To Siri with Love

by Judith Newman

  Henry, never missing an opportunity to complain, wondered why he had to go to “hard” public school while his brother got all the attention at the easy fancy private school. The public school was excellent. The private school was mediocre and its director, supercilious. Gus was asked to leave.

  After every debacle, I always had an excuse: Well, of course he got kicked out of preschool at four! He was deeply attached to a little girl with separation anxiety, and when she got upset he would go into a corner and refuse to interact with anyone. He was just extra sensitive! (Actually this was true, but most sensitive kids can still function. Gus couldn’t.) And of course he got kicked out of the school for learning disabled kids. He wasn’t on drugs like they were. (I am not at all antidrug. I was just antidrug for inattention in a child barely out of nursery school.)

  Gus was six when finally a kindly neuropsychologist told us Gus was “on the spectrum.” I don’t remember much about that day. I do remember that John—gruff, stalwart, very British—climbed into bed with Gus that night and sobbed.

  * * *

  In the ensuing months there were many tears for me, too, particularly around neuropsychological testing and schools. Neuropsych tests measure your child’s overall cognitive ability, as well as his areas of strength and weaknesses.

  When I tell friends I refused to look at the results, they are often shocked. They can’t quite understand the paralyzing fear that comes with some kinds of knowledge. This is the only thing I can compare it to: When I was a child I had a pet boa constrictor named Julius Squeezer. The downside of Julius: he ate live mice. Every week I would go to the pet store and bring home a fat mouse in a Chinese-food container. I would steel myself as I dumped the little guy into Julius’s terrarium. Sometimes the mouse tried to claw its way back into the box. It would evacuate its bowels in fear. When it landed in the cage, the mouse and Julius looked at each other and were very still. And then.

  Me facing facts is like that mouse facing Julius.

  While Gus’s diagnosis was devastating, it did point to a general direction for his education. And the first thing we had to do was get our “special” six-year-old into the right school. The neuropsych tests we went through were mandatory for placing your child in an “appropriate” setting in the New York City school system. Now we had a better idea what that would be for Gus. There are public programs and private programs. In public programs kids with a variety of disabilities tend to be lumped together: medical, emotional, and cognitive issues in one heady brew. And while I loved public school for Henry, I was horrified by the thought of Gus—sweet, guileless, utterly unable to stand up for himself—in any public school setting with kids with an unpredictable mix of medical, emotional, and cognitive issues. The Byzantine process for getting your child into many private special ed schools involves suing the city for funding for an “appropriate” education. You have to prove that the Department of Education does not have the resources to properly educate your child. The process is complicated, but it’s there, and for that I’m grateful to our city. Otherwise the choices were to find a way to come up with $62,000 for the appropriate school—“appropriate” being, among other things, what allows a parent to sleep at night—or put Gus into an inappropriate, potentially wildly inappropriate, school.

  You know things are bad when your attorney is hugging you.

  “That’s great, you just cry like that when you’re in the meeting tomorrow with the Department of Education,” said Regina Skyer, one of a handful of attorneys specializing in suing the DOE in New York City. I love Regina. For one thing, she is whip smart, and for another, she is extremely chic, the only American woman of my acquaintance who really knows her way around a scarf. But it is her job to paint your child’s situation as so dire that only the school you’ve decided on, whatever that is, can possibly accommodate him. Regina came to the DOE review meeting with me. She kept passing me notes in a kind of shorthand during the meeting, giving me talking points. My favorite, in block letters: “CHILD WILL BE IN JAIL WITHOUT APPROP ED.” I think I was supposed to say this out loud, but it’s hard to tell a roomful of strangers that you think your six-year-old is prison-bound without their help.

  Regina has been wonderful, and was instrumental in getting Gus into LearningSpring, an elementary and middle school especially for ASD kids. Still, to this day, I only have to walk into her office for the tears to start. At my most recent appointment, looking at high schools for a kid who the calendar said was twelve but who looked like he was nine and acted seven, she wrapped her arms around me and said, “You know, not everyone can be the first violin. There are many positions in the orchestra!”

  Yeah, I thought, but will my guy even be able to hold up that little triangle and go “Ting”? Because if he can, I’ll be very, very happy.

  * * *

  After Gus’s diagnosis and for the first few years, I was sure of many things. Starting with: there would be no real friends for my little boy. As long as he had my protection, or his brother’s, he wouldn’t be mistreated . . . but what if something happened to us? The milestones of a life well lived—parties, dates, first job, first love—would be foreign to him. He would forever be the one who missed the joke.

  Discovering your child is on the spectrum is like being a regular dude in Men in Black, blithely unaware that half of your fellow citizens are from another planet. Before the kid, what was an autistic person? After the kid—it’s like, they are everywhere, but not everyone sees them. But once I could see, there were nights of pain. Not for him or myself, exactly. More like collateral anguish. The children in my past. If I had only known then.

  I remembered passing a little girl wearing a bright red wool coat with sleeves and neck lined with rabbit fur. Alexandra Montenegro. Your wealthy parents dressed you so well, perhaps hoping that with the rabbit coat, the poufy velvet dresses, the white stockings, and patent leather Mary Janes you would blend in. You did not blend in. I hear your screams of frustration as the girls in the playground stripped you of that coat you were so proud of. You crouched on the concrete pavement, hands over your ears, screaming and slamming your fists on the ground as they danced around you, keeping the coat out of reach and imitating your garbled voice. The pebbles mashed into your white stockings; the scrapes on your arms began to bleed. Where was our teacher? (Only later, as teenagers, did we find out she was having it off with the principal, the Dickensian Mr. Snodstock, during recess.) This was one of those dopey private schools where a check bought admission. But, Alexandra, why did your parents, so hopeful and clueless, insist on sending you to a school where you’d be known as the retard? When the tormenting began, I would walk to the far side of the playground and pretend to study the weeds that sprouted through the cracks in the pavement. I never took part. But I did nothing to stop it, nothing at all.

  Then public high school. Timmy Stavros. Jesus, Timmy, what were your parents thinking? They let you out of the house unwashed, smelling like a sewer, pants so tight you could always see the bulge, black hair slick with grease, skin so ravaged it was more like pimples that had a little surrounding skin than vice versa. You must have been going to classes, but it seemed to me that you just existed outside the school, on the perimeter, wandering and circling, like a junkyard dog. Guys were always sending you on pointless errands, just to see you scurry off obediently; you must have spent half your life looking for the janitor to report nonexistent problems in the school bathroom.

  And the girls? Most just laughed; I heard one ask you for a date, then turn to her friends, cackling hysterically, and walk away. You were hormones on legs, staring hungrily, talking to no one. I was scared of you, but I vowed to myself this wouldn’t be like Alexandra. So I’d say hello. That’s it, just hello. I was doing it for myself, not you, and I was such a nonentity I thought you wouldn’t even notice. You noticed. You’d wait for me outside classes. Your mouth would open a little, strands of saliva lingering for a second; you might bark four or five words that I couldn’t understa
nd. Then you’d bolt in the other direction, books clutched to your chest. You ran like a cartoon character, body bent at the waist, legs spinning, kind of like the Road Runner with acne and a perpetual boner.

  What was it like when you went home to your parents at night? Did you tell them you had a nice day?

  Some people Google-stalk their old boyfriends. I Google-stalk Alexandra and Timmy. Timmy still lives in his parents’ home in the suburbs. Alexandra seems to have disappeared. Alexandra, I want so badly to apologize. I hope you see this.

  Two

  Why?

  Here’s the game I played with myself when I was pregnant: if something was wrong with my child, what abnormality would I be able to tolerate, and what was beyond the pale? (As you can see, I don’t rate an A-plus on the Basic-Human-Decency Report Card.) Generally, a physical problem would be OK. If my baby lacked a body part, if he was too small or too big or had one eye in the middle of his forehead, I would cope. There was surgery; there was improvement. But when I thought about any kind of mental deficiency, I was lost. Not intellectual? What would be the point? There is no real life without a life of the mind.

  Then I had Gus.

  Like every other parent of a kid with a disability, I’ve given plenty of thought, usually at four a.m., to why Gus has autism. Add to that the Internet, which gives me plenty of possible reasons. Like these:

  Because my husband is old. John was sixty-nine when Gus and Henry were conceived. We all know about the problems of old eggs, but old sperm—or, more accurately, new sperm manufactured by old guys—isn’t doing us any favors, either. A May 2016 report in the American Journal of Stem Cells found that children of men over forty are almost six times as likely to develop autism as those of men under thirty, as well as being at higher risk for Down syndrome and heart defects. The increased risk is thought to involve a buildup of gene mutations in the sperm of older fathers.

  Wait. Above forty is considered “older”? Hey, how about almost seventy? How does that work out?

  Because I was old. I was forty when Henry and Gus were born. There is increasing evidence that older mothers are also more likely to have children with ASD, because of not only the chromosomal changes in older eggs but also some kind of environmental aging changes in the uterus. Great. As if having saggy tits weren’t punishment enough.

  Because I was fat. OK, not fat. But certainly not svelte. And large epidemiological studies have shown that maternal obesity and gestational diabetes have been found to increase the rate of autism in children.

  Because I had twins via IVF. Apparently it’s not so much the in vitro fertilization, per se, since there is no increased risk of autism in a single birth. But when twins or triplets result from IVF, there is a higher incidence of one of the children having autism, leading researchers to believe, again, that uterine environment as well as genetics plays a role.

  Because I was a vitamin junkie. Once I got pregnant, I was a little selective about the nutritional rules I obeyed. I nobly gave up smoking and sushi, having never tried either to begin with. I stopped drinking, because I could, and also because I was throwing up all the time and almost never even wanted it (though on the few occasions I did, I would just read something reassuring and French). But when it came to rules I could follow that didn’t involve sacrifice, I was all for them, which is how I started downing prenatal vitamins like Skittles. Essential for staving off birth defects! I was on it! But wait, I recently discovered that according to research conducted by the Bloomberg School of Public Health at Johns Hopkins, high levels of folic acid at birth are associated with a rate of autism double the average. And very high rates of B12, also in prenatal vitamins, triple the chances the offspring will develop ASD. And what if you have very high rates of both? Good times. The chance that you will have a child on the spectrum, according to this 2016 study, increases 17.6 times.

  Because of 9/11. September 11, 2001, was the date the World Trade Towers fell. September 25, 2001, was the day Henry and Gus were born. My home is about a half mile from where the Towers stood. Although I was hospitalized farther uptown for the last few days of my pregnancy, I lived for almost two weeks with the rancid metallic stench of the detritus of those fallen buildings. A 2014 study by researchers at the Harvard School of Public Health found a strong link between autism and in utero exposure to air pollution: the risk of autism was doubled among children of women exposed to high levels of particulate air pollution during pregnancy. Sooo . . . I was exposed at the end of the pregnancy, not the beginning, when one would think structures of the brain are forming. But who knows.

  Because there is something weird about John. As long as I’ve known my husband, he’s been an opera singer. But in his twenties, before he realized he could make money by opening his mouth and belting it out, he was an electrical engineer. According to a series of British studies, the children of engineers are about twice as likely to have children with autism, and even the grandchildren of engineers are more commonly affected. Autism has clustered around major engineering centers, like Silicon Valley; Austin, Texas; and Boston’s Route 128 Technology Corridor. Why would engineers produce more autistic children? Well, it’s not that they are engineers, per se; it is that they are “systematizers”—the kind of people who see the world in predictable, repeatable, law-governed patterns. The other pole in human behavior are “empathizers,” those who see the world’s events as more random, and more governed by the vagaries of human emotion. So whereas an empathizer might come to a crime scene and ask first, “What’s the killer’s relationship to the dead person?,” a systematizer would want to solve the crime based on blood-spatter patterns and bullet trajectories.

  Everyone’s outlook on life falls somewhere on a continuum, of course. But engineers and their ilk are at the farther reaches of the systematizer side of the spectrum—and so are autistic people. Emotional motivations might be a little more mysterious to them, as anyone who’s ever been involved with an engineer (or computer programmer, or basically any guy who works in a lab) can attest. I remember one date in graduate school with a boy who later became one of the leading experts in the country on virtual reality. I produced these body paints I thought we’d try out. Did I mention I was nineteen? Anyway, he was very interested—in the chemical composition of the paints. How long would they take to dry when applied? Were they actually edible or merely nontoxic? And would they retain their pigment once painted on a reactive canvas like skin? You can imagine how well that date went.

  My point is, engineers are not known for their mad dating skillz, and in prior centuries they might not have found mates. But Simon Baron-Cohen, director of the Autism Research Centre at the University of Cambridge, theorizes that part of the reason for the rise in autism levels is that people who are socially inept are more likely than in days gone by to find partners and breed (thanks, Tinder)—often with women who are similarly technologically gifted but socially awkward. Thus, the rise in the number of children who, in Baron-Cohen’s parlance, are systematizers—sometimes leading to extraordinary talents, sometimes extraordinary disability. And sometimes both.

  John has a son, Karl, from a previous marriage. Karl is in his sixties, considerably older than I am. He is a wonderful painter, local historian, and old-bottle collector who doesn’t have a phone, let alone a computer. He knows everyone in his small village in Northern England, but has no close friends. When John goes to England twice a year, there’s no need to make arrangements to get together with his son. John just turns up at the pub Karl has been going to every Saturday night for the past forty years and finds him there. Karl lived with his mother, John’s former wife, until the day she died. He never married, never had a girlfriend or boyfriend. He seems content.

  “In England during that time, one never considered that,” John said to me recently.

  I wonder about John. I’ve asked him repeatedly if he might take a short psychology test called the Autism Spectrum Quotient. He is always too busy.

  Because ther
e is something weird about me. People with ASD often have a sensory system that doesn’t function properly, either underreacting or overreacting to stimuli in the environment. Exactly how the brain malfunctions is a little unclear. It has something to do with the interaction between the sensory receptors of the peripheral nervous system (the body minus the brain and spinal cord) and the central nervous system itself. But sometimes one person can be both overreactive in some circumstances and underreactive in others. Gus is overly sensitive to heat: he wants all his food at room temperature, and washes in cool water that most of us would find too cold. On the other hand, he is underreactive in his sense of space: he still knocks into people on the street, and would talk to me about two inches from my face if I weren’t constantly grabbing his shoulders and pushing him back. To a lesser but still marked degree, I have the same problems. My entire morning can be ruined if I touch something sticky. I have a sizable collection of unused gift cards for massages from well-meaning friends who don’t know my rule: if I’m not having sex with you, I don’t want to be touched. And when I’m sick I often have synesthesia, a scrambling of the senses where sights, sounds, and tastes can become peculiarly jumbled. So when, for example, I was pregnant and nauseated I had to keep my eyes closed and lie still every morning. I had red bedroom walls, and if I looked at them, I could smell and taste rotting meat.

  Because I was a mess. Until this year there were studies showing a weak link between taking antidepressants and an increase in children with ASD. Now, it seems, Massachusetts General Hospital has debunked that link. But there is still a correlation between depression and anxiety in mothers and ASD. I did not take antidepressants. But maybe I should have, since I was in a perpetual state of dread. Money worries; constant nausea; a sense that I did not have the patience to be a mother to one, let alone two; an aging husband who did not buy my argument that “If Larry King could do it in his dotage, so can you”—all of these added up to a deeply unhappy pregnancy. Was overseepage of cortisol, the stress hormone, wreaking havoc with Gus’s teeny brain? And even now, sometimes I see a direct correlation between this time in my life and his own irrational fears. Every time Gus hides in the closet during a thunderstorm, I think, If only I had taken pregnancy yoga.