To Siri with Love

by Judith Newman

  * * *

  At fourteen, Augustus John Snowdon is the size of a robust eleven-year-old, about four foot eleven and one hundred pounds. He has the dark, expressive eyes of a boy in a nineteenth-century Italian painting. He inherited my slightly beaked preoperative nose, which thankfully looks better on him than it did on me. He did not inherit my Jewfro, instead lucking out with shiny straight seal-brown hair. He is nearsighted, and his glasses are always smudged.

  Gus has a twin brother, Henry. Henry is a head taller than Gus, blond, green-eyed, and fair-skinned. They don’t look like they belong in the same family, let alone like twins. Henry is neurotypical, which, at fourteen, is a synonym for “insufferable.” Being a ferociously competitive person, Henry is always wrestling with this question: How do you prove your superiority over a twin brother who doesn’t care in the least about winning or losing? Henry never stops trying. I recorded this conversation when they were nine:

  Me: Gus lost another tooth today.

  Gus: Will the tooth fairy take me to watch trains tomorrow?

  Me: No, but she’ll give you money.

  Gus: Yay!

  Henry: How much will Gus get?

  Me: Five dollars.

  Gus: That’s OK. I only want a dollar. And the trains.

  Henry: I have one that’s going to fall out, too.

  Me: So even this is a competition now?

  Henry: Do I get extra if I pull it out myself?

  Me: No! What is wrong with you?

  Henry: [sad eyes]

  Me: All right, fine.

  Henry: How much extra?

  Me: Five?

  Henry: So, like ten total?

  [Two minutes later, Henry returns with a bloody tooth.]

  Gus: Yay! Henry did it!

  Henry: That was worse than I thought. How about fifteen?

  Whatever the occasion, Gus is always his brother’s biggest booster. It drives Henry nuts.

  * * *

  I’m not sure if there is a typical look of an autistic kid, though after years of school events I do believe there’s a typical look of the mother: skin a little ashier than the average woman her age, hollows under the eyes a little more pronounced, a smile playing about her lips as the eyes dart about nervously, wondering what might happen next. She is sometimes proud, sometimes amused. She is never quite relaxed.

  Gus’s temperament? Well, my kid is almost definitely nicer than your kid. Sorry, but it’s true. Your kid is almost definitely quicker, more ambitious, and more determined to take on the world. Yours will be running a Fortune 500 company, or a law firm; she will be ministering to people’s bodies or souls or raising families or running marathons. Mine will do none of those things. Yours will probably be trying to figure out what ladders to climb. Mine will be delighted to be on any of the rungs at all, and I will be delighted for him. But if he becomes, say, a Walmart greeter, when he wishes you a nice day he will mean it with all his heart.

  My kid tells me how beautiful I am every day, when by “beautiful” he means “clean.” The bar is low. My kid can’t throw a ball or button a shirt or use a knife or, sometimes, grasp the difference between reality and fantasy. But, oddly, he can play Beethoven on the piano so movingly he will make you cry. If he’s gone somewhere once, he can find his way there again, next month and next year and possibly for the rest of his life. He believes, sometimes, that machines are his friends, and he doesn’t quite understand what a human friend is. But he feels he has them, and he always wants more.

  He is the average kid with autism. He may or may not work, may or may not have independence, friendships, partners . . . He is, like so many others, the adored, frustrating Question Mark. Maybe that’s your child. Or maybe it’s a child you know. And brood about. And love.

  One

  Oh No

  It took seven years and $70,000 for me to get pregnant. My infertility started out as a mystery and with the passage of years became “Because you are old.” Along the way I had five, maybe six miscarriages. I lost count. When I finally got pregnant and stayed pregnant, I threw up every day; John, my husband, would stand outside the bathroom door where I was retching, shouting helpfully, “You have to keep food down, you’re killing the babies.” I only gained seventeen pounds during a pregnancy with twins; postdelivery was the first and only time in my life I was thin. When the placentas completely crapped out, I had an emergency C-section at around thirty-three weeks. John insists the obstetrician told him, “We almost lost them.” A retired opera singer, John is no stranger to melodrama, and I remember nothing like this. But Henry weighed three pounds, one ounce; Gus, three pounds, eleven ounces; and both did time in the neonatal intensive care unit. A baby-loving friend of mine who ran a parenting magazine dropped by to visit. She told me she knew immediately that Henry was extremely intelligent. She said nothing about Gus. Several months later she was diagnosed with esophageal cancer, and when I was seated at her bed in the hospital did not seem like the right time to ask her what she saw, or didn’t see, in Gus. She died soon after. I loved her very much. And I still wonder.

  Did I know something wasn’t normal? Yes and no. I attributed all the little problems to Gus and Henry being twins and being premature. Whereas Gus was hypotonic—meaning his muscles were weak and loose—Henry had exactly the opposite problem. “Well, either he is going to be very muscular, or he will have mild cerebral palsy,” said their pediatrician, comfortingly.

  It turned out to be neither. But the fact that they had physical delays was the fog that obscured Gus’s mental differences. Besides, what did I know? As an only child, I’d spent a total of zero hours with babies. If they had been dogs, I would have known that around two weeks they opened their eyes, and by eight months they would normally stop teething on my shoes. But they were not dogs or parakeets or hamsters or iguanas of any of the menagerie my extremely tolerant mother had allowed me to surround myself with. So their behavior was foreign to me. And in some sort of perverse resistance to the cult of babyhood happening all around me—I live in downtown Manhattan, ground zero for helicopter parenting—I refused to crack the cover of Your Baby’s First Year. Milestone, schmilestone. Unless Gus and Henry had donned top hats and tails and started tap-dancing at six months, I wouldn’t have known that there was anything unusual going on.

  Then there was a moment.

  Henry and Gus were about seven months old. Though Henry’s head was so large and he was so top-heavy he’d keel over if he sat for too long, he was nevertheless sitting up, reaching for things, watching us—standard-issue baby stuff. One day my parents visited, and I was showing them what geniuses their grandsons were. Gus was in his high chair and had this mobile of twirling gewgaws in front of him, and the idea was that he would reach out and bat at the toys. I called it the Bat Mobile. In years to follow I could barely get him to stop spinning things. But now, at the age when it was appropriate, indeed expected, to twirl bright shiny objects, he stared off at some point in space, not acknowledging the toys in front of his face.

  Hoping my parents wouldn’t notice Gus’s utter lack of interest in his surroundings, I picked up his little hands and punched the toys for him. Over and over again. Complete with words of praise for a job well done: “Good job, honey! See the squishy bug? Hit the squishy bug! Wheeeeee!” It was like that movie Weekend at Bernie’s, where Andrew McCarthy and Jonathan Silverman march their dead boss around like a giant mustachioed puppet. My parents, being polite, loving, and a little bit clueless, oohed and aahed, and when they left I stuffed the Bat Mobile down the garbage chute.

  At ten months the pediatrician suggested I have a home visit with an early intervention specialist. Gus was quickly diagnosed with sensory integration disorder, which as far as I could tell meant he didn’t remove a sock puppet from his foot quickly enough. There were undoubtedly lots of tests, but that is the one I remember: a therapist came to our house and placed a little puppet on his foot. I think Gus’s thought process went something like: Dididididi, there’s a d
ragon on my foot . . . Dididididi, look at those big eyes . . . Didididi. Fur . . . Didi. OK, time for it to come off. He stared at it for a long time, whereas apparently the normal reaction is supposed to be PUPPET—OFF. Dawdling over the puppet is a sign that a child has poor tactile sensation and perception.

  At the time I thought it was absurd, as were the other indications of Gus’s alleged abnormality. OK, sure, at ten months he didn’t put stuff in his mouth (no exploring), didn’t look at strangers when they spun him in the air, had aversions to unfamiliar tastes and textures. The early intervention lady tried gently to explain. “There are people who go through their whole life unable to withstand loud noises, or find massage unpleasant, or can’t stand the sensation of sand because—”

  “Because it’s horrible?” I interjected as I inched away from her to wash my hands for the tenth time that day. She was describing me. As a child I would scream if someone tried to put me in a sandbox; I am also a little frightened of anything that might be slimy—fish, okra, milk—and was thrilled to discover recently there is an actual word for it: “myxophobia.” One Halloween, my cousin insisted I scoop out the innards of a pumpkin with her. That day still haunts me. Yet I managed to become a functioning adult.

  And John. My husband and I have always lived in separate apartments because his apartment is a former music studio and therefore soundproofed; he hates loud noise. He is fastidious, too, and as I refuse to line up all my shoes in boxes and arrange my clothing according to texture, we both knew cohabiting was a nonstarter. (Our arrangement piques people’s interest; I’ve even been asked to write a book about it. It’s hard for me to imagine a shorter, more boring book. I always wanted the fairy tale of love and commitment just like everyone else; I just didn’t see why sharing the same four walls was a prerequisite. There, that’s it, and now I would have 79,975 more words to fill.)

  So, much of Gus’s divergence from everyday baby behavior didn’t seem that strange to us. So what if he couldn’t eat more than one food at a time, that if two were presented on his plate he would refuse to eat anything? Yes, it was true Gus first cried hysterically and then became catatonic when he heard certain sounds—the deep rumble of old elevators, for example. But what did that matter? When did slightly eccentric personal preferences become a pathology?

  During the next few years, my husband and I made great use of our favorite word: “quirky.” Gus was quirky. His slowness was a result of prematurity, as was his tiny size. I mean, if a kid is only fourteen pounds at nine months old, naturally things are going to take time. It was worrisome to see that at nine months he was barely a golanim (the Israeli word for babies who scoot on their bellies, a reference to the gun-toting soldiers in the Golan Heights war who moved by wriggling on the ground). Gus would eventually hit milestones but barely in the window where one wouldn’t have a full-on panic attack. So he walked—at eighteen months. He used the potty—at three and a half years. It wasn’t that he was lazy about using it or didn’t understand what it was for. He did. He would just shriek when he was led there. It was so bad, and we were so perplexed, that Henry joined the fray and would drag Gus to the potty himself. Then, when that maneuver failed, Henry would use the pot and tell us the leavings belonged to Gus. When Gus got a few words, he managed to convey this: the sound of a flushing toilet was an elephant waiting inside the potty to grab him and pull him in. So after a great deal of pointing and shouting “LOOK, NO ELEPHANT!” Gus used the potty and never had an accident again.

  But the words. It’s not that he didn’t have them. He talked late, but he did have some words by two years and continued to gain vocabulary. The problem was how he talked—that is, not to us.

  From an email to a friend when Gus was about eighteen months old:

  Gus doesn’t talk yet, but it’s like having a mynah bird around. He doesn’t imitate humans, but he imitates other sounds. He heard a siren go by tonight, and did a pretty good impression of one. He does the microwave “bing”, the refrigerator beep when the door is open. He’s more interested in imitating the machines around him than the humans. But I guess it’s good he’s a city child. Soon he’ll be doing car alarms, cars backfiring, buses emitting exhaust, drive-by shootings.

  Ha-ha-ha, my child is not interested in humans!

  In retrospect, it seems grotesque that I was glibly describing a quirk that was a big flashing neon sign for a more serious issue.

  Gus’s low muscle tone included his tongue, so he was very difficult to understand. But if he had been having actual conversations with us, it might not have been so distressing. Instead, he would greet me in the morning with a stream of words, directed perhaps at the closet or perhaps to my feet. And the words wouldn’t necessarily have anything to do with what was going on. For several years, until about the age of five, he would speak in monologues. They might involve jaguars or giraffes, or simply the letter K, because these were the things he was fond of. They would be phrases picked up from toys or the TV or maybe even some other person, meaningless in themselves and yet declared with great vivacity. This went on throughout nursery school, and even after he learned to use a computer. He would indicate if he wanted something, but there was zero reciprocity. John and I would tell ourselves Gus was just fine because he could read when he was three; we just ignored the fact that he didn’t understand what he was reading. (Many children with autism can decode words without comprehension. Who knew it was a Thing?) His language, too, was learned entirely by rote. Forget the sock puppet—if you really want to know if your child has autism, see how much he likes the announcements on public broadcasting. Gus’s first real sentence, apropos of nothing, was “Major funding for Bill Nye the Science Guy provided by the National Science Foundation, the Corporation for Public Broadcasting, and viewers like you.” Only it sounded more like “Ajorfudgforbillnyessssguy” because his tongue didn’t work.

  Before autism was considered a condition unto itself, it was thought to be a form of childhood schizophrenia, and it’s easy to see why: for years the relationship between reality and verbal expression for Gus was tenuous at best, and sometimes nonexistent. On the one hand Gus had many words for things, and seemed to know what those words meant, even if we didn’t. But the idea of repeating what I said, practicing the language, as kids typically do? No. In fact, it became very apparent that as much as Gus loved and still loves repetition in most arenas, no amount of repetition could make him do what I was doing.

  There may be a good reason for that.

  The old saying “monkey see, monkey do” comes from an interesting source: monkeys. In the early 1990s, it was confirmed by scientists studying monkey behavior that when the monkeys saw the scientists eating, they signaled that they wanted food, even though they’d eaten recently. Furthermore, the parts of the monkeys’ brains that signaled hunger were lighting up. (The scientists knew this because the poor monkeys had electrodes implanted in their heads. This is the kind of research that’s harder to pull off on humans.) The monkeys’ observation of humans eating (monkey see) triggered the same part of their brains as their own eating (monkey do). This phenomenon led researchers to discover that there are unique neurons in the frontal and premotor cortex called “mirror neurons” that help us learn behavior through copying. Mirror neurons may also make us suggestible to the behavior of others even when we don’t want to imitate them. Example: Your friend just yawned. Now, try not to yawn. See?

  In 2005, researchers at the University of California, San Diego, noted in the electroencephalograms (EEGS) of ten subjects with autism that the mirror neuron system didn’t “mirror” at all. Their mirror neurons responded only to what they themselves did, and not to what others did. The implications of a dodgy mirror neuron system are profound, since the mirror neurons are involved not only in Simon Says kind of actions (a game that mystified Gus utterly) but also in all manner of learning—everything from holding a spoon to reciprocal conversation to understanding the actions and emotions of other people.

  How
do you learn if you don’t copy? Well, in Gus’s case, eventually you do, but it might be on the thousandth repetition instead of the third or fourth. To this day Gus can’t brush his teeth properly without verbal prompts. No matter how many times I show him how to do it, he is mystified. As is often the case, TV and movies have come to the rescue. “FANGS,” I shout, and thanks to the Count on Sesame Street he knows to bare his canines and brush them. Tom and Jerry help out with my other command—“BULLDOG”—and he will thrust out his jaw and brush the bottoms. But when I demonstrate by brushing my teeth, there is always a fifty-fifty chance he’ll brush his face.

  * * *

  “Well, at least he’s not autistic. Right?”

  I cringe now when I think how often I forced all those well-meaning people—therapists, teachers, counselors, friends, babysitters, family members—to sympathetically grin through the required answer. It was the mental health equivalent of “Does my ass look fat in these jeans?” Because you know what? If you have to ask, your ass definitely looks fat in those jeans.

  Everyone—everyone—said “No.” The nursery school teacher at the fancy Manhattan preschool he got kicked out of at age four. The principal at the mainstream public school he went to for kindergarten at age five—which he flunked, even with a full-time aide. (Gus was so tiny and inattentive, one of the kids asked the teacher, “Why is there a baby in our class?”) Even when we realized he would have to repeat kindergarten, and he entered a for-profit private school for the learning disabled, we were not told he had autism. The diagnosis was “nonverbal learning disability,” meaning that he couldn’t understand communication that wasn’t verbal. Since no one had mentioned the A-word, I was all “Hey, that’s not that bad!” What was bad was that he got chucked out of that school, too, because I didn’t want to (A) medicate him at age six and (B) pay several thousand additional dollars a month (that I didn’t have) for an individual teacher to be with him at all times so he wouldn’t wander out of class.