t asked you this for a while, but I’m curious . . . do you know what being autistic means?”

  Gus lays his head down on his computer and covers his eyes. First, as usual, he tries to change the subject. I press him a little. Finally, without looking at me, he says, “I know I have autism.”

  “And what does that mean to you?”

  “It means there are things that are easier for me than for other people, and things that are harder for me. I know I’m different,” he continues, his voice barely above a whisper. “But it’s OK.”

  He raises his head and does what is so difficult for him: he looks me directly in the eyes. It’s a beginning.

  Then, we’re back to our current hot topic: “Can I walk to school?”

  * * *

  It had rained overnight, and now wet tires crushed the damp and exhausted leaves speckling the street. The air was fresh, and the wind was picking up. “Today is blustery,” I said. “Today is a minor key,” Gus said. We were both right.

  “OK, honey!” I said brightly. “Let’s go over what we talked about.”

  “AccuWeather says the temperature is forty-nine degrees—eeee—with a 4 percent chance of thunderstorms tonight . . .”

  “Not that,” I said. “The other stuff.”

  “I told you, Mommy, I won’t talk to anybody. Unless it’s a friend.”

  Great. That doesn’t exactly narrow the field.

  “GUS. Look. Just for six blocks. No talking to ‘friends.’ Just go. And text me when you’re there?”

  “Of course, Mommy.”

  For the first two months of high school I had walked behind him, which meant he’d turn around to wave at me every thirty seconds. So I ducked behind trees and gates like some sort of very bad cartoon spy. He always turned and waved. One day he stopped and chatted with a large African American stranger. This is my shame: I went bounding after him, and in less than one block I was out of breath, glasses askew, my hair wild, sporting what I like to think of as my gym clothes but which are in fact my pajamas. “Hey, I’m Gus’s math teacher,” the man said. “Hey! I’m Gus’s mother, the middle-aged racist,” I didn’t say. We shook hands and I explained what we were doing. He laughed, and they continued on their way.

  I decided the solution would be to have him walk to school with another kid from his school, taller, older, seemingly self-sufficient. Then one day I saw the boy who would have been Gus’s safety net bend
down in the middle of the street to tie his shoe—headphones on, seemingly oblivious to oncoming traffic, like one of those sacred cows in India that assumes the right of way.

  I gave up on that kid, continued to walk Gus, and we practiced texting when he got there. During this time I hadn’t had the heart to “test” him by getting a stranger to approach him. Maybe I should have. Yes, I definitely should have. OK, this was dumb. I can’t do it. I decide to call the whole thing off.

  “Mommy? I don’t want to be late.” Gus hates being late. He would have made a fine sidekick to Mussolini.

  “Right, right, OK,” I say.

  It has to happen sometime, right? A dragon lives forever, but not so little boys.

  Gus takes about five steps toward his school, then zooms back. “Mommy, you forgot to me ask me the Question.”

  “Oh, wait, I forgot what it is . . . Let me see if I remember . . .” His eyes shine as he waits. I estimate that at this point I have asked the question 5,142 times, once a day for every day of his life. And I always joke that I can’t remember what it is. To Gus, this never gets old.

  “Wait, I think I remember!” I say. “Are you my sweetheart?”

  “Yes! I am your sweetheart.” Then he turns and walks away.

  I watch until his little silhouette is lost among the morning commuters. About every tenth step, he hops.

  Acknowledgments

  There is only one way to write acknowledgments, and that is while drunk. I love all of you! Well, not you. I’m going to lie down now. Bye.

  I’m back. This book really happened because a British stranger saw an article I wrote about my son and emailed me. When I googled, I discovered he had published the letters of Nelson Mandela and also written a book called Do Ants Have Arseholes? so I knew he had range. Jon Butler, at Quercus: if it weren’t for you it wouldn’t have dawned on me to write this book. Thanks, too, to his right hand, Katy Follain, who had to take over the editing of the book because while waiting for me to turn it in, Jon produced an entire human being and took paternity leave, because he lives in a civilized country where you can do that sort of thing.